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Re-cognizing Power in the Culture of Dementia Care Knowledge
Ryan DeForgeRelated Papers
Journal of Aging Studies
They're still in control enough to be in control”: Paradox of power in dementia caregiving2008 •
2013 •
The Journals of Gerontology Series B: Psychological Sciences and Social Sciences
Dementia Care at the Intersection of Regulation and Reflexivity: A Critical Realist Perspective2011 •
Journal of Aging Studies 65, 101141
The ethnographer, the research participants, and the meaningful others: Gray zones of relationality and the ethics of dementia care research2023 •
The debate on the ethics of dementia research has tended to treat individuals with dementia, primary caregivers other family members and local communities as preestablished and distinct categories of research participants. What has been overlooked are the meaningful social relationships that run through these categories and how these relationships affect the ethnographer's positionality during and after fieldwork. In this paper, drawing on two cases of ethnographic research on family dementia care in North Italy, we propose two heuristic devices, "meaningful others" and "gray zones", which highlight the ambiguous positionality of ethnographers in care relations and local moral worlds. We further show the benefit of incorporating these devices in discussions on the ethics of dementia care research: by rendering problematic any fixed and polarized positionality of the ethnographer, these two devices allow for a voice to be given to the individuals who represent the main research focus while addressing the interdependence and ethically nuanced dimension of caring relations.
2014 •
Annals of Palliative Medicine
Relational approach to ethics and quality improvement in institutional care for people with dementia2019 •
Patient-centered care is becoming one of the primary targets in treating people with dementia. The current study aims to explore some of the advantages of conducting ethnographic observational research to investigate staff behaviors in clinical settings treating patients with dementia. Furthermore, one of the significant motors of quality of care for dementia is a successful partnership in multidisciplinary teams and teamwork. However, to create policy paper to regulate group skills and behaviors, standard interviews and quantitative research might not help in discovering target manners, attitudes, and skills especially if there are strict regulations that penalize professional negligence. The same applies for capturing personal accounts on behaviors by using standard interviews. In this case, the actor of targeted actions and skills might not like to disclose personal errors for fear of retaliation. Hence, ethnographic research by a participant observer might be the only viable option in capturing teamwork and organizational behaviors in dementia care. The writer works in dementia wards in a clinical role, therefore, by regular participation into wards and clinical activities he was able to outline the required policies and principles regarding behaviors in patient-centered care.
Dementia is a challenging, progressive set of conditions which present a large care burden to informal, familial carers. A complex array of health and social care services are needed to support people living with dementia. Drawing on the interlinked ‘Duties to Care’ and ‘Dementia Talking’ projects, in this article we focus on British carers’ talk about health and social care services. We explore data from a mixed-method questionnaire (n = 185), four focus groups and eleven interviews with informal carers of people living with dementia using thematic discourse analysis. Three themes are discussed: (1) services as a ‘maze’; (2) services as overly limited – ‘beyond our remit’; and (3) the battle and fighting discourse deployed by these carers. Our analysis highlights that carers find navigating systemic issues in dementia care time-consuming, unpredictable and often more difficult than the caring work they undertake.
Journal of Social Work
Constructing Dementia and Dementia Care2005 •
Summary: This article explores the ways in which dementia can be constructed and maintained by the actions, and received ideas concerning dementia, of social care staff practising in a local authority day care setting in the UK. The article is set within the context of ‘daily practice’, the things that we do forming the basis of how things may be (re)defined. Findings: The study suggests that the physical environment of the day care setting, the routines and activities provided and the practices of care staff indicate three particular ways in which dementia was constructed. These comprised ‘holding and homogenizing’,‘demarcating and distancing’ and ‘caring and controlling’. Each depended on individual approach, training and experience and was influenced by ‘received’ traditional approaches. Applications: This is important to our understanding of dementia care as we seek to recognize diverse experiences and to consider pluralistic approaches to best practice in dementia care. The stu...
Western University
Scholarship@Western
Electronic Thesis and Dissertation Repository
11-4-2013 12:00 AM
Re-cognizing Power in the Culture of Dementia Care Knowledge
Ryan T. DeForge, The University of Western Ontario
Supervisor: Drs. Anita Kothari, The University of Western Ontario
Joint Supervisor: Catherine Ward-Griffin, The University of Western Ontario
A thesis submitted in partial fulfillment of the requirements for the Doctor of Philosophy degree
in Health and Rehabilitation Sciences
© Ryan T. DeForge 2013
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Re-cognizing Power in the Culture of Dementia Care Knowledge
(Thesis format: Integrated Article)
by
Ryan Thomas DeForge
Graduate Program in Health and Rehabilitation Science
A thesis submitted in partial fulfillment
of the requirements for the degree of
Doctor of Philosophy
The School of Graduate and Postdoctoral Studies
Western University
London, Ontario, Canada
© Ryan DeForge 2013
Abstract
In light of increasing system demands, system regulations, and constrained
resources, those living and working with dementia in the long-term care sector are
vulnerable to oppressive care practices. This is true so long as our understanding of how
social power affects the ways in which dementia care knowledge is created, shared, and
enacted remains limited. Based on prolonged field observations and on informal and
formal interviews with care recipients, family members, and staff, the aim of this critical
qualitative research was to examine the culture of dementia care knowledge in two sites:
a specialized dementia care unit in a long-term care home, and an affiliated adult day
program.
Three key insights arise from this study. The first is that normalizing
inclusiveness in generating dementia knowledge is akin to democratizing hierarchical
relationships in long-term dementia care work environments; the more that knowledge is
co-constructed under ethical conditions of discourse, the more point-of-care staff can
contribute to care planning and provision. Second is the temporal distinction between
two prominent yet somewhat contradictory care norms: that of contextualizing a
responsive behavior, and that of using force to complete daily care tasks. These coexisting care routines not only contest one another, they manifest along different
timelines. Third, care providers and recipients can benefit from a three-pronged approach
to generating dementia care knowledge wherein an iterative pattern of internalizing,
externalizing, and socializing care knowledge yields collectively held organizational
knowledge.
ii
This study reconceptualizes “culture” in ways that consider the broader (often
oppressive) social forces at play in constituting dementia care knowledge. In addition to
its methodological contributions to critical qualitative health research, the study’s
implications are relevant to those who espouse ethical and non-coercive dementia care
practices, and to knowledge translation scholars who appreciate that as a part of context,
the knowledge culture needs to be understood in terms that make clear the influence of
social power among and between the culture’s constituents and the intervening
knowledge translators.
Keywords: dementia, long-term care, adult day program, knowledge translation,
knowledge creation, critical qualitative research
iii
Co-Authorship Statement
This dissertation was written under the co-supervision of Dr. Anita Kothari and
Dr. Catherine Ward-Griffin, who will be co-authors on publications arising out of
chapters four, five, and six.
iv
Acknowledgements
I am indebted to Dr. Anita Kothari, who, as my primary supervisor, allowed me to
grow at my own pace and in my own directions while succeeding in also in curbing my
appetite to absorb and integrate so many new perspectives into my work. I appreciate also
the way in which she looked out for my personal wellbeing, making sure always that I
thought carefully about how to strike that seemingly mythical balance between
school/work and Life. I am also immeasurably indebted to my co-supervisor, Dr.
Catherine Ward-Griffin, whose proclivity for digging deeper and for unpacking and
orchestrating critical insights both drove and inspired me to do the same. Moreover, the
training opportunities she afforded me were essential to my development and growth as a
scholar. I am also grateful to Dr. Lorelei Lingard for her support and advisement. I look
forward to continued relationships with all of these outstanding researchers, and will
continue to be forever grateful for their mentorship.
I cannot adequately express how grateful I am for the support and understanding
of my wife Janine. My doctoral studies threw our relationship and me for more than a
couple loops, and yet our ‘no matter what’ love for each other continues to flourish. That
you love me for the person I am and not necessarily the scholar I am makes me
ridiculously happy and fortunate.
To my dear friend and close colleague Dr. Jay Shaw: Thank you, thank you, thank
you for your support and friendship, and for being tireless in pitting and pursuing all of
our reflexive considerations. I can’t wait to find out what we’ll do together next!
I am immensely grateful to the clients, residents, family members and staff of the
care organization that participated in this study.
v
Finally, not every indelible moment that one experiences while getting a PhD
actually makes it into the final dissertation. To that and those who have been erased from
the text, I forever acknowledge your everlasting presence.
vi
Table of Contents
Abstract ............................................................................................................................... ii
Co-authorship statement .................................................................................................... iv
Acknowledgements..............................................................................................................v
Table of contents............................................................................................................... vii
Chapter One: Introduction: Four Ways to Start a Dissertation............................................1
Introduction #1 - An 8th Moment’s Quilt.................................................................2
Introduction #2 - Deconstructed Truth-telling: Music to our ears ...........................8
Introduction #3 - Confessional Truth-telling: Life as my CAGE ..........................16
Introduction #4 - Theoretical Truth-telling: Critical Tacking between Experience
and Theory .............................................................................................................19
References..............................................................................................................25
Chapter Two: Review of the Literature .............................................................................28
Long Term Care in Ontario ...................................................................................33
Dementia Care Practices in Long-term Care .........................................................34
Existing KT Strategies in Long-term Dementia Care............................................37
Relational KT: Networks, Needs Assessment, and Knowledge Brokering...........42
(Newer ways of thinking about) Best Practices in Translating Best Practices in
Dementia Care Research........................................................................................46
PIECES and GPA ..................................................................................................49
(A lack of) Engagement of/with Point-of-care knowledge....................................53
Seeing with (Critical) Ethnographic Eyes..............................................................57
Critical Ethnographic Knowledge Translation ......................................................66
Rationale for this Ethnographic LTC Project ........................................................71
Statement of Aim and Research Questions............................................................73
References..............................................................................................................75
Chapter Three: Theoretical Orientation: Establishing a Critical View and Addressing the
Triple Crisis of Representation ..........................................................................................94
Part 1: Carspecken’s Critical Values and Ways of Knowing, and the Influence of
Habermas ...............................................................................................................94
Critical Values ...........................................................................................95
Critical Ways of Knowing .........................................................................98
The Influence of Habermas......................................................................100
Part 2: The Triple Crisis of Representation .........................................................106
On Re-presentation ..................................................................................107
On Legitimation .......................................................................................111
On Praxis..................................................................................................116
References.............................................................................................................119
Chapter Four: ‘Critical Qualitative Research’ in Long Term Dementia Care.................122
vii
CQR in Health Care Research .............................................................................125
Data Collection ....................................................................................................129
Description of the Two Sites................................................................................129
Creating the Primary Record ...............................................................................131
Creating the Reconstructed Record .....................................................................142
Hermeneutic Reconstructive Analysis Applied to a Sample Strip of Data .........151
Reflecting on Reconstructive Sense Making en route to Study Findings............158
Conclusion ...........................................................................................................162
References............................................................................................................163
Chapter Five: Re-cognizing Social Power in Reading and Interpreting People with
Dementia in Long-term Dementia Care...........................................................................167
The Context and Culture of Exchanging Dementia Care Knowledge.................170
Methodology........................................................................................................173
Ethical Considerations .............................................................................174
Participant Recruitment ...........................................................................174
Data Collection ........................................................................................175
Data Analysis ...........................................................................................177
Rigor ........................................................................................................179
Findings................................................................................................................180
Reading and Interpreting a Person with Dementia .................................180
Power Theme 1: Democratic Co-construction of Knowledge ................184
Power Theme 2: Unjust Distortion and Exclusion of Knowledge ..........188
Power Theme 3: Normalizing Inclusiveness in Generating Knowledge 191
Discussion ............................................................................................................195
Attunement ..............................................................................................196
Power in Dialogic Exchange ...................................................................198
Implications .............................................................................................203
References............................................................................................................206
Chapter Six: Reconstructing (Responses to Responsive) Behaviors in Dementia Care by
Re-cognizing how Social Power Interacts with Tacit and Explicit Knowledge .............214
On Tacit and Explicit Knowledge Translation ....................................................217
Methodology........................................................................................................220
Ethical Considerations .............................................................................221
Participant Recruitment ...........................................................................222
Data Collection ........................................................................................222
Data Analysis ...........................................................................................224
Rigor ........................................................................................................224
Sample......................................................................................................226
Findings................................................................................................................227
Observed Responsive Behaviors..............................................................227
Staff Members’ Responses to Responsive Behaviors..............................230
On the Use of Force ................................................................................232
viii
Externalizing Knowledge to Contextualize Responsive Behaviors.........238
Internalizing Knowledge to Contextualize Responsive Behaviors..........242
Socializing Knowledge to Contextualize Responsive Behaviors ............247
Discussion ............................................................................................................253
Implications for Empowering Therapeutic Relationships with Dementia
Care Knowledge.......................................................................................255
In Closing.............................................................................................................258
References............................................................................................................260
Chapter Seven: Discussion ..............................................................................................265
Methodological Limitations and Reflections.......................................................266
Strengths ..................................................................................................267
Limitations ...............................................................................................268
The Utility of CQR ..................................................................................270
Summary of Study Findings ................................................................................272
Summary of Key Insights ....................................................................................275
Implications of Key Insights................................................................................278
Future Research ...................................................................................................283
Conclusion ...........................................................................................................286
References............................................................................................................288
Tables, Figures, and Appendices .....................................................................................293
Table 4.1 – Four RAI-MDS Outcome Scales – SCU Residents.........................295
Table 4.2 – Data Collection .................................................................................296
Table 4.3 – Ten Most Prominent CQR Code-Categories ....................................298
Table 4.4 – Tem Most Prominent Emergent Code-Categories............................303
Table 4.5 – Sample Meaning Field Reconstruction.............................................307
Table 4.6 – Interview Topics ...............................................................................309
Table 5.1 – Participants Enrolled.........................................................................311
Table 5.2 – SCU Residents’ Age, Gender, Time since admission, and
Diagnoses.............................................................................................................313
Figure 4.1 – Basic Floor Plan of SCU .................................................................315
Figure 4.2 – Basic Floor Plan of ADP .................................................................316
Figure 4.3 – Carespecken’s (1996) Conceptual and Analytic Elements of a Social
Act in CQR ..........................................................................................................317
Appendix 5.1 – Do you know who gets along? ...................................................318
Appendix 5.2 – You spend more time with her than I do....................................322
Appendix 5.3 – Normally I would have left her, but down here .........................326
Appendix 5.4 – I don’t believe that .....................................................................330
Appendix 5.5 – Nursing is only as holistic as you make it..................................333
Appendix 5.6 – We’re working on developing a relationship with him..............337
Appendix A – Letter of Information (Staff version) and Consent Form .............341
Appendix B – Curriculum Vitae (November 2013) ............................................347
ix
1
– Chapter One –
Introduction
Four Ways to Introduce a Dissertation
2
Introduction #1 – An 8th Moment Quilt
The same material can be written for different audiences … that’s why it is called
material. Like wet clay, it can be shaped and reshaped. Writing in standard ways
does not prevent writing in other ways. Most important, understanding how to
rhetorically stage a dissertation or journal article increases the likelihood of its
acceptance. Even radical messages can be published in conservative journals, if
the writer follows the rules (Agger, 1989). Consequently, deconstructing
traditional writing practices is a way of making writers more conscious of writing
conventions and, therefore, more competently able to meet them and to get their
messages into mainstream social science (Richardson, 1997, p. 93).
I want to begin by unpacking a metaphor that I have elected to use to hold this
dissertation together – that of a quilt. In the introductory chapter of their Handbook of
Qualitative Research, Denzin and Lincoln (2005, pp. 4-5) describe the qualitative
researcher as one who invariably pieces together a “set of representations that is fitted to
the specifics of a complex situation” and who “uses aesthetic and material tools” in doing
so. Such a quilt-maker “stitches, edits, and puts slices of reality together. This process
creates and brings psychological and emotional unity – a pattern – to an interpretive
experience,” allowing different voices and perspectives to “simultaneously create and
enact moral meaning.” Researchers as quilt-makers “move from the personal to the
political, from the local to the historical and the cultural. These are dialogic texts. They
presume an active audience. They create space for give-and-take between reader and
writer.”
3
Moreover, I elected to use quilting as a metaphor to re-present this work because I
have found my data collection and analyses to have followed particular threads of
thought, threads that I have had to carefully pull, follow, and weave back into a
synthesized understanding of where and in which light they are prominent and visible, or
more tricky, where they are hidden beneath the fabric of these participants’ culture. I
recognize too that in my interpretations, my own history, biography, gender, social class,
race, and ethnicity are complicit in determining what insights I am privileged (or,
allowed) to see. That is not to say that I feature myself in this quilt, but rather to point out
that it is indeed a particular ‘me’ who has stitched together images and representations of
‘dementia care knowledge.’ And while I will perhaps think of a better name for this quilt
later, for now I will refer to it as an 8th Moment Quilt. As I unpack the 8th moment, below,
you will begin to see the fabric of this dissertation take shape.
Denzin and Lincoln (2000, 2005, 2012) have traced the history of qualitative
research in terms of its ‘moments.’ In the most recent penning of these moments (2012),
they list eight. It is beyond the scope of this Introduction to detail that which
characterizes each, but ever so briefly: the first moment (1900-1950) is known as the
traditional; the second (1950-1970) as the modernist; the third (1970-1986) as blurred
genres; the fourth (1986-1990) as the crisis of representation; the fifth (1990-1995) as the
postmodern or experimental; the sixth (1995-2000) as the post-experimental; the seventh
(2000-2010) as the methodologically contested present; and the eighth moment (this
moment) as the future, “which confronts the methodological backlash associated with the
evidence-based social movement. It is concerned with moral discourse, with the
development of sacred textualities. The eighth moment asks that the social sciences and
4
humanities become sites for critical conversations about … freedom and community” (p.
3). These eight moments trace out the evolving focus of qualitative research – from
objective, colonizing accounts that reflect the positivist scientist paradigm to an era of
concern with practices of rigour, infused later with reflexivity; from doubts about if/how
‘reality’ could ever be represented in qualitative research findings, to considerations of
how to evaluate and interpret – how to make legitimate – qualitative research. And
indeed, in these ‘future and present moments’ of methodological contestation and of
questioning what exactly constitutes research-based evidence, ethics, democracy, and
inclusion in moral discourse have become the focus. As Denzin (2003) asserts, this is the
“moment critical social science comes of age and becomes a force to be reckoned with in
political and cultural arenas” (p. 259). It is with this moment in mind that I refer to these
research findings as an 8th Moment Quilt – for as you will see, the topic of this
dissertation, the culture of dementia care knowledge, is replete with ethical quandaries to
redress; such redressing is a politically charged and performative task, made all the more
complex by the subtle taken-for-grantedness of many dementia care practices.
Thus, this dissertation re-presents in a quilted fashion a critical commitment to a
purposeful theory of praxis – that is, a purposeful commitment to reflect and act upon the
world in order to transform it (Freire, 1972, p. 128). Such a commitment “involves the
rejection of the historical and cultural logics and narratives that exclude those who have
been previously marginalized. This is a reflexive, performative ethnography. It privileges
multiple subject positions, questions its own authority, and doubts those narratives that
privilege one set of historical processes and sequences over another” (Denzin, 2003, p.
268; McLaren, 1997). It draws strength from pedagogies of hope (McLaren, 1997; Freire,
5
1999) and ethnographic imagination (Willis 2000), and understands that meaning is
produced and contested in the places where people live, and that all meaning-making is
filtered through discursive systems of representation: media, popular, and scientific
discourses, among many, filter, “shape, and give meaning to the lived experience within
specific historical moments” (Denzin, 2003, p. 266). As a rhetorical device, a quilt offers
the means by which to re-present the hopeful, imaginative and political aims of the 8th
moment.
Why Four Introductions?
To help locate the theories of knowledge and of research design that inform this
study – that is, to help locate this study’s epistemological and methodological/analytic
position – I have imagined myself in performative dialogue with (you and with) Denzin
(2003) as he follows Foley (2002), Marcus (1998), and Tedlock (2000) in distinguishing
at least three types of reflexive ethnography: confessional, deconstructive/postmodern,
and theoretical. Introductions 2 and 3, respectfully, are instances of deconstructive and
confessionary reflexive ethnography, while Introduction #4 invites the reader to engage
in theoretically reflexive ethnography.
The deconstructive introduction (#2: Music to our ears), is designed to be
unsettling; it deconstructs any attempt at objective ethnography that might be
characterized with stable researcher and participant identities, and instead pens a space
where the reader, perhaps driven by aesthetic angst, can make his/her own interpretations
about What’s going on here? With/in such an ambiguous space, my ethnographic I/eyes
forfeit my own authority (Kincheloe & McLaren, 2000; Denzin, 2003), or perhaps worse,
6
belie relativism. Yet in getting lost in the ruins of knowledge (Lather, 2001), I allow
myself to maintain a commitment to indeterminate, evocative, poetic accounts of reality
(Foley, 2002), and hold to a radical pedagogy that aims to make real a militant, utopian
vision of the future (Denzin, 2003). However unconventional, or more aptly, because
postmodern reflexivity is so unconventional, it is found right at the tip of the cutting edge
of ethnographic political practices.
Life as my CAGE (Introduction #3), in contrast, is a for-instance of confessional
reflexivity, characterized by the Othering of my Self, by introspection that looks through
the navel to query (not if but) how one’s Self impacts one’s science (Ellis, 1995; 2004).
Proponents of confessional reflexivity suggest that the genre openly invites subjectivity
and a focus on caring and empathizing with research subjects rather than appropriating
their lived experience in the name of generating knowledge or theory (Ellis & Bochner,
2006). Moreover, in re-cognizing the author as a “living, contradictory, vulnerable,
evolving multiple self who speaks in a partial, subjective, culture-bound voice,” one can
“undermine grandiose authorial claims of speaking in a rational, value-free, objective,
universalizing voice” (Foley, 2002, p. 474). I am trying to not be so grandiose. Rather, in
offering evocative prose that might break then (perhaps) repair your heart (Ellis, 1995;
Behar, 1996), the vulnerable author engenders vulnerable readers. Yet critics of
confessional (auto)ethnography suggest that any such navel-gazing, even that which
informs and locates and invigorates the research, is still just navel-gazing (Coffey, 1999).
This reminds me to remain aware of how readily such introspection can be perceived as
‘soft science,’ but, as in Introduction #3, I hold fast to its values of compassion, empathy,
and self-awareness.
7
Tacking Between Experience and Theory (Introduction #4) introduces the third
kind of ethnographic reflexivity that Denzin (2003) writes of, theoretical reflexivity, and
announces that this dissertation is, by and large, of that sort. Indeed, the works of the
scholar whom I have followed in developing and carrying out this dissertation, Phil
Carspecken (1996, 2001), are readily characterized as being theoretically reflexive. As
you will see, this is because Carspecken tacks back and forth between systematically
collected field data and the epistemological theory of communicative action that he has
derived from Habermas (1985). Insofar that such theoretical reflexivity relates to ways of
knowing, the related question of what is there to know, that is, the question of my
ontological position, is answered in a similarly critical vein: I subscribe to a more
constructivist ontology wherein historical cultural forms and practices (read: structures)
exist beyond the consciousness of ordinary people (Foley, 2002). My epistemological
stance encourages tending to that taken-for-grantedness with a critical value orientation
that aims to illuminate, to raise consciousness, and to emancipate: nothing has to be the
way it is; it can change; the oppressive, inequitable living and working conditions in
long-term dementia care should change. Theoretically reflexive ethnographies, including
this one, ultimately seek to offer a convincing and reasonably authoritative account of
how and why things are as they are, and to re-cognize how things might be.
Thus, in order to enact this 8th Moment’s politically charged, civic, democratic,
introspective, confessional, performative and pedagogical ethnography, I have introduced
three kinds of theoretical reflexivity. I have done so (i) to strengthen this dissertation with
robust yet varied reflexivity, and (ii) to contrast theoretically reflexive ethnography with
the other two kinds of reflexivity. In sum, I will and do feature theoretical reflexivity in
8
this dissertation, but while I do so, the threads by which I quilt together a blanket of
whole understanding belie a confessional, fragmented, and poly-vocal nature. And a
political nature – a radical political nature (Denzin, 2003), for indeed, current
conceptions of long-term dementia care (sometimes naively) reproduce unjust,
oppressive, and, resignedly, inevitable life (and work) conditions. We need to radically
re-cognize the political nature of long-term dementia care.
Introduction #2 – Deconstructed Truth-telling: Music to our ears
During a field visit to my research site – a long-term care home and its adjacent
adult day program – I interviewed a registered practical nurse (RPN) behind the closed
door of a conference room attached to the specialized care unit where 32 people with
advanced dementia reside. While I interviewed the RPN, many of the residents were
gathered in the common area on the other side of the door to take in the Wednesday
afternoon entertainment: a man and his guitar. When I later transcribed the interview, my
attention waned as I paused to listen to what song was being sung; I felt as though I was
in some way able to relate to the residents listening to this music during these same
moments that I sat listening to the RPN talk about providing dementia care. I was
immediately and newly struck by the richness of the audio recording, replete as it is with
both dialogic interview data and a kind of auditory conduit to what some of the people on
the floor may have heard, may have been thinking, and/or may have been feeling. Indeed,
one of the findings from my research exploring the culture of dementia care knowledge in
this setting relates to the use of music an as intervention to help residents feel relaxed and
to enjoy an activity that was meaningful. So, I began inserting into the transcription the
9
names of the songs I could hear being played as I spoke with the RPN. In reading and rereading textual excerpts from my, her, and the residents’ lived (musical) experience, I can
tack back and forth between their ears and mind, and between differences of meaning.
I decided to feature this moment in the introduction of this dissertation for three
reasons. One is that this RPN was very much a key informant during my research: she
was full-time, experienced, trusted, and respected. What she shared with me was both
candid and reflective of some of the key issues pertaining to the culture of dementia care
knowledge. Although we spoke for more than an hour, there is a handful of excerpts that,
in introducing this research, offer a sense of our shared rapport and of that which
concerns her as a team leader. Second, I want to convey in this introduction the
importance of music in dementia care (Ridder, Stige, Qvale, & Gold, 2013; Ueda,
Suzukamo, Sato, & Izumi, 2013): whether it is the rhythm or the beat, the lyrics, and/or
the personal history one associates with music, music does seem to have a power to
connect us. And although you were not there to hear or witness either the music on the
floor or my interview with the RPN, I have reassembled (in Table 1.1) seven excerpts
from that interview/time, and I extend an invite to tack back and forth between the left
column, where I have included data from the RPN’s interview, and the column on the
right, where I have listed the song title and artist and a line or two from songs being
played. The intent of this invitation is for you to begin to relate to the lived experiences of
staff and residents alike, perhaps imagining a circle of people living with dementia,
sitting and tapping toes, or perhaps dozing, or perhaps dancing, yet all united by the
music in our ears. You might begin to get a sense of how dementia care knowledge is
created, shared, and enacted through social relationships. This dissertation explores
10
exactly that. Third, this introduction demonstrates the endless possibilities in interpreting
qualitative research, wherein each reading of the data offers new connections, new
insights, and new possibilities for re-thinking dementia care.
Table 1.1: Music to our ears
At about the time I heard the RPN say this,
… the music in our ears was this:
RPN: Here at the home, I will say to [newly
hired personal support workers], We don’t talk
(Ring of Fire – J. Cash & J. Carter):
to our residents like that down here. Like so
Love is a burning thing
many times I hear them saying to the residents,
And it makes a fiery ring
Don’t do that [said harshly, firmly]. So I’ll say,
Bound by wild desire
We don’t use those words on [here]. And
I fell into a ring of fire
they’ll say, Well why not? She-- you know,
whatever they’re doing, and I’ll say, Number
one, she doesn’t know that she’s doing anything
wrong, number two, she’s doing that in
response to something that we’ve initiated
within her personal space, and number three, it
doesn’t help one iota. So they’ll say Oh, okay,
and then they’re all going… rolling their eyes.
*
RPN: When I have my regular staff here, it’s
routine, routine, routine. [She names three
(I Walk the Line – J. Cash):
personal support workers – ], these people [the
I keep a close watch on this heart of
residents] also know them, they know their
mine
voices, they know… I’m not going to say they
I keep my eyes wide open all the time
11
know our expectations, but you know, I’ve
I keep the ends out for the tie that
heard the residents comment, Why did she put
binds
[a particular resident] here? and the other ones
Because you’re mine, I walk the line
will say, That’s what they do all the time. You
know, they get used to us. When I have three
part-timers on, it is bedlam in the morning.
Really it is bedlam because they’re – they’re
not afraid of you know, these new fresh faces to
them, but there’s no familiarity, they’re
demented, they don’t know, you know, if you’re
naked and you’ve got say a man coming in to
do your care, they have no clue about that.
When we do have male [personal support
workers] on the floor, I always say to them you
know, take it slow and easy with these women.
*
RPN: And that’s when I say good morning, I
take a few extra minutes with them, I go eyeball
(When I’m 64 – P. McCartney):
to eyeball with them. And depending upon their
Send me a postcard, drop me a line,
response to me, that’s when I’ll check them a
Stating point of view.
little bit cognitively, and I’ll say, you remember
Indicate precisely what you mean to
me? And you know, a lot of times, no, never
say
seen your face before and some of them look at
Yours sincerely, Wasting Away.
me and say, Yeah, I remember. They never
remember my name. Without my nametag, they
Give me your answer, fill in a form
wouldn’t remember. But I think whether it’s my
Mine for evermore
routine, my voice, or being here full-time, I
Will you still need me, will you still
have a good relationship with all of them. But I
feed me,
12
also work at that relationship from day one
When I’m sixty-four?
when they come to us. I’m a pretty oldfashioned kind of nurse.
*
RPN: In my proactiveness, I’ll say to the docs,
Look it, she’s probably been on this for 30
(All I Have to do is Dream – the
years, it’s an old drug, it’s a harsh drug. Can
Everly Brothers):
we try something else? and they’ll say Whatever I need you so that I could die
you want to do, you have to deal with them, not I love you so and that is why
me. And we’ve gotten one of our residents off a Whenever I want you,
very harsh drug and she’s 100 times better and
All I have to do is
the family is just so grateful. She can walk
Drea-ea-ea-ea-eam,
easier, her gait isn’t affected, her speech is
dream, dream, dream,
clearer.
Drea-ea-ea-ea-eam
*
RPN: I’d also like to have me working, and it’s
not out of greed, I’ve worked every other
(Pretty Woman – R. Orbison):
weekend all my life, but I’d like to work
Pretty woman, won’t you pardon me
Monday to Friday so I could keep things
Pretty woman, I couldn’t help but see
flowing smoothly. Like I do my best at leaving
Pretty woman
things so that you know, what I couldn’t get
That you look lovely as can be
done can be arranged or looked after tomorrow,
Are you lonely just like me?
but sometimes I come back, I just came back
Wow
from two weeks off Ryan, everything’s a mess
[she says in a whisper]. Like there’s
appointments not booked, there’s families
calling in, well when you weren’t there… they
13
call on me. I think consistency – especially in
that unit – is important [emphasis on
especially].
*
RPN: [One particular staff member] is very
abrupt, she’s very vocal, she’s a nice person but
you know, if it would have been me I wouldn’t
have picked her to have her on this floor just
because of her loudness and whatnot, but in her
own way, she’s good to all of them in a little
(Love Me Tender – E. Presley):
Love me tender,
Love me dear,
Tell me you are mine.
I’ll be yours through all the years,
Till the end of time.
different way. You know, and she’s so flexible,
if I… she’ll say they’re all in the wrong spots,
I’ll say, what to do, so she knows where their
diets go and what they eat, so that’s another
good thing about having a permanent staff.
*
RPN: I don’t think I’m better than anybody else,
anybody else. A lot of times there’s in nursing,
there’s a hierarchy, you have your registered
nurse, you have your registered practical nurse,
you have your personal support worker (PSW),
and a lot of time they’ve said to me, Oh I’m just
an ass washer so what does it matter? I say,
Well you’re a very important ass washer, you
know. So I try to share as much of the
information that time permits me to share with
them and to encourage them that they’re doing a
good job and at that time we also talk about you
(Rhinestone Cowboy – G. Campbell):
Like a rhinestone cowboy
Riding out on a horse in a starspangled rodeo
Rhinestone cowboy
Getting’ cards and letters from people
I don’t even know
And offers comin’ over the phone
14
know, when residents are displaying a
behaviour, different ways of diverting their
attention or you know, just even in our body
language like if I go like this [a glance of her
eyes to one of the full time PSWs] or
something, she’ll know I need help. So you
know, that’s a good way to develop, or to start
your day off appropriately I think. Like you
just… everybody comes to work, Good
morning, blah, and gone and you’re off down
the wing. You’re not having a pep talk at the
beginning. I know when we got up in the
morning with a bunch of us sitting at the table,
my mom would say You’re doing this today, oh
that’s right too, you’re going here and there,
eat your breakfast, make sure you don’t forget
this or that. It’s unity, it’s a team.
In the found poetry (Prendergast, 2006) that follows, each line codifies the sentiment
expressed in dialogue with the RPN (on the left) and in the songs heard at about the same
time (on the right). Always and already, I am struck by the notion and importance of
relationships.
15
What the RPN was talking about – the lyrical sounds heard in the background:
experiential leadership – work is love is hardship
routine & bedlam – watchful protection
relational rapport – uncertainty
setting one free – dependency
consistency – loneliness
abrupt – tenderness
unity – fantasy
*
Suddenly, I feel sucked in.
Sucked into experiential hardship and bedlam.
Sucked into relationships replete with contradiction and uncertainty.
Will the end be abrupt, or tender?
Are we united in this?
Or is that just a fantasy?
16
Introduction #3 – Confessional Truth-telling: Life as my CAGE
This [Introduction] is consciously self-revelatory, but my purpose in writing it is
sociological, not confessional. Social scientists inherit an academic culture that
holds authority over them; that culture suppresses and devalues its members’
subjective experiences. For social scientists to make their lived research
experience the centerpiece of an article seems Improper, bordering on Gauche and
Burdensome. I have not, I hope, ventured beyond Improper (Richardson, 1997, p.
147).
Field Journal Excerpt
Field Visit #6 – a Tuesday morning.
6am: I arrive on the specialized care unit (SCU). I meet with one registered nurse
(RN) and three personal support workers (PSWs) in the chart room, hoping each will
enroll in my study. One fully consents, and the other three consent to be interviewed and
to participate in focus groups, but not to being observed. I of course feel disappointment
and angst, wondering, Did I do something not as well? Why had they not fully enrolled?
6:15: They all disperse – I can’t really observe anyone: just one PSW. By this
time, “MR#1” [male resident #1] and another FR [female resident] are up and (put) in the
den. I sit on a bay window ledge in the dining room, and from 6:20 till 7:20 write this
reflexive journal entry as I find myself wondering about CAGEs (class, age, gender,
ethnicity – see McMullin, 2010).
I consider first GENDER: I like and I think I tend to charm one of the evening
PSWs. The two regular day/evening nurses and the life enrichment Coordinator seem to
17
like and welcome me and talk about being excited that I’m here … does any of that have
to do with being male? Maybe? Recall too that another PSW was enthusiastic and
engaged and yet she disclosed to me that “her wife …” … so, I can’t, don’t, wouldn’t in
any (whole) way attribute participation/enthusiasm to just my gender. But I do think that
it plays some role in engendering buy-in.
I consider next: AGE: I’m about the exact same age as the one PSW I know/like.
Nursing staff are older (seemingly by 10-20 years) … some PSWs look 5-10 years
younger than me (I’m 36). I’m not attuned to if/how my age impacts my relationships
with staff participants. My salt & pepper hair/beard I suppose gives me a bit of a
seasoned look … I wonder if people think I’m older than I am: they sometimes seem
surprised to know that I have a 10 month old baby … but maybe it’s not age per se,
maybe it’s just that relatively speaking, I had my kids later in life (than who? than them?
than these staff? I guess that that is what I’m supposing).
Next, I consider CLASS: Do I display indicators of my class? I tell them that :
I’m a PhD student. ‘I worked in a retirement home 10-15 years ago, but since then have
either been in school or working in a hospital’? What about my schoolbag with a laptop
in it? … such symbolic statements might indicate a high(er) socio-economic status? If I
were to somehow balance that (so as to not appear to be from some higher class), I might
do so through my attire: cheap black cotton pants from Costco, a short sleeve button
down from Old Navy, my Portuguese sweater (a hand-knit, grey, wool zip-up sweater),
my retro, scuffed shoes from Winners. It’s the PhD status I think though that creates
some distance between my staff participants and me. This journal entry though is my first
where I’ve taken time to be so introspective: I’d otherwise be busying myself trying to
18
capture the objective realism of daily routines, mindful though that I’m indeed altering
the ‘natural’ conditions, especially with 2-penned note-taking [When writing by hand, I
tend to separate my thoughts by color]. I see myself now writing through/out the angst
and disappointment of not having fully enrolled today’s participants: why didn’t they
agree to be observed?? Are they threatened? by me / my gender / my age / my class ? …
by what I might report? One PSW asked during consent if I’d be capturing all the ‘scope’
of their work: being short staffed, being so rushed, having to care for 30 people? I sense
that they have concerns that they’ll be sanctioned for the difficulty / conditions of their
work. (OR), Today, I gave them the Letters of Information before my ‘spiel’ – usually I
give out the Letters afterward; did that make a difference? Was it that I didn’t have a
leader here setting a (probably coercive) tone of engagement? (Like during my first field
visit when [a senior manager] helped ‘corral’ the day-shift staff for me).
And finally, I critically consider ETHNICITY: And what about my ethnicity? Is it
remarkable that in enrolling my night shift participants that one of them was black,
another Asian, and the other two South American (I presume, given accents and skin
color and facial features)? I was the only white person. Cue thoughts of white privilege?
of colonialism? These are notions I don’t often think about, nor do I realize how I reproduce such feelings. Many/most (but not all) of my daytime/evening participants have
been white. It’s a sobering, refreshing reminder to try to continue to be more reflexive
about CAGE, especially ethnicity.
I conclude [this journal entry] with thoughts about where these thoughts
INTERSECT: And what of these intersections? Middle-class, 30-something, white, male,
PhD student … obviously of some un-natural order, here on the SCU (What is with all
19
that journaling?! What’s he writing?) Compare and contrast ‘me’ with the non-white,
(mostly) female, usually older, perhaps poorer paid staff that aren’t “knowledge makers”
/ researchers, and our differences become much more stark. All this reflecting makes me
all the more grateful to have the buy-in that I do have: until these three tonight, it has (so
far) been a very high percentage of people who consent to all three data collection
methods.
6:25am: (while I journal): Housekeeping fires up the floor machine. It’s loud.
There are three residents sitting in the activity room with the TV on.
7:20: I’ve just been invited by the usual day RPN to come to report and to
meet/greet/enroll via offering my spiel. Hopefully, as I seek a shared understanding of
what it is that staff, residents and families do in creating, sharing, and enacting dementia
care knowledge, hopefully I can be more mindful of our differences and of how these
differences may shape this knowledge production and translation.
Introduction #4 – Theoretical Truth-telling: Critical Tacking between Experience
and Theory
The aim of this dissertation is to critically examine knowledge, specifically
dementia care knowledge, among a particular group of family members and health care
providers who offer long-term dementia care. Data were collected in two settings: a
specialized care unit (SCU) in a long-term care home in southwestern Ontario, Canada,
and its affiliated adult day program (ADP). The ADP was physically located in the same
building, had some overlapping but mostly separate staff, and was more recreation- rather
than nursing-focused. In each setting, I wanted to know what dementia care knowledge
seemed to be, and to critically describe its cultural nature.
20
It would seem that such a project requires a theoretically sound sense of what
knowledge is – its nature and its derivation; that is, to have a certain amount of
epistemological savviness. This while being required to recognize, record, understand,
and describe the historically located and socially- and discursively-shaped care practices
of a fluid group of people caring with and living as people with dementia. Moreover, by
announcing this dissertation to be critical, I ascribe to being a criticalist – someone who
feels concerned about social inequality and someone who wants my work to contribute in
some way to positive social change. Rather than merely describing social life, critical
research seeks to both understand and refine the nature of social structure, power, culture,
and human agency (Carspecken, 1996). My job then, in studying a particular care culture
critically, is to ground theoretical constructs (especially of knowing) in the everyday
cultural practices of these research subjects (Foley, 2002), and to use both induction and
deduction while moving “back and forth mentally between concrete field experience and
abstract theoretical explanations of that experience” (Foley, 2002, p. 476). Ultimately, my
job is to produce an account of the cultural other that critiques dominant ideologies and
advocates for equitable living and working conditions (Denzin, 2003; Foley, 2002).
To that end, I have deployed in this dissertation a critical, reflexive epistemology
that involves the collection of monologic and dialogic data (Carspecken, 1996). What
Carspecken calls monologic data collection entailed (mostly) non-participant observation
of the social routines and practices of research subjects. Dialogic data collection
followed, wherein I pursued with research subjects threads of inquiry that arose from the
monologic data, partly with an aim to discover systems relations so as to explain my
findings (Carspecken, 1996). The theory of knowledge that I drew on in collecting and
21
analyzing these data purports that within a group of people, truth is judged in terms of
whether or not a truth claim meets certain validity conditions to win consensus. As
described in Chapter Three, this winning of consensus was determined, partly, by certain
universal standards that are rooted in structures of human communication, not by what
the research subjects or I perceive (Carspecken, 1996).
This premise – toward pre-differentiated experience and human communication
rather than perception – is central to the critical epistemology employed in this research.
The essential assertion is that as we encounter our lifeworld (Habermas, 1981b), our
experiences are much less focused than perception per se; we encounter one another and
recognize the situation within a culturally typified way, in a holistic way; our recognition
of the situation in turn directs us how to act in response to the situation. And in terms of
the communicative element of ascertaining truth, the tenet of this critical epistemology, of
this way of knowing and critiquing, is that even when we do note the properties of some
perceptual object, we symbolize the experience in a way that could be communicated to
other people: “[t]his applies even on the low levels of self-consciousness involved when
being aware that we are aware of something, so that we can record the experience in
memory or otherwise get cognitive about it. Thus perception itself is structured
communicatively. To construct a sound critical epistemology, then, we must understand
the holistic modes of human experience and their relationships to communicative
structures” (Carspecken, 1996, p. 19). Within such a way of knowing, it is possible then
to reconstruct a more finely delineated understanding of the care and knowledge practices
of a group of people – in this case, those living and working with dementia.
22
As I set out now to report my findings, I do so mindful of an obligation to be
reflexive (Denzin, 2003; Davies et al., 2004; Macbeth 2001; Macphail, 2004). And while
I have woven into this dissertation some of both confessional and deconstructive
reflexivity, I have given primacy to Carspecken’s (1996) theoretical reflexivity by
deploying his “critical qualitative research” methodology.
Orientation to Table of Contents
The next chapter in this dissertation, Chapter Two, details my critical review of the
literature regarding long-term care, dementia, knowledge translation, and ethnography,
and serves as the explication of the rationale for this research project. In this work, the
knowledge gap I have sought to fill pertains to the culture of long-term dementia care
knowledge, wherein historically located and socially- and discursively-shaped care
practices are created, shared, and applied within and among a group of people living and
working with dementia. It is important to know about this insofar that such an
understanding can presumably shed light on what is otherwise considered a “black box”
of organizational context (Rycroft-Malone, 2007), an understanding of which is
presumed to factor significantly in the achievement of enhanced and sustained quality of
care. Understanding the culture of dementia care knowledge is important for the purposes
of “knowledge translation” and for the conceptualization and roll-out of quality
improvement initiatives.
Chapter Three sets the scholarly context of this dissertation in two parts. The
chapter begins by providing an overview of the critical value orientation and the key
epistemological tenets that make this research ‘critical.’ Chapter Three also addresses the
23
triple crisis (Denzin & Lincoln, 2005) of representation, legitimation, and praxis. That is,
I explicate how and why I chose some of the rhetorical devices that this dissertation
employs, the criteria by which the rigour of this dissertation could/should be judged, and
the means by which this dissertation’s theoretical reflexivity can be brought to bear on
actual practice.
Chapter Four is the first of three integrated manuscripts in this dissertation. Its
focus is on the unpacking of the methodology that drives this research (Carspecken,
1996). Characterized by Denzin as an “elegant model for critical ethnography” (2003, p.
269), by Cook as “extremely intricate” (2005, p. 134), and by Stewart and Usher (2007,
p. 998) as a “method [that] can be used to understand nursing leadership in terms of the
organizational cultural factors that contribute to the way in which leaders behave,” the
assumptions and practices proposed by Carspecken require delineation and explanation.
To assist in the effort of conceptualizing Carspecken’s theoretical methodology, I have
included in this chapter a number of figurative and empirical illustrations.
Study findings are reported in Chapters Five and Six. Chapter Five features an
examination of the social power that envelops caregivers as they read and interpret a
person with dementia, yielding three power themes that describe the variably ethical
conditions for discourse related to dementia care knowledge. Chapter Six focuses on how
study participants respond to clients’ and residents’ responsive behaviors, and in
particular how social power interacts with tacit and explicit knowledge in the provision of
dementia care. Collectively, these findings draw attention to the need for dementia
caregivers to be attuned to both the communicative capacity of a person with dementia
and to how social power manifests during the enactment of dementia care. Chapter Seven
24
concludes this dissertation by offering implications for the fields of dementia care and
knowledge translation.
25
References
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Carspecken, P. (1996). Critical ethnography in educational research: A theoretical and
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Ellis, C. & Bochner, A. P. (2006). Analyzing analytic autoethnography: An autopsy.
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Richardson, L. (1997). Fields of play: Constructing an academic life. New Brunswick
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– Chapter Two –
Review of the Literature
This chapter establishes where in academic literature knowledge gaps exist with
respect to efforts to improve and sustain the quality of dementia care in long-term care.
To review the literature, my strategy was to focus on four broad areas: knowledge
translation (KT), long-term care (LTC), Alzheimer’s disease and related dementias
(ADRD), and critical ethnography. My rationale for focusing on these areas relates
primarily to my targeted research setting and population (hence searching the long-term
and dementia care literatures), coupled with my critical interest in the evidence-based
care movement as that which is meant to drive quality care improvement (hence
searching the KT literature). I entered the literature review with an a priori decision to
search for evidence of ethnographic activity in long-term dementia care for two reasons:
one is my appreciation of the importance of understanding context in KT and my
presumption that an ethnographic methodology inherently lends itself to this aim.
Second, my philosophical orientation is driven in large part by an intent to realize a
critical epistemology, and I had known the work of Carspecken (1996) to enact such an
epistemology.
To conduct a search of the literature that includes contributions from KT, longterm care, dementia care, and ethnography, four databases were searched, including:
CINAHL, Scopus, PsychInfo, and Ovid Medline (inclusive of publications from 1948 to
February 2011). The KT terms I searched for included, knowledge translation, knowledge
exchange, knowledge to action, knowledge transfer, knowledge broker, and PARIHS,
which is the acronym for a KT framework popular in health sciences, Promoting Action
on Research Implementation in Health Sciences (see Kitson et al., 1998). While
29
searching the Medline and CINAHL databases, I allowed the search engine to map search
terms onto subject headings, thereby expanding my search to include terms such as
evidence based medicine, health knowledge, diffusion of innovations, health policy,
practice guidelines, information dissemination, and knowledge management. To include
literature related to both the overall syndrome of cognitive impairment and to its most
prevalent disease, I searched for the keywords dementia, Alzheimer’s disease,
Alzheimer’s disease and related dementias. Indeed, the Canadian Institute of Health
Information estimates that 56% of Ontario's LTC residents have a diagnosis of
Alzheimer’s disease or a related dementia, which translates into an estimate of more than
64,000 people in 2015, 87,000 by 2025, and nearly 134,000 by 2035 – figures that fuel
fears of the rising tide in dementia care. For ‘long-term care,’ I used long-term care
home, long-term care facility, nursing home, homes for the aged, and residential
facilities. Finally, I used the terms ethnography, critical ethnography, cultural
anthropology, and nursing methodology to identify literature related to ethnography in
health care.
In Medline, these four searches yielded, approximately, 1.3 million KT articles,
130 000 Alzheimer’s (and related dementia) articles, nearly 850 000 long-term care
articles, and 250 000 ethnographic articles. Among these 2.5 million or so articles, I then
began to look for overlaps in these distinct literatures by cross-referencing the searches.
For example, there were 18 articles that used both ‘KT’ AND ‘ethnographic’ keywords,
six that used ‘long-term care’ AND ‘ethnographic’ keywords, two that used the
Alzheimer’s AND ethnographic keywords, 21 that used PARIHS as a keyword, and 285
that, according to their keywords, related to all four areas of interest. In reviewing those
30
285 articles, I excluded articles if they were: not in English (22), focused exclusively on
LTC placement (15), only about Alzheimer’s and not about Alzheimer’s and KT or
Alzheimer’s and ethnography (46), focused on biomedical/pharmacological aspects of
AD (22), related to psychiatric conditions other than Alzheimer’s (1), or if they focused
exclusively on non-KT tool development/psychometrics (4). Thus, after I excluded these
110 articles, I exported the remaining 185 into RefWorks (i.e., software for managing
reference data) along with the other 47 articles previously identified in Medline. I then
repeated the same procedures while searching the other three databases, such that I
exported into my RefWorks database 95 articles from PsychInfo, 33 from Scopus, and 83
from CIHAHL, which, when added to the 232 from Medline, equaled 443 articles. I also
imported 29 systematic literature reviews on/about KT I had in another RefWorks
database. After subtracting 7 duplicates, my literature search ultimately yielded a total of
465 references in my database. I have organized my review of the literature into the
following nine sections:
(i)
I begin by examining (facility-based) long-term care in Ontario, particularly in
terms of system trends.
(ii)
I then draw attention to concerns regarding the quality of living and working
conditions in long-term care, particularly in specialized care units.
(iii)
Next, I examine existing knowledge translation (KT) strategies that attempt to
redress the concerns regarding living and working conditions in long-term care
dementia care, and begin to problematize the notion of depositing knowledge into
point-of-care caregivers’ heads.
31
(iv)
Then I consider relational KT – networks, needs assessment tools, and knowledge
brokering – and suggest that these strategies still do not include point-of-care
providers’ views or experiential knowledge.
(v)
I then describe newer ways of thinking about best practices in dementia care
research – ideas about how dementia-related KT could or should be conceived of
in long-term care settings – and concede that these ideas are more inclusive, but
maintain that they are still not critical in that they do not inquire about (let alone
account for) the socio-political and –historical knowledge-power dynamics that
shape care practices.
(vi)
Next, I focus on two regional training initiatives, PIECES and GPA, and the
lessons learned from the evaluations conducted to date. And while I cannot argue
with evaluations that show PIECES- and GPA-trained practitioners are satisfied
with the training and feel more confident after being trained, I contend that
satisfaction and confidence outcomes should not be equated to changes in
practice, and, moreover, I suggest that the implementation and evaluation of these
initiatives were not designed to take into account ‘critical’ considerations (of, for
example, the influence of social power).
(vii)
I turn next to the literature that describes a lack of engagement with point-of-care
caregivers to substantiate the notion that PSWs are often not included in care
planning, and therefore neither is their tacit knowledge. I follow Kontos (who
follows Merleau-Ponty) in articulating a notion of tacit knowledge that entails a
primordial, embodied way of knowing, contending that this indeed is an important
way of knowing to know about.
32
(viii) Next, I look to see how others have seen long-term dementia care knowledge with
(critical) ethnographic eyes, first by describing the seminal work of Diamond,
then by reporting on the ethnographers who followed after him, both
descriptively, and critically.
(ix)
Finally, I review the literature that expounds critical ethnographic KT, from
ethnographically deriving an understanding of learning needs to a critical
ethnographic exploration of knowledge work in a primary care setting. Notably,
these works are rare.
In fact, to my knowledge, there has been no critical research that ethnographically
examines dementia care knowledge in a long-term care residential setting. As such, I
suggest that an examination of the historically located and socially- and discursivelyshaped dementia care practices is justified, and that an effort to understand how dementia
care knowledge is created, shared, and applied within and among a group of people living
and working with dementia is useful insofar that such an understanding can presumably
shed light on what is otherwise considered a ‘black box’ of organizational context
(Rycroft-Malone, 2007). Ultimately, I suggest that not only can such an understanding of
dementia care knowledge inform knowledge translators’ efforts to understand context,
but perhaps more importantly, such an understanding of dementia care knowledge can
contribute to a re-cognition of what exactly ‘knowledge’ is. I begin though by providing a
sense of what system-level trends seem to exist in the long-term care sector here in
Ontario.
33
Long Term Care in Ontario
Comprised of 625 facilities, the long-term care sector in Ontario provides health
care and accommodation services to nearly 77,000 older adults with health and personal
care needs; another 24,000 people are currently on the wait list for long-term care (LTC)
placement (MOHLTC, Long Term Care Homes System Report, 2010, pp. 2-9). A report
by the Conference Board of Canada1 (CBoC, 2011) provides a comprehensive overview
of how changes to the health care system, coupled with changing socio-demographic
conditions, are making affordable, accessible, high quality care more difficult to achieve.
Such conditions necessitate significant innovation and transformation as multiple forces
converge on the LTC sector to create this need for transformation. These converging
forces include the increasing number and proportion of older adults, the increasing
prevalence of chronic diseases, and, as reported by the Alzheimer’s Society of Canada
(2010), the “rising tide” of dementia that impairs the ability of many Ontarians to live
independently. Moreover, current and future cohorts of LTC residents are expected to
have higher health care needs and expectations, thus adding to the already high levels of
job strain among LTC staff (Morgan, Semchuk, Stewart, & D'Arcy, 2002). The
Conference Board of Canada report suggests that meeting these higher expectations will
not only require additional resources, but will also require a cultural shift in LTC
facilities at all staff levels.
And yet the LTC sector’s financial resources and infrastructure remain highly
strained: promised increases in funding to enable an increase of the number of hours of
1
The Conference Board of Canada is not-for-profit organization that provides
organizational research and capacity development services to all levels of Canadian
government. This particular report was developed with funding from the Ontario Long
Term Care Association, and was subject to external peer review.
34
care per resident per day have not materialized, staff shortages continue to manifest, and
unbalanced staff ratios are common (CBoC, 2011). Moreover, a need exists to ensure that
there are enough professional staff in place that para-professional staff (i.e., nonregistered ‘personal support workers’ – PSWs) are not being required to provide care
they are not trained to provide (CBoC; Kontos, Miller, & Mitchell, 2009), and that all
providers receive the support and/or training necessary to provide dementia care (Illes,
Chahal, & Beattie, 2011; Stolee, Hillier, Cook, & Rockwood, 2011). Factors that
negatively impact human resource recruitment/retention to the LTC sector include
workload issues, inadequate staffing levels, the ubiquitous devaluation of LTC, low
wages, lack of advancement and training opportunities, and a lack of autonomy (CBoC).
Additionally, high or over-regulation in the LTC sector makes care harder to provide: the
time needed for compliance and reporting compounds human resource challenges, i.e.,
reduces the availability of staff time for direct resident care (DeForge, van Wyk, Hall, &
Salmoni, 2011) and hampers innovation. The CBoC report concludes, “for the LTC
sector to survive and thrive in the emerging environment, it must undergo significant selftransformation and pursue improved relationships and integration with other parts of the
continuum of care to ensure the most effective and efficient delivery of services to
Ontarians” (p. 1).
Dementia Care Practices in Long-term Care
For more than 20 years, health care organizations have been trying to establish
learning cultures and to assess dementia caregivers’ needs (Bellaver, Daly, &
Buckwalter, 1999; Maalouf, 1995). These caregiving activities are immensely complex
35
given that people with Alzheimer’s disease or a related dementia, oftentimes, are dealing
with comorbidities in addition to dementia (Neyens et al., 2006; Tariot, Ogden, Cox, &
Williams, 1999). In geriatric nursing – where the bulk of dementia care takes place
(Anderson, Ammarell, Bailey, Colon-Emeric, Corazzini, Lillie et al., 2005) – dementia is
one of the main areas of knowledge where gaps have been identified (Larson et al.,
2004), especially with regards to the management of behavioral disturbances both in
acute (Henderson et al., 2006) and in long-term care homes settings (Draper et al., 2009;
Hsu et al., 2005).
The increasing proportion of complex residents with dementia and other
comorbidities has led to the emergence of specialized care units (SCU) in long-term care
homes (Sidell, 1998). Such dementia care units vary in their models of care and care
philosophies, physical and built environments, staff selection and training, programming,
and admission and discharge criteria (Maas, Buckwalter, Swanson, & Mobily, 1994), but
have in common the feature of being a unit within a long-term care home that is
dedicated to caring for people with dementia (Mistretta & Kee, 1997). Despite the
rapidity with which SCUs have emerged, research shows that SCU management practices
across the sector are inconsistent: long-term care managers’ practices vary, are often
vague and process- rather than outcome-oriented, and sometimes unrealistic about the
goals and criteria for success of their SCUs (Kane, Jordan, & Grant, 1998). Moreover,
Phillips and colleagues (1997) showed that SCUs do little to slow the rate of cognitive
decline among people with dementia. Sidell (1998) pointed too to the socio-political
complexity that intertwines the historical development of SCUs and specialized
programming for ADRD in LTCHs by noting the rapid emergence of special-interest
36
groups over the past two decades, and that despite there being limited research on the
benefits and effectiveness of SCUs for the dementia population, they continue to
proliferate.
In addition to calling into question the evidence base for SCUs, Sidell (1998)
echoed others’ (Bass, Crumpton, Griffin, Hassan, & Rustige, 1993; Sloan & Matthew,
1991) concerns regarding the segregation of people with ADRD, particularly when such
segregation manifests as the isolation of especially ‘troublesome’ residents and/or when
such segregation is offered/imposed without appropriate, positive supports. Such
concerns stem, in part, from the growing body of evidence that describes the challenges
long-term care home staff face in caring for residents with Alzheimer’s disease and
related dementias who, for instance, wander (Lucero, Hutchinson, Leger-Krall, &
Wilson, 1993) or who require substantial assistance with feeding (Van Ort & Phillips,
1992) or with toileting (Hutchinson, Leger-Krall, & Skodol Wilson, 1996). These
challenges, among others, increase the potential for job strain among long-term care
home staff (Morgan, Semchuk, Stewart, & D'Arcy, 2002), particularly when the
challenges manifest as verbal or physical assault (Gates, Fitzwater, Telintelo, Succop, &
Sommers, 2002; Myers, Kriebel, Karasek, Punnett, & Wegman, 2005; Volicer, Van der
Steen, & Frijters, 2009). While these challenges are not unique to SCUs, the segregation
of those with dementia and with complex care needs can significantly compromise the
quality of life for both those who work and live in LTC homes (Sidell, 1998) and bring
about undue suffering to people with dementia and staff alike (Bourbonnais & Ducharme,
2010). These concerns begin to establish a rationale for critical research that examines
how knowledge is (re)produced and exchanged in these SCU settings.
37
The initial response to these concerns about the living and working conditions
within SCUs has been to assert that there exists a clear practice gap pertaining to the care
of older adults in long-term care – especially regarding how point-of-care providers can
be supported (Boström, Slaughter, Chojecki, & Estabrooks, 2012). Calls have been made
for knowledge translation intervention research that focuses on organizational, financial,
and regulatory elements of the health and long-term care systems (Boström et al., 2012;
Moyle, 2010) and that establishes effective processes to facilitate knowledge exchange
among all care providers and researchers of best care practices in this particular setting
(Berta, Teare, Gilbart, Ginsburg, Lemieux-Charles, Davis, et al., 2005; Sullivan, Kessler,
Le Clair, Stolee, & Berta, 2004). Such calls reflect a realization that to date, most of the
existing strategies for dementia-related KT in long-term care, as shown below, have
generally targeted physicians and/or have relied on a didactic teaching model that ignores
and erodes existing care knowledge among point-of-care providers.
Existing KT Strategies in Long-term care Dementia Care
Many of the KT research projects described in the long-term dementia care
literature focus on changing physicians’ medication prescription practices (Boström et al.,
2012), or are premised on a single intervention, such as: the use of in-home videos
(Mahoney, Tarlow, Jones, & Sandaire, 2002), the use of on-line modules (Vollmar,
Butzlaff, Lefering, & Rieger, 2007; Vollmar et al., 2010), and educative interventions
with volunteer caregivers (Robinson, Kiesler, & Looney, 2003) and care providers
(Robinson, Bamford, Briel, Spencer, & Whitty, 2010). Each of these projects entailed
expert-developed and expert-led education that subscribed to didactic teaching and
38
learning practices, which Grimshaw et. al (2003) have deemed limited in effectiveness. It
is perhaps not unexpected then that these interventions did not yield practice changes that
were shown to be sustainable; at best, they showed an improvement in ‘knowledge gain
before and after’ the intervention, which again Grimshaw et al. have criticized as not
being indicative of changes in knowledge practice.
The research by Cohen-Mansfield, Werner, Culpepper and Barkley (1997) is an
exemplar of in-service training evaluation. With a goal to change knowledge, attitudes
and behaviors of staff members, and to decrease agitation among LTC home residents,
their in-service training program focused on understanding the causes and symptoms of
dementia, and management strategies, particularly regarding dementia-residents’
wandering. While post-training measures of knowledge improved significantly, scores
declined at follow-up, and only modest changes in residents’ agitation were observed.
Cohen-Mansfield et al. suggest that additional mechanisms beyond the training sessions
are needed to see knowledge changes maintained and realized in actual practice; these
might include monitoring, feedback, and reinforcement by supervisors. In a Taiwanese
study that addressed the risk people with dementia are at for malnutrition, Chang and Lin
(2005) researched the effects of a 4-hour training session focusing on developing the skill
to feed people with dementia (3 didactic hours + 1 hour of hands-on practice) and
reported that by way of including elements of experiential learning, some knowledge and
practice improvements were implemented and maintained.
Another significant development in long-term care KT is the prediction that
implementation strategies are more likely to be successful when they are multi-faceted
(Holroyd-Leduc et al., 2010). Reporting on the evaluation of an implementation
39
programme in improving long-term care home staff’s knowledge of and adherence to an
individualized music protocol for older people with dementia, Sung and colleagues
(2008) described how the success of their initiative might be attributed to its multifaceted
nature insofar that it included interactive education, a reminder system, a local opinion
leader, and an audit mechanism. Similarly, Thomas et al. (2006) provided a review of
active learning interventions that espouse the use of interactive, targeted and multifaceted
techniques. An outstanding issue with multi-faceted interventions, however, relates to
the difficulty in discerning which intervention had what effect and/or how the synergistic
effects become integrated (Goldman, Zwarenstein, Bhattacharyya & Reeves, 2009). That
said, multi-faceted approaches to realizing change are often embedded in best practice
guidelines (BPGs), whose emergence, perceived usefulness, and contemporary
prevalence (Edwards, Davies, Ploeg, Dobbins, Skelly, Griffin et al., 2005) has indeed
reached into the field of dementia care (Lewis et al., 2005; O’Brien-Pallas, Mildon, &
Murphy, 2007a, 2007b; Ploeg, Davies, Edwards, Gifford, & Miller, 2007).
In 2005, Lewis and colleagues engaged specialized geriatric services practitioners
in reviewing, summarizing and interpreting five dementia guidelines, after which they
conducted two sequential workshops to develop action (implementation) plans.
Evaluations of BPG tool adoption indicated that adoption was related in part to the
credibility assigned to the evidence (i.e., if the BGP evidence was not of a randomized
control trial standard, it was less likely to be adopted). Furthermore, the need for
sustained interventions, for ongoing assessment, or for contact with extra-organizational
contacts (e.g., the Alzheimer’s Society) all were related to lower acceptance of BPGs
among the participants. One interpretation of these largely organizational and structural
40
impediments was that such a lack of resources precluded practitioners’ willingness to
improve their practices (Lewis et al., 2005). This interpretation resonates with the
findings of O’Brien-Pallas, Mildon, and Murphy (2007a, 2007b), who reported on the
enablers – managerial support, point-of-care support and buy-in to the importance of
evidence-informed decision-making – and barriers related to implementing BPGs in longterm care – lack of time, too many other competing priorities (including direct resident
care), a lack of engagement with point-of-care staff during the development of the BPGs,
and a lack of organizational resources to support implementation (namely staff training
and backfilling). Furthermore, there were only a limited number (8) of BPG
‘Coordinators’ whose job was to facilitate uptake. These findings showed that the
implementation of BPGs in long-term care is immensely complex, particularly in light of
limited implementation resources and the heavy, complex workloads that preclude staff
from engaging in either the development or uptake of BPGs.
Research such as that by Chang and Lin (2005) suggested the possibility that
experiential learning may be more effective than didactic learning in dementia care.
However, the literature on existing KT strategies in long-term care, including that which
describes BPG implementation efforts, still fails to foster (or report) the exchange of
existing know-how among point-of-care providers and instead presumes staff to be ‘in
need of’ expert-led learning wherein knowledge is conceived of as that which can be
deposited into the heads of learners. Moreover, concerns now exist that mandated
practices and (over)regulation may spawn unintended dire consequences such as reduced
availability of staff time for direct care of residents, and more generally, a limited ability
of the LTC sector to pursue opportunities to develop and implement innovations (CBoC
41
2011; Kontos et al., 2009). As such, this grouping of studies reflect expert-driven
education models that manifest as in-services or educational outreach programs, often
failing to engage the existing knowledge of point-of-care staff or to leverage the
opportunities that foster face-to-face, hands-on learning. Moreover, while these particular
single-focus interventions may have shown changes in caregivers’ knowledge and
awareness, outcome measures typically indicate pre- and post-intervention knowledge
change scores; the findings do not extend far enough to distill changes in practice. Such
concerns (wherein knowledge gains are mistaken for changes in practice) have received
more attention of late (Grimshaw, McAuley, Bero, Grilli, Oxman, Ramsay et al., 2003;
O’Brien, Freemantle, Oxman, Davies, Wolf, Davis & Herris, 2001) and thus suggest a
need for further research that extends its scope in at least four ways, in terms of: gaining
localized insight into the socio-political and -historical culture of a particular setting and
its care practices; integrating multiple strategies to change care practices within the KT
intervention; being more inclusive of point-of-care staff in both the development and rollout of improvement interventions; and facilitating and measuring changes in actual
practice, not just knowledge or awareness. This is perhaps presupposed by the need for an
alternative conception of ‘knowledge’ such that rather than being conceived as something
that can be deposited into a learner’s head, ‘knowledge’ is conceived as that which
emerges from a collective, relational effort to solve practical (practice-based) problems
within a context of not only individual learners or practitioners, but of one that also takes
into consideration “reservoirs” of tool- and task-related knowledge (Argote & Ingram,
2000).
42
Relational KT: Networks, Needs Assessment, and Knowledge Brokering
With more of an emphasis on such relationality, other scholars who have
contributed to the long-term care KT literature focused on the impact of social networks
(Sales, Estabrooks, & Valente, 2010), the development of a dementia education needs
assessment (McAiney et al., 2009), and on the combination of ‘eLearning’ and
knowledge brokering (Halabisky et al., 2010 Sales et al. (2010) claimed that networks
can have significant influences in the innovation, adoption and behavior change
processes. However, our understanding of how networks realize planned change within
health care settings is limited and, as a result, our ability to design optimal interventions
that employ social networks as a method of fostering planned behavior change is also
limited (Sales et al., 2010). Sales and her colleagues were among the first planning to
apply the techniques of social network analysis to knowledge translation in long-term
care and their work promises to not only provide insights into the influences of social
networks on knowledge translation, but also as a possible mechanism for knowledge
translation.
In recognition of the need to take into consideration organizational and managerial
support mechanisms that support dementia-focused education in long-term care,
McAiney and colleagues (2009) reported on how existing evidence on adult learning
principles, knowledge translation and performance improvement was used to develop an
evidence-based education strategy to support care practice and improvement in long-term
care homes. Four key principles framed their planning guide: use user-friendly, simple,
and client-focused tools to facilitate dialogue, capacity building, access to resources, and
proactive problem solving; look beyond continuing education strategies to address the
43
issues that point-of-care staff face; develop a well-thought-out and sustainable education
plan that takes into consideration the organization’s need and capacity to support
education; and include both internal and external stakeholders/resources in making
decisions about an education strategy. These four principals are more commensurate with
KT strategies that espouse the active fostering of ‘bottom up’ learning and changeinitiation, and inform a three-part tool designed to solicit reflection and dialogue among
long-term care home staff/stakeholders about performance gaps and needs for capacity
building and education. The first two parts explore the antecedents and readiness for
change, while the third part consists of a menu of existing programs/initiatives that may
meet a staff’s needs. This ‘dementia education needs assessment’ (DENA) tool has been
pilot-tested in 12 long-term care homes, and subsequent revisions led the finalized
version of the tool; McAiney et al. (2009) concluded that the next steps for the tool
include the development of sustainability strategies, assessing the feasibility of including
other programs in the matrix, and testing the tool in other sectors and settings.
The research by Halabisky et al. (2010) explored if/how eLearning (i.e., online
education modules) could foster the development of local opinion leaders into change
leaders. The findings show that system-level organizational and technological barriers
rendered face-to-face collaboration a challenge (when such collaboration was intended to
be strengthened), an indication perhaps that the benefits of technology- and internetbased knowledge translation strategies may be less significant than the challenges and,
therefore, that further research into the conditions and mechanisms that enable on-site,
face-to-face knowledge translation and exchange are necessary.
44
Also interested in making use of knowledge brokers, albeit at an interorganizational level, the knowledge network known as the Seniors’ Health Research
Transfer Network (SHRTN) further contributed to the knowledge translation – dementia
literature. As a ‘network of networks,’ SHRTN sought to improve the flow of knowledge
throughout the seniors’ health-care system by “providing support to Communities of
Practice (CoPs), organized around topics such as Alzheimer’s disease, spiritual care, and
continence care and to a network of regional libraries” (Conklin & Stolee, 2008, p. 1178). CoPs have themselves become commonplace in a variety of health care fields, but as
Li and colleagues assert in their systematic review of CoPs in business and health care
sectors, the effectiveness of CoPs in the health care sector “remains unclear” (Li et al.,
2009). A funded study protocol that employs qualitative methods to investigate how
SHRTN CoPs function and pursue knowledge exchange has recently been published
(Conklin, Kothari, Stolee, Chambers, Forbes & LeClair, 2011), but in the interim, to
build capacity within its CoP, SHRTN “employs ‘knowledge brokers’ to support the
CoPs and the librarians by facilitating communication, promoting SHRTN and extending
its reach and membership, seeking useful evidence, and facilitating opportunities to move
knowledge into action” (Conklin & Stolee, 2008, p. 117-8). In a subsequent evaluation of
the role and impact of the SHRTN knowledge brokers (Conklin, Lusk, Harris & Stolee,
2013), the authors concluded that knowledge brokers who demonstrate competency in
project management, cultural sensitivity, and interpersonal skills can respond to the
unpredictable nature of knowledge flow within and across social systems, and do so by
enacting multiple roles, including coach/mentor, knowledge translator (i.e., identification,
appraisal, and dissemination of research evidence), and/or network developer. Moreover,
45
the impact a knowledge broker has on the community of practice it supports is greater
when the community of practice is in its infancy; established groups, in SHRTN at least,
seemed to rely less on knowledge brokers (Conklin et al., 2013).
Within the context of public health based knowledge brokering, Dobbins et al.
(2009a) similarly conceived of knowledge brokering as a means for developing capacity
for evidence-informed decision-making and as a strategy to promote interaction between
researchers and end users. For Dobbins et al., knowledge brokering links knowledge
users and producers by “developing a mutual understanding of goals and cultures,
collaborat[ing] with end users to identify issues and problems for which solutions are
required, and facilita[ing] the identification, access, assessment, interpretation, and
translation of research evidence into local policy and practice” (2009a, p. 2). While
knowledge brokering was not found to be as effective as tailored messaging in this
particular project, it did show, similar to Conklin et al. (2013), that “knowledge brokering
had a significant positive effective for public health departments that perceived their
organization did not value the use of research evidence in decision making” (Dobbins et
al., 2009a, p. 3). The notion that knowledge brokerage is a potentially effective means of
knowledge translation in some situations is consistent with findings reported by
Thompson, Estabrooks, and Degner (2006), who cautiously concluded that while
scholars’ conceptualizations of knowledge brokering appear to be premised on the
understanding “that interpersonal contact improves the likelihood of behavioural change
when introducing new innovations into the health sector … considerable confusion and
overlap continues to exist” in terms of what a knowledge broker’s role could/should
46
entail (p. 691, emphasis added).
(Newer Ways of Thinking About) Best Practices in Translating Best Practices in
Dementia Care Research
Researchers interested in understanding and improving the quality of dementia
care in long-term care settings have thus sought to conceive anew their KT practices. For
instance, Masso and McCarthy (2009) recently completed a review of the literature to
identify the factors that support the implementation of evidence-based practice in longterm care, finding that factors related to the evidence itself, the context into which the
evidence was being implemented, and the way in which change was facilitated were all
salient. The specific, interrelated factors Masso and McCarthy identified included: a
receptive context for change; a model to conceptualize and guide the change; adequate
resources, skilled staff, and stakeholder buy-in and participation; mechanisms to support
the use of the evidence; and the ability to generate demonstrable benefits of the change.
These contextual factors are in keeping with research that explored long-term care home
staff perceptions and beliefs about evidence-based practice in long-term care (Ayalon,
Arean, Bornfeld, & Beard, 2009), and are commensurable with research findings that
have focused on organizational knowledge application capacity within long-term care
(Berta, Teare, Gilbart, Ginsburg, Lemieux-Charles, Davis, et al., 2010).
Similarly, Draper et al.’s (2009) overview of translating dementia research into
practice considered the issues of research–informed quality of care improvement
strategies from a variety of perspectives (including educators, service providers, the
general public, persons with dementia and their carers, and policymakers), attributing the
47
challenges that dementia caregivers face, in part, to the overwhelming volume of
literature on dementia that is generated each year. What was different about their view of
KT in long-term care settings was their assertion that the responsibility for knowledge
translation needs to be shared among knowledge users and knowledge producers, a
practice that requires a shift in the mindset of all key players regarding the regular flow of
information between stakeholders. Moreover, this shift may require dedicated knowledge
translation experts and continued provision of knowledge translation resources and
research. Draper et al.’s review of the literature concluded with a summation of four key
features of effective dementia knowledge translation: a simple, compelling message that
is tailored to the intended audience; the use of interpersonal contact (via opinion leaders,
change facilitators/champions, and change/linking agents) to improve the likelihood of
the uptake of new innovations; student placements and workshops that emphasize knowhow (rather than just knowledge of); and organizational structures and resources that
enable a learning culture. Furthermore, such a culture ought to manifest not as a
multidisciplinary culture, but rather as an interdisciplinary team capable of partnering
with care recipients in care planning decisions (Orchard, Curran, & Kabene, 2005).
To date, the literature that addresses how to assess a particular long-term care
context so as to determine its readiness for engagement in KT activity is premised on the
development of survey tools to assess organizational context (Estabrooks, Squires,
Cummings, Teare, & Norton, 2009), an approach that, within the same research program,
is to be complimented by a qualitative approach to understanding context within longterm care settings (Rycroft-Malone et al., 2009). These study protocols were among the
first to focus on assessing organizational context in long-term care home settings for the
48
purposes of informing subsequent knowledge translation strategies and do so by building
on existing PARIHS conceptualizations of context. According to PARiHS, culture,
leadership and evaluation are central constructs of context; Estabrooks et al. add the
financial resources of the long-term care home and family caregivers, the social capital
therein (manifest as care team cohesion), their formal and informal interactions, and the
time for staff to engage in quality improvement / knowledge exchange activities.
Estabrooks considers such notions of time to be an element of organizational slack (i.e.,
the cushion of time, space, and human resources). These constructs developed by
Estabrooks and her colleagues constitute the Alberta Context Tool (Estabrooks, Squires,
Cummings, Birdsell, & Norton, 2009); its aim (to better understand context) matches
research interests from outside the long-term care sector (Cummings, Estabrooks,
Midodzi, Wallin, & Hayduk, 2007; Hagedorn & Heideman, 2010; Helfrich, Li, Sharp, &
Sales, 2009; Krein et al., 2010; McCormack, McCarthy, Wright, Slater, & Coffey, 2009).
Intent on broadening the scope of context beyond organizational factors,
O’Connell and colleagues described a tri-focal model for care in long-term care home
settings that establishes principles of partnership-centred care and positive work
environment layered upon any notion of evidence-based practice (O’Connell,
Ostaszkiewicz, Sukkar, & Plymat, 2008). Herein, partnership entails a holistic, personcentred approach to care and research, a sharing of power and responsibility, and flexible
rather than rigid parameters for service/care provision. A positive environment,
meanwhile, is thought to give rise to team structures and processes that foster
accountability, commitment, motivation, and social supports that reduce conflict, all of
which are characteristics that depend on effective leadership. In other words, the creation
49
of the much-needed bridges between research and long-term care home settings can be
underpinned by simple and clear implementation interventions, positive researchercaregiver relationships, regular communication, strategic planning guided by theory and a
conceptual framework, and by having optimized human and financial resources
(Kaasalainen et al., 2010; O’Connell et al., 2008). When KT strategies are thus
conceived, the likelihood of achieving successful implementation of change within longterm care home settings is, reportedly, enhanced.
Though these tenets of translating dementia research sound rational, and indeed
more inclusive of all those involved in living and working with long-term dementia care,
lacking in these newer conceptualizations of dementia care KT is a focus on
understanding how care providers’ values and practices interact with and are shaped by
historical, socio-political / structural power(s). In order to achieve the aims of a tri-focal
model of practice that supports partnerships and the living/working environment with
mutually-respected evidence, we must learn how to become attuned to the distribution of
social power, how to recognize the consequences of such power distributions, and how to
incorporate such insights into the development of a/the emerging knowledge translation
activities (Quinlan, 2009).
PIECES and GPA
Two other innovative knowledge translation strategies for LTC home settings have
been reported in the literature. As a consultative, train-the-trainer model, a province-wide
initiative entitled “Putting the P.I.E.C.E.S. Together” (P.I.E.C.E.S. Canada, 2008), was
developed to address the mental health needs of older adults. An acronym for Physical,
50
Intellectual, Emotional, Capabilities, Environment, Social, PIECES focuses on enhancing
the wellbeing, self-determination, and quality of life for older adults. To help put the
PIECES in place, the program was essentially comprised of developing “an in-house
Psychogeriatric Resource Person (PRP), and in the longer term, developing an in-house
Psychogeriatric Resource Team, through which a consistent resource can facilitate a
cultural change and continuous integration of best practices” (McAiney et al., 2007, p.
844). This ‘train the trainer’ program involved more than 2000 health care providers.
Analysis of pre- and post-training confidence, post-training satisfaction, and 3-monthpost-training sustainability indicated that practitioners were generally quite satisfied with
the training itself, and as newly-trained PRPs, they perceived themselves to be more
confident in using the assessment tools that are part of the PIECES suite of tools. The
sustained success of the PRPs in any given facility (where their ‘role in action’ was
described as ‘transferring knowledge’) was largely attributed to supportive work
environments and administrative support. In settings where the PRPs’ duties were
incorporated into their job description, sustainability was greater. Furthermore, in homes
where more than one PRP was trained, that is, where a team of resource consultants
worked together, sustainability and effectiveness were even greater still. Peer mentoring
and coaching were also seen as key enablers to the success of the program (McAiney et
al., 2007). In a separate paper by the same group of researchers, Stolee et al. (2009)
reported on the qualitatively-derived insights into the facilitators and barriers for the
PIECES program that trains PRPs. Consistent with their previously reported findings,
Stolee and his colleagues cited the failure of management to support the PRPs with
opportunities for on-the-job application of the training as a key barrier to sustained
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success, and add to that issues of limited time and staff turnover as other significant
barriers.
Another recent, regional initiative has been to introduce the “Gentle Persuasive
Approach” (GPA) to health care providers who care for older adults with mental health
conditions that manifest as behavioral aggression and disruptiveness (Speziale, Black,
Coatsworth-Puspoky, Ross, & O'Regan, 2009). Though GPA is offered in long-term care
home settings, the setting for the Speziale et al. evaluation was a geriatric psychiatry
program. The evaluation of the program, which targeted both nursing and allied staff,
consisted of pre- and post-intervention surveys that queried participants’ satisfaction of
the program and their intended and actual practice change, as well as pre- and postintervention metrics of resident aggressiveness, staff health and safety records, and
resident health status (measured to allow for analytic descriptions of resident acuity).
The findings of the program evaluation indicated that care providers trained to use the
GPA were generally quite satisfied with the program delivery, and that they reported
having benefited from an improved understanding of the physiological determinants of
the kinds of dementia that result in behavioral disruptions and how to better identify and
respond to such disruptions. Moreover, the frequency of aggressive behavior decreased,
although there were no changes in the health and safety metrics describing staff injury
and time lost.
The evaluations of both the PIECES and GPA initiatives show that trained
providers were satisfied with their training, and that they felt more confident in
interacting with residents with dementia. Measures of satisfaction and confidence,
however, cannot be said to reflect changes in practice outcome. In a care context where
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medical and pharmaceutical decisions are shared among physicians, registered nursing
staff, and families, and where decisions about how to interact with care recipients and
about what interventions to try in managing their behaviors are primarily shared among
registered nursing, family, and non-registered nursing staff, creating changes in practice
outcome is a complex endeavor that involves more than just the provision of staff training
regarding dementia. What remains unexplored, for instance, is an understanding of how
inter-personal power claims manifest as/at the moments of reaching consensus about a
care plan or routine. If the claims a specialized resource consultant (or any staff member)
makes are deemed valid enough to establish or shape the consensus agreements that
constitute the routines that in turn constitute a care culture, what inter-subjective, sociopolitical conditions and mechanisms are necessarily invoked in negotiating consensus for
care plans and delivery? How is the knowledge of personal support workers and family
members treated? How are these care decisions shaped by a culture of compliance
(DeForge, van Wyk, Hall, & Salmoni, 2011) wherein long-term care staff and leaders are
surveilled and held accountable by provincial ministerial legislation. Likewise in the
GPA context, what kinds of individual, organizational, and legislative power, either
absent or invoked, interact with knowledge (i) in arriving at a team-level decision on how
to care for a particular resident with dementia, and (ii) in taking a gentle, persuasive
approach to de-escalating a situation where behavioral challenges manifest? Presuming
that such power-knowledge-consensus dynamics exist, our understanding of dementia
care knowledge is incomplete if we cannot describe the power-laden socio-political
mechanisms that influence how care recipients, family members, and paid care providers
interact in planning and providing dementia care. While it is understood and
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acknowledged that these evaluations of PIECES and GPA were not so ‘critically’ focused
on the intersections of power and knowledge, this important nexus of dementia care
remains unexplored, as are the conditions of knowledge (re)production and exchange
among care providers. Each of these issues warrants further investigation if visions of
partnership-centred, evidence-informed, positive workplaces (O’Connell et al., 2008) are
to be realized.
(A lack of) Engagement of/with Point-of-care Knowledge
A common thread in the critique of the literature reviewed so far is the notion that
point-of-care providers’ experientially gained knowledge is not valued in care planning.
Indeed, a growing body of literature describes how the exclusion of PSWs from dementia
care planning and implementation not only precludes interdisciplinary care, but also the
implementation of individualized care plans (Kontos, Miller, & Mitchell, 2010).
Complicit in this exclusion are standardized care mechanisms (such as the use of the
Resident Assessment Instrument mandated in all Ontario long-term care homes). Kontos
asserts that as a consequence of such a reliance on computerized care planning, the tacit
knowledge that PSWs and other point-of-care staff have accumulated is not
communicated to or included in the dementia care planning process; their presumption –
that tacit knowledge is important in care delivery – is congruent with a burgeoning
interest in understanding tacit knowledge through knowledge ‘socialization’ and
‘externalization’ (Kontos & Naglie, 2009; Kothari, Rudman, Dobbins, Rouse, Sibbald, &
Edwards, 2012; Kothari, Bickford, Edwards, Dobbins, & Meyer, 2011; McWilliam,
2007; Nonaka, 1994).
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The way in which Kontos and Naglie (2009) conceived of tacit knowledge extends
existing conceptualizations wherein scholars have suggested that knowledge is said to be
tacit when it cannot be explicitly articulated (Polanyi, 1966), when the body knows what
to do without deliberation or forethought (Benner, 1984), and, from a caregiving
perspective, when caring “is assimilated as bodily knowing that becomes an extension of
the learner” (Carlsson et al, in Kontos & Naglie, 2009, p. 689). While such scholarship
has helped establish the “legitimacy of tacit knowledge and the creation of a new
epistemic potential for understanding competence, expertise, and caring in clinical
practice” (Kontos & Naglie., 2009, p. 689), Kontos contended that such
conceptualizations are derived in terms of situational understanding – extensive
encounters with concrete situations of clinical practice – and neglect “the primordial and
socio-cultural significance of the body” (Kontos & Naglie, 2009, p. 689). Manifestations
of such ‘primordial’ and ‘socio-cultural’ tacit caring are evident in ‘the power of gesture’
and the pre-reflective co-ordination of visual, tactile, and motor aspects of our body –
imagine scratching an unseen itch without really thinking about it – such that “just as
selfhood is tantamount to the existential expressiveness of the body, caring emanates
from and is supported by the existential expressiveness of embodied selfhood” (Kontos &
Naglie, 2009, p. 696). Kontos and Naglie concluded that care knowledge “that takes
seriously the primordial and the socio-cultural body” is not meant to inform clinical
practice alone; rather, their “exploration of the communicative capacity of the body to
facilitate sympathetic care is intended to provide new insight and direction for future
investigation of the body as a site for the production of tacit knowledge” (p. 700). While
this would seem true in all caregiving relationships, it is especially salient in dementia
55
care relationships because the person with dementia cannot, often, indicate themselves
how they would like to be cared for; caregivers must rely then on the ‘communicative
capacity of the body’ to recognize and respond appropriately to people with dementia
(Kontos & Naglie, 2009; Kontos, 2005).
The path toward including point-of-care long-term care home staff in care
decisions is paved with research that describes and examines the socio-cultural
characteristics of care provision among long-term care home staff. Hutchinson and
Wilson (1998) applied the Theory of Unpleasant Symptoms to dementia care settings,
thus gaining insight into the complexity and interaction of symptoms, influencing factors,
and symptom consequences. Haggstrom and colleagues observed and interviewed nurses
and nurses’ aides (i.e., PSWs) caring for people with dementia to better understand their
interactions and ways of relating with their care recipients. Their findings described how
caregivers achieve understanding of care needs by way of ‘affect attunement,’ inductive
‘puzzle solving,’ having knowledge of residents’ life histories, and by enacting an
intrinsic philosophy of care (Haggstrom, Jansson, & Norberg, 1998). Anderson, Wendler
and Congdon (1998) examined how PSWs intervene in the behaviours of elderly
residents with dementia and found that caregivers could match the behaviours and
activities of residents in caring and supportive ways when the care they provided was
premised on having a sense of residents’ familial values, respect for the elderly,
teamwork, and on knowing the residents. Touhy (2004) pursued this same kind of
appreciative inquiry by illustrating through a case study a focus on personhood, wherein
care looks beyond the disease to the person within. The call made to long-term care home
staff is to develop relationships that nurture personhood, a doubly loaded call in that the
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importance of relationships is highlighted, as is the oft-overlooked notion of personhood
(Touhy, 2004). With a focus on integrating tacit and explicit-instrumental knowledge,
Ayalon (2009) stated that caregivers should not only be provided with ample information
about the medical conditions and needs of care recipients, but that specific emphasis has
to also be placed on encouraging workers’ intuitive approach to dementia caregiving.
As a result of organizational/institutional dynamics that manifest in interpersonal
yet often hierarchical relationships (Beard, 2008), such information-sharing practices are
often absent in long-term care homes (Kontos, Miller & Mitchell, 2010). The findings of
Kontos and colleagues indeed complicate our understanding of the socio-cultural climate
of long-term care homes by showing how the caregiving knowledge of point-of-care staff
is neither captured by standardized assessment instruments nor relayed to the
interdisciplinary team. Working the intersection between experiential, tacit knowledge
and inter-organizational relationships (wherein more inclusive relationships enable the
privileging and sharing of previously under-valued knowledge), Kontos et al.’s
recommendations included incorporating point-of-care (read: PSWs’) knowledge in care
planning and documentation, and, in acknowledging the occupational shifts in caregiving
among registered and non-registered nursing staff (Anderson, Ammarell, Bailey, ColonEmeric, Corazzini, Lillie et al., 2005), examining personal support workers’ occupational
identity and their role as interprofessional brokers in long-term care. This suggests for
this present research an assumption that PSWs’ knowledge is important to long-term
dementia care and an interest in understanding how their knowledge claims shape the
culture of dementia care delivery, or, if PSWs’ knowledge is not incorporated into care
planning, what socio-political and –historical norms (re)produce such marginalization?
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Seeing with (Critical) Ethnographic Eyes
In the 1980s, Diamond’s fieldwork in long-term care settings drew attention to
these same issues of marginalization. Diamond’s research was based on lived work
experiences in long-term care: he trained and then worked as a personal support worker
(then called a nurse’s aide) in three long-term care homes in the southwestern United
States. A trained sociologist, Diamond gained his insights through ethnographic means,
namely by active participant observation, meticulous journal-keeping, and, in order “to
preserve the context in which things were said and done,” Diamond employed a novellike format in representing his findings “so that the reading might move along as in a
story” (p. 7). Increasingly, as the chapters proceed, he interspersed sociological
commentary into the conversation. What Diamond saw and experienced, he interpreted
as ongoing erasure of the work, experience and knowledge of PSWs, as it is only the
physical life of long-term care home residents that is monitored and documented. The
caring (and often intimate) touch that PSWs bring to their work along with tacit-level
know-how and emotional labour are all rendered invisible by virtue of the processes of
care commoditization: business constructs and measures (e.g., efficiency, profit) supplant
the caring discourses of long-term care homes and ‘remake’ the social, interpersonal
elements of care into something less important. To regain and re-legitimize these
elements of relational care, Diamond called for research that enables point-of-care staff
and care recipients themselves to “be considered a vital voice in [long-term care] home
research and political action. They know a lot about how they would like their lives to be
different, and analysis of their situation can provide concrete bases for change” (1986, p.
1293).
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Ethnographic research typically considers the socially and historically shaped
values, beliefs and behaviors of a particular group (e.g., Spradley, 1979; Thomas, 1993).
Savishinsky (1993) asserted that descriptive ethnographic research is indeed appropriate
in LTC home settings, and since Diamond’s (1986) work, several scholars in the field of
gerontology have advocated for and conducted research designed to be sensitive to a
specific population and capable of generating valid knowledge about its culture (Hirst &
LeNavenec, 2007; Hutchinson & Marshall, 2000; Beuscher, 2007; Mott, 1997; Chatterji,
1998). Critical ethnography extends this scope by focusing specifically on the creation
and hoarding of social power to reproduce oppressive conditions within a particular
culture (Averill, 2005; Carspecken, 1996; Cook, 2005; Manias & Street, 2001), and a
number of studies in long-term care settings have been conducted to develop theory and
action that enable equitable, suitable nursing and health care (Clarke, 1997; Henderson,
1994; Rempusheski, 1999; Ward-Griffin et al., 2003).
Specific to dementia care yet closer to being descriptive rather than critical,
power-focused ethnographies, the works of Mott (1997) and Chatterji (1998) are good
examples of how ethnography has been used to better understand the lived experience of
dementia. In exploring ‘personhood,’ Chatterji, for instance, used ethnographic methods
of observation and in-depth, semi-structured interviews to better understand the emotions,
desires, and intentions of people with dementia. The findings highlight the pervasiveness
of the biomedical model wherein a long-term care home resident’s “impoverishment of
expressive ability must indicate diminished subjectivity” (p. 357). A methodological
challenge that Chatterji takes up then is to be concerned about representing the person
with dementia’s experience and concludes, much as Kontos (2005) does, that as
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researchers we have a responsibility to free ‘voice’ “from a restricted location in natural
language [and] to embed it in other forms of embodiment” (Chatterji, 1998, p. 372). Such
methodological challenges remain of salient concern not only as issues of representation
(Manias & Street, 2001), but, more specifically, with respect to communicating (in the
context of qualitative research) with people with dementia (Beuscher & Grando, 2009;
Richter, Roberto, & Bottenberg, 1995; Tappen, Williams-Burgess, Edelstein, Touhy, &
Fishman, 1997). Such concerns suggest a need to be attuned to more than just linguistic
representations of values and cultural belief and to derive meaning from embodied forms
of communication.
Other examples of ethnography that are not explicitly critical include the work of
Hirst and LeNavenec (2007), who, similar to Chatterji, drew attention to how workplace
culture often creates the conditions where the “clash of organizational objectivity and
residents’ subjectivity devalues personhood” (p. 7); Hutchinson and Marshall (2000) used
observation and interview techniques to explore the perceptions of a therapeutic
recreational tool-kit; Beuscher’s (2007) focused ethnography featured nine people living
with dementia and explored the role of spirituality in their health and wellbeing; and
Beard (2008) observed care providers and recipients clinicians’ attempts at gaining trust
in a specialty dementia diagnostic clinic. Others have conducted ethnographies in longterm care homes that focused less on the perceptions of care recipients and more on
organizational support (Lyons, 2007), social and family support systems (Hweidi, 1999),
or on nursing interventions to increase self-care among the residents with dementia in a
long-term care home (Singleton, 1993). Lyons’s work, for instance, integrated findings
from in-depth interviews and observation at two long-term care homes to better
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understand how the built environment, features of nursing discourse, and risky
continence care practices intersect to (oftentimes) violate residents’ rights to privacy,
dignity, and self-preservation. Conklin’s ethnographic investigation into meaningmaking among long-term care staff (Conklin, 2009) revealed that long-term care staff
engage in meaning-making processes that create a sense of coherence and a sense of
purpose while also allowing for the construction of individual and group identities, as
well as the creation and maintenance of the competence needed to complete the required
tasks.
By focusing on descriptions of the lived experiences of people living or working in
a culture of long-term care, each of these dementia-focused ethnographies share methods
that are methodologically typical for ethnography or critical ethnography (those being
participant observation, in-depth interviews, focus groups, and document analysis), but
they do not explicitly examine how power infiltrates knowledge (re)production. Such an
aim belongs to and typifies critical ethnography, as indeed, critically oriented researchers
are said to “basically begin their research with the assumption that contemporary
societies have systemic inequalities complexly maintained and reproduced by culture”
(Carspecken, 2001, p. 4). Moreover, Carspecken explains, critical researchers
“conceptualize such inequalities as a structural feature of society, and they wish to
conduct research that will support efforts to reduce it” (p. 4). As described below, only a
small number of long-term care dementia research studies have adopted a critical stance
that goes beyond ‘thick description’ by problematizing socio-political structures and/or
cultural-historical patterns within the context of dementia care (Bland, 2004, 2007;
Bourbonnais & Ducharme, 2010; DeForge, van Wyk, Hall & Salmoni, 2011; Jervis,
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2002; Kontos, 2005; Lane, 2007, 2011;Ward-Griffin et al., 2003); none have done so
with ‘knowledge translation’ as the primary research goal.
In New Zealand, critical ethnographic research explored the constructs of comfort
and home among people with dementia living in long-term care (Bland, 2004; Bland,
2007). Over the course of 90 days of fieldwork in three long-term care homes, Bland
conducted semi-structured interviews with 27 nursing home residents, and 28 staff.
Additionally, and in keeping with an ethnographic methodology, Bland (2007) undertook
“a range of descriptive, selective, and focused observations of nursing home life” (p. 939)
with an aim to better understand daily life, care delivery practices, and underlying
rationales for action. Her analysis yielded the conclusion that failing bodies, the absence
of appropriate community supports, and a fear of being a burden to families renders longterm care residents as devastated, and in need of comfort. “They required individualized
care to ease their discomforts, as well as support to deal with the demands of institutional
living and their inevitable death. Yet promises of individualized care, provided in a
home-like environment, were little more than rhetoric” (p. 942). For Bland, the
techniques of critical ethnography illuminated contextual and environmental factors that
“impact both positively and negatively on experiences of comfort and discomfort …
[highlighting] the unnecessary discomfort generated by nursing home life itself and the
well-intentioned but destructively disempowering care delivery practices” (p. 942).
Moreover, “this study also confirms that comfort cannot be ‘seen’ by nurses but must be
verified with each resident on an individual, ongoing basis” (p. 942).
Kontos (2005) similarly focused her critical ethnographic lens on the embodied
selfhood of people with dementia and, like Leibing (2008), troubled the prevalence of the
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mind/body dualism that characterizes biomedical reductionism in dementia care. For
Kontos (2005, p. 559), “[t]he notion of embodied selfhood speaks of a complex
interrelationship between primordial and sociocultural characteristics of the body, all of
which reside below the threshold of cognition, grounded in the pre-reflective level of
experience, existing primarily in corporeal ways.” To achieve their critical aims and to
enact innovative knowledge translation, Kontos and Naglie (2006) transformed the
ethnographic text into a performative text by developing a stage-play. By making their
work more accessible to their target audience (personal support workers), and by
conveying through performance the embodied selfhood that could not be justified by text
alone, focus group participants (i.e., health care practitioners) reported “an increased
understanding gained from attending the production, and a strong endorsement of the use
of drama as an educational tool for disseminating information about dementia care”
(Kontos & Naglie, 2007, p. 799), evidence of achieving – at least in part – an aim to
increase the critical consciousness among care providers that expressions of selfhood are
not limited to verbal utterances and to stimulate dialogue about how care could thus be
conceived of differently. Similar in its message, the critical ethnography by Bourbonnais
and Ducharme (2010) sought to understand the meaning of LTC home residents’ screams
and concluded that particular attention be paid to the care provider – recipient
relationship. Where the work of Kontos (2005), Bland (2007), and Bourbonnais and
Ducharme (2010) focused on the experiences of long-term care home residents, other
critical ethnographers explored the relationships of family caregivers with LTC home
nursing staff (Ward-Griffin et al., 2003), as well as issues of power within and among
long-term care nursing staff (Jervis, 2002; DeForge et al., 2011).
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Jervis (2002) found that the social stratification among nursing staff (i.e.,
stratification between registered nurses, registered practical nurses, and personal support
workers) mirrors in many ways the stratification inherent within doctor-nurse
relationships. Consequently, point-of-care staff members (i.e., PSWs) are cast as
subordinates, charged with tasks deemed inferior to professional nurses’ scope of practice
– rejected tasks that, when carried out, project onto care recipients a sense of devaluation.
Jervis’s aptly titled “Working in and around the ‘chain of command’” paper concludes by
listing a number of resistance strategies that PSWs employed to counter the powers by
which they are subjugated, including: “focusing on resident care rather than nurses’
orders, refusing to make themselves ‘known’ to supervisory staff, limiting the scope of
their involvement with higher level staff as much as possible, engaging in industrial
sabotage, and leaving the job when the situation became intolerable” (p. 21).
Such strategies have elsewhere been described as ‘workarounds’ (Lingard, Conn,
Russell, Reeves, Miller, Kenaszchuk, et al., 2007; Kontos et al., 2010). Kontos et al.
observed that PSWs do indeed exercise their own agency “as evidenced by their abilities
to perceive, negotiate, reluctantly comply with, or selectively resist provincial and
institutional regulations, and thereby shape point-of-care decisions in accordance with
their own deliberations concerning quality care” (2010, p. 7). Lingard et al., however,
caution that while workarounds are acts of resistance that may appear to offer a ‘quick
fix’ to a problem, seldom are underlying causes addressed and problems continuously recirculate throughout the system, resulting in ‘workaround accretion’ wherein
workarounds ultimately complicate rather than solve problems and contribute to a kind of
‘functional dysfunctionality’ within the workplace culture (Lingard et al., 2007, p. 664).
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Rather than jaded, resistive, covert, and ultimately dysfunctional workarounds of such
power differentials, new, innovative strategies to engage point-of-care staff and to foster
their empowerment are necessary (Jervis, 2002; Janes et al., 2008; Draper et al., 2009;
Kontos et al., 2009).
More recently, Lane conducted critical ethnographic work to explore the
assessment and treatment of patients in mental health units (2007) and, subsequently, to
explore transitions from mental health units to LTC homes (2011). Findings from the
former study problematize the diagnostic and placement tools common to dementia care
and conclude with a call for more ‘verbal work’ among clinicians, family members and
people with dementia to compensate for the short-sightedness generated from assessment
metrics. Lane’s latter work (2011), which also included in-depth interviews, observations
and document analysis, is re-presented through the eyes of a daughter of a woman with
dementia; such a personalized narrative serves to draw attention to the need for more
geriatric mental health services (and enhanced access to these services), as well as to
invite consideration of the benefits of specialized care units (SCUs). Lane maintains that
care provided in SCUs would enable staff to develop expertise in caring for people with
dementia so long as the units are adapted to the unique complexities of dementia (e.g., a
suitable built environment, relaxed care routines, increased freedom and autonomy
among frontline staff and care recipients), and so long as staff are supported with
specialized training, which should focus on increasing awareness regarding ageism and
regarding how to recognize mental distress in physical symptoms. All of this, Lane
suggested, ought to be premised upon an understanding that the achievement of
autonomy be held in balance with institutional needs, although no concrete strategies
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were offered for determining what those needs are or how to achieve such a balance. This
suggests then a need to better understand how historical and socio-political factors
influence how dementia care knowledge is created, shared, and enacted in such settings
so that in turn SCUs can indeed become specialized dementia care units and not simply
the manifestation of segregation. Reiterating the need to redress a propensity toward
privileging institutional needs over residents’ needs, DeForge et al. (2011) conducted a
critical ethnography in a municipally owned long-term care home. Their findings suggest
that a culture of compliance shaped by policy-driven structural mechanisms (e.g.,
standardized assessment protocols, accreditation processes) re-produces conditions that
result in point-of-care staff being afraid and unable to care, and they conclude with a
“resounding call to recognize and redress how policy-driven accountability mandates
shape the caregiving/receiving experiences of long-term care staff and residents” (p. 11).
To summarize, ethnographic research that has been conducted in the context of
long-term dementia care has drawn attention to: the lived, subjective experience of longterm care home residents (Bland, 2005, 2007; Bourbonnais & Ducharme, 2010); the
influence of social and organizational influences on care practices (Diamond, 1986;
Hweidi, 1999; Lyons, 2007); and, most critically (insofar that a focus on power exists),
the socio-cultural relationships between families and long-term care home staff (WardGriffin et al., 2003) and among long-term care home staff (Jervis, 2002). Consistent
among these works are calls for heightened awareness – ‘more attention’ to: residents’
comfort (Bland), to the meaning of screams (Bourbonnais), to the influence of the
commoditization of long-term care (Diamond), to the role of social/family supports
(Hweidi), to the importance of staff-family relationships (Ward-Griffin), or to the
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strategies frontline long-term care home staff employ to mitigate their subjugation
(Jervis). In instances where these works successfully raise the critical awareness (Cook,
2005; Freire, 1972) of readers – particularly as it relates to issues of social justice – then
these works have achieved their critical goal(s). However, insofar that a goal of critical
research is to catalyze change or to achieve a better, common good for residents, families
and staff, these works seem to be characterized more by calls for action than by actual
action. To be fair, these same studies have been driven by their methodological mandate
to uncover and problematize the taken-for-granted values, practices, and socio-cultural
conditions that contribute to the very issues requiring action, and this in itself is important
and necessary work. The critical trick though is to enable research subjects in particular,
and their professional peers generally, to access and reflect and act themselves on the
findings (Freire, 1972). This would seem to require alternative conceptualizations of how
research evidence is, firstly, conceived of and valued, and secondly, how it is brought to
bear on the subjects for whom it matters. In other words, how transformative is critical
ethnography meant to be? The following, final section of this literature review examines
where/when critical ethnography and knowledge translation have been paired at all, then
if and how such a strategy has been utilized in long-term dementia care settings.
Critical Ethnographic Knowledge Translation
There is a dearth of research literature exploring the intersections of critical
ethnography (CE) and knowledge translation (KT). While a small number of CE/KT
studies exist in the HIV/AIDS literature (e.g., Golobof, Weine, Bahromov, & Luo, 2011;
Shambley-Ebron & Boyle, 2006), the strength of these research projects is limited to their
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ability to generate theory (of particular cultural norms and values) that, purportedly,
forms the basis for intervention (i.e., prevention and treatment) strategies. The nursing
education literature similarly describes a small number of studies that relied on
ethnographic methods to better understand barriers to long-term care nurses’ research
utilization in a pediatric critical care setting and reiterated factors commonly understood
to preclude the adoption of new evidence (those being hierarchical power structures,
routinized and technologically-driven work, an ethos of anti-innovation, and a culture of
compliance) (Scott & Pollock, 2008), or to understand nurses’ learning environments
(Buller & Butterworth, 2001; Cruttenden, 2006).
Focused specifically on the learning needs in long-term care settings, Cruttenden’s
(2006) ethnographically derived claims included valuing in leadership the ability to
define “the roles for categories of staff” and to then support the capacity of each category
“to identify their learning needs” (p. 347). To meet the learning needs of long-term care
nurses, Cruttenden listed the following as key considerations: elements of
transformational leadership, such as mentoring and consideration of others’ growth;
charismatic inspiration, motivation and enthusiasm; and intellectual stimulation via
questioning and challenging; ultimately, nurses must take an active role in determining
their own learning needs. While these findings serve well the leaders and nurses in
higher, more powerful positions, they risk (re)producing subordination and stratification
rather than inter- or trans-disciplinary practices that value and leverage the experiential
knowledge of the ‘lowly’ point-of-care provider – i.e., the PSW.
While outside of the long-term care sector per se, other ethnographers have
incorporated into their projects a more explicit aim to transform health care practices and
68
beliefs among health care providers (Lemieux-Charles, McGuire, & Blidner, 2002;
Quinlan, 2009). Quinlan examined primary health care workers’ knowledge work by
focusing on peoples’ everyday experiences to understand the influence of socio-political
trends, and the insights and strategies she advocates seem applicable to the long-term care
context. In attempting to trace knowledge from its creation to its being shared to its
application, Quinlan offers an account of how texts (i.e., policies, procedures, legislation,
etc.) coordinate team functioning. A team member citing a particular action or
suggestion, for instance, activates text(s), and this can open up inter-team dialogue about
tacit-level knowledge that may be pertinent. The critical interplay, then, between explicit
and tacit knowledge is better understood in this situation as a local, particular response to
the social organization of power manifest as text. Nonaka’s (1994) theorizations of such
dynamic knowledge creation offer a typology for conceiving such interplay: when
formal, explicit knowledge is enacted by a learner it is said to be internalized; tacit
knowledge is shared and spread throughout an organization via processes of
socialization; and tacit knowledge, when inscribed as formalized, explicit knowledge, is
said to have been externalized (Nonaka, 1994). While the expression of tacit knowledge
is not always understood to be a response to (organizational) power (as in the example of
text-activation above), insofar that knowledge is power, critical re-conceptualizations of
theories of knowledge creation (like Nonaka’s) should assume power to already and
always be at play in processes of socialization, internalization, and/or externalization.
In terms of knowledge creation, Quinlan (2009, p. 626) follows Nonaka in
believing that although tacit knowledge is often difficult to express, “it is precisely in its
conversion into explicit knowledge through articulation that new knowledge is created.”
69
Knowledge creation also occurs through ‘internalization,’ that is “when explicit, codified
knowledge becomes part of the stock of taken-for-granted understandings” (Quinlan,
2009, p. 626). Nonaka posits that it is the conversion from tacit to explicit knowledge,
and/or vice versa, that forms the conditions for the development of new knowledge.
Notably, Nonaka describes how “[t]heories of organizational learning do not address the
critical notion of externalization, and have paid little attention to the importance of
socialization” (1994, p. 19). Quinlan’s work folds into this theoretical shortcoming two
additional critiques of the evidence-based practice movement, namely that despite efforts
of the KT community to highlight the importance of tacit knowledge (e.g., Greenhalgh et
al, 2005; Kothari & Armstrong, 2011; Kothari et al., 2012), scholars do not know how to
fully account for the importance of tacit, practice-based knowledge in the creation of new
knowledge; moreover, knowledge processes are conceptualized as technical, cognitive
processes. As such, “the social, communicative aspects of the knowledge processes are
not featured; in particular, there is little consideration of the relationship between
knowledge and the social organization of power” (Quinlan, 2009, p. 626). The findings of
her research confirmed the importance of tacit knowledge in what she calls ‘knowledge
work,’ that is, the creation, transfer, and application of knowledge. Moreover, like
Nonaka, Quinlan highlighted the role of and conditions for communication in gaining
access to such tacit know-how: “[t]he dialogical exchange that is necessary to the
collective clinical decision-making of teams facilitates the articulation of tacit knowledge
and thereby opens up the potential for creation of new, communicatively achieved
knowledge” (Quinlan, 2009, p. 638).
70
Quinlan (2009) also suggested that knowledge work carried out in the context of
collective decision-making involves the negotiation of knowledge claims. “Thus,
knowledge creation, transfer, and application is best understood by considering the social
organization of power” (p. 638), which includes textual, personal, and disciplinary
particularities. Quinlan’s critical ethnographic research presents an alternative to
descriptive ethnographies that might unintentionally reproduce knowledge and power
hierarchies and/or miss opportunities to affect immediate change in the local setting by
offering a critical, theoretical and empirical foundation and impetus for exploring
knowledge work in long-term care settings. In other words, the long-term care literature
that points to the marginalization of personal support workers’ tacit care knowledge (e.g.,
Kontos et al., 2010) might be well addressed through a systematic examination and
dialogic, critical reflection of ‘dynamic knowledge creation’ processes (Nonaka, 1994)
such that the patterns and unique instances of knowledge socialization, internalization,
and externalization are better understood as power-laden knowledge claims that shape
dementia care routines.
Indeed, among the critical ethnographic–KT projects conducted to date, little
attention has been paid to how knowledge is negotiated within the social and system
powers that formally or informally shape a particular context and the care decisions
therein, and no such work has occurred within long-term care settings. Meanwhile, in
terms of what has been asserted in the long-term care – KT literature, many of the
context-assessment, best practice guideline, knowledge network / knowledge brokering /
community of practice projects are exemplars of early efforts to communicate evidence to
existing and potential health care service providers/users; while each shows promise, all
71
are in need of more robust evidence (Dadich, 2009) that similarly must attend to the
socio-political relationships in specialized care units so as to more fully reflect the dayto-day realities of living and working in dementia care. This is a critical shortcoming in a
literature that already suggests that a significant knowledge gap exists in terms of how to
best go about generating, translating and implementing knowledge about caring for the
elderly – especially those with dementia – in long-term care settings (Berta et al., 2010;
Janes, Fox, Lowe, McGilton, & Schindel-Martin, 2009; Kaasalainen et al., 2010; Stolee
et al., 2009).
Rationale for this Ethnographic LTC Project
Evident in the above review of the long-term care, dementia care, and KT
literatures, is the mounting pressure that the long-term care sector faces in light of
increasing system demand, system regulation, and constrained resources. The dementia
population within the long-term care sector is particularly affected by these system trends
insofar that caring for people with dementia requires knowledge, skills, time, and
training. Without such resources, many facilities have adopted a special care unit model
of care. The risks for isolation and segregation therein leave many people concerned
about the quality of life of residents with dementia in long-term care, resulting in a
resounding call for knowledge translation activity in long-term care settings, particularly
regarding dementia care. Through the course of KT’s relatively brief disciplinary
evolution, best-respected strategies have emerged – those being: the generation of
organizational support, buy-in and resource provision; the utilization of local opinion
leaders and/or communities of practice; and the use of theoretically-guided practices
72
within a cogent KT framework – and its future directions have been called for – to use
and test theory, to pay attention to processes just as much as products, and to hone a
better sense of how context impacts KT. Yet our understanding of KT in long-term care,
especially regarding dementia care, remains far from complete. In fact, there is a dearth
of evidence about what successful KT looks like in long-term care. Moreover, the
existing conceptualizations of knowledge employ (what Freire, [1972] has called) a
banking metaphor, wherein expert-derived knowledge is presumably deposited into the
heads of needy learners without much (or any) consideration of their existing
experiential/tacit/embodied knowledge, or of the socio-political and –historical
mechanisms that shape their care practices. Conceiving of knowledge differently, that is
as something different than that which can be deposited into learners, allows for a more
creative and critical examination of the link between knowledge and practice, and
perhaps contributes to the growing movement away from the tiring metaphor of
knowledge translation (Greenhalgh & Wieringa, 2011).
Thus, what this current research seeks to understand from a critical perspective is
the culture of long-term dementia care knowledge, wherein historically located and
socially- and discursively-shaped care practices are iteratively created, shared, and
applied within and among a group of people living and working with dementia. My
contention is that it is important to know about this insofar as such an understanding can
presumably shed light on what is otherwise considered a black box of organizational
context (Rycroft-Malone, 2007), an understanding of which is presumed to factor
significantly in the achievement of enhanced and sustained quality of care. In other
words, understanding the culture of dementia care knowledge is important for the
73
purposes of re-cognizing knowledge translation and the re-conceptualization of quality
improvement initiatives.
Statement of aim and research questions.
The aim of this research project is to critically examine the culture of dementia
care knowledge in a long-term care home wherein a culture of dementia care knowledge
is conceived as the ways in which long-term care residents, family members, and staff
routinely create, share, and variably enact different forms of dementia care knowledge
within a context of socio-political and –historical influence.
Given that the aim of this research project is to gain a critical understanding of the
knowledge culture in which dementia care is provided in LTC, the following research
questions are posed:
(i)
What are the social routines of staff and family caregivers in providing dementia
care in a long-term care setting?
(ii)
What does ‘dementia care’ entail in a long-term care setting? What knowledge is
necessary to provide care to people with advanced dementia?
(iii)
How and why are routine care practices (not) attuned to residents’ (embodied)
selfhood?
(iv)
What knowledge claims are invoked in shaping particular care routines for
residents with dementia? How are these claims related to socio-political and –
historical influences?
74
(v)
What kinds of power are invoked in the creation, acquisition and enactment of
dementia care knowledge? Who is served and who is oppressed or marginalized
by such power?
(vi)
What roles do staff, family members, and people living with dementia enact in
negotiating care?
(vii)
What values and norms shape care practices among those participating in
dementia care?
By posing such questions and thereby aiming to gain insights into the relational and
socio-political power dynamics that affect the values and norms of long-term dementia
care, this dissertation is poised to offer a critical interpretation of the culture of dementia
care knowledge. Such an understanding of dementia care knowledge can in turn inform
knowledge translators’ efforts to understand context, and, perhaps more importantly, can
contribute to a re-cognition of ‘knowledge.’
75
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– Chapter Three –
Theoretical Orientation: Establishing a Critical View and
Addressing the Triple Crisis of Representation
This chapter is comprised of two parts that collectively offer a theoretical
orientation to the methodology deployed in this study. To begin, I provide in part one an
overview of the critical value orientation and the key epistemological tenets that make
this research ‘critical,’ then outline briefly Habermas’ influence on Carspecken, noting in
particular how Habermas’ theory of communicative action plays a fundamental role in
Carspecken’s theoretical methodology. In part two of the chapter, I shift the focus of this
theoretical orientation toward the quality and rigour of this dissertation by describing how
I addressed three inter-related questions: (i) how can I honorably re-present the lived
experiences of research participants in academic prose? (ii) by what means can my
account of their culture of dementia care be judged as legitimate? and (iii) how can my
account of their culture trigger actual change?
Part 1: Carspecken’s Critical Values and Ways of Knowing, and the Influence of
Habermas
Carspecken suggests that the relationship between a researcher’s values and his or
her research findings is a “complex and many-layered affair. Yes, there is a connection
between findings and values. No, we cannot simply claim their fusion into being without
giving contexts and clarifications” (1996, p.5). He asserts that although critical
researchers value “conduct[ing] research as a way of bettering the oppressed and
downtrodden,” such a value orientation “does not determine the ‘facts’ we find in the
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field” (p. 6). As such, the exercise of distinguishing values from findings is important,
Carspecken says, “because good critical research should not be biased” (p. 6).
Holmes and Smyth (2011, p. 151) perceive such a concern with bias as
incommensurate with a critical worldview that typically accepts ‘bias’ “as an inevitable
and potentially positive aspect of the research process,” but what I understand
Carspecken to be saying is that one’s research findings should be empirically driven, not
value-driven: yes, values play a significant role in selecting research topics, sites, and
questions, but there an assumption of this research is that there still remains empirical
means to generate possible answers to one’s research questions. These empirical means
are a natural extension of one’s way of knowing the world, of one’s epistemological
stance, yet the findings per se ought to be primarily driven by the data. Hence the
distinction between values and facts: between what one feels is right or wrong, and what
one can know about that being so.
In order to make this distinction clear as it pertains to this study, what follows is
an explication of the value orientation and epistemological tenets that typify ‘critical’
research. Therein, I offer reflections on my own uptake of these values and tenets within
the context of studying the culture of dementia care knowledge.
Critical values.
Values that unite most critical researchers generally relate to a recognition that
myriad forms of oppression exist in our society, and to a commitment to using research to
redress such conditions (Carspecken, 1996; Kincheloe & McLaren, 1994). In listing these
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values (Kincheloe and McLaren, 1994, pp. 139-140, cited in Carspecken, 1996, pp. 6-9),
I situate myself and this study within this critical value orientation.
1. As we (critical researchers) recognize society and culture as wanting in many
ways, we value research that critiques social culture and supports efforts to change
social injustices.
What I recognized as ‘wanting’ in our society are the living and working
conditions in long-term care settings: people living with dementia (and their families)
often seem to struggle to adjust to the onset and progression of dementia, and with
transitions into community and LTC services. Moreover, caregivers appear to face
immense challenges in providing dementia care, ranging from physical and/or verbal
aggression to being under-valued in care planning. As such, I embarked on this study in
part to redress such wanting conditions by empirically examining how the value of
providers’ care is conditioned by culture.
2. As we recognize that certain groups in any society are privileged over others,
we oppose all forms of inequity.
With due respect to organizational hierarchies and their necessity, I felt concerned
that the care knowledge of point-of-care providers in community and in LTC programs,
namely family members and unregulated personal support workers, is not valued despite
their often intimate and frequent interactions with clients/residents. Moreover, I
recognized that as an arguably vulnerable population, people living with dementia are at
risk of being excluded from their own care planning. Believing that important sources of
knowledge might be ignored, I felt compelled to examine and redress the seemingly
inequitable distributions of power and knowledge-valuations in dementia care.
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3. As we recognize that oppression and inequality are most forcibly reproduced
when subordinates accept their social status as inevitable, we value research that can
uncover the subtleties of oppression so that its invisibility to those affected by it might be
removed, so that oppression can be challenged.
Indeed, I value the potential to mitigate oppression that inheres in critical research
and have reflected at length on how the findings from this study can be re-presented in an
accessible and relevant fashion so as to achieve a re-cognition – a seeing anew – of the
conditions that (re)produce resignation to subordination.
4. As we recognize that oppression has many faces, we value a commitment to
redress all forms of oppression, not to focus on just one form only to ignore others.
In this regard, I recognize that oppression is ubiquitous, that people are oppressed
not only by people whose actions tend to be self-serving, but also by the system or
structural factors in which people are immersed. Rather though than conceiving of
structures as fixed, structures are conceived here as implicated by meaningful action; that
is, a structure does not determine the action, it is rather drawn upon, reproduced, or
altered by actors. As such, structures act fundamentally as claims, some of which gain
stability through reproduction and some of which wane when other people refuse to
affirm them. Thus, conceiving of and redressing the conditions that shape living or
working with dementia cannot rely simply on examining one sub-group’s experiences;
rather, a variety of inter-personal and system-wide factors require critical consideration.
5. As we recognize that mainstream sciences are generally, although most often
unwittingly, part of the oppression, we value research practices that differ from
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mainstream researchers’ practices; we value a concept of truth(s) that presupposes equal
power relations.
To me, such a valuation of critical research conveys a kind of humility that seems
almost counter-intuitive to the making of ‘scientific’ claims; by acknowledging that this
study is as political as it is scientific, and by adopting a stance that questions its own
authority, my aim has been to not over-power research participants with projections of
what I think is truly going on in their lifeworld of dementia care, but rather to create
dialogic conditions within relationships where participants can state or ask whatever is on
their mind, even if and ideally when they contest my interpretations of the data. Such an
aim reflects this notion of ‘truth presupposed by equal power relations’ and implies, in
others words, that “[un]equal power distorts truth,” hence the imperative to identify the
ways in which “power corrupts knowledge. This matter goes to the very heart of critical
epistemology, and it allows fundamental value orientations (for democracy, equality, and
human empowerment beyond the merely democratic) to fuse with epistemological
imperatives” (Carspecken, 1996, p. 21).
Critical ways of knowing.
While the reflections above explicate the critical value orientation (Carspecken,
1996) that I brought to my doctoral research, I turn now to reflect on the epistemological
tenets that characterize this critical research, and do so to reiterate Carspecken’s (1996, p.
8) assertion that “[t]he precise nature of oppression … is an empirical question and not a
given belief.” The tenets described below establish the epistemological grounds upon
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which this study stands. Again, I follow Carspecken (1996, p. 9) who follows Kincheloe
and McLaren (1994, p. 139) in delineating these critical tenets.
1. Given that all thought is fundamentally mediated by power relations that are socially
and historically constituted, we (critical researchers) must be extremely precise when it
comes to the relationship of power and culture, power and validity claims, power and
thought, and power and research claims.
Further to the point that values do not determine findings, I take from this tenet
the understanding that it is neither rigourous nor sufficient to end up making a research
claim that ‘such and such a culture is imbued with power’ – that would simply reflect a
value bias but fall short of offering any empirical findings per se. Thus, as much as
possible, what must become known is: the nature of power dynamics between me and the
study participants, and the extent and impact of my active and reflective efforts to
mitigate power imbalance. Substantively, and in keeping with my research questions, my
empirical task is to explicate the role of power in participants’ negotiations of care
routines and practices.
2. Statements of ‘fact’ are always affected by values and are thus never strictly neutral or
objective. Therefore, a criticalist must make the fact/value distinction very clear and must
have a precise understanding of how the two interact.
The delineation of (my) value orientations in relation to epistemological tenets
begins to take this into account, but this tenet also applies of course to the analysis of
field data: my empirical task is to bring to the fore the (often remotely backgrounded)
values the participants hold and/or abide by when passively or actively negotiating care
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practices and norms, and to offer a sense of the nature of the relationship between that
value, its source, and its manifestation in care/practice.
3. The relationship between concept and object and signifier and signified is never stable
or fixed and is often mediated by the social relations of capitalist production and
consumption.
Again, the empirical task is to go beyond making claims that relatively stable
semantic significations exist and to instead list and critically contextualize the most
salient symbolic cultural artifacts within a critical perspective so as to trace the evolution
of such signifiers and symbols back to broader historical- and socio-political (and often
capitalist) roots. These three epistemological assumptions, fueled by a critical value
orientation like the one described further above, were fundamental to this study’s critical
worldview that examined the places where unequal power distorts truth in dementia care.
But Carspecken (1996) also draws on Habermas in terms of conceiving of what there is
to know, how we come to know, and what conditions should be in place in arriving at
‘truth.’ I turn now to discuss the influence of Habermas as it relates to the empirical
nature of this critical study.
The influence of Habermas.
Habermas discusses ontology in relation to the notion of “lifeworlds,” referring to
the (often) shared experience of physical and social worlds that constitute our everyday
lives (Habermas, 1985a, 1985b). These ontologically real lifeworlds consist of objective,
subjective, and inter-subjective elements that intertwine to produce practical, social
knowledge about what is true and what is right. Central to this view is the inter-subjective
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domain, hence the ontological primacy Habermas affords to communicative action and to
discourse ethics and dialogue. Herein, Habermas establishes the concept of discursive
truth, which is defined as “the idealization of the discourse conditions that make it
possible to reach agreements about true statements and correct norms, and not as the
reality or truth of what is idealized” (Marti, 2004, p. 327). That is, as Marti implies, rather
than being concerned about whether or not a statement reached from a particular
linguistic community can possibly transcend its originating context, whether truth
actually exists, Habermas contends that what one should be concerned about is whether
or not the statement was arrived at fairly. His idealized conditions
ensure the full inclusion as well as the equal, uncoerced participation oriented
toward reaching mutual understanding on the part of all those affected so that all
relevant contributions to a given topic can be voiced and so that the best
arguments can carry the day. Accordingly, a proposition is true if it withstands all
attempts to invalidate it under the rigourous conditions of rational discourse
(Habermas, in Marti, 2004, p. 327).
Thus, in Habermas’ conception, it is inter-subjective discourse that establishes
objective lifeworld claims, that is those ‘facts’ that do not depend on our attitude toward
them but rather reference the objective world and shared representations thereof;
similarly, normative lifeworld claims are derived from inter-subjective discourse insofar
that claims about what is proper or appropriate are deemed valid when those affected by
the norm “bring their experiences and background knowledge – including previously
agreed normative frames – into the dialogue” (Marti, 2004, p. 327). And while objective
claims are difficult to refute, normative claims are open to contestation and
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(re)negotiation. Thus, Habermas’ ontological weak naturalism further implies that
cultures continually (naturally) learn and evolve in light of the ongoing negotiation and
re-negotiation of a given lifeworld’s objective claims and normative expectations.
Because such a view is inherently non-reductionistic, it stands apart from
strong naturalism, which replaces a conceptual analysis of lifeworld practices with
neurological or biogenetic explanations (Habermas, 2003, p. 28). This understanding of
culture as consisting in part of communicative inter-actions imbued with subjective and
objective claims helps to inform the analytic frame for this doctoral study.
In terms of what can be known about any given lifeworld, Habermas contends
that our understanding of that natural evolution cannot be void of participants’
perspectives, but at the same time, it cannot give too much constitutive authority to the
subject or to the linguistic community. It is not that reality exists only in our formulations
of it, nor is it that reality exists separately from our formulations; it’s both. As such,
Habermas strives to avoid both a kind of relativism in which all claims to objective
knowledge are abandoned (pragmatic contextualism) and reductive objectivism, which
fails to do justice to participants’ perspectives.
Furthermore, Habermas’s (2003) explication of ‘realism’ considers truth in terms
of its function, which is to generate unconditional acceptance of particular claims. Truth
functions in terms of the normativity of validity claims, and, importantly, manifests
as/during communicative action that entails a speech act and non-discursively conveyed
meanings. Moreover, these communicative acts are most meaningful when related to
solving problems of action coordination and social integration. Thus, in order to
understand a particular culture, its discursive and non-discursive communicative actions
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relating to social integration and action coordination must be understood in terms that do
justice to the constitutive nature of language, the objectivity of claims to truth, and
participants’ perspectives.
Such a view of the social world and of knowing it informs Habermas’s theory of
communicative action (1985a, 1985b), which might be summed up by the following five
assumptions:
1. A relationship exists between meaning and validity such that when a communicative
act and its consequences are inter-subjectively recognizable and its validity can be
criticized, it becomes meaningful.
2. As such, meaningful action occurs as discourse when the validity of claims is
problematized.
3. In the argumentation that ensues, group members invoke objective and social realities
as they act within an iterative, looping relationship between linguistic and empirical
knowledge.
4. As group members synthesize their empirical and linguistic knowledge, their existing
lifeworld is de-centered and their horizons of understanding expand.
5. As claims are backed with objective and subjective claims, language works to
disclose the world to its inhabitants, and to aid in their coping with issues related to
social integration and action coordination.
These five epistemological assumptions are instructive for the critical researcher, as
evidenced by Carspecken’s (1996) emphasis on identifying social moments that are
meaningful. In this study, I was interested in dementia care moments that have contested
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validity and that have objectively- and subjectively-referenced claims that contribute to a
group’s effort to establish norms regarding action coordination and social integration
practices. Carspecken (1996, p. 20) states that it is “because critical epistemology takes
its core imagery from common forms of communication that power must enter centrally
into the theory of truth,” implying that the relationships between power and knowledge
are particularly salient in a consensus-based notion of truth. It is these moments that
define and constitute a culture and that reveal how power, knowledge, and truth are
interconnected. In other words (Carspecken, 1996, p. 21): two or more people may find
themselves in disagreement regarding a particular norm, that is, regarding what they or
others should do in a particular situation. Subsequently, they might discuss their situation
and seek agreement. Their discussion would be informed by claims about what was
actually going on, about how they or others seemed to feel, and again, about what should
be the case. Ultimately, for any such claim to be deemed true, “it is the consent given by
a group of people, potentially universal in membership, that validates the claim” (p. 21,
emphasis in original). But in many cases, the gaining of consent (particularly regarding a
practice norm) can be a product of unequal power relationships: one party might be
coerced, or they might defer to another’s authority at their own expense. That authority is
culturally constructed, and can have the effect of silencing others “to the depths of [their]
personal identity” (p. 21); it is not as though they recognize a claim as being true per se,
but rather, they consent to the claim as a result of the power imbalance. Under a
Habermasian influence, a critical worldview seeks to identify when and why such
coercions manifest as they do, and also to attempt to create conditions where truth and
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knowledge are consented to under ethical conditions of discourse, that is, by parties with
equal power to speak, question, assert, and be heard.
Toward this end, Carspecken’s CQR integrates into its methodological theory
Habermas’s ‘cognitivist moral theory’ – or discourse ethics – which examines the
conditions in which social acts occur (Carspecken, 1996, p. 142; Habermas, 2003). The
assertion here is that a moral claim is justified if all those affected would assent to it
under the conditions of an ideal speech act, i.e., when all those affected may contribute
equally to the negotiation of truth, without feeling coerced. As such, the critical empirical
skill that essentially characterizes Carspecken’s research methodology is understanding
when and how group members (who are affected by a particular claim) do or do not have
the power or authority to contribute to claim negotiations; in terms of my study, I sought
to identify moments when the norms of dementia care practices were influenced by
inequitable power distributions. Under the influence of such critical and Habermasian
epistemological tenets, and guided by its affiliated critical value orientation,
Carspecken’s (1996) CQR methodology essentially seeks to examine the communicative
acts that manifest as/at the negotiations of truth related to social integration and action
coordination. By explicating and situating the primary tenets of the critical epistemology
deployed in this research, my aim in this section has been to outline the symbolically
charged, power- and value-laden lines of empirical inquiry that underpin this study. Next,
I turn to address how the findings from this empirical inquiry can be deemed as
representative of participants’ lived experience, legitimate and valid, and as replete with
the potential to catalyze change.
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Part 2: The Triple Crisis of Representation
Among the historical moments that are said to comprise the history of qualitative
inquiry (Denzin & Lincoln, 2005), the fourth moment was/is the crisis of representation.
Herein, recognizing that lived experience is created in a researcher’s text creates doubts
that researchers can in fact capture lived experience, giving rise to the assertion that
issues of gender, age, class, and race therefore now all require reflexive attention as a
researcher seeks to determine where and how s/he shaped the collection of data and
presently shapes the re-presentation of analytics findings. Concurrently, the fourth
moment called (back) into question the criteria by which qualitative research should be
judged. Terms such as validity, generalizability, and reliability, each of which has been
theorized in post-positivist, constructionist, feminist, interpretive, post-structural and
critical discourses (Denzin & Lincoln, 2005), such terms in the fourth moment seem in
need of re-theorization as researchers grapple with the question, How are qualitative
studies to be evaluated in a time when “an embarrassment of choices now characterizes
the field of qualitative research?” (Denzin & Lincoln, 2005, p. 20) – that is, how should
criteria be selected and applied to qualitative research so as to deem its findings
legitimate?
These two fourth-moment crises – of representation and of legitimation – shaped a
third crisis, a crisis of praxis, which asks, How can change be effected in a world that is
only and always a text? (Denzin & Lincoln, 2005). This crisis of praxis asserts that it is
just not good enough to describe or reflect upon the world, but rather, researchers’ written
products must have the effect of intervening in the world so as to affect it (Denzin &
Lincoln, 2005; Denzin, 2003; Freire, 1972), thereby “manipulating material and social
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factors in a given context” (Greenwood & Levin, 2005, p. 53). Here then is where the socalled triple crisis manifests: in the real (and) discursive spaces where issues of representation and legitimation intertwine with a mandate for praxis (Denzin & Lincoln,
2005). Consequently, qualitative researchers are called to produce reflexive writing that
adheres to appropriate evaluation criteria and that can pragmatically yield contextually
sensitive and democratic change.
Having adopted such a pragmatic approach to inquiry in this dissertation, I have
experienced my own encounter with the crises of representation, legitimation, and praxis
– which is to say I have faced my own crisis and uncertainty with (i) a writing process
that blurs the lines between field data, analytic notes, and the final text; (ii) asserting that
this particular work should be judged by particular philosophical and methodological
criteria; and (iii) an (in)ability to fulfill a critically-imposed mandate to not just describe
the life-world I am studying, but to affect it. Thus, I pause here to describe the paths I
followed in navigating the fourth moment’s triple crisis by situating the approaches I
have taken to address issues of representation (Ellingson, 2009; Richardson, 1997), of
legitimation (Holloway & Todres, 2003; Carspecken, 1996; Lather, 1986; Kincheloe &
McLaren, 2005), and of praxis (Freire, 1972; Carspecken, 1996; Marx, 1977).
On re-presentation.
I find myself facing two related questions: How can I honorably represent the vast
and varied experiences of the research subjects in one set of Findings? Then, how can I
re-present those Findings in prose? Rather than become paralyzed by such an arduous
task, I looked to Richardson (1997) and Ellingson (2009) for guidance in the writing of
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scientific output. To help deal with “uncertainty about what constitutes adequate
depiction of social reality” (p. 13), Richardson clarifies first that part of what makes the
crisis of representation a crisis at all is that scholarly conventions are themselves
contested such that “politics and poetics become inseparable and neither science nor art
stands above the historical and linguistic processes” (Clifford [1986], in Richardson, p.
14). Consequently, Richardson points out, the edges of the scientific enterprise have
shifted to not only include epistemological assumptions, but also a re-thinking of writing
processes.
In re-thinking my own writing processes, I found two of Richardson’s (1997)
conceptual pairings particularly helpful: the pairing of the collective story and Mills’
(1959) notion of the sociological imagination, and the pairing of guiding metaphor and
narrative voice. A ‘collective story’ is that which “tells the experiences of a
sociologically constructed category of people in the context of larger socio-cultural and
historical forces” (p. 14). Subjects are conceived as a collective, a conception that begets
connection among the Subjects, empowerment, and a potential for leading them to
collective action on their behalf. The promise of the ‘sociological imagination’ (Mills,
1959, in Richardson, p. 15), meanwhile, is that “knowledge of the social context leads
people to understand their own experiences and to gauge their own fates,” and, when
such an account also triggers for its constituents a (re)new(ed) awareness of a social
context, those now-heard voices can mobilize and empower themselves to make positive
social change. The telling of this collective story that sparks the sociological imagination,
however, must remain accessible and appealing to its intended audience, void of
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linguistic traps (Denzin, 2003). It is in this regard that Richardson’s pairing of guiding
metaphor and narrative voice become salient:
The final solution to the writing problem is not the extermination of jargon,
redundancies, passive voice, circumlocution, and (alas) multisyllabic
conceptualization referential indicators. How we choose to write raises two
metawriting issues: guiding metaphor and narrative voice. Our choices are
simultaneously political, poetic, methodological, and theoretical (1997, p. 17).
The guiding metaphor I employ in this dissertation is not dissimilar to Richardson’s (or to
many other criticalists’ works): that of liberation. The collective story of the subjects I
met living and working with/in dementia care is a story of disempowerment that is
brought about by the context of larger social and historical forces; my metaphorical job of
liberation is to story that disempowerment, to point out the oppressive conditions, and to
spark the sociological imagination, to “direct energy toward changing social structures
that perpetuate injustice” (Richardson, 1997, p. 19). In this text, I inscribe myself as a
liberationist. The voice(s) with which I do this job, however, are more difficult to
concert, to stick with, to pin down.
Like Richardson, Ellingson (2009) sees the vast array of qualitative methodologies
“not as an art/science dichotomy but as existing along a continuum from positivism …
through radical interpretivism” (p. 5), i.e., from objectivist accounts of reality at one end
to scholarship as art at the other, and thus encourages re-presenting (voicing) findings as
‘crystallization,’ as multi-genred texts, asserting that “contrasting approaches to analysis
and representation, while also being self-referential to their partiality” (p. 10) offer a
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single, coherent text (or a series of related texts) that builds “a rich and openly partial
account of a phenomenon [and in turn] problematizes its own construction, highlights
researchers’ vulnerabilities and positionality, makes claims about socially constructed
meanings, and reveals the indeterminacy of knowledge claims even as it makes them” (p.
4). ‘Crystallization’ can occur most readily in research(ers) that
offer deep, thickly described, complexly rendered interpretations of meaning …
represent ways of producing knowledge across multiple points on the qualitative
continuum [of research designs] … utilize more than one genre of writing …
include a significant degree of reflexive consideration of the researcher’s self and
roles … eschew positivist claims to objectivity and a singular, discoverable Truth
in favor of embracing knowledge that is situated, partial, constructed, multiple,
embodied, and enmeshed in power relations (p. 10).
In writing and in re-presenting this research, I sought to think in terms of the study
participants’ collective story so as to spark an imaginative redressing of social injustice,
that is, to do so with an aim to liberate those who, in this context, are oppressed and
marginalized (Richardson, 1997). And rather than confining myself to one voice that
implies one way of knowing, I have begun already to form a crystallized account
(Ellingson, 2009) of this lifeworld (Habermas, 1985), one that employs contrasting
approaches to understanding and re-presenting ethnographic findings. These reflections
helped me work through the crisis of representation by suggesting to me rhetorical means
by which to render and orchestrate the research findings that appear in Chapters Five
(where normalized inclusiveness is posited as a liberating means toward democratic
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knowledge production) and Six (where it is shown how normative powers led to the
regrettable but not uncommon use of force in providing dementia care, and where the
means by which caregivers’ tacit knowledge can proliferate are analyzed).
On legitimation.
Holloway and Todres (2003) offer ‘coherence, consistency, and flexibility’ as
touchstones for rigour in conducting and reporting qualitative research findings. This
follows a view that the quality of qualitative inquiry is to be judged by the tenets of
paradigm in which it is situated (Guba & Lincoln, 1994; Denzin & Lincoln, 2005;
Holloway & Todres, 2003; Seale, 1999). To do otherwise, that is, to apply criteria from
one paradigm to work conceived and carried out in another paradigm, would be akin to
applying rules from one game to another, resulting in a mismatch of principles and
procedural assessment and value, or what Guba and Lincoln (1994) call
incommensurability. The implication is that researchers too should stay within the
confines of their own paradigm, that they should avoid piecemeal approaches to
designing and reporting qualitative research. That Holloway and Todres include the
notion of ‘flexibility’ in their conception of rigour serves to create some wiggle room,
some sense that, for instance, ‘critical’ research may convey an element of
postmodernism; or, a hermeneutic analysis that focuses on meaning-making may also
convey a narrative element. (Such flexibility is also in keeping with Ellingson’s notion of
crystallization (2009), as described above).
In any such case, the question of rigour becomes one of whether or not the tension
between coherence and flexibility has been adequately addressed. For Holloway and
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Todres (2003), flexibility is acknowledged as recognition that there are indeed many
disparate qualitative methodologies, and yet these disparate methodologies share similar
methods of data collection and analysis. What Holloway and Todres intend, I believe, is
to encourage a more differentiated understanding of methodological requirements “in
which an understanding of purposes and relative appropriateness of procedures leads to
greater specificity about what can be mixed and what can not” (p. 346). But more than
not, ‘coherence and consistency’ rule the day. That is to say, one should appreciate that
philosophical and methodological consistency do “lead to greater clarity about the nature
of the phenomenon to be explored, the questions posed and the ways researchers answer
questions and communicate their findings” (p. 347). Thus, researchers should be mindful
that the research question(s) they are asking, the data they have collected, the analysis
they are conducting, and the re-presentation(s) of the results they produce demonstrate a
‘goodness of fit.’ “If such consistency occurs then the whole thing ‘hangs together’ as
coherent; that is, the kind of knowledge generated in the results or presentation section
does what it said it would do under the aims of the project” (p. 347).
And while Holloway and Todres (2003) argue that “unreflexive and undisciplined
eclecticism might be avoided” (p. 356), they suggest that coherence can be achieved “not
necessarily by settling on one approach as an exclusive commitment but by applying and
making explicit an epistemological position that can coherently underpin its empirical
claims” (p. 347, emphasis added). It is with this notion of flexibility in mind, perhaps
aptly described as grounded flexibility – so as to convey latitude that is grounded in a
single paradigm – it is this that I take as permission to think and write in reflexive
ethnographic terms that are confessional and/or deconstructive, for therein I see myself
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maintaining a coherent commitment to a critical worldview, to critical ways of knowing
and understanding what the world really is. Moreover, the theoretically reflexive work
that comprises the bulk of the analytic work in this dissertation is also highly consistent
with a critical worldview: its core methods and analytic techniques lend themselves to
aims of uncovering taken-for-granted socio-political and –historical mechanisms that
fundamentally shape the lived experiences of research participants. The alternative,
flexibly grounded re-presentations of the analyses (e.g., Introductions 2 and 3) neatly
serve as alternative means to engage those reading this crystallized (Ellingson, 2009)
work.
In addition to this basic premise of coherence, consistency and flexibility as the
touchstones of rigour in qualitative research (Holloway & Todres, 2003), Carspecken
(1996) also outlines several criteria by which a ‘critical qualitative research’ project
should be judged. In specifically deploying Carspecken’s methodology, I would be
remiss to not take into account his existing quality criteria, which offered guidance on
specific method and methodological techniques. Table 3.1, below, summarizes
Carspecken’s ‘requirements for validity’ that I followed in collecting ‘monologic’ and
‘dialogic’ data, and in conducting ‘hermeneutic reconstructive analysis,’ terms that I
describe more fully in Chapter Four where I explicate the methodology that drives this
work. For now, I simply note that in addition to the paradigmatic notion of coherence,
consistency, and flexibility, it is these criteria by which the quality of my data collection
and analysis can be judged.
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Table 3.1: Carspecken’s (1996) requirements for validity in the first three stages of
‘critical qualitative research’
Phase:
1
Essence of the Phase:
Collected data through
‘monologic’ (i.e.,
observational) data collection
-
2
3
Conducted ‘hermeneutic
reconstructive analysis’ in
order to delineate possible
meanings and
communicative structures
that convey meaning, and the
objective, subjective, and
normative claims that people
make in negotiating consent
to particular routine practices
Collected data that built on
the outcomes of phase 2 by
conducting ‘dialogic data
generation’ (i.e., in-depth
interviews)
-
-
-
-
‘Validity requirements’
used multiple data collection methods
used a flexible observation schedule
practiced prolonged engagement to reduce
Hawthorne effects
used a low-inference vocabulary
used peer-debriefing to detect gaps in the
data collected
used member-checks to democratically
assess the validity of the record of
observations
continued to conduct member-checks to
equalize power relations and to engage
participants themselves in their own
hermeneutic reconstructive analysis
used peer debriefing to check for biases or
absences in reconstructions
employed prolonged engagement to
heighten the capacity of the researcher to
assume insider perspectives
compared and contrast pieces or ‘strips’ of
the primary record with reconstructions
use negative case analysis
used member-checks to identify and
reconcile any discrepancies found in their
data
compared and contrasted primary record
with dialogic data
used non-leading interview techniques
used peer debriefers for checks on possible
leading
encouraged subjects to use and explain the
terms they employ in naturalistic contexts
One final criterion was necessary and appropriate for this research – catalytic
validity (Lather, 1986; Kincheloe & McLaren, 2005). Whereas the principle of
‘coherence, consistency, and flexibility’ that Holloway and Todres call for speaks to
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issues of philosophical rigour and commensurability, and whereas Carspecken’s (1996)
own ‘critical qualitative research’ criteria speak mostly to method/ological nuances (but
also to power equalization among the researcher and the researched), this final criterion
addresses the potential impact of critical research. Catalytic validity requires that a
critical, ‘openly ideological’ research project be judged in terms of “the degree to which
the research process re-orients, focuses, and energizes participants” (Lather, 1986, p. 67)
with respect to the “genesis, limitations, and transformative possibilities” (p. 78) of
particular points of view. As Lather (1991, 1993) and Kincheloe and McLaren (2005) see
it, catalytic validity is brought about by exposing the way ideology constrains the desire
for self-direction, by confronting the way power reproduces itself in the construction of
human consciousness, and by moving research subjects “to understand the world and the
way it is shaped in order for them to transform it” (Kincheloe & McLaren, 2005, p. 324).
Thus, as the criteria by which to judge this dissertation as legitimate, I drew on
Holloway and Todres’s (2003) principle of coherence, consistency, and flexibility as well
as Carspecken’s (1996) criteria for critical qualitative research, and supplemented these
with Lather’s (1986) and Kincheloe and McLarens’ (2005) notion of catalytic validity.
Such a triadic set of criteria collectively invites judgment on paradigmatic,
methodological, and transformative planes, and are themselves bound by a level of
coherence that is in keeping with a critical paradigm. Having reflected at length on how
to avoid becoming mired in the crises of re-presentation and legitimation, and having
listed as a criterion for quality the notion of catalytic validity, one question remains: how
am I to realize an enactment of praxis? That is, what does this dissertation do in order to
actually trigger (catalyze) the release of the potential that presumably lies within its
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culture of interest? To answer this question, and to tie-together my efforts to avoid being
mired in crises of re-presentation, legitimation, and praxis, I turn first to Freire (1972)
and, in particular, his practice of identifying generative themes that help illuminate
situationality.
On praxis.
Having deployed a critical epistemology and methodology that bring to the fore
backgrounded values and practices, the study ultimately sought to mitigate oppression by
facilitating reflection and action upon the world (Freire, 1972). For Freire, enacting
praxis entails enabling subjects to re-cognize anew the ‘situation’ they are in, for often, as
per a critical worldview, the oppressed and marginalized do not recognize the situation
they are in, or, worse, they do but resign themselves to it (Kincheloe & McLaren, 2005).
If and when research findings can be used to heighten awareness of such situatedness,
those who re-cognize their situation can develop an ‘objective-problematic’ into which
participants are inclined to intervene. In doing so, they step out of submersion and
forward from emergence to deepen their attitude of awareness; a (r)evolution of social
practices can then ensue (Freire, 1972). Thus, the liberationist’s collective story of a
particular group of people serves to illuminate the situationality of group members – of
both those who are served by and those who are negated by a situation – and to divide
and re-integrate the whole of the situation so as to stimulate a new perception of the
previous perception, and subsequently to encourage dialogic conditions where previously
unperceived practical solutions come to light and where untested feasibility is considered
anew (Freire, 1972). Such a conceptualization of praxis resembles the notion of
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‘sociological imagination,’ described above, but is more pointed in its problem-posing
and in illuminating group members’ situationality.
This Freirian conceptualization of praxis serves to supplement that of Carspecken.
Carspecken’s (1996) view on praxis is derived from Marx (1977) – viewing “human life
as an expressive, self-producing process [and thus treating research as] an expressive
activity that takes implicitly suspected potentialities and makes them actual through the
construction of some product” (Carspecken, 1996, p. 123, emphasis added). Constructing
prose (or some other crystallized product) to ‘actualize suspected potentialities’ seems in
service of both the critical criterion of catalytic validity described above (Lather 1986;
Kincheloe & McLaren, 2005) and to the Freirian notion of reflecting and acting upon the
world (1972), but fundamental to Carspecken’s praxis is the notion of expressivism,
which asserts that
[t]he act of expression – whether it be speaking, writing, painting, composing –
clarifies what is to be expressed. When acting meaningfully, we begin with a
subjectively felt impetus to express something that we understand only implicitly.
We cannot be sure what it is we want to express until we are actually in the process
of expressing it” (Carspecken 1996, p. 123).
Expressivist insights (see also Taylor, 1979) fit well within Carspecken’s critical
epistemology: just as meaning becomes more clear as it is expressed, Carspecken’s
analytics tease apart holistic and implicit preunderstandings of meaning, yielding a more
finely-differentiated and explicit understanding of a meaningful act. Moreover, the
Marxist attention to capitalist influence on meaning and expression is equally critical, for
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it is presumed that in a capitalist society
human work becomes alienated, cut off from the expressive impetus that is
fundamental to a human being. When all the details of work have been planned
and directed by someone else and when the production of products becomes
fragmented into a series of trivial acts divided among a work force (as in
assembly lines), workers can no longer express themselves in their labor. The
need for praxis has been denied by capitalist work organization (Carspecken,
1996, p. 124).
In striving to craft and enact a pedagogy of praxis, this dissertation took from
Marx a cue to be mindful of macro-sociological influences (particularly capitalism) as it
examined and brought to the fore structural realities that research participants seemed to
either take for granted or accept as inevitable or un-changeable. By delineating and
reconstructing through Carspeckian analysis the norms expressed in the negotiation of
social routines, a Freirian notion of praxis emerged when these critical insights were/are
inscribed here for readers and research subjects alike – particularly those oppressed by
unequal power distribution – such that they are potentially compelled by their
(re)new(ed) awareness to redress their own situation.
These notions of praxis (Freire, 1972; Marx, 1977; Carspecken, 1996) each fit into
a critical research paradigm wherein researchers adopt a standpoint that is critical of any
status quo that (re)produces social injustices. The following chapter locates Carspecken’s
particular methodology within the qualitative health research literature and offers a
detailed overview of how it was employed in this study.
119
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– Chapter Four –
‘Critical Qualitative Research’ in Long Term Dementia Care
Abstract
A primary record of field data was collected by ethnographic means in two
affiliated dementia care sites: a specialized dementia care unit (SCU) for long-term care,
and, attached to the same building, a community-based adult day program (ADP). The
aim of data collection was to gain a sense of the care practices created and shared among
residents, clients, family members and staff of these two dementia care sites. Data
collection methods included participant observation, in-depth interviews, focus groups,
and document analysis. Data analysis focused specifically on dementia care knowledge,
including how programmatically distinct historical- and socio-political factors shaped
those care practices in terms of the ways in which dementia care knowledge is
conceptualized, socialized, and enacted. As the observational data accumulated, selected
texts from the primary record were reconstructed according to the theoretical
methodology outlined by Carspecken (1996). Using Carspecken’s “critical qualitative
research” (CQR) methodology in a health care context, this article reports on and
critiques the use of CQR in the field of dementia care, and concludes with the contention
that qualitative health researchers committed to a critical worldview should consider
further extending the benefits of CQR to the field of health care – doing so can help
researchers and study participants alike re-cognize and redress the social acts that
constitute the injustices of (in this case, dementia) care.
Keywords: critical methods; dementia; ethnography; health care, culture of; health care,
long-term; hermeneutics; reflexivity
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Ethnographic research considers the socially and historically shaped values,
beliefs and behaviors of a particular group (Spradley, 1979; Thomas, 1993), and a
number of scholars have conducted ethnographies in long-term care (LTC) settings
(Beuscher, 2007; Chatterji, 1998; Hirst & LeNavenec, 2007; Hutchinson & Marshall,
2000; Mott, 1997; Savishinsky, 1993). Critical ethnography extends beyond a descriptive
scope by focusing specifically on the creation and hoarding of power that reproduces
oppressive conditions within a particular culture (Averill, 2005; Cook, 2005; Manias &
Street, 2001). Within the LTC sector, a number of studies have deployed this
methodology to examine power-relations. Diamond (1986) was among the first when he
used a sociologist’s lens to chronicle and examine his experience of working as a nurses’
aide. Since then critical researchers have examined family-staff relationships (WardGriffin, Bol, Hay, & Dashnay, 2003), social stratification among nurses (Bland, 2007),
and the notion of personhood among people living with Alzheimer’s disease (Kontos,
2005).
While these LTC critical ethnographies have in common an explicit value
orientation toward social justice and toward mitigating oppression, the theoretical and
analytic similarities are less obvious. Jervis (2002) for example, drew on grounded theory
techniques (Charmaz & Miller, 2001) to examine her data, and in drawing on Lofland
and Lofland (1995), Ward-Griffin et al. (2003) similarly relied on initial, secondary, and
iterative coding to generate a set of emergent analytic categories. Taking a different tack,
Bland (2007) cites Van Maanen (1995), Segall (2001) and Kaufman (2002) as guiding
her toward ‘making the familiar strange’ and in “challenging ways of understanding so
[care practices] are no longer seen as natural or inevitable” (p. 939). Kontos (2005),
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meanwhile, drew heavily on the theoretical postulations of Bourdieu (1977, 1990) in
offering a theoretical re-visioning of personhood.
Another variant of critical ethnography is Carspecken’s (1996, 2001) “critical
qualitative research” (CQR) methodology. Similar to other critical ethnographies, CQR
uses observation, in-depth interviews, focus groups, and document analysis to collect
data. The analytic procedures, however, are quite different in that they are derived
specifically from Habermas’ theory of communicative action and, rather than open and
thematic coding, the analyses feature reconstructions of the communicative features that
contribute to a group of people assenting to a particular set of normative truth claims,
thus offering insight into how and why certain cultural norms come to be, or not
(Carspecken, 1996). This article reports on the use of CQR in two dementia care sites: a
specialized care unit in a long-term care home, and an adult day program that serves
people with dementia who live at home, and offers a detailed outline of how the data
were collected and analyzed according to the methodological tenets of CQR. Included are
empirical illustrations of how pragmatic horizon analyses and validity reconstructions
produced insights into the culture of dementia care knowledge. The aim of this article
then is to contribute to the growing CQR health care literature by debunking some of its
idiosyncrasies and by reflecting on how CQR might benefit health and dementia care
research. I begin by reviewing the existing health care literature that has used and/or
examined CQR to outline the strengths and drawbacks others have found in its use.
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CQR in Health Care Research
As a methodology conceived of and developed primarily in education research
(Carspecken, 2001), there have only been a handful of studies in health care – and none
in long-term care – that have deployed Carspecken’s (1996) critical qualitative research
methodology. Stewart and Usher (2007) used CQR “to expose [nursing] leadership
practice so that emancipation in the context of health care leadership becomes possible”
(p. 995). In particular, they drew attention to Carspecken’s pragmatic horizon analysis,
contending that the insights garnered from this kind of analysis, especially about identity
claims, enables one “to recognize where dominant forms of communication are
problematic [such that one] can then begin to reconceptualize leadership as being about
strong and open communication as the basis for decision making” (p. 998). Similarly,
Hardcastle, Usher and Holmes (2006) “were interested in the cultural conditions of
[renal] nurses’ decision making during social interaction and how social structures (rules
and resources) were generated and maintained during social action” and chose CQR
“because it advocates for simultaneous data collection and analysis, identifies cultural
structures and themes, and helps to reveal the culturally pragmatic material from which
actors mutually construct their worlds” (p. 154). Hardcastle et al. make note in particular
of member-checking and reflexivity strategies, noting that member-checking
stimulated spontaneous responses from whoever happened to be present and so
provided a quick and effective way of evaluating field notes and promoted
dialogue between the nurses. When disagreements arose, these were noted for
further analysis. In contrast, we assumed agreement to give credibility to the
interpretations and considered it to represent a shared understanding of reality.
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However, the researcher remained aware that this does not necessarily mean the
view was “correct,” merely that is was the accepted view of the group (p. 158).
Vandenberg and Hall (2011) write of being concerned with such passive assumed
agreement and encouraged critical researchers to “be particularly wary of their
reconstructions of ‘truth’ because socially accepted ideals can be used and misused to
maintain oppression” (p. 26). Vandenberg and Hall are also skeptical that two methods
Carspecken suggests to use for democratizing the research process – member-checking
and peer debriefs –– can mitigate the inadvertent reproduction and reinforcement of
dominant power relations, for peers may in fact share and reinforce a researcher’s
assumptions rather than challenge them, and in member-checking, participants might lack
the confidence and/or freedom to disagree with analytic interpretations. As such,
Vanderberg and Hall contend that “Carspecken has neither provided clear assurances
about participants’ equal opportunities to question dominant power structures through
research processes nor acknowledged the difficulty of contradicting dominant discourses
when careers and lives can be put at stake” (p. 26).
Other criticisms of CQR include Carspecken’s failure to “offer help with the
‘technical’ tricks of producing a text or with the reflexive literature on how persuasive
texts have been produced by others” (Delamont, Coffey, & Atkinson, 2000, p. 232),
something Delamont et al. take as “evidence of the lack of a rhetorical turn” in CQR.
Sharing a similar concern about concretizing the abstract, Smyth and Holmes (2005) are
concerned that Carspecken’s approach “may be a daunting challenge for those familiar
with Habermasian and other social theories. He uses terminology rather idiosyncratically,
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drawing from across paradigms and theories, and at times he seems unnecessarily
verbose and occasionally obscure, and this tends to compound the challenge” (p. 73).
In an article that outlines CQR’s neo-Marxist, American pragmatic, and
expressivist influences, Holmes and Smyth (2011) pair their critique of CQR’s
idiosyncrasies with notions of incommensurability by suggesting that Carspecken’s
rather confusing use of terminology sometimes extends to descriptions of his
theoretical concepts … [e.g., the notion of ‘pragmatic horizon analysis,’ such that]
Carspecken would have us put aside our existing beliefs about these and other
concepts and issues that he describes, so that we may – as it were – adopt and
develop a new discourse, but this can prove problematic if only because his
concepts draw on familiar and respected formulations” (p. 150).
The concern Holmes and Smyth have is two-fold: on one hand, “these elements have
been established and articulated within the context of the complex theories in which they
originate, and only a superficial understanding can be obtained if that theoretical context
is ignored” (p. 150-1); and on another,
there is the problem associated with the grounds on which the rest of that theory is
ignored. Carspecken’s eclecticism is not based on a reasoned rejection, nor even
problematisation, of those bodies of work, but entirely on the usefulness, to his
purpose, of salvaging certain specific elements, a strategy rooted in his deepseated philosophical pragmatism (p. 151).
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That said, the criticisms of Holmes and Smyth (2011) and of Vandenberg and Hall (2011)
are few, and are couched in “the obvious virtues” (Holmes & Smyth, p. 153) of CQR,
namely its “clear step-by-step approach, the powerfully argued and well-theorized
measures to increase rigour and demonstrate validity, and the flexibility of data collection
and analysis are [all] especially appealing to a novice researcher” (p. 153). Smyth and
Holmes’s earlier article (2005) characterizes CQR as a methodology “to which most
nurses will be sympathetic, since they have as their aim the enhancement of individual
wellbeing and a general increase in human welfare” (p. 73).
Further support for CQR comes from Kincheloe and McLaren (2005), who state
“Carspecken rehabilitates critical ethnography from many of the misperceptions of its
critics who believe that it ignores questions of validity” (p. 327-8). They add that among
the strengths of CQR is its conception of “meaning as embodiment and understanding as
intersubjective, not objective or subjective. … [Hence, Carspecken] recommends that
critical ethnographers record body language carefully because the meaning of an action is
not in the language, it is rather in the action and the actor’s bodily states” (p. 328).
According to Denzin (2003) however, the challenge in writing up such theoretically
reflexive scholarship is to avoid re-presenting findings in terms so abstract that the study
is no longer accessible or relevant to the participants and stakeholders for whom the study
is relevant.
What follows is an explication of how CQR was deployed in a dementia care
study that sought to examine how dementia care knowledge was created, shared, and
applied in practice. Both figurative and empirical illustrations serve to debunk CQR’s
somewhat idiosyncratic procedures. Ultimately, the intent is to demonstrate that CQR is
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capable of generating critical insight into how power and knowledge intertwine, thus
suggesting that Carspecken’s CQR methodology has significant utility in qualitative
health research.
Data Collection
The study took place in Ontario, Canada, in an urban, not-for-profit, 160-bed,
provincially-funded long-term care (LTC) home, attached to which is an affiliated
community-based adult day program (ADP). Governed by a Board of Directors that is
accountable to various provincial legislative mandates, and administered by a chief
executive officer and senior leadership team that includes staff from both the LTC home
and the ADP, the two sites were otherwise separately staffed, although some part-time
nursing and recreation staff worked in both sites. Aside from interactions with the
organization’s senior leadership team, data collection was confined to the two care areas
where dementia care is the primary focus: the special care unit (SCU) within the LTC
facility, and the client and staff spaces within the adult day program (ADP).
Description of the two sites.
The specialized care unit.
Located on the ground floor and comprised of two perpendicular wings that were
joined by a common area and dining room, the SCU was a 32-bed “resident home area”
for people living with advanced dementia. All residents had a dementia-related primary
diagnosis at admission. About half were living with Alzheimer’s disease or a related
dementia, many had a secondary dementia-related diagnosis, and most had a non-
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dementia-related secondary diagnosis. As indicated by internationally established
aggregate Resident Assessment Instrument – Minimum Data Set (RAI-MDS) Scores,
more than half the SCU residents experienced severe or very severe cognitive
impairment, half exhibited verbal or physical aggression or socially disruptive or
inappropriate behavior, three-quarters of the residents exhibited a potential or acute
problem with depression, and more than half of the residents required at least some
assistance with many or most of their activities of daily living (see Table 4.1).
INSERT TABLE 4.1
The SCU is staffed by either a Registered Nurse (RN) or a Registered Practical
Nurse (RPN), one – four unregulated personal support workers (PSW), as well as one
full-time ‘Life Enrichment’ recreational therapist. Housekeeping, cleaning, maintenance,
and kitchen staff members work on the floor as regularly scheduled or as needed. A
social worker supports residents and families, particularly with respect to admission
processes. Three physicians share responsibility for residents’ medical directives; they
typically visited one or two half-days per week, and relied on the nursing staff to direct
their attention to residents’ health care needs.
The adult day program.
The ADP was staffed by recreation specialists who led programming throughout
the day, while PSWs assisted with meals, toileting, portering, and some recreation
programming. A RN and/or a RPN oversaw nursing assessments and treatments. Social
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workers offered individual and group counseling and education to families, and
participated in team meetings designed to prevent and/or mitigate clients’ responsive
behaviors. Extended evening hours were available Monday through Friday. Weekend
services were also available, albeit limited to 15 clients, five of whom could be scheduled
to stay overnight so as to afford a family respite. On weekdays, the ADP has a daily
maximum capacity of approximately 60 clients. Clients typically arrived by bus, were
welcomed into an atrium, then shown to one of three program rooms – one room each for
high-, medium-, and low-functioning clients.
Similar to the SCU residents, approximately half of the ADP clients had been
diagnosed with Alzheimer’s disease or an Alzheimer-related dementia; the other half had
been diagnosed with Schizophrenia, vascular dementia, Pick’s, Creutzfeldt-Jakob disease,
Wernicke-Korsakoff Syndrome, or an unspecified dementia. Often a client would
commence in the high-functioning group, but over time be moved to the other groups,
depending on his or her particular disease progression. When a client could no longer
function in the low-functioning group, or when a client could no longer remain living at
home in the community, the social workers assisted family caregivers in making the
necessary arrangements to be admitted to the SCU in the affiliated LTC home or another
preferred LTC home.
Creating the Primary Record
Prior to commencing the study, the Western University Office of Research Ethics
approved this study and its recruitment and data collection strategies. Most of the SCU
and ADP staff members were enrolled during the first four field visits to their respective
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site, often in a group setting where several staff members could be addressed at once;
thereafter, staff members who had not yet been invited to enroll were notified of the
research in progress and invited to enroll. ADP clients and families were invited to
participate by mail. The registered nursing staff approached SCU residents and families
on my behalf; if they expressed interest, they were provided with the relevant information
and consent forms. A total of 139 participants enrolled in the study, including 71 pointof-care staff, 12 members of the senior organizational leadership team, and 56 non-staff
(i.e., clients, residents, and family members).
The observation period was comprised of 34 field visits, which started in the LTC
home’s SCU, and then continued in the ADP. I was careful to schedule field visits such
that I was able to observe during all hours of operation, seven days a week. While I
stayed late into the evening on several occasions, I did not record any overnight
observations, in part because all but one or two residents/clients were asleep by midnight,
but also because within the SCU, the night-shift staff had only consented to being
interviewed, not observed. I then left the field for two weeks to engage in preliminary
analyses before returning to the field for eight more field visits to conduct in-depth
interviews. Then, after a lengthy continuation of analysis, I returned to the site for three
more field visits to conduct one focus group (with the SLT) and 12 member-checking
interviews to share and refine preliminary findings and to fill gaps in the data by speaking
with participant-groups about whom (or regarding topics about which) I had insufficient
data. Table 4.2 presents details about when and how data were collected from these
various data sources.
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INSERT TABLE 4.2 HERE
Figures 4.1 and 4.2 show the basic floor plan of the site areas where I collected
data. In the SCU, I spent most of my observation time standing at or behind the nursing
station, sitting in the chart room while staff went about their work, or, ‘on the floor’ in the
den, activity room, or dining room. I also attended a team care meeting in the adjacent
conference room, which is where I later conducted stage three and member-checking
interviews. On occasion, I went into residents’ rooms, either with the resident or with a
family member. In the ADP, I conducted my observations in the team room, the atrium,
or one of the three program rooms. I observed two team meetings in the conference room
down the hall, which is where I later conducted stage three and member-checking
interviews.
INSERT FIGURES 4.1 & 4.2
During the observation stage, I strove to balance cordiality with a mandate to be a
non-participant observer so as “to reduce the effects of researcher presence on routine
activities” (Carspecken, 1996, p. 51) as much as possible. My mindset as the researcher
was to “take the stance of a student who has little to contribute and much to learn” and to
“[b]e conversant and get accepted to the group, but let them lead the action in every way”
(Carspecken, 1996, p. 52). Thus, this observation period did not involve any “penetrating
dialogue” with participants but rather took a third person position in relation to them:
“describing them from the perspective of an uninvolved observer” (p. 42) by producing
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“a thick record of social routines in as naturalistic a form as possible to reduce analytic
complications brought about by Hawthorne effects” (Carspecken, 1996, p. 52). Such
‘social routines’ included both the care practices that staff and family members engaged
in as well as patterns of inter-personal interactions among the participants. I took
extensive hand-written field notes that served as an audit trail of where I was when doing
what, and as a place where single, fleeting moments were described in immense detail:
what I saw, felt, smelled and heard; body postures and movements, eye contact; and
frequently, the time of day. I kept my notes void of any theorizations or opinion and
instead used a low inference vocabulary replete with as if, seemingly, and as though
qualifiers (Carspecken, 1996).
While making field notes, I would often use the ‘primary objective method’
described by Carspecken (1996) wherein for approximately five minutes, the primary
object of my observation would be one particular person; observations might secondarily
include people with whom the primary person speaks or interacts, and/or, thirdly,
particular features of the room or setting, but the primary focus was always on one
person. After five or so minutes, I would shift the focus of my observations to another
person. Data thus derived helped me to understand particular care routines from a
particular vantage point and served to systematize, focus, and vary my observations.
On occasion, I asked a staff member to clarify for me key contextual information
such as the nature of computerized documents that shape care practices, or about the
nature and history of a particular client, resident, familial, or professional relationship.
When I could tell that a participant was about to share with me a few minutes of their
time to talk about living or working at this site, on 11 occasions, I received permission to
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record our conversation for subsequent transcription; doing so allowed me to be a more
active listener rather than scribbling as much information as possible, although it was not
uncommon for me to be speaking intermittently with a participant while making a field
note. On seven occasions, team meetings were audio-recorded and later transcribed for
inclusion in the primary record. During such meetings, I sat quietly on the periphery of
the team interactions taking notes. On two occasions, I conducted in-depth interviews
during the observation phase, both scheduled and conducted sooner rather than later for
the participants’ convenience. Therefore, the largely monologic primary observation
record consisted of 34 transcribed field notes, 20 transcribed audio recordings, and
several discursive artifacts (including admission forms, assessment tools, reference
manuals, communication logs, and whiteboard messages).
Following Carspecken’s suggestion (1996, p. 49), I ended the observation phase
when I found myself recording the same basic routines over and over again. I believe I
had “allowed time for the subjects to become accustomed to [my] presence” and that I
had “solid information on body movements, vocal tones, and facial expressions in
addition to verbatim speech acts.” I moved to stage two.
Preliminary analysis.
I imported the primary record into qualitative analysis software (NVivo Version
9, 2010), then applied a list of ‘CQR codes’ I had derived from Carspecken (1996) – 16
code-categories to index notions such as shared time, bids to shift a conversation setting,
power at play, and roles and identities; under each were more finely detailed sub-codes
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(54 in total). See Table 4.3 for a list of the most prominent CQR code-categories, subcodes, and empirical samples.
INSERT TABLES 4.3 & 4.4 HERE
Concurrently, I developed a list of 17 emergent code-categories and 56 sub-codes therein
– see Table 4.4. These codes were useful for organizing and retrieving data describing
participants’ care practices, and were ‘low-level’ in that they remained grounded in the
primary record. These emergent codes reflected what, in an ideal situation, multiple
observers would have understood as the routine care practices and the embodied
enactment of arriving at and carrying out those routines. Subsequent meaning field
reconstructions yielded assertions of what subjective and normative data coincided within
the context of these objectively referenced accounts.
Initial meaning field reconstructions.
While coding the observation data with both the a priori CQR codes and the in
vivo emergent codes, I also flagged (coded) data strips to subject to ‘initial meaning field
reconstruction.’ Meaning field reconstruction is a hermeneutic process that entails adding
“discursive articulations of tacit modes of meaning” (Carspecken, 1996, p. 95): my
observations, which were initially intuitive and undifferentiated, were further delineated
and refined as I literally made note of the possible unarticulated meanings that seemed to
underpin participants’ dementia care knowledge. As my familiarity of the participants
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and the research site grew, I felt that the meaning fields I articulated grew closer to be
what the actors themselves would report (Carspecken, 1996, p. 96).
Initially, 116 strips of data were identified as being worthy of meaning field
reconstruction. With an abundance of data that was arguably about dementia care, I
wanted to focus on dementia care knowledge. Thus, data from a family member about
speaking to one PSW about another PSW were not reconstructed, nor were observations
of staff members who spent time texting or Internet surfing with their smart phone.
Similarly, data about stocking the medication cart and about clicking in the computerized
daily care sheets were not reconstructed. While each of these examples arguably relate to
dementia care, the analysis focused on how dementia care knowledge works (Quinlan,
2009). Thus, reconstructions featured data regarding how someone “reads” a person with
dementia who cannot speak, about how and why certain recreation activities are deemed
appropriate, or about the interactive care negotiations between family members and staff.
The analytic aim was to reconstruct meaningful moments related to participants
generating, sharing, and enacting dementia care knowledge. Ultimately, 90 strips of data
were selected to reconstruct. (See Table 4.5 for sample meaning field reconstructions).
This seemed to be a substantial and adequate amount of data to submit to this kind of
analysis, and the excerpts seemed to reflect the entirety of the data collected up to that
point regarding dementia care knowledge. The initial meaning field reconstructions were
useful in helping conceive of a range of possible meanings that might inhere in a
particular claim, and began to illuminate a range of possible feelings and norms that
coincided with the ‘objective’ data I had recorded. Pairing these meaning field
reconstructions with an emergent (and codified) sense of how routine care practices were
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enacted was useful in generating topics worthy of further investigation in subsequent
stage three interviews.
INSERT TABLE 4.5 HERE.
Generating interview topics.
As the preliminary analysis progressed, I began to recognize a number of actions
that seemed fundamentally related to dementia care knowledge, such as approaching
people living with dementia, admitting new residents (SCU) and meeting new clients
(ADP), brainstorming about what clients or residents might like to do, negotiating
changes in care plans, staff and family members mentoring and educating one another
and assisting with activities of daily living (such as bathing, dressing, feeding). While I
had begun theorizing about if or how these actions contributed to system-level reproductions of social inequity, I was careful not to let such theoretical and critical jargon
slide into my interviews; had I done so, I might have “distort[ed] the communicative
context and … [made] subjects feel incompetent to comment on their lives and
experiences” (Carspecken, 1996, p. 155). Instead, I rendered the actions into topic
domains about which participants would be able to speak about with confidence and
familiarity; I hoped they would “explore issues with their own vocabulary, with their own
metaphors, and their own ideas” (p. 155). See Table 4.6 for a list of topics covered during
the interview phases.
INSERT TABLE 4.6 HERE
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As indicated by the list of member-checking topics in the middle of Table 4.6, I
often invited interview participants to comment on one or more of the initial meaning
reconstructions; choosing which one depended on a judgment about the fit between topic
and participant. Typically, this entailed reviewing actual text. With the excerpt from the
primary record printed on the top half of a piece of paper, I covered the bottom half the
paper where I had reconstructed the meaning field. Participants could then read the
primary record excerpt on their own or, if willing, listen to me read it – this was my
preference because it clarified in the subsequent transcription of our discussion the
context of what I had originally observed and was now being commented on. After
reading the excerpt, interview participants then commented on it without provocation
from me, then read and/or heard from me my reconstruction of the excerpt before
commenting on those interpretations. Alternatively and as the interview phase
progressed, I conducted member-checks dialogically: I would convey to an interviewee
an event I had observed, seek their interpretation of that event, indicate what my initial
interpretation entailed, then invite their comments on my interpretation. As such, I was
able to member-check various snippets of data in each interview such that the quality and
richness of my primary record of dialogic data grew while also becoming increasingly
democratic.
Characteristic of the reconstructions I chose to member-check were high-level
inferences: I inferred for instance that the data about ‘staying seated’ and about
(non)gentle care seemed indicative of provider- rather than client-centred care; the data
about ‘tone setting’ and about (a lack of) inter-disciplinary respect seemed indicative of
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socially- and historically-located interpersonal dynamics; I was interested in memberchecking about the impact of occasionally working with a male PSW because I wanted to
mitigate the risk of my own gender biasing my interpretations on the impact of gender.
An additional strategy I used to generate interview topics was to track specific
questions for specific people. For example, I observed an ADP RN comment that
working in the ADP is a constant learning and teaching experience for [PSWs and] for
[her] too to make them think outside of their box. While I had noted her comment in my
field note, I did not at the time have a chance to hear more about this ‘constant learning’
and ‘getting outside the box;’ the interview though afforded me this opportunity. I was
thus prepared to begin the interview phase with a master list of topics (that subsequently
evolved) as well as individual-specific topics, and a set of meaning field reconstructions I
had deemed worthy of member-checking.
In-depth interviews.
This phase of data collection included 10 interviews that ranged from 60 to 100
minutes in length. Selecting participants to interview was determined in part by a sense of
who seemed well suited to respond to the topics generated in the preliminary analysis, in
part by who was available to be interviewed, and also by an aim to speak with seasoned,
mid-career, and new care professionals from among registered and non-registered nursing
staff, recreational therapists, and senior management. Throughout the interview phase, I
continued to make field notes about where I was when and with whom I spoke. I also
inserted into each field visit entry the most recent copy of the master topic list so that I
could track the topics I had not raised or that we had not the time to discuss; I also added
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in another font color three or four bulleted notes under each topic about the interviewee’s
responses. This aided the process of developing updated, prospective interview protocols
and facilitated the quick review of the most remarkable interview content. As the
interview data accumulated, certain topics became adequately addressed, which allowed
me to stop raising that topic (e.g., table mates at meal time) and to cover other less
adequately addressed and/or newly emerged topics.
Carspecken’s (1996) direction on interviewers’ response work (cf. raising a topic)
is noteworthy. I had prepared for each topic a list of probes or “covert categories” (p.
157), that is, topic elements to keep in mind without leading the interviewee. For
example, in discussions about trans-disciplinary care, I was prepared to covertly integrate
the following probes: What might the pros and cons of trans-disciplinarity be? Can you
tell me about a time when you saw a need or an opportunity for trans-disciplinarity?
What about a time when someone seemed to be practicing beyond their disciplinary
scope? Within any given topic, I encouraged both verbally and non-verbally the
interviewee to speak from their own familiar position in their own words. Concurrently, I
was opportunistic in leveraging segues to covert categories, and/or I worked the probe
into the end of our discussion about the topic, sometimes as though I was simply seeking
clarification about something the interviewee had said.
Another important methods-related protocol had to do with monitoring my own
innocuous responses, which Carspecken (1996, p. 158-162) sees as including bland
encouragements, low-inference paraphrasing, non-leading leads, active listening,
medium-inference paraphrasing, and high-inference paraphrasing. In terms of the
frequency and appropriateness of the above list of response-types, the former-most
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responses should be used most frequently so as to establish rapport and encourage the
interviewee to keep talking, whereas the latter-most responses should be used least often
as they might “lead the subject being interviewed into agreeing to things she does not
really believe or denying things she really does believe” (p. 161). Thus, I tended to limit
my interview responses to bland encouragements, low-inference paraphrasing, and to
covertly probing deeper into each topic so that I could slowly solicit background beliefs,
values, and feelings involved in the descriptive depiction of the participant (Carspecken,
1996). I permitted myself to ask medium- and higher-inference questions at the times
when I asked member-checking questions.
Creating the Reconstructed Record
With a set of 10 cleaned (de-identified) interview transcripts to add to the primary
observation record, I was now ready to resume analysis so that I could transform my
‘primary record’ into a ‘reconstructed record.’ I continued to apply the previously
developed a priori and in vivo codes to enable retrieval and cross-referencing within and
between the two sub-sets of data. I also continued to reconstruct meaning fields, but
rather than having an aim to generate interview topics, my aim at this point was to
identify data to subject to ‘pragmatic horizon analysis’ and ‘validity reconstructions.’
Derived by Carspecken from Habermas, these analytic techniques deliver higher-level
inferences about subjectively-located feelings and about enacted norms of practice. As
such, these analytic concepts both constitute and explain key elements of a social act;
reconstructions in these terms served to illuminate the (sometimes contradictory) values
and norms that underpin dementia care practices.
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To assist my own up-take and practice of these techniques, I developed empirical
and figurative illustrations. In fact, the cover of Carspecken’s (1996) book on critical
qualitative research features a simple line drawing that includes a horizontal line
intersected by a vertical one, centred on top of which are a circle and a triangle, and
extending from the top left quadrant to the bottom right is a diagonal line. A close
reading of Carspecken’s methodological theory will likely lead one to see that the figure
is a heuristic for his approach to hermeneutic reconstructive analysis. In the course of this
study, I have both internalized and adapted this heuristic, as follows.
Analyzing a social act with/in CQR.
Carspecken’s (1996) conceptual and analytic elements of a social act analyzed
within a CQR project might be conceived as having six elements (see Figure 4.3):
INSERT FIGURE 4.3 HERE.
The two lines that encapsulate the figure and that are interconnected by gray fill-in
(element #6) depict the notion of hermeneutic circling, wherein I, as an interpretive
researcher, circle among holistic, undifferentiated understandings of a social act and more
finely detailed delineations of that meaningful act. Moreover, and as reason for the two
layers of hermeneutic circling, I acknowledge that not only must I hermeneutically
reconstruct and re-cognize a given meaningful act, but so must the reader: you must read
and make sense of my interpretation of the act, circling as it were between (a) the
differentiations I make in saying what others mean and (b) a more holistic impression of
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said act. It is in this grey area where we the writer and reader meet. This outer-most
element is perhaps extraneous to the substantive content of this study, but it marks an
important epistemological element of critical qualitative research insofar that it
acknowledges the multiple layers of interpretive rendering that occurs in any such
project. Substantively, it is the first five elements of a social act that serve as
Carspecken’s (1996) apparatus upon which meaning may be conceived and analyzed.
(1) The pragmatic horizon.
‘Pragmatic horizon analysis’ is a term that Carspecken (1996) uses to refer to the
contextualization of a meaningful social act. The pragmatic
horizon is constituted by temporally-specific and
communicatively-conveyed structures that are “grasped at
once, tacitly, each moment one human being understands
another” (Carspecken, 1996, p. 110). The reconstruction of how an act is understood
involves explicating its temporal location, its linguistic/symbolic and embodied elements,
its references to objective, subjective, and normative claims, and the power-laden
identity- and role-claims. These structures are ‘pragmatic’ insofar that they contribute to
a meaningful communicative act by being action-oriented, that is, oriented toward the
establishment of a consensual truth. Although the horizon appears two-dimensional in
this figure, it is more apt to conceive of the pragmatic horizon as having depth: when we
notice an object or social phenomenon, “we notice it against many other objects [and
social phenomena] that are out of focus” (Carspecken, 1996, p. 103) but that nevertheless
interact with and (re)produce that which we notice.
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(2) The temporal axis.
Locating a meaningful social act along its temporal axis involves noting how
actors construe the appropriateness of their acts vis-à-vis
their inter-subjectively shared awareness of prior events,
about their expectations of events to come. The rhythm of
communicative exchange is also noteworthy and
productive of critical insights. While these temporal
elements are essential to the context of a social act, they might be “construed differently
by different actors” (p. 106) such that the axis essentially carries on it both objectivelyand consciously-referenced time. An example from this study is a shared awareness
among many staff about how they used to be able to “do more” for the residents, such as
assist with keeping their wardrobes and clothes in order; in contrast, “nowadays” staff did
not have time to do so (and as a consequence, many residents’ dresser drawers were in
disarray). The temporality in this comment helps contextualize the common reference to
a greater proportion of client/resident populations having severe dementia.
(3) The paradigmatic axis.
This set of communicative structures includes semantic (linguistic and symbolic)
elements as well as non-discursive elements, namely
social power, and pragmatic structures that enable intersubjective recognition and understanding. Most literally,
it was useful to make note of the semantic units that
were common to the study participants. “Semantic units have relatively stable meanings
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across a variety of interactive contexts but are always employed in relation to other
structures of meaning to bring off the sense of a particular act” (Carspecken, 1996, p.
108). Semantic units that were common to the participants in this study included: the
invitation/instruction to come sit down; asking a fellow PSW, Who’d you just do? Who
do you got?; referring to clients or residents as a new admission, a feeder, a two-person
assist, a wanderer, a vascular, an Alzheimer’s type, a wetter. Such terms “appear to
codify many complicated features of a general cultural view” (Carspecken, 2001, p. 18);
by coding these terms, I could retrieve and compare the observed social/care acts that
incorporated these seemingly loaded terms and subsequently begin to reconstruct the
claim(s) being conveyed therein.
The non-discursive elements of the paradigmatic axis further assist in conveying
meaning. Useful structures to analyze include implied contrast (softness of voice, for
example, is more fully grasped when one tacitly invokes its contrast, harshness) and
identity and role claims. Explicating participants’ claims (that they are such and such
kind of person, e.g., a clever person, a competent person, a righteous person, and so on)
“is often a very effective way to find core themes within a culture or personality”
(Carspecken, 2001, p. 16). Similarly, noting what roles were being enacted served to
bring to the fore what was otherwise recognized by the study participants themselves in a
tacit, holistic manner.
Vital to a critical research study is an understanding of power claims, also a
feature of the paradigmatic axis. Following Carspecken’s (1996, p.130) adaptation of
Weber’s (1978) conceptualizations of power, my task was to discern whether the
invocation of power was normative (wherein cultural norms are invoked to achieve
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subordination); coercive (wherein the avoidance of sanctions leads to subordination); an
interactively established contract (wherein the promise or reciprocation of favors or
rewards leads to subordination); or charming (wherein a subordinate acts out of loyalty to
the superordinate because of the latter’s personality). Such discerning analysis yielded a
sense of what norms were typically invoked (e.g., the organization should meet or exceed
government and family expectations), what sanctions were typically used to coerce
subordination (e.g., being written up / a blemish on a personal and/or public relations
record), what charming characteristics engendered a subordinate’s loyalty and
conformation (e.g., congeniality, the appearance of genuine interest and concern, the
giving of time), and what goods or services were traded or reciprocated (e.g., a caregiver
offering a client or resident validation in exchange for that person’s cooperation with
activities of daily living). Being thus oriented to the x- and y-axes of the pragmatic
horizon, I could then turn my reconstructive attention from communicative elements of a
social act to the specific objective, subjective, and normative references that intertwine
with one another to give a social claim its validity.
(4) Validity reconstructions.
In conjunction with meaning field reconstructions and pragmatic horizon analysis,
the third technique that comprises hermeneutic
reconstructive analysis is validity reconstructions. An
epistemological tenet of CQR is that ‘truth’ is defined by
its function, which is to generate unconditional acceptance
to a claim (Carspecken, 1996). In order for a particular claim or practice to win consensus
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among a group of caregivers, to be deemed valid, the claimant must convince fellow
group members with a set of reasons for that claim. Validity reconstructions are efforts to
articulate “the reasons an actor could provide to explain expressions. The reasons will
generally fall into the three categories of objective, subjective, and normative-evaluative
truth claims” (Carspecken, 1996, p. 111), depicted in Figure 4.3 as the triangle. These
ontological categories can be characterized as follows.
First, objectively referenced claims derive validity from a principle of multiple
access because they “are made against the presupposition that other people could observe
in the same way as the observer and arrive at agreement with the statement” (Carspecken,
1996, p. 64). Carspecken explains further that such a presupposition is an ontological one
insofar that “sense objects exist in such a way as to be open to multiple observers who
will agree on their existence if they share certain features of a language and a culture” (p.
64, emphasis in original). Thus, counting people or objects, noting movements, or
hearing utterances can all generate objectively referenced claims – claims that others
would agree to were they there to observe as well. Subjectively referenced claims,
secondly and conversely, derive validity from a principle of privileged access. The true
nature of a subjective state (such as emotions, desires, intentions, levels of awareness,
etc.) can be known only by that particular participant and is not accessible to an observer.
“The act of disclosure is not the subjective state disclosed; it is a representation of it. All
actors have a certain amount of control over what they reveal of their realm of privileged
access and what they conceal” (p. 69). Subjectively referenced claims factor significantly
in relational care practices, and accounting for participants’ subjective perceptions is a
quality that a Habermasian approach to inquiry would espouse (Habermas, 2003).
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The third category of reasons a person might offer in convincing others to consent
to a particular practice is that of ‘normative-evaluative’ claims. Normatively referenced
claims refer to “what behavior is proper, appropriate, and conventional; they can be
articulated as ‘should claims’” that generate an inter-subjective recognition that “people
should act in such and such ways at such and such times” (Carspecken, 1996, p. 83).
These claims “impose on others by tacitly insisting that the other should conform to a
certain convention” (p. 83). Understanding what normative claims shaped the care
cultures provided me with the means to attend to the nexus of power and truth insofar that
“[c]ultural power cannot be observed objectively but must be found within the normativeevaluative horizons of the culture being studied” (p. 145). Hence, I was interested in
discerning whether a claim was consented to for strategic, material, or psycho-social
reasons, or if “one would only consent to this norm or value because of the play of
power” (p. 145). If a claim is not being consented to freely, it is either disputed (and care
routines are (re)negotiated) or imposed through acts of intersubjective-power (such that
care routines are enacted according to the claim of the superordinate). In such cases,
subordinates’ resistance, however active or passive, will involve values, which by
definition concern ideas about what is right, wrong, good, bad; “thus norms and values
are distinct but internally connected” (p. 83) because values provide support for norms
and, conversely, “disputes over norms will soon move into value arguments” (p. 83).
Once resolved (or at least, after the dispute is settled), norms provide the conventions
people need to communicate with each other (Carspecken, 1996). While norms take on a
rule-like form when explicated (e.g., people should take turns during a social activity; we
should assist people living with dementia maintain a certain level of physical
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cleanliness), it is important to remember that norms are not rules; rather, norms are
characteristic of a particular culture (Carspecken, 1996).
(5) Fore- and back-grounded claims.
The diagonal line depicts the relative fore- and back-groundedness of a validity
claim. (It is akin to a z-axis that gives the pragmatic
horizon its depth). The phenomenological presumption
here is that an “object takes on a distinctive form within
perceptual experience only against a background horizon
… We only understand an idea against a horizon from which that idea is brought forth”
(Carspecken, 1996, p. 103). Thus, any of the elements inside the pragmatic horizon can
be re-cognized somewhere between an immediate foreground and a remote background.
It is especially useful to locate validity claims on this fore-to-background continuum, for
we “learn a lot about people and cultures when we are able to articulate, or reconstruct,
frequently employed horizon backgrounds” (p. 121). I coded reconstructions as
foregrounded or backgrounded objective claims, as foregrounded or backgrounded
subjective claims, and as foregrounded or backgrounded normative claims. The sorting
into claim types was a discreet exercise – with practice, I improved my skill (speed,
certainty) in categorizing claims as objective, subjective, or normative – I populated the
figurative triangle, so to speak. Conversely, claims are not so easily sorted into fore- and
background categories, for claims sit on more of a continuous rather than discreetly
differentiated continuum. For coding purposes, I dichotomized the claim as being either
fore- or backgrounded, but in the full reconstructions and in writing up my findings, I
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tried to be more discerning in qualitatively labeling a claim somewhere along a
continuum from immediately foregrounded to remotely backgrounded.
Hermeneutic Reconstructive Analysis Applied to a Sample Data Strip
To illustrate how meaning field reconstructions, pragmatic horizon analyses, and
back- and fore-grounded validity reconstructions inform and complement one another, I
provide here a full reconstruction of one strip of data. For this particular illustration, I
have selected a strip of data from an interview with a full-time SCU PSW.
We met in the conference room adjacent to the SCU after her shift was over. The
interview lasted 100 minutes, allowing us to cover several topics, including memberchecking meaning field reconstructions. In describing one such occasion here, my intent
is two-fold: (i) to describe a for-instance of how the member-checking was facilitated and
unfolded in this study; and (ii) to ‘show and tell’ how hermeneutic reconstructive analysis
works by applying the techniques described above within the context of the memberchecked data.
Context of member-checking query.
Part way through the interview with this particular PSW, I raised the notion of
‘remaining seated.’ The PSW listened while in 200 or so words I paraphrased an excerpt
from the stage one primary record (see the first two parts of section A in Table 4.5). As I
spoke, she murmured “Mmhmmm” several times, and said “Yeah” or “Oh yeah” thrice.
As I concluded sharing the original excerpt by mentioning that I had observed the PSW’s
hand on a resident’s shoulder, I said to her, “So you're nodding your head and, like I
152
wonder like, do you think that that PSW is getting that from [the RPN] and other…”-She interjected: “That’s what we’re told to do.” I re-stated: “Keep them seated.” She then
said,
Keep them seated. They're not to get up. They're not to stand. Not to switch seats
even. And you know [a particular female resident] will get up and want to switch
to another seat, but I just-- I hate having them sitting there all the time. I feel
terrible. I don’t like it. But that’s [the RPN]’s rule, and [the RPN]’s my supervisor
so I have to listen.
At this point then, I was already anticipating that my meaning field reconstruction
was slightly off-base – while I had accurately surmised that fall prevention is indeed at
play in PSWs’ practice of keeping residents seated, I had misattributed the practice to the
PSWs when it seemed, at least from this member-check, that some PSWs do not condone
the ‘stay seated’ practice. Nonetheless, I continued, moving from the original excerpt to
my meaning field reconstruction (the third part of section A in Table 4.4). I started
reading, saying Sitting rather than moving or dancing is the PSW’s preferred state for the
residents-- the member-checking PSW interjected:
It’s not PSWs at all. Like you… you haven’t been here in a while. [The other
full-time PSW] has been … after dinner when we bring them in the other room,
putting on music, because we can’t change anybody till 6. Sometimes we’re out
of the dining room by 20 to 6. What do we do, sit there for 20 minutes? She’ll
put music on and we’ll dance with them you know. There's a couple of them that
love to dance, and it entertains others … they clap or they’re—you can just see
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them smiling and that’s what makes it all worth it, right? It’s not the PSWs. [OC:
emphasis on not]. Stroke, stroke, stroke…
And with that, she mimicked stroking out that part of my meaning field reconstruction,
which in hindsight, I see as an indication that at least with this PSW, the researcherinterviewee relationship had been more or less democratized: she, with perhaps a vested
interest in speaking on behalf of her fellow PSWs, had felt empowered enough to right
my wrong.
After thus acknowledging her correction, I continued with member-checking this
particular meaning field reconstruction. Again, the PSW offered nods and utterances that
seemed to convey agreement with my reconstructions (restless residents do not tend to
stay seated … sitting is a fall prevention strategy … seating someone over and over can
be exasperating), but when I reached the end, indicating that a PSW’s exasperation can
manifest as an altered tone of voice AND/OR as physical restraint, the PSW quickly
added her own all-caps addition: AND [she says with emphasis], the residents get
annoyed. They get frustrated with us – they don’t want to be told sit down all the time,
just as much as we don’t want to tell them to sit down. Struck by her sense of
understanding those to whom she provides care, it is this quote that I fully reconstruct
here to illustrate what the products of a CQR analysis might be; each of Carspecken’s
(1996) three primary techniques of hermeneutic reconstructive analysis described above
is illustrated below.
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Initial meaning field reconstruction.
Constantly seating people who live with dementia and who are feeling restless is
exasperating AND that exasperation can manifest as an altered tone of voice OR as
physical restraint AND/OR as an alteration in the caregiver–care recipient relationship
AND the people living with dementia can sense the caregiver’s exasperation AND the
exasperation triggers AND/OR exacerbates frustration AND/OR responsive behaviors.
Moreover, the residents either tell caregivers AND/OR non-discursively convey their
preference to not be seated, a preference PSWs cannot OR do not respect because they
accommodate their supervisors’ preferences instead.
Pragmatic horizon analysis.
(The constituents of the pragmatic horizon are underlined). The quote confirms
that the phrase ‘sit down’ is indeed a semantic unit in this culture, that is, a relatively
stable term that’s use confers a complex, multi-faceted practice. The roles implied to be
at play here include:
the fall preventer (a role everyone shares and values, but one that registered staff in
particular enact with fervor because a fall triggers an immense amount of paper work,
assessment, and monitoring that generally, registered staff wish to avoid);
the friendly usher (a role imposed upon PSWs but shared also by registered staff
when they engage in the act of persuading a client or resident to be seated);
the compliant subordinate (the PSW who follows registered staff members’
instructions to enact a norm, i.e., seating residents or clients, a norm that one PSW
said she ‘hates’ doing and that makes her feel ‘terrible’);
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the exasperated trigger (the caregiver whose frustration with trying to keep residents
seated transfers to the residents, who, as an unintended consequence to an effort to
prevent a fall, become agitated and perhaps responsive);
the happy wanderer (the residents who appear content to pace or to move from one
chair to the next, at least until s/he meets the exasperated trigger).
Temporal effects include a shared past and on-going exposure to fall prevention
discourse and to the regular tracking of fall statistics. More immediately, there is a shared
understanding that falls in this setting trigger a whole set of administrative and nursing
processes, from documentation and notification of family to on-going monitoring. One
PSW indicated that yes, we should try to prevent falls, but they need to live too – an
apparent reference to valuing a decent quality of life in the relatively limited time that
someone living with dementia has left. Power at play is evident in the normative power
of the fall prevention discourse; in the coercive power of the public image sanctions that
accompany high fall rates and that presumably serve to motivate and re-produce fall
prevention discourse, right up to the moment of the RPN herself keeping someone seated
and/or directing the PSW staff to do so too; in the seemingly finite amount of charm-aspower that is needed to seat residents who want to wander; and in the coercive power of
physical restraint.
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Validity reconstructions.
In stating that the residents get frustrated with us – they don’t want to be told sit
down all the time, just as much as we don’t want to tell them to sit down, the following
claims seem particularly situated within this PSW’s pragmatic horizon:
Possible Objective Claims:
Foregrounded:
o Constantly seating a person living with dementia can cause them to become
frustrated.
Backgrounded:
o Residents resist or resent constantly being seated.
More backgrounded:
o Keeping someone seated all the time deprives him or her of the opportunity to
live freely.
Possible Subjective Claims:
Foregrounded:
o Being engaged in ‘please sit down’ negotiations – for either party – is not a
desired practice.
Backgrounded:
o I despise having to constantly seat residents.
More backgrounded:
o Among some staff, and perhaps especially registered staff, the prospect of fall
follow-ups provides a motivation to keep residents seated.
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o Other staff just wish residents could be allowed to walk / risk falling.
Possible Normative Claims:
Barely foregrounded:
o Our care practices should not have the effect of frustrating residents.
Backgrounded:
o Residents should be able to stand or pace as they please.
o We should do as instructed by our supervisor.
Examining this single instance of hermeneutic reconstructive analysis
(Carspecken, 1996) in reference to other parts of the primary and reconstructed records
offers much in answer to the research questions that drive this study. To the question of
what social routines do caregivers engage in, we see that seating restless residents or
clients is a common activity. Moreover, to the question of what knowledge is necessary to
enact this practice, we learn that caregivers have to know which residents are ‘a fall risk’
and/or are at risk of triggering other residents’ responsive behaviors; caregivers also have
to know how to persuade residents or clients to be seated, be that through charm (Come
here and give your bones a rest – you’ve had such a busy day), through coercion
(restraining a seated resident from standing), through contractual power (Sit there a
minute and I’ll bring you a nice cold drink), or through normative suggestion (It’s time
for a rest now). These forms of persuasion each contribute to answering the research
question that asks how power is invoked in dementia care. Further to this point, this
analysis also acknowledges the normative power inherent in disciplinary hierarchies and
suggests who seems well served by this power and who seems oppressed. In this instance,
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the person with the highest status is served best – the registered nurse mitigates the risk
that she will have to do fall follow-up – while the people with less status, the PSWs and
the persons living with dementia, are denied the opportunity to act freely or in accordance
with their values and preferences.
The analysis has also offered a sense of the roles that are being enacted in this
situation, and the interaction among these roles illuminates how caregivers in this case
are indeed quite attuned to residents’ embodied selfhood – it is just that the disparate
values along the caring/nursing hierarchy ultimately create an inequitable norm that
negates what the subordinate knows. That these findings stemmed from my analysis of a
democratized and dialogic member-check demonstrates a consistency with the values and
epistemological tenets that underpin this study: what was an initial reconstruction of a
field observation led to a more refined and critical understanding of the cultural nuances
of dementia care knowledge that manifest as the practiced norm of keeping people with
dementia seated.
Reflecting on Reconstructive Sense Making en route to Study Findings
Further to the practice of member-checking, it cannot be said that all the
reconstructions in this study’s analysis were member-checked, nor were all the data
presented as quotes in this thesis, nor the final write-up. That is, while I contend that the
member-checking I did do enriched the data quality and analysis, and perhaps too my
relationships with those participants, I concede that it was not possible to member-check
all the interpretations. That which was member-checked was selected to mitigate
interpretive error in high inference abstractions, and/or to clarify my sense-making of
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what Hardcastle et al. (2006, p. 154) described as the “culturally pragmatic material from
which actors construct their world.” Enabling research participants more opportunities to
question researchers’ interpretations as well as dominant power structures should remain
a priority of critical qualitative researchers (Vandenberg & Hall, 2011). Moreover and as
a continuation of this program of research, these study participants should be afforded an
opportunity to read and respond to the inscribed representation of their lived experiences.
And while the empirical illustration of CQR analysis in the previous section
hopefully diminishes some of its idiosyncratic, Habermasian mystique (Smyth & Holmes,
2005; Holmes & Smyth, 2011), the analysis above also speaks to a concern Vandenberg
and Hall (2011) raised: that critical qualitative researchers may unintentionally reinforce
dominant and oppressive power structures, both in their interpretive analyses and in
collecting and member-checking data. My reflections on my own performance as
interviewer lead me to re-cognize that I was perhaps complicit in such unintentional
reinforcement insofar that I led the interviewee when I asked if she thought the other
PSW had been directed by the RPN to keep residents seated. I feel comforted in this case
at least that my lead was based not on an naïve reproduction of hierarchical structures,
but rather on stage one data wherein I had observed, frequently, the RPN herself asking
residents to be seated: it was premised on an objectively-referenced claim. Moreover, I
was encouraged by the member-checking interviewee’s good-hearted candidness in
stroking out my apparent misinterpretation that attributed the ‘stay seated’ norm to the
PSW; it did not seem as though she nor I were reinforcing oppressive structures.
On the other hand, the interviewee did make seem inevitable her own
subordination by suggesting that that’s [the RPN]’s rule, and [the RPN]’s my supervisor
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so I have to listen, thus giving credence to Vandenberg and Hall’s (2011) concerns about
unintentional reification of dominant structures in critical qualitative research studies
that, ironically, aim to reveal and redress the power relations that condition oppression.
Moreover, I cannot be certain that all member-checking participants were so inclined to
openly contest my interpretations; perhaps perceived power differentials and/or a
mismatch of interests precluded a mutual commitment to co-constructing interpretations.
The espousal of reflexivity and reciprocity, and of addressing power and trust
relationships (Hall & Callery, 2001; Vandenberg & Hall, 2011) in critical research
practice nurtures a critical researcher’s effort to not undermine him- or herself, and I see
myself in this study as having enacted such reflexive practices: I strove in my fieldwork
to foster trusting and supportive (reciprocal) relationships with study participants, and to
share analytic and interpretive power with them by way of creating member-checking
conditions that invited and encouraged participants’ input (relationality). All that said, I
still need(ed) to (and did) convey to the PSW that perhaps subordinate norms that ‘feel
terrible’ to perform do not have to continue to exist; perhaps her supervisor’s ‘rule’ can
be re-negotiated? And while conveying such a notion and thereby contradicting a
dominant discourse might put careers and lives at stake (Vandenberg & Hall, 2011), the
critical epistemology and axiology (value base) of Carspecken’s methodology beckons
such critical reflection and action – such action is this project’s praxis, which brings
about the possibility of emancipation that Stewart and Usher (2007) felt CQR capable of
producing.
Related to this notion of praxis is a rhetorical reflection on the assertion that CQR
has yet to take its rhetorical turn in that the methodology has yet to sort out its technical
161
tricks of persuasion (Delamont et al., 2000). The reflection is premised on discernment
between this study’s analysis and its write-up. The analysis in this study focused on
meaningful moments of relational care, moments where care providers felt, often with a
kind of embodied, holistic recognition (Kincheloe & McLaren, 2005) an impetus to act,
then negotiate with one another to address that impetus, to deliver and receive care. The
write up that conveys the critical findings of this study aims to narrate the collective story
(Richardson, 1997) of the study participants in such a way that they would not only
recognize themselves, but such that they would re-cognize themselves, that is, see
themselves anew and become critically aware of how often the negotiation of care norms
is not premised on equal power relationships. Such re-cognition is intentionally fostered
so as to catalyze change (Freire, 1972; Kincheloe & McLaren, 1994): if the collective
narrative can become one of equalizing power and creating ethical conditions for care
discourse, the inequities of dementia care may be mitigated. It is noteworthy how helpful
this critical “pedagogy of praxis” (Freire, 1972; Gadotti, 1996) was in elevating my
analysis from a groundcover of completed reconstructions to a set of generative themes
that organize themselves around orienting the study participants to their own situation of
injustice, to the conditions therein, and to the possibility of change. Carspecken (1996)
says little about the thematic organization of findings, a shortcoming critics have not
overlooked (Delamont et al., 2000); I found that in storying these study findings in terms
of a collective story narrated by a liberating imagination (Richardson, 1997), I come
closer to bringing about re-cognition of unjust situations and to compelling those who are
a part of the knowledge culture of dementia care to create less oppressive conditions.
Furthermore, this rhetorical turn helped to ground Carspecken’s pragmatic but arguably
162
eclectic and sometimes “confusing” theoretical concepts (Holmes & Smyth, 2011):
infusing the critical re-presentations of this culture of dementia care knowledge with
praxis remains coherent with CQR’s critical epistemology, which itself binds together the
concepts that collectively constitute hermeneutic reconstructive analysis.
Conclusion
The intent of this article has been to provide an overview of Carspecken’s (1996)
critical qualitative research methodology and to describe how it was deployed in the
context of this study. The approach was founded upon a discerning appreciation of both
the critical values and critical epistemological assumptions that underpin CQR, and
marks an effort to understand where and how power relationships (among participants
and between myself and participants) can be equalized. In detailing my conceptualization
and experience of CQR data collection and analysis, I convey my contention that
qualitative health researchers should extend the benefits CQR brings to the field of
education (Carspecken, 2001) to the field of health care. Doing so can help researchers
and study participants alike re-cognize and redress the social acts that constitute the
injustices of dementia and health care.
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– Chapter Five –
Re-cognizing Social Power in Reading and Interpreting
People with Dementia in Long-term Dementia Care
Abstract
Set in two dementia care sites, this critical qualitative research study examined a key
element of organizational context – its knowledge culture. Data were collected during
ethnographic fieldwork in the specialized dementia care unit and in an affiliated, but
separately staffed, adult day program of a non-profit long-term care organization in
Ontario, Canada. This article focuses on the social power that inheres in the intersubjective and socio-political relations that envelop reading and interpreting the
responsive behaviors of persons with dementia. Data analysis entailed reconstructing the
communicative and non-discursive meanings that were conveyed during moments when
dementia care knowledge was created, resulting in three power-related themes. The
democratic co-construction of dementia knowledge represents instances of knowledge
creation when the reading and interpretation of a person with dementia occurred under
what I considered to be ideal conditions of ethical discourse; the unjust distortion and
exclusion of dementia knowledge, conversely, describes moments of knowledge creation
where coercion and hierarchical exclusion ultimately de-centre one or more of the (many)
people affected by the care knowledge (including staff, family members, and the person
with dementia). Between these, a third theme of normalized inclusiveness in knowledge
generation represents those efforts to democratize unjust conditions of dementia
knowledge discourse. This article contributes both to the field of dementia care by
showing how social and organizational power affect the reading of someone with
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dementia, and to the field of knowledge translation and its concern for being able to
understand and assess the culture and the context in which change strategies will be
developed.
Keywords:
dementia, long-term care, context, culture, critical qualitative research, knowledge
translation
A variety of demographic trends have contributed to an increased number and
proportion of older adults living with dementia (Alzheimer Society of Canada, 2010;
Hebert, Weuve, Scherr & Evans, 2013), many of whom manage comorbid diagnoses
(Neyens et al., 2006; Tariot, Ogden, Cox, & Williams, 1999). Furthermore, a growing
body of evidence describes the challenges long-term care home staff face in caring for
people who, for instance, wander (Lucero, Hutchinson, Leger-Krall, & Wilson, 1993) or
require substantial assistance with feeding (Van Ort & Phillips, 1992) or with toileting
(Hutchinson, Leger-Krall, & Skodol Wilson, 1996). These challenges, among others,
increase the potential for stress among long-term care home staff (Morgan, Semchuk,
Stewart, & D'Arcy, 2002), particularly when the challenges manifest as verbal or physical
assault (Gates, Fitzwater, Telintelo, Succop, & Sommers, 2002; Myers, Kriebel, Karasek,
Punnett, & Wegman, 2005; Volicer, Van der Steen, & Frijters, 2009). Dementia is thus
one of the main areas of knowledge where gaps have been identified in geriatric nursing,
where the bulk of dementia care takes place (Larson, Chernoff, & Sweet-Holp, 2004;
Anderson, Ammarell, Bailey, Colon-Emeric, Corazzini, Lillie et al., 2005), especially
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with regards to the management of behavioral disturbances both in acute (Henderson,
Winch, Holzhauser, de Vries, 2006) and in long-term care homes settings (Hsu, Moyle,
Creedy, & Venturato, 2005; Draper, Low Withall, Vickland, & Ward, 2009).
In response to calls to support dementia care providers (Boström, Slaughter,
Chojecki, & Estabrooks, 2012) and to better understand how organizational elements
enhance or impede the processes of knowledge exchange (Berta, Teare, Gilbart,
Ginsburg, Lemieux-Charles, Davis, et al., 2005; Bostrom et al., 2012; Moyle, 2010;
Sullivan, Kessler, Le Clair, Stolee, & Berta, 2004), the aim of this study was to
understand how the influence of social power manifests in the culture of dementia care
knowledge. As the object of this inquiry, a/the ‘culture of dementia care knowledge’ is
conceived as the ways in which long-term care residents, family members, and staff
routinely create, share, and variably enact different forms of dementia care knowledge
within a context of socio-political and –historical influence. Herein, discursive and nondiscursive communicative actions relating to social integration and action coordination
must be understood in terms that do justice to the constitutive nature of language,
participants’ own perspectives, and the relationships between power and knowledge. This
interest in how power and knowledge are interconnected follows Quinlan’s (2009)
examination of how social and institutional forces shape the knowledge work of nurse
practitioners and other health care providers in and across multi-disciplinary primary
health care teams. Her study suggests that in the course of their collective clinical
decision-making, “teams’ dialogical exchange facilitates the articulation of tacit
knowledge and opens up the communicative space for the creation of new knowledge”
(p. 625); one might presume, conversely, that teams’ dialogical exchanges might also
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impede the articulation of tacit knowledge and perhaps close, rather than open,
communicative space for the creation of new knowledge. The concern Quinlan raises is
that in trying to understand an organization’s culture of knowledge, not enough attention
has been paid to the communicative elements of culture, nor to “the dialogical exchange
that facilitates the articulation of tacit knowledge” (p. 626); knowledge translation
researchers have overlooked “the relationship between knowledge and the social
organization of power” (p. 626). This study addressed this concern by critically
examining knowledge culture in dementia care.
The Context and Culture of Exchanging Dementia Care Knowledge
A number of theoretically informed frameworks have been developed to help
knowledge translation researchers and practitioners conceptualize their work (Estabrooks,
Thompson, Lovely, & Hofmeyer, 2006), including the PARIHS framework (for
Promoting Action on Research Implementation in Health Sciences) developed by Kitson
and colleagues (Kitson, Harvey, & McCormack, 1998; Kitson, Rycroft-Malone, Harvey,
McCormack, Seers, & Titchen, 2008). PARIHS stipulates that the successful
implementation of knowledge into practice depends on three inter-related dimensions:
organizational context, the nature of the evidence to be implemented, and the means by
which change is facilitated. In 2008, Kitson et al. suggested that PARIHS be used in two
stages – a diagnostic and an evaluative stage – such that facilitation strategies should be
“shaped and molded” (p.2) once the strength of the evidence has been established and in
the light of an assessment of context. The prominence of this interplay between context
and evidence has since been extended to KT methodology in population health along
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with a call for researchers and knowledge users to collaboratively engage in phases of
knowledge creation, refinement, implementation, and evaluation (Kitson, Powell, Hoon,
Newbury, Wilson, & Beilby, 2013; Powell, Kitson, Hoon, Newbury, Wilson, & Beilby,
2013).
Given the importance then of context, researchers have examined its myriad
domains (Jacobson, Butterill, & Goering, 2003) and knowledge producing environments
(Kitto, Sargeant, Reeves, & Silver, 2012), the means by which to assess social
mechanisms (French, Thomas, Baker, Burton, Pennington, & Roddam, 2009) and
individuals’ interplay with evidence and context (Rycroft-Malone, Seers, Chandler,
Hawkes, Crichton, Allen, et al., 2013) that facilitate knowledge exchange, and how
internal and external contexts each has its own influence on the identification,
interpretation, and application of evidence (Dobrow, Goel, Lemieux-Charles, & Black,
2006). Kitson et al. themselves define context as “the environment or setting in which the
proposed change is to be implemented” (1998, p. 150), or as “the forces at work which
give the physical environment a character and a feel” (p. 152). They sub-divide the
dimension of context into three core elements – culture, leadership, and measurement –
and note that an organization is highly amenable to change when its culture values
people, is patient-centred, and, as a learning organization, includes continuing education
(Kitson et al., 1998). Building on these PARIHS dimensions of context, the Alberta
Context Tool (ACT – Estabrooks, Squires, Cummings, Birdsell, & Norton, 2009;
Squires, Kong, Brooker, Mitchell, Sales & Estabrooks, 2009; Estabrooks, Squires,
Hayduk, Cummings, & Norton, 2011) includes an assessment of culture premised on
survey respondents indicating the extent to which they agree that: they receive
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recognition from others; they have control over how they do their work; the organization
strikes a balance between best practices and productivity; they are supported to undertake
professional development; they work to provide what clients need; they are part of a
supportive work group (C. Estabrooks, personal communication). These items are said to
indicate “the way we do things” in a given organization or health care culture (Squires et
al., 2009).
Quinlan’s (2009) work suggested that the operationalization of culture (and more
broadly, context) might be expanded to bring more attention to social power and its
relation to clinical decision-making and to knowledge translation. Moreover, further
development of the construct of culture (as conceived in the ACT – Estabrooks et al.,
2009; Squires et al., 2009) might consider what contributes to a lack of recognition from
others, or to the absence of control over one’s work. How much control should one have
in their own work, and how might this vary across disciplines and/or across different
classes of nursing (e.g., registered compared with non-registered staff)? The purpose of
this study then was to critically examine the knowledge culture in two dementia care
sites: a specialized care unit (SCU) for residents living with advanced dementia in a longterm care home, and an affiliated adult day program (ADP) designed for clients with lessadvanced dementia who were still living at home. In so doing, this study may contribute
to re-conceptualizing and operationalizing “culture” and “context” in ways that consider
the broader (potentially oppressive) social forces at play in constituting dementia care
knowledge. Conceiving of advanced dementia care knowledge as knowing how to read
and interpret a person with dementia and how to prevent and respond to responsive
behaviors – often while assisting with activities of daily living – this article focuses on
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the social power in the inter-subjective and socio-political relations that envelop reading
and interpreting the responsive behaviors of persons with dementia.
Methodology
‘Critical qualitative research’ (CQR) (Carspecken, 1996) shares with critical
ethnography an aim to understand the routines and taken-for-granted values and
assumptions that shape a particular culture (Manias & Street, 2001; Thomas, 1993), and
aims to redress the social inequities and injustices that are (re)produced by both those in
powerful social positions and by their subordinates (Kincheloe & McLaren, 2005). It was
assumed in this CQR study that a given lifeworld (Habermas, 1985) – that is a particular
cultural group and the system(s) in which it is embedded – is comprised of objective,
subjective, and inter-subjective elements that intertwine to produce practical, social
knowledge about what is true and what is right (Habermas, 2003). In this view, truth is
not conceived of as Truth in a transcendent sense; rather, truth is instead conceived of in
terms of its function, which is to generate unconditional acceptance of particular claims
in meaningful moments of communicative action, moments that entail a speech act and
non-discursively conveyed meanings. The primacy of inter-subjectivity in this
worldview draws attention to communicative action and dialogue, and to discourse ethics
by assessing whether or not cultural practices are arrived at fairly. By reconstructing such
communicative acts in terms that explicate both foregrounded and backgrounded
(implicit and/or non-discursive) claims, the objective, subjective, and normative claims of
a particular culture can be examined so as to better appreciate how social power
influences truth (Carspecken, 1996) about dementia care.
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Ethical Considerations
Data were collected in a single, non-profit long-term care home and its affiliated
adult day program located at the same site. The Research Ethics Board at Western
University approved the study. Participants provided informed consent to be observed
and/or to participate in audio-recorded interviews, and to allow use of anonymous data
for analysis and dissemination. Because many of the clients and residents were living
with advanced dementia, proxy decision-makers were included in the recruitment process
for both groups. On days when data were collected, a notice was posted on the door(s)
into the research site to inform anyone entering about the study, its aims, and who to
contact for further information.
Participant Recruitment
Most staff members were recruited during the first four visits to the research site.
A member of the senior leadership team helped facilitate this by asking staff members to
gather at the beginning or end of their shift to consider enrolling. Subsequently, any nonenrolled staff members who were encountered were notified by the researcher about the
study, offered a letter of information, and invited to participate. As indicated in Table 5.1,
aside from the senior leadership team, staff participants represented a variety of
disciplines. Participants included full- and part-time staff from day and evening shifts.
INSERT TABLE 5.1
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To recruit residents and families from the SCU, registered nursing staff
approached residents/families on my behalf; if they expressed interest, I subsequently met
with them to provide the relevant information, and, where applicable, the appropriate
consent form. As indicated in Table 5.2, the majority of SCU residents’ primary
dementia-related diagnoses were of the Alzheimer’s type (16 of 32 residents); others’
primary diagnoses included Pick’s disease and vascular dementia; seven residents had
been diagnosed with an unspecified dementia.
INSERT TABLE 5.2
In the ADP, clients and families were invited to participate by mail. Clients’
powers of attorney received a letter of information, a consent form, and the researchers’
contact information. The ADP clients had a distribution of diagnoses similar to the SCU
residents, but were at an earlier stage of disease progression. Each day, clients were
divided into high-, mid-, and low-level functioning groups, each with its own program
space and recreational therapist. One to three personal support workers (PSWs) and one
registered nursing staff provided interdisciplinary support to the clients and recreational
therapists by assisting with ADL and other health care needs and by monitoring the
clients when the recreational therapists were on break.
Data Collection
Data were collected in three phases. The first phase entailed non-participant
observation whereby I would make hand-written field notes in a journal, which were later
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transcribed. Noting participants’ routines and interactions as well as body language and
other contextual information, observations were conducted primarily in the common
areas of the SCU and in some instances within enrolled residents’ rooms. In the ADP,
observations were conducted in the three activity rooms and in two staff workrooms.
Although the observations were largely non-participant in that I avoided asking any deep,
penetrating questions, some interactions did occur, mostly in terms of seeking
clarification about routine care practices, that is the care practices that staff and family
members engaged in as well as patterns of inter-personal interactions among the
participants. On eleven occasions, dialogic exchanges between care providers were
audio-recorded with permission.
As data accumulated and in preparation for the subsequent interview phase,
analysis of the observation data began with a focus on generating topics that addressed
actions fundamentally related to dementia care knowledge. The intent of the interview
phase was to invite participants to describe and explore topics related to dementia care
with their own vocabulary, metaphors, and ideas. Thus, participants were invited to share
their views on topics such as, the notion of appropriateness in dementia care, coming to
know new residents, flexibility in work rules and routines. Additionally, a number of the
phase two interviews included member-checking, wherein the participant would be
invited to listen to or read and respond to the initial reconstruction of what seemed to be
going on in a particular moment. Phase three, conducted after the interview data had been
analyzed (approximately two months later), focused solely on member-checking the
interpretations that arose during this most intensive phase of analysis: participants were
invited to comment on an emergent sense of what dementia care entails, and on the
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various forms and sources of knowledge that drive that care. This additional data
collection and discussion resulted in refinements to how dementia care knowledge was
conceived, and provided opportunities for participants to reflect on the salience of the
findings with respect to their own work and caregiving roles.
In total, data collection spanned over nine months and included 45 field visits,
146 hours of observation spread across both day and evening shifts and across all
weekdays, 11 informal and 24 formal audio-recorded interviews, 10 observed and audiorecorded team meetings, and one focus group with the senior leadership team composed
of 12 individuals.
Data Analysis
Hermeneutic reconstructive analysis in CQR (Carspecken, 1996) seeks to
delineate possible meanings, communicative structures that convey meaning, and the
objective, subjective, and normative claims that people make in negotiating consent to
particular routine practices. It is hermeneutic in that it focuses on the making and
interpretation of meaning in the negotiations and events that participants engage in
together; it is reconstructive in that it “reconstructs, into explicit discourse, cultural and
subjective factors that are largely tacit in nature” (p. 93).
The first of the three elements of HRA conducted was initial meaning field
reconstruction, in which tacit modes of meaning that underlie the recorded interactions
were identified. These initial reconstructions are prone to error, hence the importance of
engaging participants in member-checking; that said, it is presumed that over the course
of data collection and as familiarity with the participants and the research sites grew, the
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reconstructed meaning fields grew closer to what the actors themselves would report
(Carspecken, 1996).
The second phase of Carspecken’s (1996) analytic approach is called pragmatic
horizon analysis. This entailed making note of how participants’ meaning-making was
affected by inter-subjectively shared awareness of prior events and of expectations of
events to come. To complement this temporal contextualization of meaningful events,
noted also were the participants’ identity claims (e.g., I’m a hard worker) and social roles
(e.g., instructor, tone-setter), the semantic units they used to convey meanings unique to
their culture (e.g., feeders, wanderers, behaviors, interventions), and the kinds of power
wielded in persuading others to consent or conform to particular care practices. This
focus on power was central to the analysis of reading and interpreting a person with
dementia, and entailed noting: (i) whether acts of reaching consensus were based on
coercive, charming, contractual, or normative power, and (ii) whether or not the
participants engaged in the negotiation of the care act were afforded the conditions of
ethical discourse – that is, were they permitted to speak freely, to be heard, to consent to
the care practice without coercion?
The third phase of hermeneutic reconstructive analysis is what Carspecken (1996)
calls validity reconstruction. Herein, the explicit and implied claims being made during
the negotiation of a care act were delineated into objective claims (about what multiple
observers would agree exists), subjective claims (about how one feels), and normative
claims (about what should happen, what is appropriate). Normative claims are valueladen: a participant’s sense of what is good or bad or right or wrong manifest as
conveying what should be. While each of these three kinds of claims can be made
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explicit, each are also conveyed (in meaningful moments) in a more implied fashion, or
what Carspecken refers to as backgrounded claims. Hints of sarcasm, a raised eyebrow,
an implied contrast, or even a particular identity claim (as such’n’such a person) can all
convey in a very subtle fashion the objective, subjective, and normative claims that are
being communicated in the negotiation of a care act. Hermeneutic reconstructive analysis
brings to the fore these backgrounded claims so as to illuminate the social power at play
within a particular culture.
Rigour
Strategies used to ensure a high quality of data collected included the use of
multiple data collection methods (non-participant observation, informal interviews,
planned in-depth topic-driven interviews, focus groups), prolonged immersion in the
research site, a flexible observation schedule, and non-leading interview question
(Carspecken, 1996). Analytic rigour was established by the use of negative case analysis,
peer debriefing to check for biases or absences in the reconstructions, member-checks,
and by comparing and contrasting strips of observation data with strips of interview data.
Finally, to maintain its epistemological-methodological coherence (Holloway & Todres,
2003), researcher-participant interactions and the write up of the study findings presented
the opportunity for participants to re-cognize their own collusion in the (re)production of
any such social inequities and to feel compelled to redress their own situation (Freire,
1972), thus generating a kind of catalytic validity (Lather, 1986; Kincheloe & McLaren,
2005) that re-orients participants to the transformative possibilities within their own
culture.
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Findings
Manifesting in inter-subjective and socio-political realms, knowing how to
provide care for someone with advanced dementia is conceived in this study as knowing
(i) how to read and interpret a person with dementia, often while assisting with activities
of daily living (ADL), and (ii) how to prevent and respond to responsive behaviors. The
findings reported here focus on the first of these two practices by examining how staff
went about reading and interpreting a person with dementia on a day-to-day basis. As far
as ADL care is concerned, this responsibility belonged largely to the PSWs who assisted
with dressing, toileting, personal hygiene (including oral care and bathing), feeding, and
the provision of meaningful social engagement and activities. Significant or total
assistance was needed by most of the SCU residents and for some of the ADP clients. At
various times, nursing, personal support, and recreation staff were all observed engaging
clients/residents in 1:1 conversations, typically by invoking something from the
client/resident’s personal history or from current events as a topic of conversation.
Recreation staff featured prominently in the provision of meaningful activities by
facilitating large group activities such as exercises, games, and music programs, and by
enabling clients/residents to engage in individual activities, such as arts and crafts,
puzzles, and reading.
Reading and interpreting a person with dementia.
Knowing how to read and interpret a person with advanced dementia was
premised on both an inter-subjective realm wherein caregivers observed or engaged
directly with a person with dementia and with one another, and a literal realm wherein
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caregivers referred to existing electronic records about the care recipient. Moreover, such
reading and interpretation was not only a caregiving behavior, or skill, that rested with
the care provider; rather, it was enveloped in relational and socio-political aspects of the
care settings, conceived here as three ‘power themes’: (i) the democratic co-construction
of knowledge; (ii) the unjust distortion and exclusion of knowledge; and (iii) normalized
inclusiveness in knowledge generation. Described first though are the realms in which
these power themes manifest.
Inter-subjective and digital realms.
Caregivers needed to know how to read the person they were caring for not just in
an objective, observant kind of way, but inter-subjectively, that is in approaching and
interacting with a person with dementia. The staff in both the SCU and the ADP were
observed, and later described, paying attention to body language, particularly as
conveyed by one’s eyes. Here is one SCU registered practical nurse (RPN) describing
how establishing eye contact with the residents at the beginning of each day is an
important part of her care routine:
I do my paperwork in the morning, get myself set up for what has to happen
during the day, get my cart ready and then I’m out on the floor, I start the morning
medication pass, and that’s when I say good morning: I take a few extra minutes
with them, I go eyeball to eyeball with them, and depending upon their response
to me, that’s when I’ll check them a little bit cognitively, and I’ll say, You
remember me? And you know, a lot of times, No, never seen your face before,
and some of them look at me and say, Yeah, I remember. They never remember
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my name. Without my nametag, they wouldn’t remember. But I think whether it’s
my routine, my voice, or being here full-time, I have a good relationship with all
of them. But I also work at that relationship from day one when they come to us.
I’m a pretty old-fashioned kind of nurse.
In the presence of impaired verbal communication, the body’s capacity to
communicate one’s emotional status (mood, anxiety) was fundamental to a person with
dementia’s participation in any such inter-subjective interaction. Being attuned to this
communicative capacity helped the care provider understand the client/resident’s
readiness to accept care, and to gauge whether or not the client/resident could
comfortably and safely interact with others and/or engage in the recreation programs
being offered. This also entailed appreciating daily, and perhaps expected, fluctuations in
one’s mood and level of engagement with others (often attributed to sundowning – the
period at the end of the day when clients/residents often experienced heightened anxiety).
Furthermore, knowing how to read a person with dementia’s emotional status and
cognitive skill level was important in terms of ongoing assessment of disease progression
or of intervention/treatment success. As such, care providers (and full-time registered
nursing staff in particular) typically sought to establish a baseline of a person’s psychosocial functioning such that deviations from that baseline – She’s a little off today – could
be taken as an indication of a need to investigate more thoroughly, and possibly to revise
the client/resident’s care plan.
Indeed, a client or resident’s care plan was an additional and vital source of
information for (some) care providers in reading a person with dementia. The electronic
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documentation of one’s psycho-social functioning and medical and social history, often
contributed to by family members during initial admission assessments, helped staff care
providers prepare for and further contextualize their own inter-subjective experiences
with a given client or resident. Staff working in the ADP frequently interacted with
clients’ electronic records by both reviewing and adding chart notes, and the recreational
therapists in particular often reviewed clients’ records to reacquaint themselves with the
family and social history of the clients attending the program on that particular day. One
ADP recreational therapist explained,
I love charts. I love knowing about the person because I feel I can give them way
more – I’m kind of, not obsessed, but to me, it’s a really important part. I feel like
I could be their friend and get to know them if I know anything about them. If I
know – if they were a sailor. If they were, like anything. Anything I can have
about them … just because they’re low functioning doesn’t mean I can’t get
anything out of them. So if I have any little– or if I’m doing a program and I
know they have a dog, you know, ‘You have a big dog.’ You know? If I can
know some of that information, then all of a sudden they’ll wake up and they’ll
actually participate for me. Now I can’t know everything about everybody, but I
feel the more I get to know, the more I can get from them and the more pleasure I
get from my job making them happy too. So that’s kind of my thing.
Not all staff had equal opportunity to access and read this electronic information,
however. In both the SCU and the ADP, PSWs rarely accessed these records, thus
limiting their reading of residents/clients to an inter-subjective realm. That said, the
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PSWs in both sites contributed significantly, albeit indirectly, to the addition of new
information to electronic records, as evidenced by the mantra always tell the registered,
which is to say, whenever a PSW recognized a change in a client/resident’s behavior or
mood (or, of course, health care needs), s/he was expected to let the registered nursing
staff know so that the change could be investigated, monitored, and/or documented. At
least in an inter-subjective sense, the reading and interpretation of a person with dementia
was something that all dementia care providers needed to know how to do. As described
next, the social power that enveloped this reading and interpretation could, at times,
render the dialogic exchanges of this knowledge as democratic and inclusive.
Power theme 1: Democratic co-construction of knowledge
This theme is exemplified by the reconstruction of an interactive sequence among
ADP recreational therapists making decisions about which clients should attend which
afternoon program; see Appendix 5.1: Do you know who gets along? The reconstructed
validity claims from this interaction include backgrounded objective claims that a client’s
mood can be observed and that that knowledge contributes to a shared decision about
which program a client might attend (the ‘sorting’ of clients into afternoon programs
always involved at least two recreational therapists, and sometimes as many as five). This
interaction contributed to the recreational therapists constructing a shared sense of who
gets along and who does not. These objective claims were supported by the subjectively
held inclination to problem solve as well as backgrounded normative claims that this
decision-making should be democratically shared among the recreational therapists, and
that this decision-making should take into consideration past reading and interpretations
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of the person with dementia. Care providers were free to share their own perspective and
experience, and together, they co-constructed new knowledge about the person with
dementia: others’ opinions were solicited; pros, cons, and alternatives were considered;
and the proposed plan was consented to without any sign of coercion. The social dynamic
among these recreational therapists thus (re)produced a culture of democratic coconstruction of knowledge.
This democratic co-construction was evidenced by roles the recreational
therapists enacted, including: shared decision-makers – the three recreational therapists
considered together which activity clients should attend that day and which clients
could/should be seated together or introduced; strategic match-makers – the pairing of
particular clients yielded opportunities for socialization and mitigated pacing; strategic
risk managers – the recreational therapists strategized together about how to mitigate the
risks that inhere in constant pacing. In these roles, the disciplinary practice of being a
recreational therapist and a dementia care provider was democratized insofar that each of
these roles entailed co-constructions of how to read the clients and interpret their
socialization needs, the risk(s) they might pose to themselves or others, and/or the
activities they are likely to enjoy. Moreover, two potential barriers to such
democratization were absent in this scenario: the care was not being negotiated among
two different disciplines, nor among providers with clearly demarcated hierarchical
placement; that is, these roles were taking place among providers with arguably equal
power and within a single discipline. This should not be taken though as requisite for
democratic co-construction of dementia care knowledge; the following example of this
power theme features an inter-disciplinary interaction.
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As a second illustration of democratic co-construction of knowledge, consider the
appended scenario wherein a RPN from the SCU invited a recreational therapist to
complete a standardized assessment of depression for a particular female resident – see
Appendix 5.2: You spend more time with her than I do. At the beginning of this
interaction, the RPN acknowledged that she had invited the recreational therapist to
complete this assessment with her because she “wanted to make sure it was fair” to this
female resident that the RPN was “not over judging or under judging her.” This
acknowledgment might be taken as an implied normative claim about what such
assessments should entail, i.e. that the assessment should benefit from multiple
perspectives, and/or that those with the most experience caring for the resident be
involved in making the assessment. Thus, because the recreational therapist spends more
time with the female resident than does the RPN, the recreational therapist should have
input into the scoring of the resident’s depression. Concurrently, further backgrounded
normative claims stipulated that nursing and recreation staff should collaborate to coconstruct an assessment of a resident, and that standardized assessment tools such as this
depression scale should contribute to the establishment of knowledge constructions.
This theme of democratic co-construction of knowledge was present in both the
ADP and the SCU, and manifested both within and across disciplines. The theme might
be said to represent the ideal conditions for generating dementia care knowledge in that
the ideal conditions for ethical discourse (Habermas, 2003) were met: in co-constructing
dementia care knowledge, participants were free to share their own views and could
contribute to the negotiation of practice norms without feeling coerced. The normative
power at play in such interactions (re)produced collaboration and shared decision-
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making, which in turn served well the actors involved – their own psychological-social
interests appeared to be met insofar that their professional identities were validated as
astute, competent, and valued, and they were afforded collectively-conceived strategic
insights into how best to care for the person with dementia. Arguably absent from these
democratic and co-constructive negotiations, however, is the person with dementia who
is subjected to the providers’ care decisions, and/or their family members. In this study,
this absence reflected a backgrounded, implied care norm that suggests that a person with
advanced dementia often cannot communicate verbally his or her care preferences, and so
providers must themselves take the position of their clients/residents in the decisionmaking processes and continue to be aware of the impact of their decisions. Family
members were sometimes involved in this process when new dilemmas arose (e.g., a
newly observed or difficult to manage responsive behavior; a change in health status), but
by design, both the ADP and the SCU offered family members respite from this day-today decision-making – family members did not attend or participate in any ADP
activities, and only a few were regular visitors to the SCU. Thus and in the absence of
family members, a feature of this theme is the shared effort of the staff care team to
validate the clients/residents – the providers all seem to be serving the client/residents’
best interests: which program would they enjoy the most? Who would be good to pair
together for a chance to socialize? Is an adjustment to their prescribed medications
required? This benevolence is characteristic of democratic co-construction of knowledge,
and contributes to the ideal conditions for reading a person with dementia. This theme
stands in contrast to the second theme of power-laden reading and interpretation, coercive
distortion and exclusion of knowledge, which is described next.
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Power theme 2: Unjust distortion and exclusion of knowledge
The theme of unjust distortion and exclusion of knowledge is explored in relation
to an exemplar reconstruction that features a PSW’s encounter with a female resident
whom she was about to help bathe – see Appendix 5.3: Normally I would have left her,
but down here. Charged with the responsibility of assisting a female resident with a bath,
and despite having sensed agitation and despite the resident’s stated preference to not
have a bath, the PSW was arguably overpowered by the organizational norm to complete
the care task anyway, and, in doing so, she herself was harmed in a physical altercation
with the female resident. (She was scratched on the arm). In contrast to the normative
power that (re)produced democratic knowledge creation in the previous theme, this theme
is characterized by coercive power that (re)produced practices that contradicted
individual providers’ care values and knowledge (as well as the purported organization
values). The coercive power is evidenced by the PSW’s backgrounded indication that she
had internalized an expectation to do the bath, (almost) no matter what; if she did not do
the bath, she presumably had to face her colleagues, supervisors, and/or the resident’s
family members and explain that she could not entice or persuade the resident to take her
bath. This would also have the effect of putting into motion a need to reorganize the
week’s bath schedule. Thus, it seems, the PSW was highly motivated to complete the task
and to avoid the psycho-social sanctions she would otherwise face, even if it meant
encountering, creating, and/or working through the resident’s agitation/aggression. Such
motivation essentially trumps her own intuitive reading of the resident as well as the
resident’s own stated preference to not have a bath. Consequently, we can see that the
female resident invoked her own kind of coercive power in being physically aggressive,
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as if to convey, If you do this to me against my will, the sanction you will face will be
aggressive resistance. Study data showed, however, that when care had to be done, staff
overcame such resistance by way of persistence, insistence, teamwork, and physical
strength, all in service of the internalized practice norm of task completion that contests
and distorts care providers’ initial and intuitive sense of what they read in a person with
dementia.
In terms of whom this distortion of knowledge serves and impacts, the
organization as a whole benefited insofar that it could report to government inspectors
and/or family that adequate care had been provided, and indeed, in asserting her power
over the resident, the PSW avoided having to account for an uncompleted task. On the
other hand, as the less powerful actors affected in this scenario, the PSW and the resident
experienced unethical conditions of discourse insofar that they consented to the care act
only under subtle and backgrounded coercion: the PSW had to complete the task or face
psycho-social and identity sanctions from her peers and/or supervisors, while the resident
acquiesced to the persistent persuasion of a care provider determined to complete her
task. A consequence of this unjust distortion then is the exclusion of both the subordinate care provider’s knowledge and the resident’s care preferences.
As demonstrated by Appendix 5.4: I don’t believe that, coercive distortion and
exclusion were at times further (re)produced by hierarchical differences between
registered and non-registered staff. Typical of PSWs’ reports that their knowledge of
residents was ignored and/or deemed illegitimate by some registered nursing staff, the
reconstruction of this quote indicated that the subjective state of those who experienced
such subordination was one of feeling offended and devalued. Such a scenario typically
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included the adoption of the following roles: the PSW as a want-to-be knowledge sharer;
the one kind of registered staff who solicits and values PSWs’ knowledge; the other kind
of registered nursing staff (featured in this appended reconstruction) who reproduces a
hierarchical scheme that invalidates the PSW’s knowledge, resulting in the demoralized
PSW who feels there is nothing she can do about the way she is treated. Registered staff
enacting the exclusionary role and who were recently unfamiliar with the SCU residents
were prone to misjudge residents’ psycho-social functioning, a problem that was
compounded when that registered staff neither solicited nor valued the knowledge of the
full-time PSW with whom she was working. In other words, a part-time RPNs’ ability to
judge residents’ wellbeing and functioning would be enhanced were s/he not to exclude
sub-ordinates’ knowledge.
In such cases of exclusion, social power can be seen to manifest primarily as two
contesting forms of normative power: on one hand, the presumably desirable norm is that
knowledge of residents is exchanged freely and that all staff on any given shift,
regardless of their disciplinary status, function as a team. On the other hand, and
seemingly more problematic, the reification among (some) registered staff of the
normative subordination of PSWs ultimately manifests as coercive power insofar that the
PSW experiences her own psycho-social sanction: she is discredited and left feeling
devalued. This exclusion amounted to an unethical condition for discourse (Habermas,
2003), and serves (along with the bath scenario above) as a second example of injustice
and oppression within the culture of dementia care knowledge.
The two power themes presented so far essentially reflect polar opposites in terms
of their conditions for ethical discourse (Habermas, 2003). Democratic ideals of
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inclusiveness and a lack of coercion characterize theme one, whereas theme two is
characterized by exclusion and by the presence of coercive power such that those affected
by the care knowledge being generated are either not included in the negotiation, and/or
they are somehow coerced into agreeing and complying with the care decision. The third
theme related to reading a person with dementia falls somewhere between these first two
extremes.
Power theme 3: Normalizing inclusiveness in generating knowledge.
In normalizing inclusiveness in generating knowledge, those who are affected by
the care decisions are included in the care planning process, but the conditions
surrounding their participation border on being coercive; only when re-framed as strong
leadership does coercive power become normalizing power. Two reconstructions, one
from each site, illustrate this theme. The reconstruction in Appendix 5.5: Nursing is only
as holistic as you make it, features an ADP RN chairing a short, daily, midday meeting
with the PSWs. Sitting together around one large table, an RN would bring to the meeting
a binder into which she would write notes to later be transcribed, and with pen poised,
would often commence the meeting by wielding normative-authoritative power, saying to
the PSWs, “Okay ladies. Talk to me. What’cha got?” Any silence that followed soon felt
unbearably loud, and typically, the PSWs would report on who did or did not eat, or on
who was resisting care, or on emotional status and behavioral manifestations of their
dementia. Probing about trends, the RN would seek clarification about whether the
PSWs’ observations were new, recent, or a continuing trend, and about what strategies
the PSWs and the team might employ to help meet the clients’ care needs. In a
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subsequent interview with the RN, she highlighted the significance of these daily
meetings, noting the opportunity to “not just get stuck in the tasks” and to instead “see
them [the clients] as a person;” these meetings provided the opportunity to PSWs and the
RN alike to “share the knowledge of who [the clients] are.”
In contrast to the reconstructed I don’t believe that quote (in Appendix 5.4) where
the hierarchical nature of the registered – non-registered staff relationship is reproduced
in a divisive fashion, here the norm is one of bridging the PSWs’ knowledge with the
RN’s in an inclusive fashion. A significant role that the RN adopts in this context is that
of ‘educator-as-facilitator of knowledge exchange.’ Inherent in this role is the RN’s
identity claim of herself being a holistic nurse as well as a team leader capable of
empowering her subordinates. Social power can again be seen to manifest primarily as
(becoming) normative: the attainment of this more democratic and inclusive norm is
enabled through the reproduction of normative authority that creates an expectation
among the PSWs that they will participate in the meetings. This normative power is aided
by the power of charm: rather than foster participation in a coercive fashion, it was clear
from the RN’s reflections that she strove to make the PSWs feel valued, saying in another
segment of the same interview, “I have to be very careful to not make [any of the PSWs]
feel that I think what [one person] thinks is more important – it’s just as important as
what everybody else is saying; if they don’t think they’re being heard, they’re not going
to talk to me, so they have to know that they’re being heard.” The RN’s apparent
sensitivity to group dynamics indicates that she understood that if her sub-ordinates do
not feel equally valued, the more historically (re)produced norm of registered—nonregistered divisiveness will take hold, and even then, that coercive edge of her
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authoritative power would not likely bring about the desired quality of dialogic
knowledge exchange. Hence, her efforts normalized inclusiveness, not just with one but
with all the PSWs with whom she worked.
Normalizing inclusiveness in generating dementia knowledge also occurred in the
SCU setting. In Appendix 5.6: We’re working on developing a relationship with him, the
enactment of inclusiveness bridged both the disciplinary/expertise gap between a RPN
and a physician, as well as the relational and communicative gap between a resident and
the staff. The reconstruction features a RPN reviewing with a physician a list of
residents’ names and care needs; the RPN raised concerns about one particular male
client and her efforts to establish a rapport with him. Ultimately, the RPN persuaded the
physician to increase the daily dosage of the resident’s anti-depressant. The physical
absence of the resident in question in this passage illustrates how, in the culture of
dementia care knowledge, the social power in clinical decision-making lies not with the
resident but with professional caregivers. Deemed as a consequence of impaired verbal
communication and cognitive functioning, this practice norm seems both obvious and
taken-for-granted. The reconstructive analysis though brings to the fore important claims
that the RPN backgrounded in her exchange with the physician: the objective claim that
maintaining an established relationship with a resident – especially a newly admitted
resident – provides a sense of the resident’s care needs; the subjective claim that the RPN
feels frustrated and concerned that she could not (yet) relate to this particular man; and
the normative claim that physicians should consider seriously the judgments of the
registered nursing staff. In the clinical decision-making interaction with the physician,
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these claims combined to enable the RPN to speak on behalf of and advocate for the
resident.
The reconstruction thus illustrates how important it is to a physician that the
nurses are able to read and to contextualize the residents’ dementia and wellbeing. Thus,
even though the normative authoritative hierarchy was maintained between the RPN and
the physician (the physician maintained decision-making authority), at the moment when
the RPN’s knowledge of the resident was articulated, the physician read the resident
through the eyes of the RPN; the conditions of dialogic exchange fostered inclusiveness,
approximating the democratic co-construction of knowledge described in theme one.
What discerns this normalized inclusion from that democratic co-construction of
knowledge, however, is that continued existence, however backgrounded, of a
hierarchical divide. In the examples provided in theme one (Do you know who gets
along? and, You spend more time with her than I do) – in each of these cases, no
significant hierarchical difference separated the recreational therapists from one another
or from the RPN. In these last two examples though, the RPN and the physician
respectively maintain and re-produce their authoritative stance while normalizing
inclusiveness.
Normalizing inclusiveness in generating knowledge is a theme that fits between
the democratic co-construction of knowledge and the unjust distortion and exclusion of
knowledge as an alternative means by which to generate shared knowledge about the
people for whom care is being provided. Indeed, normalizing inclusiveness might be
taken as a strategy for providers finding themselves in distorting and exclusionary
conditions and wanting to move toward democratic co-construction of knowledge. The
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discussion that follows considers how these power-laden themes regarding the reading
and interpretation of a person with dementia relate to one another.
Discussion
Because people with dementia in this study frequently experienced an impaired
ability to communicate verbally, and because of the cognitive impairment in dementia,
reading and interpreting a person with dementia required one to be attuned to the person’s
non-verbal communicative capacity, be that by eye contact and body language, by the
mood and emotional status the person conveyed, and/or by the electronic record of
his/her social and medical history. As reading and interpreting a person with dementia
occurred, social and organizational powers variably took form as normative, coercive,
and charming power, often in a complementary way, to shape the dialogic conditions that
manifested at the moment that the reading of a person with dementia became shared
knowledge. The findings presented in this article discerned three power themes that
enveloped and conditioned the practice of reading and interpreting a person with
dementia: (i) the democratic co-construction of knowledge; (ii) the unjust distortion and
exclusion of knowledge; and (iii) normalized inclusiveness in knowledge generation.
These findings are relevant both to anyone living or working in long-term dementia care
who is affected by care planning, and to knowledge translation (KT) scholars and
practitioners who appreciate that as a part of context, the knowledge culture being studied
and/or targeted (for a KT intervention) needs to be understood in terms that make clear
the influence of social power among and between the culture’s constituents and the
intervening knowledge translators. Accordingly, the ensuing discussion invites
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consideration of how these findings contribute to the existing literature pertaining to
attunement, power in dialogic exchange, and to assessing culture as part of context.
Attunement.
Based on reconstructive analysis (Carspecken, 1996), these findings have shown
that when knowledge of one’s life history is assembled together with embodied, intersubjective recognition, caregivers read and breathe life into what Kontos called embodied
selfhood: “a complex interrelationship between primordial and sociocultural
characteristics of the body” (2005, p. 559). Ultimately, being so attuned to the person
being cared for demonstrated that the body is a site of knowledge production (Kontos &
Naglie, 2009). It was also evident that a subjective state of inquisitiveness flourished
most when the ideal conditions of knowledge creation were in place – the democratic coconstruction of knowledge was characterized by inclusiveness and by the absence of
coercion, and engendered a more holistic reading of the person with dementia so as to
nurture personhood in a way that looks beyond the disease (Dupuis, Wiersma, Loiselle,
2012; Kitwood, 1997; Kontos, 2005; Touhy, 2004). Thus, the findings reported here
resonate with previous research that found that caregivers achieve understanding of care
needs by way of affect attunement, inductive puzzle solving, and having knowledge of
residents’ life histories (Haggstrom, Jansson & Norberg, 1998; Anderson et al., 2005)
such that caregivers ‘figure it out in the moment’ (Janes, Sidani, Cott & Rappolt, 2008).
Importantly, these findings extend our understanding of the social power relations
that envelop this ‘figuring out,’ this reading and interpretation. For instance and as in
power theme two, when social power manifests unjustly as the distortion and exclusion of
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knowledge – brought about either by existing hierarchical rifts among staff members
(such as those described by Jervis, 2002) and/or by normative organizational powers that
subtly displace caregivers’ intuitive sense of clients’/residents’ care needs (such as those
described by Kontos et al., 2010) – the inquisitive, solution-oriented character of a
caregiver is replaced by subjective states of feeling offended and devalued. Rather than
discussing what might have contributed to a resident’s agitation or aggressive behavior,
the PSW facing a divisive registered nursing staff member instead turned her attention to
her own exclusion and subsequent frustration. If a caregiver’s subjective experience is
dominated by such diminished emotions, if the psychosocial interests of the caregiver are
threatened by the social power being wielded by others, space for compassionate
curiosity and client- or resident-focused care cannot flourish; instead, caregivers’ actions
begin to be in service of their own threatened interests rather than in service of their client
or resident.
These study findings also extend our understanding of how a care team can
optimize its collective attunement. While such normalized inclusiveness was maintained
within hierarchical relationships, the efforts by those in higher positions of power to
solicit and value their sub-ordinate’s knowledge and experience reflected an empowering
dynamic similar to what Rycroft-Malone (2004) and colleagues (Kitson et al., 1998,
2008) see as qualities of leadership. As such, one of the benefits derived from normalized
inclusiveness is that multiple perspectives contribute to a shared sense of being better
attuned to each person with dementia.
This study contributes an understanding that social power plays a significant role
in the production of dementia knowledge, and that normative and coercive power
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especially mix at organizational and individual practice levels to enhance or impede
quality care. This then begs for dementia caregivers to not only be attuned to the people
they help care for, but also to be attuned to power in dialogic exchange.
Power in dialogic exchange.
Of central importance in this study’s analysis has been the dialogic conditions at
the moment when a single caregiver’s observation becomes shared knowledge, or at the
moment when the privately-known preference of the person with dementia becomes
known to the caregiver. Quinlan (2009) found in her examination of collective decisionmaking among nurse practitioners in primary care settings that although tacit knowledge
is difficult to express, “it is precisely in its conversion into explicit knowledge through
articulation that new knowledge is created” (p. 626). For Quinlan, tacit knowledge was
conceived of as knowledge that is taken-for-granted, and like Nonaka and Takeuchi
(1995), Quinlan believes that “discussion is an effective mechanism for the articulation of
taken-for-granted, tacit knowledge” (p. 626).
This study’s findings are similar, but rather than limit the definition of knowledge
creation to the conversion of tacit knowledge, knowledge creation here included also the
articulation of privately-held observations and preferences. At the moment of articulation,
the observation or preference becomes meaningful in an inter-subjective sense
(Carspecken, 1996; Habermas, 2003), and the dialoging participants either have already,
or begin to work toward, a shared understanding of what should be done about this newly
shared and now co-constructed knowledge. If there exists no shared understanding of
what should be done, the participants explicitly invoke and otherwise convey subjective
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and objective claims in persuading the others to consent to his or her preferred way
forward. These negotiations entail both subtle and obvious exercises of power, and as
long as everyone affected by the negotiation is included in the dialogue, and as long as no
one is coerced into consenting to the final outcome, the negotiation meets the ideal
conditions for ethical discourse (Habermas, 2003). These power-laden criteria – of
inclusion and the lack of coercion – are what differentiate the three themes presented in
these findings, demarcating the conditions under which dialogic knowledge creation
occurs. What is helpful then is to consider how normative, coercive, and even charming
power shapes the dialogic exchanges that create knowledge among dementia caregivers.
Charming, normative, and coercive power can each contribute to both ethical and
unethical conditions of discourse. Normative power, for instance, can (re)produce
exclusion, such as the case when the registered nurse negated and devalued a PSW’s
articulation of knowledge. This confirms and helps explain the assertion made by Kontos,
Miller and Mitchell (2010) that information-sharing practices are often absent in longterm care homes, and illustrates what most people probably think of when they read of
organizational and institutional dynamics that manifest in interpersonal, yet often
hierarchical, relationships (Beard, 2008). In these divisive encounters, normative power
often colludes with coercive power to (re)produce the invalidation and devaluing of
others and/or their knowledge. Moreover, PSWs sometimes contributed themselves to the
reification of this divisive norm by maintaining a belief that such conditions were
inevitable and unchangeable. But normative power can also foster inclusiveness, as when
the RPN shared with the physician her reading of a resident. In this case, normative and
charming power complemented one another in the interaction to enable the sub-ordinate
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(RPN) to enact her valued role as nurse and to enable the physician to have access to her
observations-now-turned-knowledge. It is not that hierarchy or sub-ordination are
themselves problematic – when a hierarchical relationship fosters and maintains
inclusiveness and the freedom to share one’s input and questions, and when the
relationship is free of coercion, both the super- and the sub-ordinate can thrive by having
psycho-social and strategic goals met. The RPN was highly valued, her roles and identity
claims validated, and, strategically, she was afforded the opportunity to persuade the
physician to adjust the care plan of a particular resident for whom she felt concern.
Similarly, the physician was valued for his authority and ability to prescribe – his role
was validated – and strategically, he was able to care for the resident without having
exerted much time or effort; he was instead able to rely on his relationship with and the
judgment of the RPN.
This notion of validating identity claims and having a strategic purpose supports
the findings recently reported by Conklin (2009), who suggested that long-term care staff
members engage in meaning-making processes that create a sense of coherence and
purpose while allowing for the construction of individual and group identities; the
findings presented here show how social power is implicated in this creation of
coherence, purpose, and identity. Given that people generally use power for material,
strategic, or psycho-social interests (Carspecken, 1996, p. 143), it is plausible to suggest
from these findings that divisive and exclusionary knowledge creation practices stem
from positions of power that serve the super-ordinate’s own psycho-social interests (e.g.,
if their ego thrived on the control of others and/or the reinforcement of a higher social
standing) and/or strategic interests (e.g., if they were not inclined or able to find time to
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acknowledge, investigate, and/or document newly created knowledge about a particular
person with dementia). Likewise, it is equally plausible that in more inclusive and
democratic conditions, the co-constructors of the new dementia care knowledge serve
their shared strategic interests by advancing their collective understanding of a client or
resident and by subsequently revising their care plan. In a care culture that does not decentre the person with dementia, such strategic advancements presumably serve the
client/resident’s interests as well, not just the providers’. Thus, the ways in which one
wields social power might provide an indication of which of their own interests they are
serving.
Conklin (2009) also suggested that meaning-making among long-term care
providers serves to create and maintain the competence needed to complete tasks. The
findings presented here extend and further delineate this idea by showing that being
competent does not always equate to providing person-centred care. On one hand,
democratic and inclusive conditions for knowledge creation (such as when the RPN
worked through an assessment of depression with a recreational therapist) might indeed
be construed as a scenario where the competence of both care providers was enhanced to
subsequently benefit the resident. On the other hand, the development of competence to
bathe a resident was fueled by coercive expectations that matched neither the provider’s
own values nor the resident’s stated preferences – but the competent PSW gets the bath
done anyway. In this case, the creation of task competence is in service of the
organizational culture rather than the person with dementia, and the person with dementia
is de-centred as cultural norms for efficiency and routine override the espousal of personcentred values. As a response to the call made by Kontos et al. (2009) to examine the
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occupational identities of PSWs (and perhaps all LTC workers), this analysis shows that
social power manifests at the precise moments when occupational identities are
(re)formed – evidenced by the power-laden discourses that condition competence.
A final point of discussion regarding power in dialogic exchange points to the
significance of those formal mechanisms that create opportunities for knowledge creation
and sharing. Citing evidence that PSWs do indeed have the knowledge and interpretive
abilities (Kontos & Naglie, 2009; Anderson, Wendler, & Congdon, 1998) to influence
registered nurses (Anderson et al., 2005), Kontos et al. (2010) advocate that PSWs be
provided with a formal mechanism to enact a role of interprofessional knowledge broker.
Herein, interprofessional means to bridge PSWs’ knowledge of the clients and residents
they care for with the knowledge of registered nursing staff. As much as the conditioning
of professional identities and competence occurs in informal and sometimes in invisible
situations, this study also showed how social power might manifest within formal
mechanisms (such as the daily Talk to me meetings that the registered nursing staff
conducted with PSWs in the adult day program). Although fueled by a kind of normative
power that borders on coercive power, these daily nursing-PSW check-ins, scheduled for
a particular time and always following a similar format, seem to approximate what
Kontos and others seem to envision, especially as coercion dissipates and is replaced by a
normative power that both the nursing and personal support staff members (re)produce. It
should be noted though that despite caring for similar client/resident populations, the
SCU did not have a similar mechanism – these formalized check-ins were a part of the
ADP practice only. This difference was attributed primarily to human resources (a
system-level norm) – the SCU residents would be left unattended or with just one
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recreational therapist if all the nursing staff met at once. That is not to say the SCU was
void of communication: reports between shifts allowed registered staff to share updates
on the residents’ well being, and the RN or RPN would then pass on pertinent
information to the PSWs, but often in a much more fluid and unstructured way,
sometimes even as the PSW was walking away, about to begin his or her duties. In
contrast, the sit-down check-in meetings in the ADP were focused, void of distractions,
and offered a daily opportunity to re-frame task competence as more holistic care, as
person-centred care.
Implications
This critical examination of how different forms of social power envelop the
reading and interpretation of a person with dementia in long-term care and adult day care
settings forms a response to calls to better understand how organizational elements
enhance or impede the processes of knowledge exchange (Berta et al., 2005; Bostrom et
al., 2012; Moyle, 2010; Sullivan et al., 2004). Relevant to practice, education, and policy,
the following critical reflections are intended to spur critical reflection about dementia
care practices for those living or working in similar organizations.
First, providers and educators should be encouraged to (continue to) practice
enacting the notion of attunement – that is, reading and interpreting the embodied,
primordial, socio-cultural (Kontos, 2005) and familial elements of a person’s
communicative capacity as well as remaining aware of how one’s own affect (tone, body
language, pace of interaction) influences a person with dementia. A second insight to
leverage is re-cognition that among those caring for a particular person with dementia,
204
the knowledge they gain from experience and from being so well attuned needs to be
shared and exchanged such that other care givers can benefit too from this knowledge.
This is especially important as the dementia progresses and as a greater number of
caregivers become involved, and particularly as new relationships emerge between
unpaid, family caregivers and paid, program- and/or facility-based providers. Thirdly,
given the importance of developing and fostering a subjective state of inquisitiveness
among dementia caregivers, and given the negative impact coercive power has on
caregivers’ subjective state, care providers (super- and sub-ordinates alike) should
critically reflect on then discuss when, how, why, and with what effect coercive power is
deployed in dementia care planning. This would involve identifying situations where one
or more of the people affected by the care plan forces obedience through the threat of a
sanction and the care plan is subsequently carried out not because the sub-ordinate
consents to it but because s/he wants to avoid sanction (Carspecken, 1996, p. 130).
Lastly, with respect to fostering conditions of dialogic exchange that are
conducive to democratic co-construction of knowledge, family caregivers and paid care
planners alike should encourage the inclusion of all those who provide care and who are
affected by the care decisions, and allow for those affected to share their perspectives and
experiences as well as questions and concerns. This would require fostering in leaders
and in family caregivers an aptitude for soliciting and valuing others’ person-specific
dementia care knowledge, an aptitude that might be facilitated through the creation of
mechanisms for informal, on-the-floor knowledge exchange between and within staff
groups (i.e., both intra- and inter-disciplinary knowledge exchange), and by the
development of easily accessible reports that summarize familial history, likes and
205
dislikes, and socio-cultural information that can help caregivers contextualize their
interpretations of persons living with dementia.
The notion of fostering co-constructed knowledge among dementia care providers
points to a second set of study implications, ones that pertain to the field of dementiafocused knowledge translation and exchange. In re-conceiving the best possible ways in
which to implement selected evidence, Kitson et al. (2008) suggested that KT strategies
be deployed such that the diagnoses of an organizational context precedes the
development of a facilitation strategy; the KT intervention should be shaped and molded
by the information gathered during the assessment of context and, specifically, during the
assessment of the knowledge culture for which the evidence is relevant. Indeed, the very
constructs that Kitson et al. (1998) deem as central to culture – its capacity to learn, its
patient-centredness, its values – each of these, arguably, is moderated by the ways in
which social power manifests as normative, coercive, and/or charming power. Part of any
assessment of context should thus be attuned to power and its affect on how dementia
care knowledge is or is not freely solicited, shared, and valued. Subsequently, the
development of a (presumably more) context-sensitive facilitation strategy could then
target and recognize participants’ psychosocial interests, leverage existing charm and
normative powers (that are not coercive), and foster and leverage the ideal conditions for
ethical discourse (Habermas, 2003). Those developing and coordinating training and
education initiatives could enhance the impact of their work by integrating into dementia
curricula the means by which caregivers can both identify and discuss the ways in which
power is distributed across the local, cultural milieu.
206
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– Chapter Six –
Reconstructing (Responses to Responsive) Behaviors in Dementia Care
by Re-cognizing how Social Power Interacts with Tacit & Explicit Knowledge
Abstract
This critical ethnographic research study took place in two dementia care sites: a
specialized care unit (SCU) in a long-term care home, and, attached to the same building,
an affiliated adult day program (ADP) designed for people living in the community with
dementia. This article focuses on how SCU and ADP staff respond to clients’ and
residents’ responsive behaviors, and in particular how social power interacts with tacit
and explicit knowledge in the provision of dementia care. By examining routine care
practices that caregivers used to respond to responsive behaviors and the justification of
those practices, the analysis showed (i) that normative powers within the care site led to
the use of force being a regrettable but not uncommon care practice, and (ii) that
caregivers’ tacit knowledge proliferated through processes of knowledge externalization
and socialization. These findings suggest that when a dementia care organization can
uncover and leverage existing tacit knowledge and elevate that knowledge from an
individual to a team level – and make it accessible to care workers – discourses of
responsive behavior and personhood can flourish and the need to use force can be
mitigated.
Keywords: dementia, long-term care, context, culture, tacit knowledge, critical
qualitative research
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In accounting for the behaviors a person with dementia might exhibit – such as
pacing, verbal and/or physical aggression, repetitiveness, or resisting care (Gates,
Fitzwater, Telintelo, Succop, & Sommers, 2002; Myers, Kriebel, Karasek, Punnett, &
Wegman, 2005; Volicer, Van der Steen, & Frijters, 2009) – the dominant discourse has
been of a micro-level, biomedical realm (Dupuis, Weirsma & Loiselle, 2012). In this
view, “dysfunctional” or “compromised” behaviors act as a communicative device (Innes
& Jacques, 1998; Sabat & Harre, 1992) to convey an inability to cope with excessive
stress (Hall & Buckwalter, 1987) or to convey unmet, difficult to express needs (Algase
et al., 1996; Colling, 1999; Kovach et al., 2005; Stokes, 2000). Dupuis et al. point out
that although the impact of the built environment is recognized by some such
conceptualizations of dementia-related behavior, “broader social and political contexts
that shape human actions and serve to either enable or disable persons with dementia are
rarely considered” (p. 163). Instead, behaviors come to act as the means by which people
with dementia are labeled (as resisters, as wanderers, as aggressive) and, ultimately,
dehumanized insofar that they also objectified and categorized into stages of disease
progression; rather than be seen as people within their own right, such dehumanization
“results in the devaluing of the person, which wears down and damages self-esteem and
self-efficacy of those labeled” (Dupuis et al., 2012, p. 164), ultimately leading to
withdrawal from the social world as the deterioration of one’s well being is exacerbated
(Dupuis et al., 2012; Kitwood, 1997; Kontos, 2005).
An alternative discourse is the responsive behavior discourse, which “views all
actions as meaningful and moves us away from judging behaviors to understanding
meaning in actions and responses” (Dupuis et al., 2012, p. 170, emphasis in original).
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Herein, as Dupuis et al. explain it, notions of compromised dysfunction and decline are
replaced by a belief
in the continued abilities of persons with dementia to express their experiences
and act in purposeful, meaningful and even intentional ways [… yielding the]
opportunity to find new ways of connecting with persons with dementia in
understanding meaning in actions by being truly present, actively listening, and
recognizing that there are many ways for persons with dementia to communicate
their experiences, to be” (p. 170-171, emphasis in original).
For Dupuis et al., responsive dementia care is more about understanding actions beyond
the individual than it is about pathologizing, predicting and controlling behavior.
A number of scholars have examined the frequency and severity of the most
challenging responsive behaviors (Dupuis et al., 2012; Moore, Ozanne, Ames, & Dow,
2013; Morgan, Cammer, Stewart, Crossley, D’Arcy, Forbes, et al., 2012). Dupis et al.
reported that particular characteristics of the behavior(s) a person with dementia exhibits
determines “the level of challenge associated with specific behaviors. These
characteristics included the intentionality, predictability (or unpredictability), and
persistence of the behavior, how threatening the behavior was perceived, the social
appropriateness of the behavior, and the degree of impact on others of the behavior” (p.
168). At worst then, and regardless of whether it is perceived as symptomatic and/or as
communicative, caregivers might well feel affronted by persistent and intentional yet
unpredictable, threatening, inappropriate and harmful behavior.
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If the preferred discourse is that of responding sensitively to responsive behaviors
(Dupis et al., 2012, Kitwood, 1997; Kontos, 2005), what would empower caregivers to
maintain a therapeutic relationship with their clients in the face of such challenging
conditions, to understand actions beyond the individual? How and where does caregivers’
tacit and explicit knowledge function in responding to responsive behaviors? How does
social power interact with this knowledge to affect routine dementia care practices? This
article addresses these questions in order to gain a better understanding of how the culture
of dementia care knowledge shapes advanced dementia care practices.
On tacit and explicit knowledge translation.
Knowledge is said to be tacit when it cannot be explicitly articulated (Polanyi,
1966), when the body knows what to do without deliberation or forethought (Benner,
1984), and, from a caregiving perspective, when care knowledge “is assimilated as bodily
knowing” (Carlsson et al, in Kontos & Naglie, 2009, p. 689). Kontos and Naglie contend
that such conceptualizations of tacit knowledge should not neglect “the primordial and
socio-cultural significance of the body” (2009, p. 689) and suggest that such tacit
knowledge is evident in the power of gesture and the pre-reflective co-ordination of
visual, tactile, and motor aspects of our body. This was shown by Kontos (2005) to
resemble a key element of a person with dementia’s communicative capacity, or what
Carspecken (1996) and Habermas (2003) might otherwise call the non-discursive
communicative action that enables inter-subjective recognition of meaning.
Indeed, the relationship between tacit knowledge and communication is
significant (Nonaka, 1994; Quinlan 2009). Following Nonaka, Quinlan highlighted the
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role of communication in gaining access to tacit know-how by showing that the dialogic
exchange that comprises a care team’s collective clinical decision-making facilitates the
articulation of tacit knowledge “and thereby opens up the potential for creation of new,
communicatively achieved knowledge” (Quinlan, 2009, p. 638). Nonaka described such a
process as the ‘externalization’ of tacit knowledge, enabled by team members’ attempts
to articulate their lived work experiences. Communicative action also drives the process
of ‘internalization,’ which entails the conversion of explicit and codified knowledge
(often print and curricula) into one’s knowledge base; in this case, the communicative
action relates the learning processes and inter-subjective interactions that occur in
educational settings to relevance – the internalization of information as knowledge occurs
when the information can be related to the action(s) required to perform the job. As a
third form of knowledge generation driven by communicative action, socialization is said
to occur when tacit knowledge is shared and spread as tacit knowledge throughout an
organization, often without language per se – rather, tacit knowledge is socialized much
as an apprentice learns through shared experience (Nonaka, 1994).
While Nonaka (1994) posited that these processes are among those that condition
the development of new knowledge among individuals, his aim was to conceive of a
theory that conceives of these “patterns of interaction” as inter-related and as resulting in
the creation of organizational learning. At an individual level, Nonaka understood that
people are driven by a commitment to recreate the world in accordance with their own
perspectives and by an intention to acquire knowledge for their own betterment (which
necessarily introduces into knowledge creation the notion of value judgment – knowing
and understanding occur in the context of purposeful activity). Moreover, individuals
219
enjoy a certain amount of autonomy to absorb knowledge, and can take into account the
ambiguity and randomness of their own context as they create, impart, and absorb
knowledge. But as they engage in these knowledge creation processes within a social
ontology, wherein organizational beliefs and practices become collectively justified as
normative, socialization, internalization, and externalization become involved in a spiral
of organizational knowledge creation. So while individuals develop new knowledge,
organizations play a significant role in articulating and “amplifying” that knowledge
(Nonaka, 1994, p. 14). Thus, Nonaka cautions that we must not over-emphasize the
processes of internalization (the conversion of explicit to tacit knowledge) at the expense
of understanding how tacit knowledge is externalized and spread through socialization;
rather, to understand organizational knowledge creation, the interplay of each pattern of
knowledge interaction needs to be understood so that the knowledge can become
concerted in redressing the particular problems to be solved in a given context.
For the purpose of building upon and applying this theory of knowledge creation
(Nonaka, 1994) to the field of advanced dementia care and in particular to caregivers
seeking to understand (rather than control) responsive behaviors, two assertions are
warranted. The first is that we have available an evolved, four-pronged conceptualization
of what tacit knowledge is insofar that: tacit knowledge is indeed difficult to articulate
(Polanyi, 1966); as it precedes conscious effort, it is pre-reflexive even while it drives the
body’s actions and movements (Benner, 1984), thus entailing a primordial and embodied
(rather than cognitive) consciousness that is shaped by socio-cultural inclinations over
which an individual has no conscious mastery (Kontos & Naglie, 2009); and, as Nonaka
sees it, tacit knowledge includes a realm of mental models, schema and beliefs upon
220
which we structure our cognition as well as more technical know-how and craft-skill,
even if that remains difficult to articulate and pre-reflexive. The second assertion that
relates knowledge creation to caring for someone with responsive behaviors is that we
ought to strive to give renewed primacy to tacit knowledge first by understanding how it
works at an individual level within the context of dementia care, then by examining those
processes of knowledge conversion and knowledge sharing within the power-laden
organizational culture where dementia care occurs. As such, this study endeavored to
contribute to understanding (in Nonakian terms) how the externalization, internalization
and socialization of tacitly held dementia care knowledge interacts with social and
organizational power.
Methodology
A critical qualitative research design (Carspecken, 1996) guided and infused this
study with insights derived from a Habermasian worldview. In the analysis of
ethnographic data that featured ADP and SCU staff and family members interacting and
caring with clients and residents, primacy was given to participants’ inter-subjective,
communicative action, and to examining the conditions under which truth claims are
generated. In this view, rather than being understood in a transcendent sense, truth is
understood in terms of its function: to generate unconditional acceptance of particular
claims (Carspecken, 1996; Habermas, 2003), an epistemological view that resonates with
Nonaka’s view (1994, p. 15) that knowledge is a “dynamic human process of justifying
personal beliefs as part of an aspiration for the ‘truth.’” In this view, truth is seen to entail
communicative negotiation – both verbal and non-discursive – the aim of the analysis
221
was to reconstruct the communicative actions that inhere in meaningful social
interactions so as to bring to the fore implicitly conveyed objective, subjective, and
normative claims. Normative claims were of particular interest as these are the claims
that govern what should occur and what behavior is appropriate within a particular
situation, and are thus highly representative of a given culture (Carspecken, 1996). By
reconstructing the objective, subjective, and normative claims of a meaningful
interaction, and by reconstructing the social power(s) invoked to justify those claims, one
can come to understand how a particular culture produces social, practical knowledge
about what is true and what is right (Habermas, 2003). Nonaka’s theory of knowledge
creation serves to hone this analysis by tracing the iterative ‘spiraling’ that occurs
between tacit and explicit knowledge.
Ethical considerations.
The Research Ethics Board at Western University approved this study.
Organization leaders circulated their own internal memo to let potential participants (staff
members, families, residents of the long-term care home, and clients of the adult day
program) know that the study was being conducted. On days when data were being
collected, notices were posted on the doors into the research site and the care areas to
inform anyone entering about the study, its aims, and who to contact for further
information. Those who enrolled in the study provided written consent to be observed
and/or to participate in audio-recorded interviews, and to allow use of anonymous data
for analysis, interpretation, and dissemination. Accordingly, all re-presentations of the
data preserve participants’ anonymity and privacy. Residents and clients who enrolled did
222
so with the written consent of their substitute decision makers, a procedure deemed
necessary given their diagnoses of dementia, which in many cases was quite advanced.
Participant recruitment.
The majority of staff members were recruited in small groups during the first four
field visits. Thereafter, when I encountered any staff members who had not been
recruited, I notified them about the study, offered a letter of invitation, and invited their
participation. Residents of the long-term care home and their family members were
recruited with the assistance of a registered nursing staff member, who approached
potential recruits on my behalf to offer them a brief overview of the study and to invite
them to consent to receiving a letter of information and to consider enrolling. Clients of
the adult day program and their family members, meanwhile, received a letter of
information and a consent form via mail; those willing to enroll subsequently returned
their signed consent form to the program secretary. All participants were assured that
participation was voluntary, and that declining to enroll would have no consequence on
the care they received or their status as an employee.
Data collection.
This critical qualitative research study took place in two dementia care sites: a
specialized care unit (SCU) in a long-term care home, and affiliated adult day program
(ADP) designed for people living in the community with dementia. Data were collected
over a period of nine months that included 34 field visits for the purpose of observing
participants (146 hours in total), plus an additional 11 field visits for the purpose of
223
conducting 12 in-depth and 12 member-checking interviews and a focus group. Data
collection began with a period of non-participant observation conducted in the common
areas of the SCU and, in some cases, in residents’ rooms, and in the three activity rooms
and two staff workrooms of the ADP. Any verbal interactions that occurred with study
participants during this stage were usually just cordial, although I did occasionally seek
clarification about the provision, receipt, and/or negotiation of routine care practices; on
11 such occasions, my informal conversation with a care provider was audio-recorded
with permission. On 10 separate occasions, dialogic exchanges between care providers
were recorded with permission. The observation phase also included collecting
documents and other discursive tools or information sharing mechanisms (e.g., admission
forms, communication books, notices posted in staff work areas).
Subsequently, these observation data were subjected to preliminary analysis so as
to generate interview topics that addressed actions that seemed fundamentally related to
dementia care knowledge. Topics included the notion of appropriateness in dementia
care, flexibility in work rules and routines, meal time routines, having to sometimes use
force to provide care, and the notion of educating families and/or managing their
expectations. Ultimately, the intent of the interview phase was to have participants
describe in their own words issues related to dementia care and its related actions and
routines. A more detailed description of how interview topics evolved and of the data
analysis techniques is provided elsewhere – see Chapter Four; briefly though, the primary
techniques for data analysis are described next.
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Data analysis.
Carspecken (1996) broadly conceives of his critical qualitative analysis as
hermeneutic reconstructive analysis. Hermeneutic analysis refers to meaning making and
specifically to the cyclic process of circling between partial and whole understanding
such that data that were initially perceived in a holistic and undifferentiated fashion were
delineated into the elements that together comprise the making and interpretation of
meaning in social events. Reconstructive analysis refers to the articulation of implied
meanings and implied claims, which is presupposed by the assumption that meaningful
social interactions include a range of backgrounded and foregrounded claims. Moreover
and following Habermas (2003), the kinds of claims people make were categorized into
three ontological categories: objective claims that are defined by a principle of multiple
access – two or more observers would agree on how an observed event transpired;
subjective claims that are defined by a principle of single access – only the person in
question can know for sure what his or her own feelings, desires, and intentions are; and
normative claims that serve as an indication of how people should act in a given situation.
By reconstructing these three kinds of claims, as well as the non-discursive
communicative context in which the claims are made, hermeneutic reconstructive
analysis yields insight into the culture of a particular group of people (Carspecken, 1996)
– in this case, those living and working in a long-term dementia care environment.
Rigour.
The rigour of this study was established in terms of epistemological coherence
(Holloway & Todres, 2003), and, following the theoretical methodology set out by
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Carspecken (1996). Regarding coherence, Holloway and Todres suggest that a study’s
methodology, methods, analysis, and knowledge claims all ought to align or “hang
together” with its underlying worldview and, accordingly, its aims. As a critical
qualitative research project (Carspecken, 1996), this study aimed to better understand the
culture of dementia care knowledge and specifically the influence of social power in
terms of knowledge creation, sharing, and application.
In addition to striving for coherence (Holloway & Todres, 2003), a variety of
strategies were used to ensure methodological rigour (Carspecken, 1996). First,
prolonged immersion in the research sites and a period of non-participant observation
preceded dialogic data collection – 34 field visits for observation were conducted before
the 12 topic-driven and 12 member-checking interviews were conducted. This allowed
me to gain a sense of what the social and care routines entailed and to begin to generate
topics for subsequent interviews. Second, a flexible data collection schedule allowed for
observation and exploration of all care routines related to dementia care – field visits took
place during day and evening shifts and across all seven days of the week. Third, I used
multiple data collection methods: observation of clients and residents, visiting family
members, and program/unit staff; formal and informal in-depth interviews; memberchecking; and analysis of organizational documents. This enabled me to compare data
from various data sources, particularly interview data with observation data. Fourth,
member-checking helped to democratize the interpretive analysis by giving participants
an opportunity to validate and/or refine analysis, and to share new insights. Fifth, the use
of non-leading questions during interviews and a tendency toward limiting responses to
low-level inferences were strategies intended to mitigate the risk of a social response bias
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and to facilitate participants’ use of their own words and ideas to discuss particular
topics. Sixth, the examination of apparent abnormalities to routine care practices (i.e.,
negative case analysis) provided a means by which to validate or refine reconstructions.
Finally, peer debriefing with other researchers (advisors and colleagues) helped to check
for biases or absences in the data reconstructions. I kept a diary-style record of 15 such
debriefings, held with four different researchers throughout the data collection and
analysis periods. As a result of these debriefings bringing to my attention new or
alternative analytic angles, I was better able to consider fully, and, in turn, to justify my
analytic decisions.
Sample.
Between the two affiliated sites, a total of 139 participants enrolled in the study,
including 71 point-of-care staff, 12 members of the senior leadership team, and 56 nonstaff participants. Among these 56 were six SCU residents and seven of their family
members, as well as 42 ADP clients and one additional family member. Most of the
point-of-care participants were female, and most were personal support workers (PSWs;
n = 39) or recreational therapists (n = 9). Also included were registered nurses (RN; n =
4) and registered practical nurses (RPN; n = 7), a nurse practitioner, two physicians,
dieticians, physiotherapists, and housekeepers, and three social workers. Aside from three
of the RPNs and about half of the PSWs, the enrolled staff members worked full-time.
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Findings
The findings that follow are organized into two broad sections, the first of which
describes what responsive behaviors were observed and how staff members responded to
these responsive behaviors. It should be noted that while staff members often looked to
family members for advice or to notify them about changes in psycho-social function,
family members were rarely present when responsive behaviors manifested, hence the
focus on staff members’ responses. As one of these responses entailed the use of force in
assisting with activities of daily living, the first section concludes with an account of how
and why the staff members justified the use of force and how family members made
sense of this practice. The second section sorts staff members’ other, non-forceful
responses to responsive behaviors into categories that illustrate how knowledge is
internalized, externalized, and socialized (Nonaka, 1994), and how these individuallylocated knowledge creation processes interact with social power to create organizational
dementia care knowledge.
Observed responsive behaviors.
During the observation phase of this study, it was common to observe clients in
the ADP and residents in the SCU pacing, seeming anxious or agitated, and sometimes
becoming verbally or physically aggressive. One PSW remarked that physical aggression
was not at all uncommon:
… it happens a lot, like I’ve been hit, scratched, gone home with black eyes. [That
male resident] right there, he’s one that you have to be careful with – like he
won’t just swing at you, he’ll get you in a head lock and beat on you, yeah.
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During another field visit, I witnessed a female resident punch another female resident in
the chest, and later push an RPN hard enough to cause her to lose her balance and fall to
the ground. Such physical aggression was described by PSWs as something “you just
take,” a notion returned to further below. Other instances of responsive behaviors
observed during the initial field visits include:
A male SCU resident leaned against the desk at the nurses’ station, stooped over
with his head on the counter, sobbing quietly, straightening slightly only to hit
himself in the head several times with open palms. He did this for extended
periods of time, for days in a row.
Several different SCU residents and ADP clients often walked to a locked door
and tried to open it and/or to figure out the keypad code beside the door, a
behavior staff often referred to as “exit-seeking.”
A male ADP client infringed on others’ space, standing within inches, smiling and
seeming to hope for some form of social engagement, but he usually had the
effect of affronting the other client(s) and seeming to thus trigger agitation and
sometimes aggression.
More frequently in the SCU than the ADP, residents resisted care providers’
efforts to assist with ADLs, resistance that variably manifested as verbal refusal,
pulling away from the caregiver (usually a PSW), lashing out verbally or
physically.
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Several ADP clients had to be reassured and convinced that they were supposed
to be there that day, and that they would be going home.
A female resident asked a caregiver about every minute to speak with her own
(known to be deceased) mother; another asked just as often why she had not been
fed supper (when she had just recently eaten).
A male ADP client disrupted large group programs by dominating the
conversation and/or belittling others’ participation.
While some residents/clients were inclined to pace (in circles around an atrium or
up and down hallways), others wandered into others’ rooms to fiddle with or
collect others’ belongings; such behavior was often referred to as “hoarding,”
sometimes as “collecting.”
Collecting. Dominating. Needing. Seeking. Refusing. Engaging. Exiting. Sobbing.
Striking. Viewed through a lens of responsive behavior (Dupuis et al., 2012), the
behaviors I observed can be (re)cast as actions and as purposeful and meaningful
expressions that deserve (or perhaps command) the opportunity for interaction. And
indeed, staff caregivers met such behaviors with myriad forms of interaction, the range of
which is described next.
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Staff members’ responses to responsive behaviors.
Staff members employed a variety of care practices in responding to these
responsive behaviors. An initial response was to approach the person in an appropriately
gentle way so as to not exacerbate or trigger any further responsive behavior. While this
was not presumed to be a guaranteed way of preventing responsive behavior, it was
understood that approaching clients/residents in a rushed, gruff, or insensitive way was
likely to trigger or exacerbate responsive behaviors. A gentle approach, in contrast, was
presumed to afford opportunity to try to understand what was causing the behavior.
While this was sometimes confined to a pathological, disease-based investigation or
query, thus resulting, perhaps, in an adjustment to the person’s medication, it often also
included more holistic and socio-cultural investigation, particularly among the full-time
registered nursing staff, and within the ADP. Such investigations often included an
element of trying to find meaningful activities with which to engage the person with
dementia – music, books or magazines, arts or crafts – something of interest that was
specific to the person’s past. By providing staff members with insight into the client or
resident’s preferences and personal and/or professional past, family members often
played a significant role in such investigations when they were able, willing, and
available.
The provision of meaningful social engagement and activities was close in nature
to what was otherwise referred to as a re-direct: re-directing the person with dementia’s
attention away from anything that might have been causing a responsive behavior, or
cueing their attention toward a more therapeutic activity. Such practices (cueing, redirecting) were better resourced in the ADP than in the SCU – the ADP was considered a
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recreation program and, accordingly, was staffed with at least five recreational therapists
per day to serve its 60 or so clients, whereas the SCU featured only one recreational
therapist to serve its 32 residents.
Another response to responsive behaviors, oftentimes, was for staff members to
let the person be, thereby passively validating (or perhaps, sometimes, ignoring) the
person with dementia in his or her own present moment. At other times, albeit less
frequently on account of having limited time, staff members engaged in “validation
therapy” to dialogically validate the person in his or her present moment. Reassuring in
nature, this entailed saying or doing something that was quite often unrealistic – a
reflection of validation therapy being conceived of as a practice opposite to “reality
orientation” – and thus included responses such as writing a fake bus ticket for someone,
giving someone a phone book so they could look for their family (often a parent’s) phone
number, cordially repeating oneself in light of a resident or client’s impaired short-term
memory, or simply asking questions and talking about whatever issue seemed to be
upsetting or interesting the client or resident.
As with any inter-subjective negotiation of a meaningful moment, common in
these staff members’ responses was the presence of power, which typically manifested as
persuasion, and sometimes as force. To persuade, caregivers used charm (i.e., endearing
oneself to another with terms of endearment, humor, compliments), invoked norms about
(in)appropriateness (It’s time for …; That’s not how we treat one another here) and/or
negotiated with contractual power (If you … then I’ll …). In cases when efforts to
persuade failed, the use of physical force was not an uncommon response to responsive
behaviors. This coercive power served to restrain or isolate a person, either to complete
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ADL tasks and/or to mitigate the risk of others being harmed. Together, these
approaches, treatments, investigations, validations, persuasions and coercions formed a
repertoire of “whatever works.”
Struck by the remarkable ethical dilemma that seems to inhere in using force, I
describe next how and why force was so readily justified in the provision of care.
Thereafter, the focus of the findings and the subsequent discussion turns to how
knowledge about responding to responsive behaviors manifested in these dementia care
sites, thereby disclosing caregivers’ variable (in)ability to interpret and contextualize the
behaviors to which they were responding while also shedding light on knowledge
conversion processes and the manifestation of a care team’s collective knowledge.
On the use of force.
Regarding the use of force, PSWs often expressed concern about this, fearing
reprimand either from family members or from a government official. One PSW’s
comment seemed to imply that rather than be accused of being abusive, PSWs might,
sometimes, just not provide the care.
Yeah, with [a particular female resident], if we tried to clean her mouth out and
take her teeth out, it's going to take 2 or 3 people, so when the Ministry stands there
and sees us they'll just think that we’re being abusive.
Upon asking one of the PSWs’ managers about this concern, she acknowledged the
worrisome nature of the practice and that one of the quality improvement initiatives
under way in the home was about oral care. She also indicated that with advanced
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dementia, sometimes using force is necessary, and families understand and condone the
practice:
I find that as long as you have family on board - because the thing is, families
know. Families on [the SCU] are very well - most of them - well educated. And all
I find is you have to say to them, you know, we’re having difficulty on bath days
and if you can come, great. If you can’t, he hasn’t had a bath in a week and we
really need to get him in the tub. And this is what we’re going to do. And families
will say do whatever you have to. They know we’re not hurting them. He’s just
standing in the shower yelling. We’re not hurting him. But you need to have the
families understand and I think as long as the families understand that we’re not
abusing them, then I think we’re okay. You can’t just ignore [residents’ ADL
needs] - I mean if you want to have no force, then don’t bother bringing them into
long-term care because we can’t provide the care that you’re wanting.
Attributed to objectively referenced claims (that the SCU residents had a
diminished capacity to complete their own ADLs and that without such forceful care, the
residents would languish), this manager’s normative claim was that the ADL care should
get done, even if by force, so long as the residents were not physically hurt during the
encounter. In the day-to-day provision of ADL care, this ‘getting it done’ norm was more
prominent and more relevant to the work of the PSWs than the other norm at play to
understand and contextualize the responsive behaviors so as to prevent them in the first
place. Consequently, using force in response to responsive behaviors was a norm unto
itself. A PSW described her encounters with a particular male resident,
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… he’s changing, he is a two person, one person could do him before, but he is so
strong, he is a two person most of the time. I’m mean you’ve seen us pushing him
down the hall like this [she held her arms out in front of her, locked straight; I had
indeed seen her pushing this male resident just so, his rigid body leaning back
heavily against her open palms] … how horribly degrading is that for a person?
But sometimes it is the only way we can get him down there, otherwise you wait
half an hour. Sorry, we don’t have half an hour to wait for you to get from that
end of the hall to get down to the lunchroom to eat.
In characterizing this encounter as degrading, the PSW subtly conveyed a subjective
claim that she did not like having to literally push this resident, as well as a backgrounded
normative claim that indicates that under ideal conditions, the resident should be allowed
to take all the time he needs to come to lunch, and any persuasion needed to bring him
along should not involve the use of force. The backgrounded objective claim, though,
seemed to convey that these current work conditions were not ideal.
While that particular resident’s resistance was not aggressive, others’ resistance
was and it seemed as though staff should expect and tolerate residents’ physical
aggression; a member of the senior leadership team commented,
… the staff take a lot here as you probably noticed – it’s when aggression goes
resident to resident that a person is “Formed” and discharged to an acute
psychiatric unit, and on not just a mishap, but regular basis.
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This manager’s point was that resident-to-staff aggression does not warrant discharging a
resident to a mental health facility. Rather, the aggression is documented and flagged for
further investigation, but meanwhile, when “you have to get the care done,” the cultural
norm was for staff to do whatever it takes, including tolerate physical aggression and to
engage themselves in aggressive behaviour.
When the topic of physical altercations between residents and staff was raised
with another higher-ranking member of the senior leadership team, her response
reiterated a protocol to “document and discuss,” and for staff to re-approach rather than
use force, “to continue to go back.” But when that sentiment was subsequently raised
with a PSW and the notion of “re-approach re-approach re-approach” was offered for
consideration, the PSW responded by saying,
Yeah and we do [re-approach], but I can’t leave them with poop all the way up
the back, I can’t do that, you know? And this has happened, that they’ve had poop
running down their legs, so what are you supposed to do, just say Oh, you know-you approach them and they’ll fight, yeah like [one particular female resident],
she’ll fight like a man, like she takes three people. So you’re going to have
residents’ families around and poop’s coming out down their leg and it’s up her
back too-- you just ask her and she says no and she’s very strong-- so you’re
going to say okay we’ll re-approach her? Like I can’t do that.
Reconstructed power in the justification of using force.
Examining this sequence of quotes on the use of force in terms of the objective,
subjective, and normative claims being made illuminated the various roles enacted in this
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kind of response to responsive behavior, and how staff members justified the use of force.
Backgrounded and objectively referenced claims indicate that despite gently and calmly
re-approaching a person with advanced dementia one or two or sometimes several times,
there are some who will still refuse and resist care, hence the foregrounded claim that in
order to complete the care, sometimes two or three caregivers must work together to
force (without harm) the person to allow for care to be provided. The subjectively held
concern though is that such care can appear abusive. As such, and given the power of
family and government inspectors alike to put into motion disciplinary measures to
mitigate abusive care, staff members conveyed a backgrounded preference to not want to
use force.
Intertwined with these objective and subjective claims are the normative claims
that characterize the use of force in dementia care: the forefronted claims that staff should
not harm care recipients, who themselves should not be left to languish unkempt or dirty
(or unfed), and the related yet backgrounded normative claims that yes, staff members
should re-approach those who resist care, but after a reasonable amount of time or when
someone is really dirty, and rather than leaving the care work for someone on the next
shift, the staff should do whatever it takes to assist with ADLs. Moreover, the claim is
made that families should be “on board” with this practice, and as long as they
understand that no harm is intended and that the care is necessary, families should expect
this care practice to occur. Staff members (and PSWs in particular) thus enacted two
particular roles in these moments when force entered into care practices: the paternalistic
caregiver who was doing this for the good of the person with dementia, and s/he who
prevents harm. When charming persuasion failed, these roles were fueled by normative
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powers that stipulate that a person’s hygiene care (and other ADLs) should be completed,
and that it is the work of PSWs – and of long-term care homes – to perform such care,
even if the performance ultimately manifests as coercively overpowering and physically
restraining the person with dementia.
Data from the SCU participants offer a sense of family members’ sense-making of
this practice and suggest that family members were usually of one of two minds: either
they found such a practice abhorrent and non-condonable, or they were in agreement with
what the senior manager conveyed in the quote above – that is, they understand that
despite the resident’s protests and resistance, he or she is not being harmed and the care
must be provided. These categorizations, if you will, of family members’ sense-making
were further sub-divided by a split in how frequently family members visited. Some were
frequent visitors, that is, daily or almost daily visitors, sometimes referred to by staff as
the “20-80s” – 20% of families are here 80% of the time; other family members visited
weekly; others still hardly at all. The intersection between family members’ frequency of
visits and their view of the use of force shaped staff members’ care practices insofar that
frequent visitors who did not condone the use of force attributed their continued presence
to a need to mitigate the risk that staff would use force on their loved one. A spouse of a
male resident with Pick’s disease described her sense of what would go on were she not
there to provide her husband’s care herself:
If I'm not here and on it all the time, then he's not been changed. He doesn't get
the right product on. They feed him in like 10 seconds flat. You know, like a
machine. [She mimics rapid spoon-feeding]. He's just left on his own to walk
wherever. Because of his disease, he needs a one on one. He won't sit in that
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circle. And he won't sit in and have to do a puzzle by himself too much. He
wants somebody to be with him all the time.
This family member dealt with her concern about neglect and about forceful, machinelike care by being a ‘20-80.’ The corollary of such a mitigating practice is that the
majority of residents did not have such frequently visiting family members; they were
thus subject to staff members’ routine care practices, including the use of force.
Despite the apparent frequency and normalcy of interactions involving the use of
force, it was also clear in this study that using physical force was not a default practice;
rather, staff members did endeavor to contextualize and interpret responsive behaviors,
and to leverage their dementia care knowledge – be that general or person-specific – to
respond to responsive behaviors in a more therapeutic, less forceful way. To examine
how such practices are conceived and justified, what follows is an explication of how
social power manifested in the externalization, internalization, and especially in the
socialization of dementia care knowledge.
Externalizing knowledge to contextualize responsive behaviors.
Family members’ knowledge of their loved ones played a significant role in
enabling staff members to better contextualize any responsive behaviors. To externalize
this knowledge, various intake and assessment forms solicited from family members their
tacitly held knowledge about dementia care. For example, the ADP developed a four
page form for families to complete and send in with clients staying for their first weekend
stay (in which case the client would attend the Friday and Monday programs, but also
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stay the entire weekend; the activity rooms were fitted with Murphy beds and temporary
walls so as to create separate ‘bedrooms’). The first two pages of the form offered a
number of strategies that family members could use “to ease our guests into the process,”
including encouragement to send in a brief, hand-written “comfort letter” to reassure the
client that they will be returning home after their short visit. Pages three and four though
were designed to solicit from family members care knowledge that staff members could
use during the stay, including descriptions of morning and bedtime routines, indications
of what the person’s usual mood was at different times of the day, and what “comfort
measures and other helpful suggestions” family members might have to address, for
instance, “night time wakefulness.” As this knowledge derived from family members was
of a personal nature, deeply rooted in their own specific context of cultural particularities,
it was of a tacit nature (Kontos & Naglie, 2009; Nonaka, 1994). By filling out this form
and by otherwise participating in the admission process, family members began to engage
in externalizing tacitly held knowledge about dementia care in terms of the know-how
and caregiving skills they had learned to apply within their own particular context, that is
in caring for their loved one.
Moreover, the family members who shared their knowledge – either in an intake
form such as this or verbally – shared knowledge that they expected to be shared and
used; in Nonakian terms, family members expected the knowledge they shared to be first
internalized by one or more staff members, then, as that knowledge became assimilated
and tacitly held, to be spread among the staff through processes of knowledge
socialization. While the intake form from this particular example provided a mechanism
that had the potential to work well, an RPN who described the form qualified its benefits:
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It is very helpful in that it’s the first thing I read when I come in, but, on
subsequent weekends, if the RPN who’s on hasn’t cared for the client before, they
might not easily find or read this info – then things can get missed. And of course,
families vary in how much info they provide: some will write a book, others, not
so much.
This RPN’s quote offers three insights. First, that the information collected on the form
was relevant enough to be “helpful” such that, presumably, it was internalized as actionable knowledge that could help the RPN support the client during his/her weekend stay.
Second, that family members’ externalization of dementia care knowledge was
sometimes not fully achieved via an assessment or intake form – some family members
provide sufficiently useful, relevant, and particular information, others “not so much.” A
third insight from this quote relates to if and how the knowledge was subsequently
internalized by other team members, a point I return to below in the section on
internalization.
Another example of externalized knowledge included staff members’ completion
of standardized assessment forms that required a judgment of psychosocial functioning.
An item querying social engagement, for example, required the nurse or recreational
therapist to render a tacitly held account of the person with dementia’s social engagement
– gained by experience and observation – into an explicit account or, more often, a
quantification. In cases where these externalized data were entered into the suite of
Resident Assessment Instrument (RAI) tools, the data contributed to the formulation of
RAI-generated RAPs (resident assessment protocols), which cued the registered nursing
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staff to further assess the person with dementia and to update their care plan accordingly.
As such, the RAI tools were an actor of sorts in the dementia knowledge work – the RAI
algorithms transformed, coordinated, and processed the externalized knowledge as
information such that when a particular threshold was reached, staff were triggered to act.
The RAI tools thus served as a mechanism by which knowledge derived from an
individual level was transformed into a different form of codified, explicit knowledge,
then made available at a team level.
Reconstructed power in the justification of externalization dementia care
knowledge.
In soliciting knowledge relevant to the care of a person with dementia, intake and
assessment processes and forms played a significant role in externalizing tacitly held
dementia care knowledge. And despite the variable quality and quantity of data, and
despite the barriers to accessing the knowledge after it was externalized, these forms
(re)produced a cultural norm to solicit and make available to others care knowledge that
was relevant to formulating therapeutic responses to responsive behavior. Backgrounded
behind this norm was a second set of norms, which stipulated that standardized intake
and assessment procedures should serve this function of solicitation of family members’
tacitly held knowledge, and that families should comply in providing this information. In
tandem, these norms (to use standardized intake and assessment forms, to
solicit/explicate and share tacitly-held knowledge) were driven by a normative discourse
that espouses standardized assessment, and by a kind of coercive power that stipulated
non-compliance with the completion of such standardized assessment would result in
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sanctions: a point-of-care provider could be ‘written up’ for poor job performance, and/or
the organization could face reduced funding for not adequately assessing and
documenting care needs. That said, and insofar that these normative and coercive powers
“worked” in justifying the externalization of knowledge, the now-externalized knowledge
needed to subsequently become internalized.
Internalizing knowledge to contextualize responsive behaviors.
As indicated above, among the dementia knowledge to be internalized was that
which had been externalized either at admission or when the person with dementia was at
an earlier stage of his/her journey through dementia care services. (Several of the SCU
residents had formerly been clients in the affiliated ADP). Thus, the explicit and codified
knowledge to be internalized typically related to diagnoses, medical and social histories,
likes and dislikes, and strategies to comfort and care for the person. Some family
members also prepared for the staff a photo album or a scrapbook filled with memorabilia
signifying the person with dementia’s familial and socio-historical past. While this
knowledge was available to be reviewed and, ideally, internalized by staff members who
were enacting an intentional commitment to enhance their knowledge and understanding
of the person(s) they cared for, heavy workloads and time constraints often precluded this
from happening. Recognizing this problem, a recreational therapist from the SCU
explained how even a short summary of the client- or resident-specific knowledge would
be helpful, especially for the PSWs who do so much of the hands-on care:
It would be nice to have like a little– like a short, point form information on each
resident. We’re working on doing like a scrapbook and I would put that page in
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each resident room and it would just say like you know, where they were born,
the names of their kids, what they did for an occupation, just so that you know,
when the PSWs are in there – cause realistically time is a major factor of course,
we all use our time differently too, and organize our time – but that way they
would at least have some key words and again, if we had consistent staff, that
could be really, really helpful. But we’ll see. [One of the RPNs] and I are
working on it.
In lieu of having a family-prepared summary or scrapbook about a particular
resident or client, staff members relied instead on pre-existing documentation as a source
of person-specific knowledge to internalize. Job responsibilities and positional status
meant that registered nursing staff and recreational therapists had more opportunity to
access and internalize such pre-existing knowledge, whereas PSWs had significantly less
opportunity to do so. And even among the nursing and recreation staff, time constraints
and a heavy workload often resulted in the under-utilization of this pre-existing
knowledge, thus precluding the possibility of individually derived knowledge from
becoming team-level knowledge. As in the example above regarding the intake form for
weekend stays – recall the RPN indicated that “on subsequent weekends, if the RPN
who’s on hasn’t cared for the client before, they might not easily find or read this info,
then things can get missed” – this shows that whatever knowledge was externalized was
sometimes difficult to access and review, in which case the person-specific knowledge
could not be internalized by staff. This points to the interface between individual and
team-level knowledge: unless sufficient mechanisms and relationships are in place to
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facilitate the sharing of family members’ newly externalized dementia care knowledge,
that knowledge becomes relegated to information on a piece of paper, not care
knowledge.
While family members and intake forms generated and availed a significant
amount of person-specific dementia care knowledge to the care teams, the organization
that the SCU and ADP were a part of also supported and enabled its staff to participate in
two regional dementia training programs – Putting the P.I.E.C.E.S. Together
(P.I.E.C.E.S. Canada, 2008), and the Gentle Persuasive Approach (Schindel-Martin &
Dupuis, 2005). These training sessions provided additional opportunity to staff members
to internalize dementia care knowledge as it relates to personhood. In both the SCU and
the ADP, registered nursing and recreation staff members were nearly all “PIECES
trained,” the majority of PSWs were “GPA trained,” and plans were afoot to ensure all
staff received this training and regular refresher courses. It was evident that the codified
and explicit dementia care knowledge of these curricula had been internalized by some as
routine dementia care knowledge and practice (i.e., as tacit knowledge). Reflecting on
what it was like to try to care for physically aggressive clients 10+ years ago when she
started working in the ADP, one recreational therapist said,
At the beginning when we were really new and way back, if they started hitting, it
was like, okay, they’ve got to get out of here [i.e., be discharged from the
program]. But now we’ve come up with way more interventions, way more
understanding. We understand PIECES. We look at, “Are they in pain?” Like we
look at our whole thing and that person would already go to a behaviour team, so
[our Director] would be involved, the social workers would be involved. [The
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person] would have been discussed a number of times at that behaviour meeting
and the interventions would be then typed on here [an electronic record] for
everybody to read. If it’s a really big deal, they’d even write it in the main
communication book so that everybody’s on the same page. And we go way out
of our way to not get them to that point [of having to be discharged].
This quote (and in particular, her use of the pronoun we) indicates that the internalization
of the PIECES and GPA philosophies occurred at a team level, such that team members
collectively enacted practices that contextualized responsive behaviors and utilized
communication mechanisms to share with other caregivers details regarding the resultant
interventions. Also evident in these findings, moreover, is that staff experimented,
learned by doing and through trial and error; such processes served to trigger and/or
enhance this interactive pattern of internalizing knowledge.
Reconstructed power in the justification of internalizing dementia care
knowledge.
Relative to the internalization of pre-existing dementia care knowledge, staff
typically enacted one of three roles: student learner (in a GPA and PIECES classroom),
detective/historian (in reviewing and committing to internalize client- or resident-specific
information gathered and documented during prior assessments), and/or, the busy worker
who did not have time to review electronic records of clients’/residents’ medical, familial
and social histories. The discrepancy between those who did and did not have the
authority or privilege to access electronic records closely mirrored the hierarchical divide
246
between professional staff (recreational therapists and registered nursing staff) and the
unregulated PSWs – without access to the charted client- or resident-specific knowledge,
PSWs could only internalize knowledge provided in the formal education initiatives.
Conversely, the positional power that professional staff members were granted carried
with it a normative expectation to internalize the knowledge available to them and to
enact the role of detective/historian.
The student learner faced a similar normative expectation, coupled with some
degree of coercive power that mandated participation in the GPA and PIECES
classrooms. The other form of normative power at play in these initiatives stipulated that
any and all such internalized knowledge should contribute to charm-infused efforts to
respond to responsive behaviors without force or without the undue administering of
psychotropic drugs. Observed practices of developing non-forceful “interventions” to use
in response to responsive behaviors can thus be taken as evidence of the internalization of
the care philosophy and practices outlined in both the PIECES and GPA frameworks:
inquisitive problem solving (“putting the pieces together”), an appreciation that “all
behavior has meaning,” and approaching clients/residents in a gentle, calm fashion are all
evidence of such internalization. For this internalized knowledge to be most useful, it
needed to reach and influence the care practices of as many caregivers as possible,
including the family members struggling to maintain an active and effective role in
providing care. For this, processes of socialization were essential within the culture of
dementia care knowledge.
247
Socializing knowledge to contextualize responsive behaviors.
Mentorship, modeling care, and small team meetings were all means by which
tacitly held dementia care knowledge was shared with, or socialized, among staff
caregivers. By way of these mechanisms, dementia knowledge that had been internalized
from dementia training curricula (such as PIECES or GPA), from family members’
knowledge of a person with dementia, or that had been gained at an individual level
experientially, could be combined and spread as tacit knowledge among the care team.
One RPN on the SCU, leveraging her authoritative power and enacting a role of leader
and educator, described how she addressed PSWs who spoke harshly with residents:
Like so many times I hear them saying to the residents: ‘Don’t do that!’ [said
harshly, firmly]. So I’ll say, ‘We don’t use those words here.’ And they’ll say
‘Well why not, she--’ you know, whatever they're doing, and I’ll say, ‘Number
one, she doesn’t know that she’s doing anything wrong; number two, she’s doing
that in response to something that we’ve initiated within her personal space; and
number three, it doesn’t help one iota.’
But the RPN’s redressing of (socialization of) the PSWs’ approach was not limited to
admonishing them; rather, the RPN would often model the gentle, persuasive approach.
She explained that she would say to a PSW,
‘Call me if you need help to get them into the tub room.’ Like for some of [the
residents], it’s like walking the walk of doom towards that tub room, like they're
just resistive as anything. So I say, ‘Don’t pull them along so roughly. Just come
and get me before--’ and I’ll say, ‘These are the ones that might give us
248
problems.’ So they come and get me and I’ll say, ‘Oh hi, come on, we’re going to
go for a walk--’ and before they know it, the resident, they're sitting in a tub chair
ready to be dunked in the water.
While that might be taken as evidence of inter-disciplinary socialization – between
registered and non-registered nursing staff – there were also accounts of intra-disciplinary
socialization among the PSWs. This became evident, for example, in speaking with a
PSW about what it is like to have to work with another PSW who is not familiar with the
SCU residents and routines; the PSW said,
You know they've got to learn just like I learned but if I can guide them along or
if I, you know, work as doubles with them, at least I know the residents are still
getting the proper care and maybe they're kind of picking up on some tips. I mean
if somebody does something I don't have a problem saying you know, ‘Next time
try this,’ or you know, ‘They don't like if you do this or the family doesn't like if
you do this.’
The PSW’s comment confirms that a significant portion of what one needs to know to
care for someone with dementia is learned experientially, on the job, which indicates that
the person with dementia plays a significant role in socialization the care practices
bestowed upon him or her. Moreover, this experiential knowledge can be shared, or
socialized, inter-subjectively. The PSW’s interest in ensuring ‘proper care,’ meanwhile,
can be reconstructed as an indication that she values gentle, compassionate care, and that
she feels concern for residents who might be treated otherwise, hence the practice of
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working “as doubles,” a practice that afforded opportunities to show and/or model for the
other PSW some caregiving tips and to ensure that proper care was provided.
As such, that PSW (re)produced a cultural norm that gives primacy to humane
care practices, a norm that, as illustrated in the following quote, was supported and
fostered by senior leadership members and by team leaders (i.e., the full-time registered
nursing staff). Speculating on the differences between nursing and recreation staff, one
registered nursing staff member said,
I think for nurses – as opposed to recreational therapists, their focus is recreation,
so I think that they naturally think creatively – [yet] for PSWs, they can become
very trapped in just being task oriented. And it takes a lot of pulling at them and
stretching their mind and making them look at stuff to not just get stuck in the
tasks. You know, toileting, transferring, feeding, stuff like that. And you’ll hear it.
Like people will say, oh, she’s – he’s a toileter or he’s a feed, you know? No, he’s
a human who needs to be fed. And I think that really is – I think that’s something
that we work very hard at here and I poke at them about because it’s – that’s very,
very important.
This overt effort to not objectify residents/clients was further supported by a clinical
perspective that translated disease-related symptoms into behaviors. The purpose of this
re-framing was to help staff members understand that the persons with dementia for
whom they were caring were not vindictive or intentionally making caregivers’ jobs more
difficult. In speaking with members of the senior leadership team, the discussion turned
to consideration of how much medicalized knowledge PSWs need to do their job well,
250
and the suggestion was made that more so than knowledge about different kinds of
dementia, PSWs needed support in learning how to socialize effectively with their
clients/residents. Hearing this, another senior leader remarked,
I think the danger in totally ignoring that [medical, diagnostic] part or minimizing
it is that you might take a particular behaviour as purposeful if you don’t
recognize it as a symptom, and I am particularly talking about frontal lobe
dementias where behaviours are really sometimes bizarre and contrary, and if
people don’t understand that this is just as much a symptom as memory loss, they
will look upon that person as contrary or making my life miserable on purpose.
So that purposefulness, that translation of symptoms into behaviours is still a very
important step as far as I can see.
The social power that inhered within the senior leadership team – a normative
authoritarian power – was itself an effective means of socializing tacitly-held knowledge
about dementia care. Moreover, leaders recognized that asking staff members to
internalize explicitly written knowledge was unlikely simply because there was already
literally so much paper on the walls, desks, and memo books in each unit. One member
of the senior leadership team thus preferred regular face-to-face meetings for strategizing
on how to care for particularly difficult SCU residents:
I think word of mouth is better than the written word. People– there’s too many
pieces of paper. Look at it. [She gestured to her own paper-covered desk]. People
stopped reading it. Seriously. They stopped reading it. I mean if I have
something really important I want to convey, I use a different colored piece of
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paper. Because if I hand out a white piece of paper like that, it just gets put with
all the other white pieces of paper. And I mean it’s not that we don’t try to keep
up, but if you look at– go to any of these nursing stations and there’s paper
everywhere. Like it’s difficult. That’s why I think that a weekly word of mouth is
far better– for your difficult situations, or if you have a family that’s difficult.
How are we going to tell– let’s have the same united front – how are we going to
answer them? What are the answers you’re going to give them? Don’t tell them
this because we can’t promise them that.
Ultimately, enacting socialized dementia care knowledge seemed to be determined not
just by what care providers knew about dementia care as much as by social power and
who was present to observe, mentor, audit, or report the care. As one PSW put it,
If management’s around, you're going to do what management wants, whether it's
right or wrong, whether you feel it's right or wrong. If family’s around, you're
going to do what that family asks, even if it is forceful to change those clothes.
You know, that's what I mean: it's not an easy job mentally because what I might
think is right might be completely wrong to someone else, right?
This comment perhaps suggests that rather than the care mantra being do whatever works,
the social power at play within a dementia care site re-shapes the mantra as, do whatever
works, depending on who’s around.
Reconstructed power in the justification of socialization of dementia care
knowledge.
252
An assumption in the analysis of the socialization of dementia care knowledge
was that the socialization was akin to a transference of knowledge back and forth
between two caregivers, and/or from an astute, capable caregiver to or toward a caregiver
who either lacked dementia caregiving experience, or who did not abide with shared
understandings of what was the appropriate way to care for someone with dementia.
While there was evidence of other care acts being socialized – such as one PSW
socializing another about completing their documentation tasks – the focus here is on the
socialization of dementia care knowledge that was intended to benefit the person with
dementia.
Such socialization was justified by intertwining objective, subjective, and
normative claims. Three objectively referenced claims included the notion that staff
members’ own care practices can easily and unknowingly trigger or exacerbate
responsive behaviors, the more backgrounded claim that such triggering is preventable,
and the remotely backgrounded claim that what one might think is a rational and
acceptable way to provide ADL and/or nursing care is often not perceived as such among
people living with dementia. Related to these objective claims were subjectively
referenced claims that subtly conveyed the compassion and concern that caregivers have
for care recipients, especially if/when they are being cared for by someone who does not
actively endeavor to preserve personhood. Thus, the related normative claims can be
reconstructed as follows: caregivers should avoid harming a person with dementia by
being rushed or impatient, and, furthermore, should avoid objectifying and dehumanizing
the person. In other words, staff members should enact care practices that maintain
personhood. In part, the socialization of this norm was fueled by charm, wherein
253
engendered loyalty and respect commanded compliance. Beyond that though, this norm
was (re)produced by normative-authoritative relationships wherein the status conferred
upon the super-ordinate garnered and enabled the socialization of care practices (as when
a PSW does as instructed by a mentoring registered nursing staff member).
Discussion
Both the observational and dialogic data in this study clearly indicated that staff
members in both the SCU and the ADP sites encountered an assortment of responsive
behaviors, ranging from physical and verbal aggression and resistance to exit seeking and
wandering and collecting, from repetitive questioning to seemingly inappropriate social
interactions. In delineating and accounting for how staff members responded to these
responsive behaviors, the hermeneutic reconstructive analysis (Carspecken, 1996)
showed that the use of force was, usually as a last resort, one way in which staff
responded. This was justified by staff members in light of the organizational norm that
gives day-to-day primacy to the completion of ADL tasks and that de-centres another (the
other) prominent norm in the culture of dementia care knowledge, that of contexualizing
the responsive behaviors. These findings contribute to the literature on violence in longterm care (Banerjee, Daly, Armstrong, Armstrong, Lafrance, & Szebehely, 2008; Levin,
Beauchamp, Misner, & Reynolds, 2003) that has shown that the physical violence that is
very nearly an everyday occurrence in most long-term care homes is attributed to the way
in which work is organized and funded: there is not enough time or human resources to
do so much work, a phenomenon Banerjee et al. describe as “structural violence” (p. iv).
The findings presented here bring to the fore backgrounded organizational norms –
254
adhered to and (re)produced by upper management and point-of-care workers alike – that
essentially condone the use of force in completing the ADL care, even in a culture that
understood and had integrated into its care practices person-centred approaches such as
GPA and PIECES. Despite subjective claims that staff did not like or want to use force,
and were even afraid of being reprimanded, and despite the valuing of person-centred
care, the concurrent perceptions that (i) residents with dementia would languish as their
personal hygiene deteriorated and (ii) that the care work had to be done so as to not
inconvenience others nor risk non-compliance, ultimately justified the use of force.
In examining these contesting norms and to find the meaning in a behavior so as
to prevent it; and to, if necessary, use force to complete ADLs, distinct temporal elements
in each norm emerged as significant. While staff did attempt and often succeed in
contextualizing behaviors, it took time to do so – to document, assess, document,
investigate, strategize, try an intervention, document, re-assess, etc. – and in the hours
and days that passed as this investigative contextualization was taking place, there were
care duties and ADLs that “had to get done.” When responsive behaviors manifested
before they could be investigated and resolved or prevented, this was a culture that both
tolerated the clients’ and residents’ physical aggression and, sometimes, met such
aggression with physical force of its own.
This temporal rift perhaps reframes what Dupuis et al. (2012) described as the
“inability to contextualize behavior” (p. 170) as being more than an issue of one received
discourse dominating another; rather, the scenario might be more aptly described as two
co-existing discourses wherein the more immediate needs and norms surrounding ADL
care provision de-centre the slower-to-emerge products of the gentle, persuasive, ‘all
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behavior has meaning’ discourse. This raises implications for dementia care
organizations trying to integrate into their workforces person-centred discourses by
pointing out that usual care practices will likely continue to coincide with the “best
practices” that unfold along a slower moving timeline than the activities of daily living.
In re-cognizing that these two sets of practice coincide, managers and leaders might
acknowledge that the more highly trained staff – registered nursing staff and recreational
therapists – need to continue and perhaps redouble their efforts to contextualize and
subsequently prevent the responsive behaviors rather than blaming point-of-care
providers for an inappropriate approach when in fact that day-to-day care is being
provided by staff who have not sufficient training, resources and support (Ersek,
Kraybill, & Hansberry, 1999; Grabowski et al., 2010). Moreover and so as to provide the
necessary resources and support, managers and leaders should remain cognizant that as
the ‘get care done’ and the ‘understand all behaviors’ practices continue to coincide, so
too should the propagation of dementia care knowledge that mitigates and prevents
responsive behaviors.
Implications for empowering therapeutic relationships with dementia care
knowledge.
Despite the normalization of the use of force during care provision, a number of
coinciding knowledge generation processes provided staff members with the knowledge
needed to avoid having to use force or restraint when responding to responsive behaviors.
Following Nonaka (1994), such efforts could be seen to manifest in three different
patterns of knowledge interaction: the externalization of tacit knowledge – shown here to
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occur during intake and admission assessments and to have involved soliciting from
family members their knowledge of ‘what works’ in caring for their loved one, as well as
medical, social, and familial history; the internalization of explicit knowledge – this
manifested within the context of specialized dementia training programs such as PIECES
and GPA, as well as in making use of the person-specific knowledge previously
externalized from family members; and the socialization of tacitly held dementia care
knowledge, which manifested within a variety of intra- and inter-disciplinary roles that
staff enacted, including mentor, coach, care partner, and strategist.
These findings lend support to the PIECES (P.I.E.C.E.S. Canada, 2008) and GPA
(Schindel-Martin & Dupuis, 2005) initiatives that have attempted to integrate into longterm dementia care discourses of person-centeredness and responsive (rather than
dysfunctional) behaviors. That informal mechanisms enabled socialization to occur is in
keeping with previous research that showed that the sustained implementation of PIECES
was greatest when, along with a supportive work environment and leadership, multiple
staff members were trained and could engage in the mentoring and coaching of others
(McAiney, Stolee, Hillier, Harris, Hamilton, Kessler, et al., 2007). This study’s findings
also serve as a case in point of how the processes of internalization and socialization
supplement one another, thus lending support to Nonaka’s (1994) assertion that an
organization’s efforts should not be limited to internalization (education and learning
events) only. Given also the significance of externalizing family members’ knowledge
and of the subsequent internalization and socialization thereof among staff members
committed to enhancing their own care practices, this study has shown that these three
knowledge conversion processes sometimes occurred in an inter-related fashion such that
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individually derived knowledge was elevated to team-level knowledge. In other words,
these findings lend support to Nonaka’s theoretical framework of the constituent
dimensions of knowledge creation.
These findings also support previously stated assertions that (i) tacit knowledge is
a “crucial component” of a team’s ability to create new knowledge (Quinlan, 2009, p.
638; see also Greenhalgh et al., 2005), and (ii) that the externalization of tacit knowledge
can be enabled by not only dialogue (Nonaka, 1994), but also by text-activated dialogue:
standardized intake and assessment forms act “as constituents of the co-ordination of
social relations within the institutional order of health care delivery” (Quinlan, 2009, p.
638). Indeed, the significance of tacit knowledge in dementia care should not be
understated: as part of that which was externalized from caregivers already in the know,
tacit knowledge was central to clinical judgment, and to appreciating individuals’
“dispositions and generative schemes for being and perceiving” (Kontos & Naglie, 2009,
p. 690).
Together these findings suggest that just as in public health research (Kothari &
Wathen, 2012; Kothari et al., 2012), dementia care researchers and practitioners might be
encouraged to uncover and leverage tacit knowledge in establishing collaborative health
relationships. Indeed and in keeping with Nonaka’s (1994) terminology, dementia care
leaders and trainers might re-cognize their interactions with family caregivers as the
opportunity to uncover and externalize tacit knowledge, just as they might re-cognize the
inter-subjective relationships between and among caregivers and persons with dementia
as space in which that tacit dementia care knowledge is socialized. Recalling Nonaka’s
warning that organizations must not over-emphasize the processes of internalization at
258
the expense of understanding how tacit knowledge is externalized and spread through
socialization, such re-cognition of where and how tacit knowledge can be brought to bear
on dementia care would supplement the more formal curriculum-based efforts to have
care providers internalize dementia care knowledge. Consequently, a three-pronged
approach to generating dementia care knowledge can contribute to establishing and
maintaining a person-centred approach to dementia care. This can help advance the
movement away from dominant medicalized discourses toward discourses and practices
that preserve humanized and inter-subjective care.
In Closing
The socialization of a person-centred norm in responding to dementia-related
responsive behaviors was (re)produced by both normative-authoritative relationships that
commanded compliance, and by the loyalty and respect that inhered in collegial and
hierarchical relationships alike. Ultimately, this study has drawn attention to the need for
dementia caregivers to be attuned to the communicative capacity of a person with
dementia – a sensitivity that itself demands the re-cognition of their tacitly held but not
easily communicated knowledge – and to be attuned to where and how tacit knowledge
flows from and among clients and residents, staff, and family caregivers. In light of
research that points out a need to re-conceptualize long-term and dementia care as
knowledge work (Berta, Laporte, Deber, Baumann, & Gamble, 2013), such ‘dual
attunement’ would contribute to the critically reflexive practice environment that Dupuis
et al. (2012, p. 171) suggest is necessary for dementia care; rather than resorting to the
use of force, care practices that are attuned to tacit knowledge can lead to “caring in
259
humane and relational ways, and in ways that allow [caregivers] the time they need to be
truly present, [and to] understand the meaning in actions.”
260
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– Chapter Seven –
Discussion
This study took place in two dementia care sites: a specialized care unit (SCU) for
residents living with advanced dementia in a long-term care home, and an affiliated adult
day program (ADP) designed for clients with less-advanced dementia who were still
living at home. The SCU was home to 32 residents living with advanced dementia,
mostly of the Alzheimer’s type, but also related to Schizophrenia, vascular dementia,
Pick’s, Creutzfeldt-Jakob disease, and Wernicke-Korsakoff Syndrome. The ADP was
attended by up to 60 people per day living with a similar range of primary dementia
diagnoses, albeit less advanced than those in the SCU.
The overall aim of this study was to understand how the influence of social
power manifests in the culture of dementia care knowledge. In order to do so, a critical
qualitative research (CQR) methodology was selected to guide the data collection and
analysis (Carspecken, 1996). Ethnographic in nature, this study thus entailed a period of
observation, followed by an interview phase. Additionally, a number of iterative memberchecks were conducted throughout and toward the end of data collection as preliminary
findings were shared with and refined by study participants. The defining feature of the
CQR methodology (Carspecken, 1996) is its hermeneutic reconstructive analysis,
constituted chiefly by three analytic techniques that serve to operationalize the theory of
communicative action (Habermas 1985a, 1985b, 2003). The premise of hermeneutic
reconstructive analysis has much in common with Quinlan (2009) and Nonaka’s (1994)
assertion that dialogic exchange among two or more people facilitates the articulation of
observed and tacit knowledge, and that it is this shared experience through discussion that
creates new knowledge. The delineation and reconstruction of these communicative
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elements yielded a deep understanding of how dementia care knowledge is shaped by
historical and socio-political influences.
Conceived and analyzed as CQR (Carspecken, 1996), the focus in this study was
not just on what was said or on what knowledge emerged in these discussions; rather, the
focus also included the non-discursive realm of communication, which Carspecken
describes as the pragmatic horizon of a communicative act. Additionally, one of the
analytic tacks taken in this study was to assess whether or not cultural practices were
arrived at fairly and without coercion (Habermas, 2003). The analysis of social power in
this study yielded insight into where and how coercive power was at play, thus pointing
out cultural practices that were more or less oppressive in nature, in turn yielding a better
appreciation of how social power influences the locally contained truth about dementia
care. By re-cognizing cultural practices and beliefs in this light, a critically lit path toward
less oppressive and more equitable care and work conditions became visible. A summary
of study findings, insights, and implications follows further below; first though, this
discussion turns to some methodological reflections.
Methodological Limitations and Reflections
In Chapter Three, I outlined the triple crisis of representation (Denzin & Lincoln,
2005) in terms of crises of representation, legitimation, and praxis. I return to that
framework now to consider the strengths and limitations of this study and to reflect on
the utility of Carspecken’s “CQR” methodology.
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Strengths
I identify three key strengths in this study: the overall coherence of the study, the
democratizing intent and effect of the member-checking, and the legitimacy of the
findings. First, a goal was to achieve ‘coherence and consistency’ in terms of the
epistemological-methodological-knowledge claim linkages in this study (Holloway &
Todres, 2003). While this might be taken as fundamental to all research, I believe my
rhetorical treatment of a theoretically dense analysis has helped render such coherence:
the critical values and ways of knowing described in Chapter Three provided both a
foundation and a point of departure for this study as I was able to remain grounded
therein while critically exploring and re-presenting study participants’ knowledge and
lived experiences of dementia care knowledge. The claims this work makes – that
oppression can be mitigated by normalized inclusiveness and by uncovering and
leveraging tacit dementia care knowledge – are similarly critical. Bolstered by the merits
of the methodology itself, I feel as though this dissertation does achieve ‘coherence.’
Second, the member-checks I conducted during the interview phase of data
collection strengthened this study immensely. While I acknowledge that memberchecking has its shortcomings (i.e., the possibility that participants chose not to or felt
unable to contest my interpretations; the impossibility of member-checking all
interpretations; and the risk that member-checking might (re)produce existing dominant
and oppressive structures), I feel that the sequencing of field observations followed by
initial meaning field reconstructions, followed in turn by in-depth interviewing and
member-checking helped to both refine the data analysis and to fold into the analysis its
subjects. That meaning field reconstructions were framed in the member-checks as a
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range of possible meanings seemed to enable participants to confidently assist in honing
the interpretations, and this frequently led to even richer dialogic data collection.
Third and as indicated in Chapters Five and Six, I believe I was successful in
rendering a legitimate account of the knowledge culture under study. This was aided by
being mindful of a number of criteria, including prolonged immersion, observations
preceding interviews, interview topics derived from those observations, comparing
interview data with observation data, and iterative member-checking of the reconstructive
analysis. I thus believe the study findings reflect the participants’ experiences of creating,
sharing, and enacting dementia care knowledge in this one dementia care organization.
While not generalizable, such an in-depth understanding, particularly of the normative
and coercive powers that shape those experiences, will be relevant and applicable for
other similar organizations where formal caregivers are providing dementia care. While I
may have avoided a crisis of legitimation, I do wish to acknowledge the limitations in
dealing with the crises of representation and praxis.
Limitations
Regarding the crisis of representation, the imperative to reflexively consider how
my gender, class, and race shaped the collection and re-presentation of the study findings
stems from the recognition that study participants’ lived experience is re-created in a
researcher’s text and that this in turn creates doubt about a researcher’s ability to in fact
capture participants’ lived experience (Denzin & Lincoln, 2005). On this account, I feel
as though my choice to use CQR limited my opportunity to demonstrate such reflexivity.
Instead, CQR seems to generate findings and claims that, despite their interpretive-
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reconstructive nature, reflect authoritative all-knowingness. Including Introduction #3
(Life as my CAGE) was meant to humanize this view from above, to show that certainly
during data collection, I tried to be aware of how my presence, my way of being, might
have affected the study participants. But Chapters Four, Five, and Six were essentially
void of any such reflexivity, hence I count this is as a limitation to the way in which this
study was re-presented.
A second limitation has to do with the under-representation of family members’
voices in this work. This study has indicated that family members do indeed play a
significant role in the culture of dementia care knowledge insofar that they are a key
source of knowledge related to staff members’ sense of care recipients’ personal and
unique history, and of knowledge related to that which provides meaning in care
recipients’ lives. That said, the study data and the findings presented here focused on staff
members’ interactions and on the nature of the mechanisms by which their dementia care
knowledge was created, shared, and enacted. This focus on staff reflects a claim that
during the periods of observation, family members were often not present; moreover,
since CQR stipulates that interview data be derived from and compared to observation
data, the bulk of the interview data focused on staff members. That is not to say though
that family members were not included in the observation and interview phases of data
collection, they were, but the generative themes that emerged from the data – and
subsequently their presentation in these findings – was limited to staff members’
experiences of and within the culture of dementia care knowledge. A more thorough
integration of family members’ perspectives and experiences of creating, sharing, and
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enacting dementia care knowledge is likely to have yielded an even deeper understanding
of the culture of dementia care knowledge.
A third limitation of this study has to do with praxis. I indicated in Chapter Three
that my efforts to enact a pedagogy of praxis draw largely on Freire (1972). I attempted
to render accounts of this knowledge culture that may help most individuals living or
working in dementia care to not just recognize, but to re-cognize situations that they
commonly find themselves in. And in seeing the situation anew, in seeing how various
actors in this knowledge culture – and perhaps even they themselves – are complicit in
negating and oppressing others, the intent has been to divide and reconstruct the whole of
the situation so as to stimulate a new perception of problematic living and working
conditions, and subsequently to encourage dialogic conditions where previously
unperceived practical solutions come to light (Freire, 1972). Partly because my strategy
for exiting the research field was open-ended and carried with it a ‘to be continued’ tone,
and party because these study findings are just now (potentially) reaching the study
participants and other dementia care stakeholders, I am unable to judge the extent to
which the study findings are catalytic. This is a limitation I return to further below in
considering the future directions of this project.
The Utility of CQR
Regarding Carspecken’s (1996) CQR methodology itself, the time and effort
required to understand, employ and orchestrate its myriad elements and idiosyncrasies
posed a significant challenge, and the concerted efforts that resulted in Chapters Five and
Six were in effect bound and somewhat constrained by the novelty and complexity of
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Carspecken’s hermeneutic reconstructive analysis. That said, I believe that my deep
engagement with hermeneutic reconstructive analysis is what contributed to my success
in rendering a legitimate account of this knowledge culture: I was afforded a set of
critical values, tenets, and schema that yielded me deeper insights than I could otherwise
have imagined. This was aided (i) by the internalization of the figurative heuristic that
helped me to conceptualize the pragmatic horizon of hermeneutic interpretation (recall
Figure 4.3), and (ii) by the use of both a priori and in vivo coding, the former of which
helped with the orchestration and retrieval of CQR’s constitutive elements, while the
latter framed the development of an emerging sense of how dementia care knowledge
was created, shared, and enacted. I believe also that my deployment of CQR benefited
from the attention paid to the triple crisis of representation (Denzin & Lincoln, 2005):
while the legitimation of the study findings is in part a function of adequate and valid
hermeneutic reconstructive analysis, the potential achievement of praxis is, additionally,
a function of how those legitimate findings are re-presented. While a writer’s craftwork
might always feel imperfect, I feel that the fore-fronting of the crises of praxis and
representation has assisted in rendering this legitimate account of this culture of dementia
care knowledge and in achieving its critical aims.
Moreover, my immersion into and deployment of CQR has forever changed me: I
have experienced tremendous growth in my ability to find my bearings in the variably
deep and choppy waters of critical epistemology, and I have internalized what
hermeneutics is and what hermeneutic reconstruction entails and feels like. It feels like I
am doing it all the time, constantly delineating the meaningful and inter-subjective
moments in my own life into normative and subjective realms, peering around the back
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of language to grasp and bring to the fore that which is backgrounded, spotting power.
Such critical growth is akin to insights that cannot be unseen, and I expect now to
encounter and build upon this growth as I continue to develop a critical program of
research.
Summary of Study Findings
The findings presented in this study were based on a conceptualization that
dementia care knowledge means knowing how to read and interpret a person with
dementia and how to prevent and respond to responsive behaviors, often while assisting
with activities of daily living (ADL). Thus, in addition to assisting with personal care, the
routine care practices that inhered in providing advanced dementia care focused on
providing opportunities for meaningful social engagement and/or meaningful leisure
activities, and, in doing so, on mitigating the frequency and severity of responsive
behaviors. This latter practice was enabled by collective efforts among staff members to
‘read’ or ‘become attuned to’ the person with dementia, to contextualize and understand
the unique personal history of care recipients, and to share this knowledge through a
variety of mechanisms, both verbal and written, formal and informal. As reading and
interpreting a person with dementia occurred, social and organizational powers variably
took form as normative, coercive, and charming power, often in a complementary way, to
shape the dialogic conditions that manifested at the moment that the reading of a person
with dementia became shared knowledge.
Insofar that a culture can be understood largely in terms of the norms that govern
it (Carspecken, 1996), the normative aspects of the culture of dementia care knowledge in
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this study can be characterized by the following five statements of what is (or is not)
appropriate: (i) Caregivers should ‘take the position of’ and advocate for the person with
dementia for whom they are caring so as to ensure that that person remains included –
even if by proxy – in the care planning process; (ii) In planning and providing care,
caregivers should seek to establish and maintain an authentic, inter-subjective
relationship with the care recipient(s) – even if non-verbal – so as to re-cognize the body
as a site of knowledge production (Kontos & Naglie, 2009) and to in turn re-cognize care
needs and/or changes in care recipients’ psycho-social status; (iii) The planning and
provision of care should be informed by the judgment and experience of those who have
been or are most familiar with the care recipient – and should thus include family
members’ and personal support workers’ knowledge – and, moreover, this planning and
provision of care should be shared and democratic in nature; (iv) Caregivers should
respect care recipients’ choices and preferences; and (but), (v) If/when clients’/residents’
choices and preferences need to be reconciled with an organizational mandate (norm) to
assist with personal care and to keep clients/residents safe, caregivers should use a variety
of (ideally, non-coercive) strategies to persuade care recipients to accept care. These
cultural norms manifested in a variety of sometimes contradicting social roles (e.g.,
mentor, educator, tone-setter; advocate, shared decision-maker, provider of contextual
knowledge; compliant sub-ordinate, want-to-be knowledge sharer, the too-busy worker).
Ultimately, these cultural norms permeate the study findings and bear directly on the recognition of social power described in Chapters Five and Six.
Chapter Five – Re-cognizing Social Power in Reading and Interpreting People
with Dementia in Long-term Dementia Care – asserts that the reading and interpreting of
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a person with dementia occurs in both inter-subjective and digital/electronic realms, and
the analysis in Chapter Five resulted in three power themes by which to conceive of the
conditions of discourse in this situation: (i) the democratic co-construction of knowledge;
(ii) the unjust distortion and exclusion of knowledge; and (iii) normalized inclusiveness
in knowledge generation. It was suggested that democratic conditions for the coconstruction of knowledge are an ideal for dementia care organizations to strive toward
wherein inclusiveness and the freedom to speak and ask questions are all maintained so
as to benefit, in particular, the care recipients, but also the caregivers who take the
position of and advocate for those for whom they care. Moreover, for organizations or for
groups of caregivers that find themselves in converse conditions – those that lead to the
unjust distortion and exclusion of either the people affected by a care decision and/or
their knowledge – emulating the third power theme of normalized inclusiveness in
knowledge generation can help a group of caregivers become more democratic and to
come closer to achieving the ideal conditions for ethical (dementia) discourse, thereby
mitigating the marginalization of those whose knowledge is excluded. As the conditions
for the democratic co-construction of knowledge are achieved, caregivers, ideally,
become attuned to both the communicative capacity of the persons with dementia for
whom they care, while also becoming attuned to social and organizational power in
dialogic exchange.
Chapter Six – Reconstructing (Responses to Responsive) Behaviors in Dementia
Care by Re-cognizing how Social Power Interacts with Tacit & Explicit Knowledge –
focused on the manifestation of power in staff members’ actual responses to responsive
behavior. Grossly dividing such responses into therapeutic and forceful responses, a
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critical examination of the latter type showed how and why the use of force was justified
within this culture of dementia care knowledge. This justification centred around the
assertion that without forcefully intervening to overcome clients’ and (especially)
residents’ resistance to ADL care, a person with dementia would languish, perhaps unfed
and unclean, or be left for the next caregiver on the next shift. Staff did not like to have to
use force, but, despite their reticence, the cultural norm that dominated care practices was
to use force if necessary to complete the tasks of assisting with ADL care. This is
something that individual caregivers and organizations alike need to explicitly come to
terms with as they form and maintain relationships with the people for whom dementia
progresses and affects.
What made this finding about the justification of using force all the more
remarkable is that this occurred even though a person-centred philosophy of care had
more or less become integrated into the organization. This was apparent in all the other
ways that staff responded to responsive behaviors, be that an effort to contextualize and
understand the behavior so as to prevent it; using a calm, gentle approach; both passive
and explicit validation of a person’s interests or concerns; and/or the provision of
therapeutic activities and social engagement. Person-centred attitudes and practices were
also evident in tracing the generation, conversion, and spread of tacit dementia care
knowledge.
Summary of Key Insights
The findings of this study give rise to a number of key insights and related points
of significance. The first is that normalizing inclusiveness in generating dementia care
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knowledge is akin to democratizing the hierarchical and classist relationships in longterm dementia care work environments. This is important because the more that dementia
care knowledge is co-constructed under ethical conditions of discourse (where people are
free from coercion, free to share their perspectives, free to ask questions or critique, and
where all those affected by a care decision are involved in making it) – under these
conditions, I contend that the subjective state of caregivers can better flourish in a way
that is conducive to dementia care. That is, rather than be consumed with the resentment
and frustration that spawns from being devalued and disrespected by super-ordinates, the
respected and included sub-ordinates can focus their time and energy on being present
with the persons for whom they are caring (while presumably enjoying greater job
satisfaction). The conditions that enabled such normalized inclusiveness centred around
leadership that embodied a role of educator-as-facilitator of knowledge exchange; such
strong leadership, rather than coercively deploying authoritative status, created space for
the inclusion of others’ knowledge, and for the empowerment of sub-ordinates wherein
they felt equally valued.
The second insight relates to the temporal distinction between two prominent and
somewhat contradictory care norms in the SCU setting – that of understanding and
contextualizing the meaning bestowed in a responsive behavior, and that of using force
when necessary to complete ADL-related tasks. These co-existing care routines not only
contest one another, they manifest or unfold along very different timelines. The care work
that goes into understanding a responsive behavior is often very slow to evolve:
observations lead to discussions, postulations, assessments and investigations; finally, an
intervention is trialed, and it may or may not work, or it may work but not for long so the
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cycle begins again, and all the while, each step is documented. And meanwhile, the socalled less-skilled and definitely less-paid care workers continue to provide the hands on,
day-to-day ADL care, often for eight or nine or more residents, some of whom continue
to exhibit responsive behaviors every day, sometimes every hour or half hour, sometimes
seemingly every minute. These distinct and starkly contrasting timelines of investigating
a responsive behavior and of caring for someone exhibiting a responsive behavior seems
to reflect and further reproduce the hierarchical relationships between professional and
unregulated staff, and warrants either that less blame be placed on point-of-care care
providers (PSWs), that the ratio of PSWs to persons with dementia be increased, and/or
that professionally trained and regulated workers develop and integrate new mechanisms
to better contextualize responsive behaviors in a more timely manner.
The third insight is that in order to better contextualize responsive behaviors in a
timelier manner, organizational managers and leaders need a three-pronged approach to
generate the requisite dementia care knowledge, wherein the three prongs iteratively
include (i) the internalization of known best practices (i.e., successful education events);
(ii) the externalization of family members’ knowledge followed by the subsequent
internalization thereof, and (iii), the socialization of all this now-tacitly-held knowledge.
Rather than relying on the haphazard and disjointed outcomes of any one of these
knowledge generation processes, the suggestion is that a concerted effort be made to
optimize and integrate and make available and accessible the collective knowledge that
is produced by all three processes together (Brown & Duguid, 1991; Nonaka, 1994).
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Implications of Key Insights
In keeping with CQR, each of the following implications is stated as a normative
claim, that is, as what should be done in a dementia care setting that (i) espouses and
upholds the conditions for ethical discourse, (ii) acknowledges the temporal rift between
investigating and responding to responsive behaviors, and (iii) that takes a concerted,
three-pronged approach to generating dementia care knowledge.
Implications for Dementia Care Practice
As family members and staff establish and maintain relationships in their efforts
to create, share, and enact dementia care knowledge, and as they collectively strive
toward enacting and normalizing inclusive care planning (Hennings, Froggatt, & Keady,
2010; Petriwskyi, Robinson, Parker, Banks, & Andrews, 2012), they would do well to recognize coercion and to flag it to be redressed. This might entail folding into and
nurturing within the culture of dementia care knowledge the practice of re-cognizing the
vulnerability of sub-ordinates’ subjective state when coercion does manifest and how this
can potentially affect care recipients negatively. This kind of reflective practice should
entail an understanding of which communication strategies disable and enable triadic
communication among family members, staff, and residents/clients (Adams & Gardiner,
2005).
A second practice implication relates to making an active effort to eliminate
blaming practices by re-cognizing the temporal distinction between contextualizing
responsive behaviors and having to care for someone who continues to exhibit responsive
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behaviors, that is by acknowledging that while the responsive behavior is being ‘figured
out,’ daily care must carry on. It should not be presumed that the manifestation of
responsive behaviors during the provision of ADL care is the fault of care providers
(Morgan, Cammer, Stewart, Crossley, D’Arcy, Forbes, et al., 2012); instead, regardless
of being paid or unpaid, regulated or unregulated, all care providers should focus on
exchanging their particular knowledge of a client/resident so that the behavior can be
contextualized and mitigated in a more expedient fashion (Dupuis, Wiersma, & Loiselle,
2012).
Moreover, during such investigative care planning, if the person with dementia is
not or cannot be present, staff leaders and/or family members should have someone take
the position of the care recipient and imagine, exhaustively, what the person with
dementia might want, need, or be interested in, and have that person assume a role of
advocate during the care planning. Such ‘position taking’ runs a risk of misrepresenting
the person with dementia’s true preferences or intentions, but this risk might be mitigated
by promoting the equal participation among all those affected by the care planning, by
providing the resident or client with opportunities to talk, and by being sensitive to nonverbal cues (Adams & Gardiner, 2005; Kontos, 2005).
Implications for Dementia Care Education
As an extension of the practice implications stated above, those who develop and
offer specialized dementia care education might consider explicitly acknowledging and
discussing in their training sessions the temporal distinction that separates investigating a
responsive behavior (Egede-Nissen, Jakobsen, Sellevold, & Sørlie, 2013; Keady & Jones,
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2010) and (in the meantime) responding to it. Furthermore, in service of establishing
inclusiveness, educators might consider modeling in their education events the conditions
for ethical discourse (Adams & Gardiner, 2005), perhaps as a set of new, institutional
ground rules. Educators might also orient learners – including family members – to
varied patterns of knowledge generation (Nonaka, 1994) and orient and encourage the
targeted learning group to engage in the externalization and socialization of others’ tacit
knowledge so as to enhance their ability to contribute to care planning. Doing so might
contribute to broadening the vision of ‘personhood’ in dementia care (O’Connor,
Phinney, Smith, Small, Purves, & Berry, 2007) by instilling in learners the value of and a
commitment to become knowledge brokers, thus creating a positive feedback loop
between being valued and being able to grasp and leverage tacitly-held dementia care
knowledge.
Implications for Dementia Care Policy
In terms of policy implications for organizations that are interested in establishing
a more ethical, practical, and astute culture of dementia care knowledge, organizational
leaders and managers might make it a policy to plan and deliver care within the
conditions of ethical discourse (Dupuis, Gillies, Carson, Whyte, Genoe, Loiselle, et al.,
2013; Habermas, 2003; Mitchell, Dupuis, & Kontos, 2013; Sellevold, Egede-Nissen,
Jakobsen, & Sørlie, 2013). Toward this end, Dupuis et al. have developed a concept of
‘authentic relationships,’ while Mitchell et al. have suggested that the notions of
‘embodied selfhood’ and ‘knowing other-wise’ can transform the nature of dementia care
relationships from suffering to affirming. The power analysis in this study further
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suggests that organizations might enact this policy by leveraging a combination of
authoritative-normative and charming power to eliminate hierarchical divisiveness,
coercion, and exclusion. These leaders might suppose further that those who do not or
cannot abide by these conditions need to be shown compassion and concern about
whatever else is going on in their lives. Similarly, consideration might be given to
developing mechanisms to orient and involve family members in long-term dementia
care (rather than process them through LTC) and to externalize their tacitly held
knowledge about caring for their loved one. Olsson and colleagues (2012), for instance,
found that the use of information and communication technology was useful in meeting
the needs of family caregivers, while another study showed that long-term relationships
that included a multidimensional assessment were found to help coordinate care among
family members and persons living with dementia (Judge, Bass, Snow, Wilson, Morgan,
Looman, et al., 2011). These studies thus suggest that policies should be considered to
develop mechanisms – formal and informal, relational and electronic – to make the
person-specific knowledge that is available accessible.
A separate policy implication relates to the status of PSWs: given the emerging
recognition of PSWs as caregivers with invaluable knowledge about the status of and
ways to relate to dementia care recipients (Berta, Laporte, Deber, Baumann, & Gamble,
2013), organizational leaders and managers should endeavor to elevate the status of
PSWs by way of enhancing and regulating the dementia-focused education they receive
and by explicitly acknowledging – on an individual, one-by-one basis – the knowledge
work PSWs perform. In the home care sector, research toward this end has focused on
understanding what drives recruitment and retention of unregulated home care workers
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(Sims-Gould, Byrne, Craven, Martin-Mattews, & Keefe, 2010) and what factors
contribute to the provision of effective, efficient, and respectful care (Sims-Gould &
Martin-Matthews, 2010); similar efforts are warranted in long-term dementia care (Berta
et al., 2013). Additionally, an organization might further acknowledge the value of its
PSWs by developing the means to increase the ratio of PSWs to clients/residents with
dementia (Karantzas, Mellor, McCabe, Davison, Beaton, & Mrkic, 2012).
Implications for Knowledge Translation and Dementia Care
This study also carries with it a number of implications for KT and dementia care,
the first of which is a re-cognition that the “best practices” in dementia care are (only)
principles, and that the knowledge one needs to do dementia care is extremely particular
and requires the externalization and socialization of person-specific knowledge. As such,
in deciding what constitutes the “evidence” to be translated to and among care providers
(Bluhm, 2005; Rycroft-Malone, Seers, Titchen, Harvey, Kitson, & McCormack, 2004;
Staus & Haynes, 2009), KT practitioners should re-cognize the ubiquity and salience of
tacit knowledge in dementia care (Kontos & Naglie, 2009) and ensure that KT efforts in
dementia care take into full account the genesis and conversion of tacit- and explicitknowledge (Kothari, Rudman, Dobbins, Rouse, Sibbald, & Edwards, 2012). Doing so
might further substantiate efforts to foster bottom-up KT practices (rather than top-down,
authoritatively driven KT practices) that include family members and point-of-care
workers and that are grounded in the tenets of ethical discourse: inclusion of all those
affected by the practices, freedom from coercion, freedom to speak, ask, and critique.
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Methodologically, this study has demonstrated the potential of Carspecken’s
(1996) CQR methodology to discern and reconstruct the power that inheres in and
constitutes a particular knowledge culture. This was achieved by reconstructing a sense
of what contributes to a lack of recognition of one person’s care knowledge by others,
and of why and how one might experience an absence of control over one’s work. The
nature of these insights is relevant to KT scholars and practitioners who appreciate that as
a part of context, the knowledge culture being studied or targeted for a KT intervention
needs to be understood in terms that make clear the influence of social power among and
between the culture’s constituents and the intervening knowledge translators (Quinlan,
2009). As such, this study has contributed to re-conceptualizing and operationalizing
“culture” and “context” in ways that consider the broader (often oppressive) social forces
at play in constituting dementia care knowledge, thus offering deeper insights into the
‘hidden complexities’ of the long-term care context (Cammer, Morgan, Stewart,
McGilton, Rycroft-Malone, Dopson, et al., 2013) and, specifically, its knowledge culture.
This critical methodological contribution can potentially be applied to care settings
beyond dementia care where efforts to enhance inter-disciplinary and person-/familycentred care are underway.
Future Research
A number of potential research questions arise out of this study, the first two of
which relate directly to ethical considerations. First, in terms of implementing a culture
change, how feasible is it to introduce the conditions for ethical discourse (Habermas,
2003) in long-term and dementia care? And related to this, how would one ever know of
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(or possibly police) violations of a presumed commitment to non-coercive relations? In
other words, while the conditions for ethical discourse are arguably sound and indeed
ethical, to what extent can one expect dementia care organizations’ staff, family members
and clients/residents to adopt and enforce among themselves these conditions as a kind of
way of being, or as a performance expectation? Might other, more entrenched
organizational and/or political discourses preclude the conditions for ethical discourse
from taking hold? How could entrenched hierarchies and attitudes among staff (Stolee,
Esbaugh, Aylward, Cathers, Harvey, Hillier, et al., 2005) be displaced so that the rhetoric
of inclusive and ethical care can be realized?
A second future research question related to ethics asks, what else can be learned
about the use of force in dementia care? Is the use of force to be attributed to the
‘structural violence’ that inheres in the way long-term care work is structured and
organized (Banerjee, Daly, Armstrong, Armstrong, Lafrance, & Szebehely, 2008)? What
would happen if staff abstained from using force in completing ADLs and instead just reapproached, re-approached, re-approached? How do families – at various stages of
dementia – come to expect, condone, or detest the use of force? And, how would the
addition of more human resources (more PSWs) affect the rate of occurrence of the use
of force? The concerning normalization and justification of using force found in this
study confirms the findings of Daly and colleagues (2011), and research that aims to
better understand and change this care norm seems warranted.
Third and related to the professional identities of PSWs, future research might
pose the question, what would serve to elevate the status of PSWs within the knowledge
culture of dementia care? What innovative strategies can an organization deploy to
285
generate and pay respect to this sector of the health care workforce? A place to start,
perhaps, might be to follow the call of Berta and collegues (2013) who suggest that
PSWs’ work be re-cognized as knowledge work (a claim supported by this present study)
and that PSWs’ attitudes, motivations, and decision-making abilities be further explored.
While this is arguably an important step toward understanding the needs and attributes of
this group of caregivers, such investigations should not de-centre the concurrent need to
enhance the social status bestowed upon this group of unregulated albeit invaluable care
workers. Researchers can and should focus their enquiries to this end.
Related to gaining a better understanding of knowledge cultures and knowledge
work, a fourth area of future research might ask, how can a dementia care organization
optimize the solicitation and garnering of care recipients’ existing tacit knowledge about
their own care needs? What innovative mechanisms can improve this externalization?
Subsequently, how can this just-externalized knowledge be made accessible – not just
available, but accessible – to other caregivers? While this question might well be
examined through a CQR lens, it might be examined too through alternative critical
methodologies, ones that perhaps give more primacy to understanding how texts and/or
other non-human actors shape the culture of dementia care knowledge (e.g., institutional
ethnography – see Smith, 2005, or actor network theory – see Law, 2009).
Such postulations relate to a fifth area for future research stemming from this
study, a methodological one, which is to explore further the utility of using ‘critical
qualitative research’ methodologies – be that of Carspecken (1996) or other critical,
power-focused methodologies – in assessing different knowledge cultures within and
beyond the field of long-term dementia care. Following the suggestion that skillfully
286
facilitated reflective nursing practice can yield valued and significant change to clinical
practice (Paget, 2001), warranted specifically is an exploration of the extent to which
findings from this critical, qualitative examination of the culture of dementia care
knowledge can be used as a fulcrum to leverage deeper reflection en route to mitigating
oppression and marginalization in care sites where similar services are offered.
Conclusion
This dissertation opened by invoking the metaphor of a quilt to describe the
product(s) of the qualitative researcher who pieces together a “set of representations” to
fit “the specifics of a complex situation” so as to create “psychological and emotional
unity – a pattern – to an interpretive experience” (Denzin & Lincoln, 2005, pp. 4-5).
While my threads bear the markings of Carspecken (1996), they have been woven
together in a way that I think Denzin and Lincoln would approve of – that is, to create
and enact moral meaning. The unifying pattern that holds this particular quilt together is
one of a critically expanding horizon that brings to bear on our understanding of dementia
care knowledge backgrounded norms and subjectivities, taken-for-granted roles and
significations, and unseen temporal distinctions. The intent has been to expand and
illuminate our horizon of meaning-making as it relates to dementia care knowledge such
that those who have been marginalized and oppressed can be re-centred.
To this end, this study of the culture of dementia care knowledge has critically
examined the ways in which dementia care knowledge is created, shared, and enacted. Its
findings about the how and why particular norms govern the knowledge culture have
given rise to the claims that oppression can be mitigated by normalized inclusiveness and
287
by uncovering and leveraging tacit dementia care knowledge. Moreover, its findings
point to a number of practice, education, and policy implications, which collectively
espouse the conditions for ethical discourse, acknowledge the temporal rift between
investigating and responding to responsive behaviors, and advocate for a concerted,
three-pronged approach to generating dementia care knowledge.
The findings, claims, and implications of this study are theoretically derived. That
is, the epistemological and axiological tenets that inform this study’s methodology have
been drawn upon extensively in rendering this presentation of its findings. It has been
suggested that such theoretical scholarship can inform both the field of dementia care by
identifying its unethical and oppressive aspects, and the broader field of KT where
scholars’ attention continues to concentrate on how social power manifests within and
affects a particular culture, and on how different forms of knowledge – including tacit
knowledge – can be re-cognized and integrated into the planning and implementation of
KT initiatives. An even more reflexive deployment of the CQR methodology in/as KT
science might entail turning the methodological lens upon researcher-knowledge user
relationships: henceforth, efforts to establish and maintain collaborative and integrated
relationships through iterative cycles of creating, refining, implementing, and evaluating
knowledge can benefit from data collection and analysis strategies that both illuminate
and democratize the power disparities that inhibit successful integration.
288
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293
Tables, Figures, and Appendices
Tables
Table 4.1 Four RAI-MDS Outcome Scales – SCU residents
Table 4.2: Data Collection
Table 4.3: Ten most prominent CQR Code-Categories (developed a priori)
Table 4.4: Ten most prominent Emergent Code-categories (developed in vivo)
Table 4.5: Sample ‘Meaning Field Reconstructions’
Table 4.6: Interview Topics
Table 5.1: Participants Enrolled
Table 5.2: SCU residents’ age, gender, time since admission, and diagnoses
Figures
Figure 4.1: Basic floor plan of SCU adjacent to central area of the main floor of the main
building
Figure 4.2: Basic floor plan of ADP adjacent to central area of the main floor of the main
building
Figure 4.3: Carspecken’s (1996) conceptual and analytic elements of a social act in CQR
Appendices
Appendix 5.1: Do you know who gets along? – a reconstruction of democratic validation
of co-constructing knowledge
Appendix 5.2: You spend more time with her than I do – a reconstruction of democratic
validation of co-constructing knowledge
Appendix 5.3: Normally I would have left her, but down here, – a reconstruction of
distortion and exclusion of knowledge
294
Appendix 5.4: I don’t believe that – a reconstruction of distortion and exclusion of
knowledge
Appendix 5.5: Nursing is only as holistic as you make it – a reconstruction of normalized
inclusion in knowledge exchange
Appendix 5.6: We’re working on developing a relationship with him – a reconstruction of
normalized inclusion in knowledge exchange
Appendix 6: Letter of Information & Consent Form
Appendix 7: Curriculum Vitae
295
Table 4.1: Four RAI-MDS Outcome Scales – SCU residents
Outcome Scale
Score Range
Cognitive Performance Scale (CPS)
5–6
No. of SCU
Residents in that
Range
19
A five-item scale that ranges from 0 (intact) to 6
(very severe impairment). Note that a CPS score
of 3 is equivalent to a 15 (out of 30) on the Mini
Mental State Exam.
3–4
13
0–2
0
Aggressive Behavior Scale (ABS)
0–3
16
A 4-item scale that ranges from 0 (no
aggression) to 12 (verbally and physically
aggressive and/or socially inappropriate or
disruptive).
4–8
8
9 – 12
8
0–2
8
3–7
17
8 – 14
7
< 10
1
10 – 14
6
15 – 19
9
20 – 24
10
25 – 28
6
Depression Rating Scale (DRS)
A seven-item scale that ranges from 0 to 14; a
score of 3 or more may indicate a potential or
acute problem with depression.
Activities of Daily Living – long form (ADL
long)
A seven-item scale ranges from 0 to 28; higher
scores indicate more impairment of selfsufficiency in ADL performance.
296
Table 4.2: Data Collection
Data Source:
Specialized Care Unit
Adult Day Program
field visits
25
9
observation
81 hours
65 hours
Stage 1
(Apr 12 –
Jul 31 2012)
–
–
–
average 3.25 hours / visit
–
observations started as early as
6 am and ended as late as 1130
pm)
–
informal
interviews
observed &
recorded team
meetings
in-depth
interviews
–
–
–
average 7.25 hours / visit
–
observations started as early
as 730 am and ended as late
as 7 pm)
–
included the collection of
discursive artifacts (i.e.,
documents) used in providing
dementia care
3
a male resident’s spouse;
another male resident’s
daughter; six with staff (1
physician, 2 RPNs, 4 PSWs)
1
–
Recreation, RN, RPN
‘Team Care Meeting’ that
included a male resident’s
daughter and six staff
–
range 2.5 – 7 hours
all days of the week, including
five weekend visits
included the collection of
discursive artifacts (i.e.,
documents) used in providing
dementia care
8
–
–
range 2.5 – 8 hours
all days of the week,
including two weekend field
visits
6
Team ‘check-ins:’ 3 among
nursing staff, 3 among
recreation staff
1
–
Someone from the SLT who
was about to retire)
1
–
male client’s spouse
Stage 2 – Preliminary Reconstructive Analysis (July 25 – Aug 7 2012)
field visits
Stage 3
(Aug 7 –
Sept 12
2012)
4
4
observed &
recorded team
meetings
0
3
in-depth
interview
7
–
–
A.DoC, 1 RN, 2 RPNs, 2
PSWs, LE
Rec team check-in; a Team
Care meeting; a Behavioral
Committee meeting)
3
–
Recreation, RN, RPN
Return to Stage 2 – Continued Reconstructive Analysis (Sep 12 – Dec 11 2012)
297
SLT focus group (n = 10)
member-checking interviews
7
5
(conducted over 3 field visits,
LE, RPN, 5 PSWs
4 PSWs, 1 RPN
mid-Dec 2012)
# of months in the field 9 (*footnote: 9 includes the 3 month analytic hiatus.
Stages 1-3 essentially lasted 6 months; I
then returned approx. 3 months later to
TOTALS
conduct 3 days worth of member-checking
interviews)
field visits
45
hours of observation
146
informal interviews
11 (2 with family caregivers)
observed & recorded meetings
10
(in-depth & member-checking)
(12 & 12 = )
interviews
24 (1 with family caregiver)
focus groups
1
Legend: SLT = senior leadership team; A.DoC = assistant director of long-term care home; RN = registered
nurse; RPN = registered practical nurse; PSW = personal support worker; LE = life enrichment
staff
–
–
298
Table 4.3: Ten most prominent CQR Code-Categories
& their respective Sub-codes (developed a priori)
Code-category
o Sub-code(s):
99.01 – bid to shift the
setting
o 99.01.1 – successful
attempt
o 99.01.2 – failed
attempt
Description / Comment
Indicative of power
dynamics: a successful bid
shows that the person has
power to shift the setting; a
failed attempt can indicate
that a person is
overpowered by another
participant.
Sample(s)
o
o
o
o
99.02 – consenting to a
claim or decision
o 99.02.1 – coercive
conditions
o 99.02.2 – non-coercive
conditions
o 99.02.3.1 – consenting
for psychosocial
reasons
o 99.02.3.2 – … for
strategic reasons
o 99.02.3.3 – … for
material reasons
o 99.02.4 – notconsenting
Used to discern seemingly
coercive from non-coercive
situations; in cases of the
latter, the reason why
someone seemed to consent
was coded (i.e., what was in
it for them).
99.03 – Observed
embodiment
I came to this study with an
interest in knowing when
and how caregivers seemed
attuned to clients’/residents’
o
o
o
o
A physician shifts the
conversation setting from small
talk to starting the task at hand chart reviews (successful bid).
A family member during a team
care meeting shifts the setting
from her father’s evening care to
her father’s issues with weight
loss and gain (successful bid).
One resident succeeds in
engaging another resident in
polite conversation, but fails to
clearly articulate a question
about finding something she is
looking for (failed bid).
A PSW who is charting
overhears the RPN and physician
talking about a particular
resident, offers input in the form
of a comment, but her comment
is not acknowledged (failed bid).
A resident remains seated
because a PSW’s hand on her
shoulder prevents her from
standing (coercive).
An RPN from one shift explains
to me that she gave up struggling
with the staff from another shift
regarding the seating plan in the
dining room (psychosocial
rationale for consenting).
While administering medications
during lunch, an RPN allows a
resident to stand and leave the
dining area despite not being
done her meal yet; the RPN
appears too busy with her task at
hand to be able to redirect the
resident back to her meal
(strategic consent).
A family member explains that
even though some of the SCU
residents do not respond to her
words, some do with their eyes
299
embodied selfhood – i.e.,
when and how did was
body language interpreted?
Morever, a Carspeckian
(1996) analysis understands
that communicative acts are
“initially entirely holistic,
tacit, and embodied” (p.
125).
99.05 – Tracking the
Interviewer
o 99.05.1.1 – asking a
question
o 99.05.1.2 – seeking
clarification
o 99.05.2.1 – active
listening
o 99.05.2.2 – bland
response
o 99.05.2.3 – nonleading leads
o 99.05.2.4 – low
inference paraphrasing
o 99.05.2.5 – medium
inference paraphrasing
o 99.05.2.6 – high
inference paraphrasing
o 99.05.03 – memberchecking
This is a reflective practice
that serves to monitor not
only my own questionasking, which should be
concrete, non-leading, an
‘domain opening,’ but these
codes also allow me to
monitor my ‘response
work,’ which Carspecken
(p. 158-161) describes as
“much more important than
the wording of [my]
questions.” A reflective
exercise to conduct is to
consider the extent to which
I used the appropriate kind
of response at the
appropriate time.
o
o
o
o
o
99.07 – Paradigmatic
axis
o 99.07.1 – contrast or
opposition
o 99.07.2 – hierarchical
inclusion
o 99.07.3 – reference to
As part of the pragmatic
horizon of communication,
the paradigmatic axis
includes communicative
structures (such as specific
words and expressions,
metaphors, implied
o
o
… I just like to humor them a bit,
and tease them. Some of them
respond.
A field note excerpt: a particular
female resident seems intrigued
by some other residents’
behaviors (singing aloud,
hollering loudly); it is as if she
wants to but cannot engage the
other residents; rather, she seems
to spend her time paying close
attention to what these others are
doing, often following from a
distance.
The questions I asked (in the
context of either an informal or
in-depth interview) were usually
topic-based. E.g., Something I’ve
heard people talk about is
‘appropriateness’ – can you talk
about that for a minute? (asking
a question)
I might encourage the respondent
with Uh-huhs and Mm-hmmms,
by saying, I see … or, Tell me
more about that. (active
listening; non-leading leads)
I paraphrase a family member’s
sentiment when I infer from her
statement that the PSW she has
hired privately seems to be
welcomed and accepted and
appreciated by the SCU staff
(low inference).
In a member-checking interview,
I solicited input and reactions to
a high-level inference regarding
the seemingly blurry line
between ‘going with a resident’
wherever their current state of
mind takes them, and using
theapeutic lies to keep a resident
calm (member-checking, high
inference).
A PSW comments that caring for
residents in a SCU is not like
they teach you at school
(contrast).
Examples of semantic units that
are particular to the SCU
include:
300
o
o
o
something virtual
99.07.4 – semantic
unit
99.07.5 – similarity or
complementarity
99.07.6 – use of
metaphor
contrasts, implied
similarities) that constitute
meaning. Additionally, tone
of voice, specifically placed
emphasis, and facial
expressions are all to be
taken into account in
reconstructing the meaning
intended with/in a
communicative act. (p. 106110).
o
99.08 – Power at play
o 99.08.1 – coercive
persuasion
o 99.08.2 – charming
persuasion
o 99.08.3 – contractual
persuasion
o 99.08.4 – normative
persuasion
99.12 – roles and
identities
o 99.12.1 – identity
claim
o 99.12.2 – reference
group
o 99.12.3 – roles
Carspecken (p. 129-130)
follows “Weber’s famous
typology of power relations
[that] divides interactive
power into coercion and
three types of authority:
charismatic, legal-rational,
and traditional.”
Carspecken’s adaptation of
this typology reconceives
‘traditional’ power as
‘normative-evaluative’
power. Coercion usually
involves the threat of
sanction or the use of
physical or psychological
force; charm begets loyalty;
and contractual power
entails (often tacit)
obligations to reciprocity
(e.g. You did that for me,
I’ll do this for you).
Since, in a Carspeckian
analysis, “all
communicative acts take
place within social relations
… actors must adopt roles
… [and] must share
understandings about the
social context of the act for
the act to be
communicative” (p. 104).
appropriate care
transitional unit
counting the barbs
[meds],
o a PSW asking another
PSW Who do you have
today?
o Staff saying to residents,
Sit down.
o Staff referring to
residents who require
assistance eating as
feeders.
o All behavior has
meaning.
Staff frequently compared
working in a SCU to parenting,
often citing the similarities
among the two care domains.
A PSW is reprimanded by [a
manager] about not completing
her computerized flow sheets
(coercive power – implied threat
of sanction);
… henceforth, the PSW is to
leave the floor at a particular
time (before the end of her shift)
to do her charting (normative
power).
A recreationist asks a resident
into joining her on the dance
floor during a music activity
(charm).
A PSW suggests to a resident
that if she gets dressed and
comes to breakfast, she will be
able to see her daughter later
(contractual).
o
o
o
o
o
o
o
o
o
A PSW describes her laid back
approach and propensity for
telling jokes (identity claim)
A recreationist describes how on
some shifts, there are some staff
who are just here for the
paycheck, whereas others are
here because they like and are
good at caring for people living
with dementia (reference group)
301
Identity claims, and claims
to belonging to a particular
group are indicative of that
social context. Moreover,
roles, as “a complex mode
of activity that actors
recognize as having some
unity” (p. 136), are useful in
helping understand and
predict “what basic form
actions will take as long as
this player is acting out the
same role” (p. 136).
99.15 – interactive syntax As the temporal axis within
o 99.15.1 – reference to the pragmatic horizon, an
shared past
interactive syntax refers to
o 99.15.2 – … shared
“the location of [a
present
communicative] act within
o 99.15.3 – … shared
the participants’ awareness
future
of prior events and within
their shared expectations of
Note that the ‘interactive
events about to come. … As
syntax’ is described in
all acts of meaning are
more detail at the end of
contextual” (p. 105-106),
section three in this article. this temporal element helps
define that intersubjective
context by illuminating the
assumptions and
expectations of the
interacting participants.
99.16 – reference to ‘the
system’
99.17 – knowledge
exchange
o 99.17.1 – socialization
o 99.17.2 –
externalization
o 99.17.3 –
internalization
o 99.17.4 – combination
In anticipation of stages
four and five (system
relations), I began
immediately to code data
that made reference to the
broader system factors that
participants invoked when
contextualizing their
situations or claims.
As my research aim focused
on the creation, exchange,
and application of
‘dementia care knowledge,’
I began immediately to
code data that seemed to
indicate when and how was
shared. These codes are not
Carspeckian; rather, they
reflect Nonaka’s (1994)
o
An RPN explains that when she
hears other staff speaking gruffly
to a resident, her role is to step in
and to explain to that staff that
such behavior will not help and,
more likely, it will exacerbate the
situation (role claim).
o
Two PSWs reflect aloud on what
it was like some months ago
when another particular PSW
worked with them (and how hard
that was because this other PSW
did not ‘fit well’).
An RPN comments on the
physical/built environment,
particularly the enclosed patio
area outside, suggesting that
since [the organization] moved to
this new building, SCU residents
are afforded more opportunity to
go outside (shared present)
On several occasions, staff
wondered aloud in anticipation
of ministry inspections that were
bound to occur (shared future).
A [manager] contexualized the
term ‘transitional unit’ within
broader system pressures to deal
with the long list of people
waiting to be admitted to the
SCU.
An RPN says that the Ministry
says we’re supposed to mix
feeders with non-feeders, but it’s
not always very practical.
A family member has an
exchange with a privately hired
PSW about the best ways to help
her husband up out of his chair: I
coax him up by holding his
blanket out in front of him, then
back up as he reaches for it
(socialization).
An RPN confers with a
recreationist about how to codify
o
o
o
o
o
o
302
typology wherein
socialization refers to tacit
knowledge being modeled
by one participant and taken
up by another;
externalization refers to the
explication of seemingly
tacit knowledge;
internalization refers to the
process of converting
explicit and/or formal
knowledge into tacit knowhow; combination refers to
formal knowledge being reexplicated and re-inscribed
as new explicit knowledge.
o
o
a particular resident’s anxiety
(externalization)
Referring to an instruction
manual, an RPN
mentors/instructs a PSW about
how to do the computerized
charting (internalization /
socialization).
A family member expresses to
me her observation that during a
team care meeting, she was
provided with lots of information
verbally, but no one (except she
herself) took any notes; she
thought that the
home/organization should
provide some sort of meeting
summary/report (combination).
303
Table 4.4: Ten most prominent Emergent Code-categories and their respective Sub-codes
(developed in vivo)
Code-category
o Sub-code(s):
01.0 – human resources
o 01.1 –
workarounds
03.0 – public relations
Description / Comment
These data reference HR
issues. Often, staff and
families would comment
about there not being
enough staff/HR to
provide adequate care;
union issues were
included here as well.
The code ‘workarounds’
refers to caregivers’
efforts to work around
existing rules and
regulations (and
subsequent HR shortcomings), i.e., ‘rule
bending.’
The ADP and the SCU
staff, and indeed the
organization as a whole,
often focused on
maintaining positive
public relations and a
favorable reputation.
Sample(s)
o
o
o
o
o
04.0 – responsive
behaviors
o 04.1 – trigger of a
responsive
behavior
I was interested in trying
to catalog what
responsive behaviors
manifest, what seemed to
trigger what kind of
o
staffing compliment; a quality
improvement initiative that piloted
the addition of an additional five
hours of PSW care on day shift;
flexible break times (HR
considerations)
An RPN asked me to monitor the
common area while she left the
floor for a couple minutes to attend
to some paper work; PSWs leaving
their computerized charting
incomplete because their shift is
technically over; staff allowing a
male and female resident to hold
hands if/when there were no family
members around to see/complain
about it (workarounds).
A PSW comments that after the
annual inspection, things will go
back to the way they were – they
[management] just wants to get it
so it looks like things are perfect
when it’s not.
PSWs expressed concern that the
care they provide might be
perceived by others as abusive, as
forceful.
Management and staff struggled
with having to ‘grandfather in’
some families/residents regarding
the relatively new rule that the SCU
is a transitional unit – some
families were adamant about not
wanting to be transitioned off the
SCU when the person living with
dementia was technically no longer
eligible to stay on the SCU, but
rather than upset the family, the
staff acquiesced.
Staff had several stories of being
punched, kicked, pinched; of
residents resisting care, especially
baths, of heightened sexuality, and
of socially inappropriate behavior
304
o
04.2 – intervention
to a responsive
behavior
responsive behavior, and
also how staff and/or
family subsequently
intervened to mitigate
the responsive behavior
and prevent it from
reoccurring.
o
o
06.0 – personal care
o 06.1 – feeding
o 06.2 – toileting
o 06.3 – dressing
o 06.4 - grooming
09.0 – non-dementia-related nursing
care
o 09.1 – med administration
o 09.2 – RAPs
o 09.3 – documentation
o 09.4 – skin or wound care
o 09.5 – other
11.0 – reference to
dementia care training or
education
o 11.1 – Gentle
Persuasive
Approach
o 11.2 – P.I.E.C.E.S.
o 11.3 – U-first!
12.0 – twenty-eighties
o
o
such as hollering at other residents
and/or swearing (responsive
behaviors)
(triggers include) the time of day –
i.e., ‘sun downing;’ a
misunderstanding between
residents; an inappropriate
approach by a staff caregiver;
medical and/or physical discomfort
(responses include) redirecting
residents, re-approaching at a later
time, having someone else
approach the client or resident;
anticipating and removing the
trigger (e.g., knowing that someone
gets very upset when she thinks she
has not yet eaten a meal, staff can
either bring her some food or
reassure her that a meal is about to
be served.
Many of the registered nursing staffs’ and PSWs’
daily care routines focused respectively on basic
nursing care and on the provision of personal care;
these codes helped isolate those data.
‘RAPs’ are ‘resident assessment protocols,’ which
are ‘triggered’ by data inputted into the
computerized documentation system (RAI –
resident assessment instrument); ‘doing a RAP’
entails creating and monitoring care plan goals to
mitigate or treat whatever what triggered by the
daily documentation.
These provincial
initiatives had, prior to
this study, been
introduced to the SCU
and ADP staff. To assist
in understanding what
kind of impact this
training had, I coded any
mention of these
initiatives.
This is a semantic unit
(i.e., an expression
particular to the SCU
and perhaps to LTC) that
characterizes a small
proportion of family
o
o
o
o
Although there were both positive
and negative valuations of these
programs, they were more often
than not characterized as a waste of
time.
An RPN stated that for some who
attend such education workshops,
the information goes in one ear and
right out the other.
There were several documents /
flyers posted in staff areas listing
the tenets of these programs.
Such family members were
compared favorably in contrast to
families who hardly ever visit, but
conversely, PSWs sometimes spoke
of having to favor particular
residents over others so as to not
305
15.0 – fall prevention
members (about 20%)
who visit the SCU often
(about 80% of the time).
I.e., 20% of family
members are here 80%
of the time.
A number of care
practices seemed to be
premised on fall
prevention.
o
o
o
o
19.0 – person-centred
care
o 19.1 – what seems
to not be PCC
While I appreciated that
data thus coded would
require some ‘normative
reflection’ on my part to
tease out how/why I saw
some practices as
‘person-centred’ or not, I
tried also to code
participants’ sentiments
about what was / was not
person centred.
o
o
o
o
25.0 – dementia care
knowledge
This was a somewhat
generic code used to
identify data that I felt in
some way reflected the
o
upset the frequently visiting family
members.
On another hand, recreation staff
spoke of the benefits of such
frequent interactions with these
’20-80s.’
Notes were often posted in the SCU
chart room about keeping bed rails
up at night.
A common semantic unit – asking a
resident to Sit down – was
consistently attributed to fall
prevention.
The paperwork and medical
monitoring that is mandated after a
fall is characterized as onerous and
as time-consuming, and thus as
added incentive to prevent falls.
An RPN explains to me the
profound effect the staff has on
residents as humans, thus
conveying a sense that relating to
residents is a fundamental element
of dementia care work.
A PSW heard me humming a song,
asked what I was humming, then
showed me to a resident who is a
great singer. The PSW then
charmed the resident into singing a
song for me; the resident did so,
and her spirits subsequently seemed
elevated.
What seemed to not be personcentred care: assertions that some
PSWs rush residents through
activities of daily living, especially
getting dressed.
An example of a care practice that
is not clearly right or wrong is
joking with residents – on one
hand, the use of humor and levity
indeed seemed person-centred, but
on the other hand, the jokes were
funny to the PSWs seemingly
because the jokes went over the
heads of the residents to whom the
jokes were directed.
A physician described to me that
dementia care simply entails two
complex objectives: providing
assistance with the activities of
306
generation or application
of dementia care
knowledge. There were
times too during
informal interviews that I o
raised the topic of
‘dementia care
o
knowledge’ (as a central
interest of the study) so
as to invite participants
to share whatever came
to mind in that regard.
daily living, including the provision
of meaningful activities, while also
preventing and responding to
responsive behaviors.
A nurse practitioner refers to an
iPad to check certain drugs.
Two PSWs name for me a handful
of residents who they can tell just
aren’t there, but maintain that it is
not terribly difficult to care for
them if you know what they need
and what they like.
307
Table 4.5: Sample ‘Meaning Field Reconstructions’ from the Stage One Primary Record
A: Reconstructing possible meanings about the practice of keeping clients and residents seated.
Context:
It’s 8:10pm and I am standing at the SCU nursing station, observing the activity room that is
within my purview. Several residents are seated in the activity room; one PSW is present too,
seemingly with the task of monitoring and/or engaging residents. One male resident who had just
been standing at the nursing station now mills about the activity room. He seems both restless and
depressed, as indicated by his body language (frowning, tearful; putting his head down on the
counter, hitting his own head; pacing). Note that ‘MR’ denotes ‘male resident;’ ‘OC’ denotes
‘observer’s comment.’
Field note excerpt:
PSW is rotating from MR to MR, trying to keep them seated. He dances with one of the MRs.
Then seats him. Then asks the other one to sit. He grabs a reader’s digest to give to a MR (OC:
seeming to hope that it’ll keep him occupied and seated for a moment). The MR tosses the digest
aside. The PSW is now intercepting the other MR. He seats him this time at a table, in a chair
with arms, pushed quite in. The MR goes to stand. The PSW’s hands are on his shoulder to seat
him again. So’n’so, please. Please. What do you want? (OC: kind voice in that it’s gentle, not
angry, but clearly a hint of being exasperated, as if I hear a tone of exasperation when the PSW
says the MR’s name). The MR goes to stand again; the PSW seats him again: he’s standing
behind and off his right shoulder, his right right hand under the MR’s arm, his left hand on MR’s
shoulder. He seats him.
Meaning Field Reconstruction:
Sitting rather than moving or dancing about is the PSW’s preferred state for the residents AND
such residents who’re restless don’t stay seated for long AND/OR having them sit rather than
walk/dance about is a fall-prevention strategy AND such a practice of constantly trying to seat
someone can make a PSW feel exasperated AND such exasperation manifests as an altered tone
of voice AND/OR as physical restraint (hand on shoulder; chair pushed quite far in).
B: Reconstructing possible meaning about what makes someone a good worker.
Context:
As she sat in the SCU chart room on her meal break, a full-time PSW agreed to participate in an
informal interview. In seeking some clarification about a remark I had heard her make earlier, I
said to her: You commented earlier that [a particular male PSW] is a good worker and I just
wondered, what strikes you as a good worker? Her response:
Quote:
PSW: He's gentle. He's organized. He doesn't just stand around and you have to say go do this
one or whatever – some of them you have to tell them, or they'll just stand there, even though
they've been down here hundreds of times, so you have to say to them while you can do this one
here, they’ll go…… but [that PSW] he's just, he's gentle with the residents, he is so gentle.
308
Meaning Field Reconstruction:
Being gentle during care provision is a preferred/ideal characteristic AND there are, as an implied
contrast, staff who aren’t gentle AND with respect to the organization, there’s an expectation that
a PSW knows what s/he is supposed to do, what the care routines are, what the residents’
needs/preferences are AND yet some part-time staff don’t know this AND if part-timers don’t
know the routines (for legitimate reasons) they should only have to be told once or twice what to
do AND there are some staff who must be told OR monitored OR tolerated over and over again.
C: Reconstructing possible meanings about how PSWs recognize dementia.
Context:
In the SCU chart room, I was speaking with two PSWs about whether or not it is ever appropriate
or necessary to not be honest with a resident. I explained that an RPN had recently said to me that
I might think it’s mean that she would remind [a resident] that his wife’s dead, but he’s someone
who can handle it. At once, both PSWs said, Yeah, and I subsequently sought an explanation.
Quote:
PSW: Well, because we know who can handle it and we know who’s just like not here. At all. [A
particular female resident] is not here. There’s no way – like there’s things that come out of her
mouth and we kind of just ask – like we take her back to that time and we ask her, like what
happened and everything’s okay. And sometimes she can give you an answer. Sometimes she
doesn’t. [Another female resident], she is up and down. I go by how she responds to me. If she’s
back to when she was like 10 years old, then I’ll take her back there. I don’t mind. [Another
female resident] is usually never here. Very rare.
Meaning Field Reconstruction:
One way of categorizing residents is a judgment of whether or not the resident “is here” or not
AND the criterion for ‘being here or not’ is that what someone says makes sense AND that (being
here or not) can change from day to day OR moment to moment AND the demeanor / state-ofmind of residents is something that the PSW(s) can perceive AND/OR such states of mind can
change quickly depending on how someone approaches them.
309
Table 4.6: Interview Topics
Initial set of topics:
1. the notion of ‘appropriateness’ – i.e., what makes someone (in)appropriate for
providing dementia care?
2. what ‘dementia care knowledge’ entails;
3. residents’/clients’ table mates at meal time;
4. new residents; different dementias;
5. force cf. neglect;
6. there being (or not) enough for residents/clients to do;
7. ‘reality orientation’ cf. ‘validation therapy;’
8. mentorship;
Interviews often included an instance or two of member-checking; topics ‘checked’
included:
9. a ‘for instance’ I had observed where staff were trying to keep residents seated;
10. a comment made about particular staff members ‘setting the tone’ for a particular
shift;
11. a comment about PSWs not being respected by registered staff;
12. a comment I had heard about some PSWs not being gentle; and
13. a comment to me about the benefits of having male PSWs.
Additional topics that emerged during the interview phase:
impressions of an on-going quality improvement initiative (i.e., the addition of a 0.5
full-time equivalent PSW to the day shift in the SCU);
the impact of a specialized consult team to whom a referral is occasionally made to
310
problem-solve particularly difficult resident behaviors;
the notion of educating families and/or managing their expectations;
flexibility in work rules and routines;
the extent to which care practices should be trans-disciplinary.
311
Care Recipients
(i.e., non-staff)
Staff
Senior
Leadership
Team
LTC SCU Site:
Community
ADP Site:
Residents
6 (4 male)
n/a
6
Clients
n/a
42 (20 male)
42
Family Members
7 (1 male)
1
8
sub-total: non-staff
13 SCU
43 ADP
PSW
31 (2 male)
8
39
RPN
4
3
7
RN 2
3 (1 male)
1
4
Nurse Practitioner
1
n/a
1
Physician
2 (both male)
n/a
2
Life Enrichment
Staff
1
8
Social Worker
1
2
3
Dietitian
2
n/a
2
Physiotherapist
2 (1 male)
n/a
2
Housekeeping
2
0
2
Table 5.1: Participants Enrolled
Total
56 nonstaff 1
n/a
9
71
sub-total: point of care staff
Senior
Leadership Team
(SLT)
49 SCU staff
point-ofcare
staff3
22 ADP staff
CEO
1 (male)
1
2
2
DOC LTC
1
1
Assistant DOC
LTC
1
1
Director ADP
1
1
Directors of
4
4
Administrators 4
n/a
n/a
312
Operations 5
Receptionist
2
2
sub-total – SLT
12
12 SLT
Total number of Participants:
139
Acronyms: n/a – not applicable; LTC – long-term care; SCU – special care unit in LTC site; ADP – adult day
program in community site; PSW – personal support worker; RPN – registered practical nurse; RN –
registered nurse; CEO – chief executive officer; DOC – Director of Care; SLT – Organization’s Senior
Leadership Team
Notes: 1 – Family members of two of the residents from SCU and eight of the clients from the ADP only
consented to the resident/client being observed, not interviewed.
2 – Of the 3 SCU RNs, 1 worked part-time as the education facilitator and another worked full-time as the
RAI coordinator.
3 - All but three staff members agreed to be observed and/or interviewed; one agreed to be observed but not
interviewed; 2 agreed to be interviewed but not to be observed.
4 – Two Administrators were enrolled as the first retired during the first phase of data collection.
5 – Included directors of Finance, Communication, and Volunteer Services, and a Liaison to the
[Organizational Foundation]
313
Table 5.2: SCU residents’ age, gender, time since admission, and diagnoses
Women:
Gender:
Men:
n = 21
n=11
mean: 81.5 years old
mean: 81.4 years old
standard deviation: 9.2
standard deviation: 8.2
range: 62-95
range: 66-91
mean: 24.7 months
mean: 27.2 months
standard deviation: 21.5
standard deviation: 11.5
range: 3-84
range: 15-45
Age:
No. of months since
admission to SCU:
Primary dementia-related diagnoses included:
Alzheimer’s disease with early onset (n=1)
Alzheimer’s disease (n=14)
Dementia in Alzheimer’s disease, unspecified (n=1)
Dementia in Pick’s disease (n=5)
Mixed cortical and subcortical vascular dementia (n=1)
Other specified degenerative disorders of the nervous system (n=1)
Other vascular dementia (n=1)
Stroke, not specified as hemorrhage or infarction (n=1)
Unspecified dementia (n=7)
Secondary dementia-related diagnoses included:
Anxiety disorder (n=1)
Depressive episodes (n=4)
314
Dysphasia and aphasia (n=4)
Parkinson’s disease (n=1)
Peripheral vascular disease, unspecified (n=2)
Recurrent depressive disorder, unspecified (n=5)
Schizophrenia, unspecified (n=1)
Stroke, not specified as hemorrhage or infarction (n=4)
Most prevalent secondary diagnoses included:
Arthrosis (n=5)
Atherosclerotic heart disease (n=6)
Benign hypertenstion (n=19)
Cataract (n=6)
Hyperlipidaemia (n=6)
315
Figure 4.1: Basic floor
plan of SCU adjacent to
central area of the
main floor of the main
the
north
wing
9 residents’ rooms
= enter/exit via
keypunch lock
9 residents’ rooms
washroom
servery
large
dining
activity
great room
with access
stairs elevator
to salon,
tuck shop,
entrance/exit to SCU
enclosed
outdoor
area
chapel,
nursi
ng
med
conference room
room
den
receptio
n
and misc
staff areas
chart room
6 residents’ rooms
Snoozelin room
the west wing
8 residents’ rooms
shower room
administrative
offices
acces
s
to
tub room
main entrance
to
LTC home
316
access to
LTC home
Figure 4.2: Basic floor
plan of ADP adjacent to
central area of the main
floor of the main building
library
parking
lot
social
work
conference
room
parking
programlot
room 3
team room
(recreatio
n)
spa –
tub
and
Director’s
offices
washroom
nurses’
atrium
room
reception
main
entrance
to ADP
coat room
program
room 2
program
room 1
wash-
wash-
rooms
rooms
317
Figure 4.3: Carspecken’s (1996) conceptual and analytic elements of a social act in CQR.
LEGEND:
1. Pragmatic horizon
2. Interactive temporal syntax
3. Paradigmatic (communicative) axis
4. Objective, subjective, and normative claims
5. A claim’s relative degree of being back- or foregrounded
6. The hermeneutic circling processes involved in
analyzing and re-presenting then reading and recognizing a critically interpreted social act.
Adapted from the cover of Carspecken’s 1996 book, Critical Ethnography in Educational Research – A
Theoretical and Practical Guide. Routledge: New York, NY. (Book design by Charles B. Hames).
318
Appendix 5.1: Do you know who gets along? – a reconstruction of democratic
validation of co-constructing knowledge
Context. Four recreationists are holding their 12:45 p.m. check-in meeting in preparation
for the afternoon activities. They are sorting the day’s clients into three groups, and here,
specifically, they are determining which relatively high-functioning clients could/should
attend the music program. In the following quote, MC and FC respectfully signify a male
and female client.
Rec1: MC would be good. He’s quite alert today. FC, I think would like [the
live entertainment booked for the afternoon]. Will she sit though? I don’t know
her. She’s new to me.
Rec5: Depends on her mood.
Rec6: Sometimes –
Rec5: It depends.
Rec1: She’s in a good mood.
Rec6: Yesterday she sat for a while and then all of a sudden she got up and she
was going and she was heading to the bathroom. She didn’t have her walker and I
was chasing her and – but
Rec1: She was really good this morning. Do you know who gets along is her
and [another FC].
Rec4: [Repeats the latter FC’s name], yep.
Rec6: Let’s try her.
Rec1: Put [the two FCs] together. Put them side-by-side because then they’ll just
chatter. They talk the whole morning.
319
Rec4: Do you know who was really good with [a particular MC] in the afternoon
is [a different FC].
Rec1: Really?
Rec4: Because she talks – yeah. Because she talks talks talks talks talks and [the
MC] doesn’t get up. He listens. He sits there while she’s talking.
Rec1: Oh really.
Rec4: It’s a wonderful combination. So you don’t get the pacing going on in the
afternoon.
Rec1: Because he paced all morning.
Rec4: I know.
The following validity reconstructions delineate how the recreationists justify coconstructing strategic knowledge to inform decisions to try pairing particular clients:
Possible Objective Claims:
Foregrounded:
o Strategically seating clients in particular pairs can result in their becoming
engaged in socialization.
Backgrounded:
o A client’s mood can be observed, and can predict whether or not s/he will
tolerate or enjoy a particular program.
o The recreationists, collectively, construct a shared sense of who gets along
and who does not get along.
More backgrounded:
320
o Pairing clients who do not get along is likely to result in at least one client
becoming agitated.
o The recreationists are / will be busy (during the program) and thus having
many clients to monitor and/or keep seated can be difficult.
Possible Subjective Claims:
Foregrounded:
o It is a relief to observe someone who paces a lot socializing with another
client instead.
Backgrounded:
o It is stressful to have to “chase” down a pacing client, especially if s/he is at
high risk of falling.
More backgrounded:
o Pacing is presumed to indicate that the client is agitated.
Possible Normative Claims:
Somewhat foregrounded:
o Recreationists should make an initial decision regarding which activity a
client should attend that afternoon (i.e., on behalf of the clients).
o The recreationist should base their decision, in part, on the mood of the client;
that is, if the activity might further agitate the client, the client should be
assigned to another activity that will not exacerbate agitation or a bad mood.
Backgrounded:
o Pacing is a symptom of dementia that should be addressed.
321
o The recreationists should base their decision on past experience of what the
client does or does not enjoy.
o The decisions about which programs particular clients should attend should be
shared among the recreationists and should be democratic in nature.
322
Appendix 5.2: You spend more time with her than I do – a reconstruction of
democratic validation of co-constructing knowledge
Context. A RPN and a recreationist (Rec, in the excerpt below) from the SCU were
sitting together in the SCU chart room. The RPN invited the recreationist to help her
complete a standardized depression assessment form for one particular female client.
RPN: … you know the background here for [this female resident]. It’s just that
we want her to have more quality of life. I was kind of concerned about drugs
and whatnot, you know, what she’s on, so this is a Cornell scale for depression, so
have you every heard of it, seen it?
Rec: I’ve heard of it.
RPN: Yeah. So between the two of us I just wanted to make sure it was fair to
[this female resident] that I’m not over judging or under judging her. So her
anxiety… does she have anxious expression, ruminations and worrying. I felt she
does.
Rec: Yes, definitely.
RPN: One is mild or intermittent. I wouldn’t say it’s severe. You know, if you
disagree, just tell me, because you spend more time with her than I do.
Rec: No, I would say that’s right. I was thinking it, at times, might be a little bit
more severe.
RPN: I’ll put one to two…one to two.
Rec: When she’s feeling really anxious she’s pretty difficult to…
323
RPN: Oh, yes. Sadness, I myself thought sad expression, sad voice and
tearfulness, at times she’s looks extremely sad to me. Lack of reactivity to
pleasant events. Has that changed?
Rec: Lack of… I have to think about that… Lack of… I’m not following it.
RPN: Does she react to, if you say to her, Come on, we’re going to bake…
Rec: Oh yeah, oh yeah.
RPN: She still onboard for that?
Rec: Yes, yes.
RPN: OK, so I would say that’s absent. Her irritability, easily annoyed and
shortempered.
Rec: Definitely.
RPN: I think she’s a severe.
Rec: Yes.
RPN: I think the other residents get to her…
Rec: Very low tolerance.
RPN: So the behavioral disturbance: her agitation, restlessness, hand-wringing,
hair pulling, I’m assuming this is on herself, but I know that she gets restless.
Rec: Gets restless for sure.
RPN: Yeah. I would say it’s mild at this point … but just say no if you don’t
agre-Rec: Yeah, no, no, for sure.
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Focused in particular on the line, if you disagree, just tell me, because you spend more
time with her than I do, the validity reconstructions below delineate how the RPN
justified soliciting the recreationist’s input.
Possible Objective Claims:
Foregrounded:
o The recreationist spends more time with the female resident in question than
does the RPN.
Backgrounded:
o The RPN supposes that the recreationist may have a different perception about
the resident than she.
Possible Subjective Claims:
Foregrounded:
o The RPN is concerned that an assessment of this resident’s dementia based on
her judgment alone might not be accurate or fair.
o The recreationist feels safe enough in this dialogue to acknowledge that she
does not understand what one of the assessment items means.
Backgrounded:
o The RPN wishes for the recreationist to feel included, valued, and free to
disagree in co-constructing this assessment.
Possible Normative Claims:
Foregrounded:
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o The assessment of a resident’s depression should be fair – i.e., made by one or
more staff members who can confidently judge depression based on
familiarity of and experience with the resident.
o Because the recreationist spends more time with the female resident than does
the RPN, the recreationist should have input into the scoring of the resident’s
depression.
Backgrounded:
o Nursing and recreation staff should collaborate to co-construct an assessment
of a resident.
o Standardized assessment tools such as this depression scale should contribute
to – and perhaps form the basis for – the establishment of knowledge
constructions.
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Appendix 5.3: Normally I would have left her, but down here, – a reconstruction of
distortion and exclusion of knowledge
Context. In speaking with a younger, less experienced, part-time PSW who works on
other floors in the home as well as in the SCU, I (RTD in the dialogue below) raised the
topic of validating a person with dementia’s current state of mind even when that state of
mind reflects, by our standards, a distorted reality. I had spoken with the same PSW and
an RPN two days prior about “validation therapy” (i.e., going along with the resident’s
frame of mind, whatever that might be) versus “reality orientation” (i.e, rationalizing with
the resident and cuing him/her back to “our” reality). In speaking with the PSW on this
occasion, I asked if she had any more thoughts on that topic. In response she reflected on
her experience of trying to bath a female resident earlier that day; the encounter did not
go well – it resulted in the female resident being resistive and physically aggressive. The
PSW bore three scratches on her arm from the encounter.
RTD: What happened this morning? [I motion to her arm].
PSW1: [A FR] was not impressed with having a bath so she attacked me and
grabbed my arm–
RTD: Tell me – if you can go back a minute. Tell me like a movie. Like I was a
movie camera over your shoulder, what happened?
PSW1: What happened? Okay. So I brought her into the tub room and she was
already agitated because I saw this look in her eyes in the hallway. I asked her if
everything was okay and she just stared at me. So I’m like Okay, we’re going to
go have a bath. And we came in and the water was running and I always like to
point to that because sometimes when they see things they understand better. And
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I said [to her], We’re going to have a bath. And she just stared at me and I’m like,
okay, I’m going to help you get undressed. You’re going to sit on this blue chair
and it was just from then on, like just trying to help her, take her nightgown off:
she refused. Like, [Name] you need to have a bath. She’s like, No! Get off me!
Blah bla blah, screaming and stuff and I’m like, [Name] you have to have a bath
and she’s like Why?! And then that’s when I told her, [Your daughter] says she’s
going to come. Sometimes it helps that she like sees my nametag. She thinks I’m
her daughter because we have the same name. I’m like [Your daughter is] going
to come and she wants you to have your bubble bath like you have every Friday
morning. And she’s like No. I’m like, Oh my God. So normally I would have left
her, but down here we’re very, like, you know, everyone just has their baths and
stuff. Whereas upstairs we know that if they say no, then it’s no. But because
down here we have to do everything for them, it’s better they have their baths
every week, twice a week. So I just – I – she grabbed my arm and I’m like
[Name]. Please don’t hit me. And she’s just like, You’re hitting me. And I’m like,
I’m not hitting you. Like look what you did to my arm and she just kind of stared
at it and she’s like, Well, I don’t want to. I’m like – so I just let her calm down a
little bit. She was eventually okay, but yeah. And then she was like after she
grabbed it she was ready to bite me and I’m like, Don’t bite me. She is very up
and down too. She was pretty aggressive, but she – it’s very rare. It’s not like
every day but usually when she comes out, it’s like, yeah, it’s a little scary but
then she’ll be fine for the rest of the day. I can go up to her right now and she’d
be like Oh, honey. I love you.
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The following validity reconstructions demonstrate how caregivers’ values and
knowledge can be overpowered by organizational powers that coercively distort care
practices and exclude both PSWs and people with dementia from clinical decisionmaking.
Possible objective claims:
Foregrounded:
o By the look in her eyes, one could tell that this resident was agitated.
o Residents are scheduled to have two baths each week.
Backgrounded:
o Having dementia can result in someone needing assistance with ADLs,
including with bathing.
o Memory deficits and cognitive impairment may result in residents not
recognizing that they need to take a bath to maintain an acceptable level of
hygiene.
o If SCU residents do skip a bath because a PSW could not persuade them to
cooperate in taking the bath, residents’ personal hygiene can deteriorate.
Possible Subjective Claims:
Foregrounded:
o It can feel frustrating, even scary, when working with an agitated and/or
aggressive resident.
o The PSW feels affection for this resident.
Remotely backgrounded:
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o PSWs want to be perceived by colleagues and supervisors as being capable of
providing ADL care, including the bathing of residents.
Possible Normative Claims:
Foregrounded:
o When a resident without dementia objects to taking a bath, a PSW should
respect that viewpoint and not force or even negotiate further with that
resident.
o Residents in the SCU should have their scheduled baths each week even if
they object to doing so.
Backgrounded:
o PSWs should be able to reduce agitation and calm a resident enough so as to
be able to complete the task of bathing the resident.
o PSWs should employ a variety of strategies to persuade residents with
dementia to cooperate in receiving their bath care.
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Appendix 5.4: I don’t believe that – a reconstruction of distortion and exclusion of
knowledge
Context. The quote below comes from an interview with an experienced, full-time SCU
PSW. During the interview, I sought her opinion on the accuracy of my preliminary
interpretations (i.e., I conducted a member-check) regarding data that indicate cliquey, if
not disparate sub-cultures exist between registered and non-registered staff. While her
response acknowledges that there certainly were some registered staff members who do
respect PSWs and their knowledge, her focus was on those who do not.
PSW: I find with the young registered staff, they’re very, they’re good. The ones
that I work with I have no problem with them, they’ll come to me and say I
haven’t been here for a while, what’s going on? or whatever. They’ll come to
one of us and ask or whatever but then you get those ones that they know it all.
Like I remember with [one particular FR], she got really aggressive one night, her
and [another FR], they were fighting like men and the registered staff were
upstairs and we [the two PSWs] were doing rounds so we had to drop what we
were doing and go in to separate them. So when we told her what had happened
she said, [That resident? (As in, Really??)], and she hadn’t been down here for
like I don’t even, like for months and months and months, didn’t even know this
woman; “Her? Oh that’s hard to believe. I can’t believe that. I said, Yes she can,
you can walk past her and she’ll punch you. -- Oh no I don’t believe that. So then
when one of the registered staff from nights came in she was saying Oh they were
saying to me that [that FR] is aggressive. And the registered staff says Oh yes
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she is, just the other day she punched so and so in the back. -- Oh I didn’t know
that, like… [she pauses to imply her point].
Validity reconstructions that account for the PSWs’ experience of her knowledge being
negated include the following:
Possible Objective Claims:
Foregrounded:
o Some registered nursing staff do and some do not seem to respect PSWs and
their knowledge of residents.
Backgrounded:
o In addition to full-time and regular part-time staff, the SCU is sometimes
staffed by care providers who have not been on the SCU for quite some time.
o Staff who are scheduled to work on the SCU infrequently lack familiarity with
the status of residents’ psycho-social functioning.
Possible Subjective Claims:
Foregrounded:
o The PSW is pleased to work with registered staff who acknowledge their own
lack of familiarity with the residents and who solicit PSWs’ knowledge about
residents.
Backgrounded:
o The PSW feels offended and devalued by registered staff who appear to
simply not believe what she shares about a resident.
Remotely backgrounded:
o Such devaluation diminishes morale among the PSWs.
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Possible Normative Claims:
Foregrounded:
o Registered nursing staff who are (newly or recently) unfamiliar with the
residents should solicit and value the knowledge PSWs have about those
residents.
Remotely backgrounded:
o Generally speaking, the SCU should only be staffed with people who work
regularly enough on the unit to maintain familiarity with the residents.
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Appendix 5.5: Nursing is only as holistic as you make it – a reconstruction of
normalized inclusion in knowledge exchange
Context. At 1:30 p.m. in the ADP, once the recreationists had resumed their
programming, the three PSWs who had been monitoring, feeding, and caring for the
clients during lunch left the floor and joined a registered nurse (RN or RPN) in the staff
team room for a brief (15 minute) meeting. This was a long-established practice that
afforded the registered nursing staff an opportunity learn from the PSWs about how the
clients are that particular day. Historically, these meetings have focused on the PSWs’
tasks (toileting, dietary intake, mobility and transfers), but these meetings had evolved as
an opportunity for the nursing staff to “do some education” about holistic dementia care
practices.
In speaking with an RN after one such nursing meeting, she described how PSWs
can
become very trapped in just being task oriented, and it takes a lot of pulling at
them and stretching their mind and making them look at stuff to not just get stuck
in the tasks. … that’s something that we work very hard at here and I poke at
them about because that’s very, very important.
I then asked if it was these particular 1:30 meetings that provided the opportunity for that
“pulling and stretching” of the PSWs; the RN replied,
Yeah. Because then as a group of peers, you know, someone may be brave
enough to step up and say something. And another one will come in and protect
them but we all know what we’re talking about. You know, let’s not get wrapped
up in the task. And see them as a person. Not as – not as someone to dress. Not
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as someone to feed. Not as someone to toilet. But, you know, she was volunteer
of the year … She speaks seven languages. See this person as a person. And
then when you’re toileting her, doing stuff with her, you’ve now humanized her
and as long as you have humanized that person, and put some kind of a
personality to it, it’s much easier not to get wrapped up in task.
This quote shows that the RN tried to develop and foster a new care norm, one that
(re)humanized people with dementia, one that she thought all staff recognized: that the
stay should be “seeing them as a person”. Evident here is the RN’s sensitivity to group
dynamics, including her own authoritative and normative power, as well as her valuing of
holistic care. A comment the RN made a moment later demonstrates the importance of
being able to read a person with dementia, to gain and share knowledge of the person
with dementia:
I think that if everyone took the time to have these type of meetings, and then if the
whole environment was rich like ours where we’re – we have this knowledge of
who they are and we have people who share the knowledge of who they are.
When I get PSW students in here, we work very hard to give them that type of a
picture because it’s very easy to just become, you know, a task oriented person.
And nursing is such a holistic practice but it’s only as holistic as you make it.
Based on the comment that nursing is only as holistic as you make it, the following
validity reconstructions stand as justification for the RN’s normalized inclusion of the
PSWs’ knowledge and experience.
Possible objective claims:
Foregrounded:
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o Without a mechanism that reframes the PSWs’ care practices as (needing to
be) holistic, PSWs’ practices can become task oriented.
o The culture of dementia care knowledge in the ADP features giving primacy
to knowing not only each client’s case history, but their personal, familial, and
professional history as well. Moreover, the culture is one that actively seeks to
share and spread this knowledge among the care providers.
o Getting to know the personal history of a client with dementia serves to
humanize that client, to make the client someone that providers can relate to.
Backgrounded:
o Other teams within the organization do not have such a formal, regularly
scheduled mechanism to enable this kind of knowledge exchange.
Possible Subjective Claims:
Foregrounded:
o PSWs can sometimes feel uncomfortable and perhaps even threatened by
these check-in meetings.
Backgrounded:
o The RN feels confident that she can mitigate PSWs’ discomfort and that she
can in fact make the PSWs feel valued for what they know and for what they
do.
o The RN is proud of her and her team’s care practices and their focus on
holistic and humane care provision.
Possible Normative Claims:
Foregrounded:
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o All dementia nursing care, including the practices of PSWs, should be
holistic; that is, care providers should see a client not as a body but as a person
that requires assistance.
o The PSW’s knowledge and experience of the clients should be taken into
account when care planning.
Backgrounded:
o Dementia care providers should be interested in knowing about their clients’
personal history.
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Appendix 5.6: We’re working on developing a relationship with him – a
reconstruction of normalized inclusion in knowledge exchange
Context. A full-time RPN was reviewing with a SCU physician a list of residents. There
were about a dozen names on the list, i.e., almost half of the SCU residents. The RPN and
the physician had known one another for more than four years, and had expressed their
high regards for one another both to each other and privately to me. The two of them
were seated in the SCU chart room around a small round table, along with myself. In
another corner of the room, a PSW sat at a computer documenting the provision of daily
care. The dialogic sequence begins as the RPN begins sharing with the physician (MD)
her knowledge of a recently admitted male resident.
RPN: [MR] is the first person in many, many years that I feel I cannot make any
form of a connection with, he’s so blank. Somebody said to me this morning,
could he be depressed? He’s on, I think it’s 10 mg of cipralex [an antidepressant], or maybe a little bit more.
MD: Yeah.
RPN: But he’s very, his affect…
MD: Flat.
RPN: Very flat [emphasis on very]. He’s strong in his-- but whether he allows us
to take care or not, and we’re, ‘course we never force, but the man needs care
sometimes, so we have to do it.
MD: Is he resistant?
RPN: Yep. Like, when he says no…
PSW [who is sitting nearby, charting]: [MR?]
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RPN: [MR].
PSW: When he says no, it’s no.
RPN: It’s no.
PSW: The only person that can get through to him ever, is his wife.
RPN: Yeah, his wife is so good with him.
MD: Yeah.
RPN: I just feel bad for the man, cause he always looks so lost…
PSW: He is.
RPN: …and blank.
MD: What I’ll do is, I think I agree with you, the cipralex is at 10, we could go to
15…
RPN: Okay.
MD: …with monitors, so, I’ll increase the dose to 15.
RPN: I’m, you know, when I say I’m trying to develop a relationship, I know it’s
not going to be like, you and I, or you and Ryan talking, but for the first couple of
weeks, he wouldn’t even look at me, he wouldn’t make eye contact. I get right in
their faces, with the pills. Now he’s, if I say his name and Good morning -- this
morning I tried to talk to him about his kids, and I said, You’ve got a daughter, I
just met her yesterday, and I said, What’s her name? And he looked at me, and he
said, I don’t know. So we’re working on developing a relationship with him.
There are a number of things that make this exchange remarkable. One is the
interjecting contribution of the PSW that served to corroborate the RPN’s account
of the resident – despite this important role in this exchange, neither the RPN nor
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the physician explicitly acknowledge her comment. Another remarkable aspect of
this exchange is the ambiguous reference to (not) using force when providing care
- ‘course we never force, but the man needs care sometimes, so we have to do it.
For the present purpose of further illustrating the theme of normalizing inclusiveness, the
following reconstructed validity claims demonstrate how and why the RPN justifies the
importance of building a relationship with residents.
Possible Objective Claims:
Foregrounded:
o The RPN claims that her practices include developing rapport and building a
relationship with residents by interacting with them each and every morning
while administering medications
o Building relationships with a person with dementia is quite different than
building a relationship with someone who does not have dementia
Backgrounded:
o Invoking a resident’s family history is (usually) an effective technique for
opening up a meaningful conversation with residents.
Possible Subjective Claims:
Foregrounded:
o The RPN feels badly for the resident, manifest as compassion and sympathy
Backgrounded:
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o It is frustrating or concerning that she cannot establish such a rapport with this
resident (as it stands in contrast to her success in doing so with other residents
over her career)
Possible Normative Claims:
Foregrounded:
o As a full-time RPN, she should establish and maintain a relationship with all
residents, even if that relationship is non-verbal, so as to enable ongoing
opportunities to be able to read/assess residents’ wellbeing / change of
psycho-social status
Backgrounded:
o Depression should be treated.
o Registered nursing staff should convey to physicians observed symptoms of
depression and the how these symptoms affect care provision.
Remotely backgrounded:
o Physicians should rely on, or at least consider seriously, the observations and
judgments of the registered nursing staff.
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Appendix A: Letter of Information & Consent Form (staff version)
Letter of Information and Consent Form
Understanding the Culture of Dementia Care Knowledge
Study Investigators:
Ryan DeForge, PhD (c)
Health & Rehabilitation Sciences Graduate Research Program
Faculty of Health Sciences
The University of Western Ontario, London, ON
Dr. Anita Kothari, PhD
School of Health Studies
Faculty of Health Sciences
The University of Western Ontario, London, ON
Dr. Catherine Ward-Griffin, RN, PhD
Arthur Labatt Family School of Nursing
Faculty of Health Sciences
The University of Western Ontario, London, ON
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Introduction
As someone who works in a long-term care home, you are being invited to participate in
a research study that will explore your perspectives on providing care to residents with
dementia.
The purpose of this letter is to provide you with the information you require to make an
informed decision on participating in this research. It is important for you to understand
why the study is being conducted and what it will involve. Please take the time to read
this carefully and feel free to ask questions if anything is unclear or if there are words or
phrases you do not understand.
Purpose of this Study
The purpose of this research project is to examine the ways in which long-term care
residents, family members, and staff create, share, and apply different forms of practice
knowledge about dementia care. We are asking you to participate in this study because
you provide care to those who live in long-term care.
Summary of Research Project
This research project proposes to critically examine the ‘culture of dementia care
knowledge’ within a long-term care setting. Of particular interest is how care routines are
negotiated, shared as they are among staff and, at times, family members. The objective
of the data collection and analysis is to better understand what taken-for-granted values,
beliefs and behaviors shape the interactive, power-laden discussions that in turn shape
care routines.
To collect the project data, a student researcher from The University of Western Ontario,
Ryan DeForge, will begin by observing interactions among/between residents, staff, and
family members. Then residents, staff, and family members will be interviewed to
discuss further issues related to dementia care. Finally, residents, staff and family will be
invited to participate in small group discussions to exchange interpretations of the study
findings.
Who can participate in this study?
We invite all residents of this long-term care home and their family members to
participate. Additionally, all healthcare providers (i.e., anyone providing direct care to
residents, education to long-term care home staff, as well long-term care home
management) are invited to participate. Your participation in this study will not affect
your participation in any other concurrent or future studies.
What will I have to do if I choose to take part?
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There are three components to the data collection strategy. Initially, the researcher will be
observing interactions among residents, staff, and family members in an effort to
understand how dementia care knowledge is created, shared, and applied. Although no
personally identifying information will be recorded, these observations will be recorded
as field notes in a journal. When such observations are being conducted, a “Notice of
Research in Progress” will be posted at entryways to the home and to the specific unit
being observed to ensure you are aware that a researcher is present.
You may subsequently be asked to participate in an interview to reflect on and share your
perceptions of dementia care. The interview component of the study is designed to
extend and deepen the researcher’s understanding of dementia care knowledge.
Finally, you may also be asked to participate in a small group discussion that facilitates
the exchange of your and the researcher’s interpretations of the data. These focus groups
are designed to spark conversation about the culture of dementia care knowledge and to
generate and share ideas about how dementia care practices can be improved.
In total we will need approximately 1-2 hours of your time. It is expected that an
interview will take about 60 minutes of your time, and/or, if you participate in a focus
group discussion, it is also expected to take about 60 minutes of your time. The research
interviews and focus group discussions will be conducted within the long-term care
home, and will be tape-recorded and transcribed. Your questions, comments or stories
will remain confidential as no personal identifiers (such as your name) will be collected
or retained for research purposes.
Will I be paid to participate in this study?
You will not be paid to take part in this research study.
Are there any risks or benefits of taking part?
Risks: There are no known risks associated with participating in this study aside from
those that may arise in reflecting on and discussing your personal care-giving
experiences. When the study results are published or presented, your name will not be
used. No information that discloses your identify will be released or published without
your explicit consent to the disclosure. You do not waive any legal rights by signing the
consent form.
Benefits: Many people who participate in research-based interviews about their job find
some benefit in reflecting on the challenges and rewards of their work, and we hope this
is the case for you. In more general terms, while you may or may not benefit personally
from participating in this study, the knowledge gained from this study may be useful in
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designing effective educational resources/tools/information for health care providers
caring for long-term care home residents who have dementia.
Do I have to take part?
No. Participation in this study is voluntary. You may refuse to participate, refuse to
answer any questions, or withdraw from the study at any time. Refusal to participate will
not result in any punitive action: while the leadership team of McCormick Home supports
this study, it is understood that your right to participate in this study voluntarily must be
preserved.
What happens to the information I provide?
We will not retain any information that could be used to identify you. The information
you share in an interview or in a small group discussion will first be transcribed verbatim,
then “cleaned” so as to remove any names or other personal identifiers. The information
you provide will be stored on a password-protected computer and/or in a locked cabinet
in a secure office accessible to only the research team. Your name will not appear in any
verbal or written reports of the study findings.
As we are not able to link your name to the information you give us, once you have
provided a response to our answers we are unable to retract your information.
If you would like to receive a copy of the overall results of the study, please put your
name and address on a blank piece of paper and give it to the person conducting the
interview or focus group.
This letter of information is yours to keep for your own records. If you have any
questions about your rights as a research participant or the conduct of the study you may
contact The Office of Research Ethics at (519) 661-3036 or by email at ethics@uwo.ca.
Please note, representatives of The University of Western Ontario may contact you or
require access to your study-related records to monitor the conduct of the research.
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Consent to Participate
Understanding the Culture of Dementia Care Knowledge
Study Investigators:
Ryan DeForge, PhD (c)
Health & Rehabilitation Sciences Graduate Research Program
Faculty of Health Sciences
The University of Western Ontario, London, ON
Dr. Anita Kothari, PhD
School of Health Studies
Faculty of Health Sciences
The University of Western Ontario, London, ON
Dr. Catherine Ward-Griffin, RN, PhD
Arthur Labatt Family School of Nursing
Faculty of Health Sciences
The University of Western Ontario, London, ON
I have read the Letter of Information, have had the nature of the study explained to me,
and all questions have been answered to my satisfaction. I agree to (please check all that
apply):
___
allow observations of my interactions with other staff and with residents and
residents’ families to be recorded
___
participate in an interview that explores my perceptions of dementia care
knowledge
___
participate in a focus group that discusses the preliminary findings from this study
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Name of Participant:
Date:
Name of Study Investigator/ Person Obtaining Consent:
Date:
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Appendix B: Curriculum Vitae – Ryan DeForge (November 2013)
EDUCATION
i) Degrees
Doctoral Candidate in Health & Rehabilitation Sciences Graduate Research
Program (Health Promotion stream), Faculty of Health Sciences, Western
University, London ON. (September 2007 start; defense date: November 4th
2013).
M.Sc., Family Relations & Applied Nutrition (Gerontology)
University of Guelph, Guelph, ON, (2000 - 2002).
B.A.Sc., Gerontology, University of Guelph, Guelph, ON, (1994 - 1999).
EMPLOYMENT HISTORY
i) Current Positions
a) Research Associate. Research and Evaluation, Specialized Geriatric Services of
St. Joseph’s Health Care, London, under the direction of Dr. Iris Gutmanis and as
a member of the Care of Older Adults team within the Aging, Rehabilitation and
Geriatric Care Research Centre at Parkwood Hospital (2004 – present).
ii) Previous Positions
a) Policy Consultant, Nursing Policy Unit, Health Canada (2013).
b) Project Coordinator. Building Partnerships in Community Dementia Care.
Principal Investigator: Dr. C. Ward-Griffin (2010 – 2012).
c) Project Coordinator. Double Duty Caregiving and Health Human Resources: A
Knowledge Translation Initiative. Principal Investigator: Dr. C. Ward-Griffin
(2012).
d) Editorial Assistant. Social Policy & Practice Section, Canadian Journal on Aging
(2008 – 2011).
e) Graduate Research Assistant. The negotiation of care in home-based dementia
care: A critical ethnographic exploration. Principal Investigator: Dr. C. WardGriffin (2007 – 2010).
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f) Research Assistant, City of London/The University of Western Ontario.
‘Examining the readiness of London’s long-term care homes to serve seniors with
dementia.’ Principal Investigator: Dr. A. Salmoni (School of Kinesiology,
Western), (2009 – 2010).
AWARDED FUNDING
1. Frederick Banting – Charles Best Canadian Graduate Scholarship – Doctoral
Award. Canadian Institutes of Health Research. 2009 – 2012. ($105,000).
2. Ontario Graduate Scholarship, 2008. ($15000).
3. Accepted to the Canadian Institutes of Health Research – Institute of Aging
“Summer Program on Aging.” Honey Harbour ON, June 2008.
4. Accepted to the Canadian Institutes of Health Research – Institute of Health
Services and Policy Research / Institute of Population and Pubic Health Summer
Institute “2008 Innovation in Knowledge Translation Research and Knowledge
Translation.” Cornwall ON, June 2008.
5. National Initiative for the Care of the Elderly (NICE) Student Mentorship
program 2007-08 and 2008-09. ($1000).
PUBLICATIONS
(i) Peer Reviewed
a) Journal Articles:
1. St-Amant, O., Ward-Griffin, C., DeForge, R., Oudshoorn, A., McWilliam, C.,
Forbes, D., Kloseck, M., & Hall, J. (2012). Making care decisions in home-based
dementia care: Why context matters. Canadian Journal on Aging, 31(4), 423-434.
2. Shaw, J. & DeForge, R. (2012). Physiotherapy as bricolage: Theorizing expert
practice. Physiotherapy Theory and Practice, 28 (6), 420-427.
3. Stolee, P., Byrne, K., Awad, M., DeForge, R., Clements, S., & Glenny, G.
(2012). A multi-site study of the feasibility and clinical utility of Goal Attainment
Scaling in geriatric day hospitals. Disability & Rehabilitation, 34 (20), 17061715.
4. DeForge, R. & Shaw, J. (2012). Back- and fore-grounding ontology: exploring
the linkages between critical realism, pragmatism, and methodologies in health
and rehabilitation sciences. Nursing Inquiry, 19(1), 83-95.
349
5. Ward-Griffin, C., Hall, J., DeForge, R., St-Amant, O., McWilliam, C.,
Oudshoorn, A., Forbes, D., & Klosek, M. (2011). Dementia home care services:
How are we managing? Journal of Aging Research, Volume 2012.
6. DeForge, R., Van Wyk, P., Hall, J., & Salmoni, A. (2011). Afraid to care; unable
to care: A critical ethnography within a long-term care home. Journal of Aging
Studies, 25, 415-426. [Listed as a ‘New and notable’ ethnographic research
article in The Weekly Qualitative Report, Vol. 4, No. 46, November 14, 2011].
7. Cornelissen, E., Urquhart, R., Chan, V., DeForge, R., Colquhoun, H., Sibbald, S.,
& Witteman, H. (2011). Creating a knowledge translation trainee collaborative:
From conceptualization to lessons learned in the first year. Implementation
Science, 6:98. (“Highly accessed” article).
8. Forbes, D., Ward-Griffin, C., Klosek, M., Mendelsohn, M., St-Amant, O.,
DeForge, R., & Clark, K. (2011). “My world gets smaller and smaller with
nothing to look forward to”: Dimensions of social inclusion and exclusion among
rural dementia care networks. Online Journal of Rural Nursing and Health Care,
11(2). http://rnojournal.binghamton.edu/index.php/RNO/article/view/18
9. Kho, M., Estey, E., DeForge, R., Mak, L., & Bell, B. (2009). Riding the
knowledge translation roundabout: Lessons learned from the Canadian Institutes
of Health Research Summer Institute in Knowledge Translation. Implementation
Science, 4:33 (12 June 2009). (“Highly accessed” article).
10. DeForge R., Cormack C., Byrne K., Hillier, L.M., Mackenzie R., & Gutmanis, I.
(2008). Facilitators and barriers to recommendation adherence following
discharge from geriatric rehabilitation. Topics in Geriatric Rehabilitation, 24(4),
345-353.
11. DeForge R., Regan B., & Gutmanis, I. (2008). Lean on Me: Building volunteer
capacity to support frail seniors’ participation in community seniors’ centre
programs. Therapeutic Recreation Journal, 40(2), 170-179.
b) Journal Abstracts
1. Van Bussel, L., Gutmanis, I., Jarvie, A., Speechley, M., & DeForge R. Using
theatre to explore long-term care home healthcare provider needs. (2012).
Research Insights, 9, 10.
2. DeForge, R. (2011). Modelling critically and ethnographically derived
transformative knowledge exchange. International Institute of Qualitative
Methods – Qualitative Health Research conference, Vancouver, BC, October
2011. International Journal of Qualitative Methods, 10 (4), 488.
350
3. DeForge, R., Ward-Griffin, C., Speechley, M., & Gutmanis, I. (2011). Researchbased theatre as a catalyst for transformation. International Institute of Qualitative
Methods – Qualitative Health Research conference, Vancouver, BC, October
2011. International Journal of Qualitative Methods, 10 (4), 499.
4. Ward-Griffin, C., McWilliam, C., Orange, J.B., Klosek, M., Wong, C., &
DeForge, R. (2011). Building partnerships in community-based dementia care: A
critical constructivist grounded theory. International Institute of Qualitative
Methods – Qualitative Health Research conference, Vancouver, BC, October
2011. International Journal of Qualitative Methods, 10 (4), 460.
5. DeForge, R. & Hall, J. (2009). Muddying the waters: The complexities of
engaging with/in ‘Relational Critical Reflexivity.’ International Institute of
Qualitative Methods – Qualitative Health Research conference, Vancouver, BC,
October 2009. International Journal of Qualitative Methods, 8(4).
6. DeForge, R. (2009). Too much, or just right? Methodological pluralism in
knowledge translation research. International Institute of Qualitative Methods –
Qualitative Health Research conference, Vancouver, BC, October 2009.
International Journal of Qualitative Methods, 8(4).
7. DeForge R., Hall, J., Szudy, N., Bickford, J., Lencucha, R., Shaw, J., & Cullion,
C. (2009). This is not a poster: It’s a hypertextual re-presentation of relational
critical reflexivity. International Institute of Qualitative Methods – Advances in
Qualitative Research conference, Vancouver, BC, October 2009. International
Journal of Qualitative Methods, 8(4).
8. Hall, J. & DeForge, R. (2009). Storied methods of our negotiations of selves in
the practice of ‘Relational Critical Reflexivity.’ International Institute of
Qualitative Methods – Advances in Qualitative Research conference, Vancouver,
BC, October 2009. International Journal of Qualitative Methods, 8(4).
9. McCleary, L., McGilton, K., DeForge, R., Oudshoorn, A., & Boscart. V. (2009).
Increasing capacity for geriatric and gerontology content in Canadian nursing
education. Abstracts of the 19th IAGG World Congress of Gerontology and
Geriatrics, 2009. The Journal of Nutrition, Health & Aging, 13, Suppl. 1, S518.
10. Byrne K., DeForge R., Stolee P., Mackenzie R., McCallum J., Parker H., Glover
C., Glaves N. & Wells J. (2005). Defining continuity of care in a geriatric
rehabilitation unit. Geriatrics Today: The Canadian Journal of Geriatric Medicine
and Psychiatry, 8, 76, 2005.
351
(ii) Non peer-reviewed:
1. Cornelissen, E., DeForge, R., Urquhart, R. (2011). Why do transdisciplinarity and
knowledge translation matter to dietetics and dietitians? Practice, a publication of
Dietitians of Canada, 56, 8.
(iii) Technical Reports
1. DeForge, R. Pan-Canadian Comparative Analysis of Nursing Regulation for the
Nursing Policy Unit & Principal Nursing Advisors (Health Canada). July 2013.
2. DeForge, R. & Hall J. Youth Violence Preventions Programs – A review of the
literature. Prepared for Quorum Strategic Communications. October 2008.
3. DeForge, R. Geriatric Day Hospital Process Evaluation: Implementation of the
2006 Model of Care. Prepared for Specialized Geriatric Services, St. Joseph’s
Health Care, London. October 2006.
4. DeForge R., Cormack C., Chambers C., Mowat J. & Glover C. Specialized
Geriatric Services Self-Assessment Document for Canadian Council on Health
Services Accreditation Survey. September 2005. Prepared for St. Joseph’s Health
Care, London.
352
Notes
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END.
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