Carers

For a few decades in the later seventeenth century, the Pac family (Pacai in Lithuanian) became the leading magnate clan in the Grand Duchy of Lithuania. The achievements and careers of clergymen from the family in state and ecclesiastical structures indicate their significance and position in the system of power at that time. While the 1660s and 1670s were for the Pac family a golden baroque age, the family's bumpy rise during the previous century and a half also merits examination. The article seeks to identify the factors conditioning careers in the context of the position of the family and to characterize the bishops (or nominated bishops) from this family. Over four generations, it is possible to observe a slow and far from stable process in which the bishops Pac aimed less to wield power than to satisfy their own ambitions. During this period, which saw the swift advance of the Reformation turn into the triumph of the Counter-Reformation, these ambitions turned upside down — between marriage and mitre.

This paper contributes to our understanding of caring for someone with dementia in the context of cuts to publicly funded social care by approaching the issue from the perspective of carers, who emphasise the important role justice plays in determining wellbeing. I draw on a qualitative analysis of carer accounts to argue that we would be well placed to adopt an approach based on Prilleltensky’s (2012: 1) conceptualisation of ‘wellness as fairness’. This would move us beyond individualistic, positivist notions of carer wellbeing currently dominating the literature to more socially constructed and determined ones thus bridging the gap between subjective wellbeing and those aspects of a setting or social policy that are health giving.

W debacie wokół przemian współczesnych rodzin i wzorców płci rzadko dyskutuje się o doświadczeniach kobiet spoza klasy średniej. W istocie niewiele wiemy na temat tego, jak po 1989 roku zmieniały się biografie, tożsamości i role rodzinne rolniczek i robotnic. Tymczasem od co najmniej kilku dekad to właśnie zwalniane z restrukturyzujących się fabryk pracownice, rolniczki i gospodynie domowe są bohaterkami cichej, niewidzialnej, choć masowej rewolucji. Jako (nie)legalne migrantki – sprzątaczki i opiekunki dzieci, osób starszych i chorych – zamieszkujące wraz z milionami podobnych sobie globalnych robotnic getta migracyjne w metropoliach Europy i Ameryki, musiały zmierzyć się z nowymi nierównościami, gruntownie przeorganizować role, tożsamości rodzinne i wzorce płci. Jak Polki radziły sobie z wieloletnią przymusową rozłąką z dziećmi w sytuacji, gdy „opieka na odległość” stała w sprzeczności z figurą matki rezydencjalnej utrwaloną w świadomości jako kanoniczna i niemodyfikowalna? Jak zmieniały się przy tym ich relacje z mężami, rodzinami i społecznościami lokalnymi? O jakich doświadczeniach, jakim językiem mówi „matka Polka na odległość”? Jakie kulisy życia polskich rodzin zaczęła odsłaniać, kiedy znalazła się tam – poza granicami domu, tradycyjnego świata społecznego wsi, miasteczka, państwa? Z czym wiąże się „postmodernizacja ubogich”? Autorka odpowiada na te pytania, zastanawiając się jednocześnie, czy od 1989 roku – kiedy okno dla masowych migracji kobiet otworzyło się szerzej – mieliśmy do czynienia z niedostrzeżoną rewolucją płci w społecznościach zwykle szufladkowanych jako twierdze tradycyjności. Analizy powstały na podstawie zebranych przez autorkę narracji autobiograficznych kobiet, których doświadczenie życia między dwoma krajami wpisywało się w dwie dekady transformacji 1989–2010. Książka nie mogłaby jednak powstać́ bez intensywnych badań terenowych, prowadzonych w Polsce i Belgii. Dały one wgląd w życie migrantek, ich rodzin i społeczności na wsiach i w małych polskich miasteczkach, ale także w gettach migracyjnych Brukseli.

People create subjective theories of diseases that also include causal attributions about it. In (therapeutic) children's homes the professional caregivers work intensively together with their clients who have a high prevalence of psychological symptoms. The study presents the disease's attributions patterns of both roles (clients and professionals) which show the highest attributions to the factors " family " and " self ". Furthermore the study proves significant differences between the causal attributions of teenagers who are linked to three different settings: ambulant psychiatric therapy, residential child protection services and therapeutic children's homes.

This study used a coping framework (Lazarus & Folkman, 1984) to explore experiences of caring for a son or daughter with schizophrenia. Eight parents of people with schizophrenia were interviewed about their experiences and the transcripts of these interviews were subjected to thematic content analysis. The analysis indicated that negative symptoms represented the most burdensome stressor for parents and that coping strategies shifted from problem-focused to more emotion-focused forms (such as acceptance). In relation to the resources which were available to parents, the results indicated that support from social networks and mental health services was generally perceived to have been lacking. However, both informational and emotional support were available from self-help groups for relatives/carers. The implications of this study for therapeutic practice are discussed.

Objective: Despite increased research into how caring for a child diagnosed with Juvenile Idiopathic Arthritis (JIA) affects mothers, more needs to be known about ways in which such experiences transform their lives. Insight into the experiences of such mothers was sought through analysis of interviews with eight mothers and one father caring for a child with JIA.
Design: The study is situated within a larger project involving families with a child with JIA. A social constructionist approach was adopted and grounded theory including a ‘negative case,’ guided gathering and analysing data.  Individual, semi-structured interviews were conducted based on the research question: ‘What is it like to be the mother of a child with juvenile idiopathic arthritis? 
Results: Findings suggest that, mothers find difficulty living up to the ‘ideal mother’ expected within Western society when forced to provide competing demands of age related, yet illness relevant care. The unpredictable nature of JIA means mothers face a lack of understanding from professionals so become hyper-vigilant, ‘battling’ on behalf of their ill child. A self-perpetuating loop develops if this is misperceived as being over-protective, leaving mothers vulnerable to being judged ‘neurotic’. However, with experience, often at an emotional cost, such mothers’ confidence in managing the competing demands of caring for their ill child increases such they can navigate a positive journey from ‘neurotic’ to ‘managing’ mother.
Conclusions: Understanding this process could help healthcare professionals reduce stressful experiences faced by mothers when caring for a chronically ill child.

This paper explores the role of support networks in reducing digital exclusion for isolated individuals.  We describe how ethnographic studies were undertaken in neighbourhoods in each of the four South Yorkshire urban regions of Barnsley, Doncaster, Rotherham and Sheffield, followed by interviews with residents to identify interventions that increased the probability of individuals being motivated to use the Internet. A key theme emerging was how contact networks reach isolated individuals and provide them with information; we developed this idea further through a study of carers.

Using findings from these studies, we consider the value of interventions through personal networks (developed and maintained by the individual) as opposed to those through formal external networks (provided by community centres and public sector groups). In conclusion, we discuss appropriate techniques for local government authorities and agencies to adopt when working to digitally include currently excluded citizens.

Family carers provide strong support for many older adults, often enabling older adults to remain at home. Little is known about the care recipients' perspectives of the role and contributions of family carers, particularly when hospital admissions occur as part of end of life care. This paper explores the meanings of family caring for care recipients by drawing on older adults' perspectives about the impact of hospital admission on established family caring relationships. Exploratory semi-structured qualitative interviews. Key findings reported in this paper emerged from within the inductive research design. Interviews were conducted in older adults' place of residence in northwest England between June 2009 and July 2010. Participants were 27 older adults living with heart failure (n=13) or lung cancer (n=14), aged 69-89 years (mean 79 ± 4.3 years) and considered by their health professionals to be in their last year of life. In 12 of the interviews, a family carer was also present and made contributions. For community-dwelling older adults, family carers are conceptualised as 'conductors'; making strong contributions to maintaining the rhythm of good care throughout the illness trajectory. Following older adults' hospital admission, family carers find themselves in the role of 'second fiddle', their ability to work with the individual and to make or influence decisions vastly reduced. Despite this, carers continue to invest considerable effort in maintaining continuity in the carer relationship to maximise the individual's wellbeing by identifying needs, filling gaps in provision and advocating on patients' behalf. Family carers act flexibly to provide continuity, support and take responsibility for older adults' wellbeing across settings. Nurses and family carers working together, and greater appreciation of the contribution and role of family carers by health professionals may contribute to improving the quality and continuity of care for older adults.

Caring for an elderly person often requires constant attention, physically challenging tasks, and emotional strain, all of which accumulate over periods and manifest as fatigue. Despite the prevalence of descriptions of fatigue in carer narratives, and the massive clinical literature on ‘carer burden’ and ‘exhaustion’, the significance of fatigue as a component of care rather than a mere by-product has not been fully explored. Drawing on Levinas’ phenomenological theory of fatigue I argue that experiences of fatigue shape carer subjectivities as both vulnerable and enduring, qualities that are essential for inaugurating new ways of being towards and taking ethical responsibility for the cared-for. At the same time, fatigue can become tragic if not supported by social and cultural narratives that recognize it and give it value.
Cite as
Danely, J. Carer narratives of fatigue and endurance in Japan and England. Subjectivity 10, 411–426 (2017) doi:10.1057/s41286-017-0037-7

The aims of this study were to explore relatives' experiences of talking about cancer within the family and to identify their information and support needs. A cross-sectional in-depth interview study with relatives and partners (n = 22) of cancer patients recruited through community settings was conducted. A thematic approach was used for analysis. Information sharing and communication within families operated within a context of cancer-related uncertainty. Discussion about cancer was generally viewed as beneficial, but relatives faced dilemmas, which inhibited information exchange. Participants often devised strategies to manage the challenges faced to fulfil their needs for information and support. This was deemed important as talking about cancer allowed relatives to support patients' preferences for care, deal with practical demands and come to terms with difficult issues. Lack of information was perceived to affect the quality of care participants could provide. Partici...

In this paper we respond to the question: How can we gain a better understanding of our own values and where they come from, and how this has influenced our work together and in our interests in improving outcomes for carers? We evidence our claims to knowledge in responding to this question in the areas of: • shared values and how we came to them; • our learning through writing this paper; • our ability to give to hope to others. In analysing our claims, we find areas of mutuality that we had not predicted. We subsequently analyse further to understand our relational dynamics and we introduce our readers to our living-theory of mutuality that emerges. This account provides guidance for a way of writing a collaborative paper that enables both authors' voices to be of equal value, recognising both the unique and the shared perspectives as a result of our shared methodological approach. Through the process of writing a dual-authored paper we show how our mutuality develops as an explanatory principle and a living standard of judgement (Laidlaw, 1996).

Caring for a family member or friend can have major impacts on the life of informal family carers, particularly in terms of balancing multiple commitments. Australian and international research has demonstrated the significant conflicts experienced by carers in managing their employment and caring responsibilities to the extent where being a carer reduces workforce participation relative to non-carer peers. Several additional barriers to workforce participation have also been identified that further exacerbate the stresses of attempting to balance work and care. This paper reports on results from a state-wide survey of carers to examine the extent to which these issues exist amongst carers in New South Wales. Approximately half of working age carers were in paid employment, and almost one third of those not working indicated that they would like to be. Analysis of demographic variables suggested certain situations that increased barriers to carers’ workforce participation. The responses of working carers also indicated scenarios whereby workplace practices assisted in combining working and caring responsibilities, as well as how such practices had impacted carers’ health and wellbeing. Survey results raise avenues for further investigation, as well as implications for workplace policy and carer support strategies.

Many families provide lifelong support to their relative with an intellectual disability. However, relatively little information is available for national populations on the characteristics of the people for whom these families care and the supports they receiveor need. A database of all persons in receipt of intellectual disability services has been operating in the Republic of Ireland since 1995 and records details of those living with family carers. In Northern Ireland, regional databases provide similar information. Usingboth sources, data were obtained on over 12,500 people living with family carers; half of whom lived with two parents, around 30% with a lone parent, and just under 20% with another relative. More people in Northern Ireland were identified as living with familycarers, which was attributed mainly to less available residential alternatives. Only a minority of carers received respite breaks and domiciliary supports although higher proportions required them. The authors conclude that family care arrangements have receivedrelatively little attention within government policy making, and hence service provision has been largely reactive. Future research should focus on the changing needs of carers over time and how they can be better supported in their role.

To assess all carers in the Gloucester Assertive Community Treatment Team and identify their needs. Carers were identified using the definition employed in the Notional Service Framework for Mental Health (DH, 1999): they were family or close friends who spent a minimum of 12 hours per week helping/supporting the service user. Paid carers were excluded. A standardised carer's assessment that had been developed as part of the care programme approach (CPA) was used to evaluate the needs of carers. The study highlights the type of support that carers give those who use the mental health services and reveals the impact that this caring has on them. The carers' needs are identified as: someone to talk to; help with cleaning/ironing; help with finances; support to enable them to take a break; plus respite care and accommodation for the service user. Carers play an important role in supporting people who are diagnosed with severe mental illness although further research is necessar...

Caring for a loved one has been reported as potentially being a very stressful experience and can have negative consequences on carers’ wellbeing. However, research also demonstrates individual differences in the ways that carers respond to their caring responsibilities. In particular, certain factors and practices have been identified that promote carers’ resilience and thus reduce the negative impacts of stressful caring experiences. Furthermore, evidence exists to suggest that carers may not simply cope, but thrive in their role. Drawing on individual narratives and findings from broader research studies, this paper presents an argument whereby carers’ experiences exist along a continuum, from adversity to prosperity. In doing so, individual experiences exemplify how resilience may be interpreted across personal caring contexts and thus provide a platform for identifying and developing supportive practices.

"The evaluation examined the way the Caring With Confidence programme (which aimed to provide support to 37,000 carers in England and was the largest programme of training for carers ever planned in the UK, with a total budget of £15.2m over three years) was set up, its impact as a source of support of carers in England, and the outcomes of the programme as perceived by both carers and the providers delivering it.

The evaluation drew upon a range of methods, including surveys and focus groups with carers, case study visits to provider sites, documentary analysis, observation of project meetings and events, and collection of management information.
Key findings

The programme was designed to provide training and support to carers, thereby giving them greater choice and control in different aspects of their lives. The evaluation found that the carers who participated in the programme were very positive about it and benefited in a number of ways, including: greater confidence in their caring roles; learning new skills; improved health and well-being; better knowledge of support services; and improvements affecting those they cared for.

A prescriptive and centrally planned approach to the programme design was taken, focussing on high quality, standardised training, comprising a flexible, modular training programme delivered by trained facilitators, based in local training providers. Ambitious targets were set relating to carer numbers, which individual providers and the programme overall had difficulty meeting. Although target number of carers were not met, the programme succeeded in registering almost 14,000 carers, well over 10,238 of whom attended at least one CwC module, with many of these (59%) being fully trained. These carers were reasonably representative of the wider population of carers, and some success was achieved in meeting targets for some particularly hard-to-reach groups.

There was no specific target cost per carer trained or number of modules attended but lower than expected carer numbers led to a relatively high cost per filled carer place. Initial high delivery costs became more manageable for some providers once they had established the programme, and a revised funding regime had the potential to deliver CwC more cost effectively than the initial model used. The report concludes with eight recommendations arising out of the CwC programme evaluation that were identified for future training and support programmes for carers."

Despite the importance of carers supporting the lives of people with mental illness, there are limited studies investigating the well-being and needs of Malay carers in multicultural Singapore. The Malays consist of 13.4% of Singapore's population. A mixed methods qualitative dominant research approach was used to explore the well-being and needs of Malay carers in a voluntary welfare organisation. The Kessler-10, Friendship Scale and Carers' and Users' Expectations of Services-Carer version were used to assess the needs and well-being of 17 Malay carers. Findings show that Malay carers experienced poor well-being and had numerous unmet needs. Four main themes were found: (a) Concerns related to relatives with mental illness, (b) Mental health practices related to carers, (c) Holistic support for carers and (d) Preference for greater spiritual support in mental health. Recovery-oriented mental health practice implications are discussed. Spirituality of Malay carers needs to be given greater consideration in recovery-oriented mental health services.

Emily Henderson writes about the recruitment process for her research project on conferences and caring responsibilities, where she recruited over double the planned number of participants in two days.



I2PO Recruitment Day 1

When formulating ideas for a research project, it is not always possible to predict how it will land when it gets ‘out there’. With empirical research which works with human participants, the transition from project plan to the collection of empirical materials can be a particularly fraught moment. While I was confident about the justification for my new research project, ‘In Two Places at Once: The Impact of Academics’ Caring Responsibilities on Conference Participation’, I nonetheless felt some trepidation at releasing the project into the wilds of social media in order to recruit participants for the study. I knew there was a basis for the study from my doctoral research on Women’s Studies conferences, where several of my participants described the complicated arrangements they had had to put in place in order to attend the conferences I was researching (see my recent Conference Inference post, ‘Individual Delegates, Multiple Lives’, for more on the justification for the project). However I was haunted by the possibility that I would receive two types of negative feedback from my call for participants.

Read more here: https://conferenceinference.wordpress.com/2017/05/08/overwhelming-care-reflections-on-recruiting-for-the-in-two-places-at-once-research-project/

Emily Henderson introduces her new funded research project, ‘In Two Places at Once: The Impact of Caring Responsibilities on Academics’ Conference Participation’

In many representations of conferences, delegates are depicted as unfettered individuals, travelling freely from place to place in the pursuit of knowledge, networks, or expenses-paid hedonism. Indeed, in most of the relatively scant literature on academic conferences, delegates are not portrayed as having identities or lives outside of the conference. They are learners, attendees, recipients of an experience. They are numbers, badges, bums on seats.

Read more here: https://conferenceinference.wordpress.com/2017/03/13/conferences-and-caring-responsibilities-individual-delegates-multiple-lives/

This is the ebook brining together four national reports that were produced as part of the C2W programme. The reports were produced by the project partners and were written in native languages focusing on the UK, Sweden, Italy and Greece. A dedicated website has been set up to disseminate these reports and all C2W outputs (http://www.care2work.org/)
The C2W project is inspired and motivated by the priorities of the EU Youth Strategy. In 2009, the general director of the direction of education and culture of the European Commission said: “The Council of Ministers Responsible for Youth in the 27 member states of the EU adopted a resolution endorsing a new EU Strategy for Youth. This strategy, which is based on a proposal by the EC made in April of the same year, will guide both the EU institutions and the member states in pursuing policies to improve the lives of all young people in the coming decade (Quintin, 2009). Six years later and we are yet to witness noticeable changes in member states’ youth policies and institutional structures. Although there has been a lot of effort and investments from European institutions to orientate in favour of youth policies, these seem to remain weak at national level across Europe. Programmes such as Youth in Action and Erasmus have tried to designate priorities and to organise decision in a compressive manner. Nevertheless national youth policies remain fragmented and poorly funded while the youth sector seems to be in competition with its self and weaker than never (Gavrielides, 2013).

Putting this challenge in the context of a research, policy and practice area that has traditionally been under the radar, our partnership was faced with serious challenges. From the outset, we were clear that in order to achieve our objectives we had to work in collaboration with the youth and care sectors. The goal of C2W became clear and that was to bring together young people and professionals to establish a cross-sector, transnational strategic partnership in order to design and implement innovative practices and come up with a set of accredited, reference documents that will: (a) empower young BME carers, and (b) increase the capacity of service providers, notably in the areas of integration, equity and inclusion, and discrimination.