Allvin Et Al 2019
Allvin Et Al 2019
Allvin Et Al 2019
DOI: 10.1002/nop2.290
RESEARCH ARTICLE
1
Clinical Skills Center, Örebro University
Hospital, Örebro, Sweden Abstract
2
Faculty of Medicine and Health, School of Aim: The aim of this study was to describe how patients with chronic back pain expe‐
Health Sciences, Örebro University, Örebro,
rience encounters with health care. Persons with chronic back pain are a stigmatized
Sweden
3
Departments of Orthopedics, Örebro
group often treated based on stereotypes, which may lead to misunderstandings and
University Hospital, Örebro, Sweden create frustrated patients and healthcare personnel. Few studies have examined the
Correspondence
generic aspects of quality of care in this context.
Renée Allvin, Faculty of Medicine and Design: A descriptive design with a qualitative approach was used.
Health, Örebro University Hospital, School
of Health Sciences, Örebro University, S‐702
Methods: Nine individual interviews were conducted with chronic back pain patients
81 Örebro, Sweden. after admission to an orthopaedic hospital ward. Data were analysed using content
Email: rene.allvin@regionorebrolan.se
analysis.
Results: The patients’ experiences of healthcare encounters can be described by the
theme “Struggling to be seen and understood as a person,” comprising the categories
“Lack of access and trust to care,” “A desire to be taken care of and listened to” and
“Own strength to handle healthcare situations.”
KEYWORDS
chronic back pain, experiences, patient–provider relationship, person‐centred care
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© 2019 The Authors. Nursing Open published by John Wiley & Sons Ltd.
personnel and laypersons (De Ruddere et al., 2014). Healthcare according to the inclusion criteria to participate in the study the day
personnel have described emotional frustration in dealing with pa‐ after admission to the ward. The inclusion criteria were having back
tients without physiological explanations of their pain (Matthias et pain for a period of three months or more and previous contact with
al., 2010). It has been found that healthcare personnel take the pain health care due to back pain. Patients undergoing back surgery or
of patients they have a poor relationship with less seriously than the nerve blocks at the time of study or suffering from dementia or other
pain of patients they like (De Ruddere et al., 2011). cognitive impairments were excluded. The first ten patients were
Persons with CBP sometimes feel obliged to adapt their be‐ invited by one of the authors (EF) to participate in the study. One
haviour to others’ expectations, resulting in withdrawal from social person was excluded after the request due to newly diagnosed acute
contacts (Osborn & Smith, 2015) and sometimes in reluctance to cognitive failure. In total, nine persons, five women and four men
seek care for their pain (Matthias et al., 2010). 39–74 years old (median, 66 years) participated in the interviews.
Considerable medical research activity has targeted CBP. They had been suffering from back pain for between 1–57 years
Previous qualitative research in the area has investigated expecta‐ (median, 23 years). Everyone was of Nordic origin and lived with a
tions and beliefs underlying diagnostic tests and treatment (Dima et partner; one had children living at home. Four persons worked, one
al., 2013; Georgy, Carr, & Breen, 2009; Verbeek, Sengers, Riemens, had retired early, one was unemployed (due to back pain), and three
& Haafkens, 2004), lived experiences (Hopayian & Notley, 2014; were retirement pensioners.
Osborn & Smith, 2006; Walker, Sofaer, & Holloway, 2006) and ac‐
cess to treatment services (Slade et al., 2009). Other studies have
3.2 | Data collection
focused on developing instruments to measure back pain‐specific
expectations regarding consultant outcome (Georgy, Carr, & Breen, Individual semi‐structured interviews (Kvale & Brinkmann, 2009)
2013). Few studies have examined the generic aspects of adequate were conducted between April to May–September to November
care (for example a person‐centred care and appropriate treatment) 2014 by one of the authors (EF) using an interview guide designed
in this context. The relationship between healthcare personnel according to the aim of the study (Appendix). The interviews started
and patients is essential. Persons with CBP might experience dif‐ with an open‐ended question: “Please, tell me about your back pain.”
ficulties in encounters with health care due to stigma. Improved If patients did not know what to say, they were asked to start from
knowledge and understanding of patient experiences may lead to the time their pain began. Afterwards more specific questions were
changed healthcare personnel behaviour, which in turn could gener‐ asked, such as “How have you experienced yourself being treated
ate changed patient responses, contributing to better and safer care. by healthcare personnel in relation to your back pain?”; “Can you
The aim of this study was therefore to describe how patients with tell me how you handle your pain?”; and “How do you behave so
CBP experience encounters with health care. that healthcare personnel understand your pain?” To reach a deeper
understanding, probing questions were asked, such as “Could you
describe that in more detail?”
3 | M E TH O DS A pilot interview was conducted to improve the interview guide.
This resulted in an emphasis on creating a relaxed atmosphere, so
The study has a qualitative descriptive design (Polit & Beck, 2016) the interviews started with the more general invitation to talk about
where individual interviews were conducted with CBP patients. experiences of back pain, before proceeding to more sensitive is‐
sues, such as experiences of treatment by healthcare personnel. The
pilot interview was not included in the data analysis. Demographic
3.1 | Participants and setting
data were verbally collected at the beginning of each interview. The
Participants who were included in the study were persons who interviews were conducted at a time during the daytime that suited
experience CBP and contact the health care to get help with their the patients, in a room in an orthopaedic hospital ward, free of dis‐
pain. They are admitted to the hospital by a referral from primary turbances. The patients chose whether they preferred to sit on a
care doctors or through the emergency department. In Sweden, the chair or lie on a bed brought into the room, depending on their back
health care is managed and run either by the county council, local pain. All the interviews were audio‐recorded and lasted 35–95 min.
authority or municipality. This study was carried out at an ortho‐ At the end of each interview, the interviewer summarized the con‐
paedic department at a University hospital in the middle of Sweden. tent of the interview to ensure that all were understood and if the
The department included two inpatient wards divided into different participant would add or revise something. All interviews were tran‐
sections of which one cared for patients with back disorders. Other scribed verbatim by one of the authors (EF).
sections cared for patients after a variety of surgical procedures, for
example hip replacement and knee replacement, trauma and recon‐
3.3 | Data analysis
structive surgery and ligament reconstructions. Registered nurses
on the ward were responsible for the overall care of patients. Demographic data were managed using Excel. The interview data
Patients who sought acute hospital care for CBP were identi‐ were analysed using qualitative content analysis (Graneheim &
fied on the departments’ inpatient lists and consecutively invited Lundman, 2004). As a first step, the transcribed interviews were read
ALLVIN et al. | 3
TA B L E 1 Subcategories, categories
Subcategories Categories Theme
and an overall theme
Being disbelieved Lack of access and trust Struggling to be seen
Lacking confidence in health care to care and understood as a
person
Being isolated in a system
Wanting to be cared for A desire to be taken care
Being listened to of and listened to
patients trusted the doctor's knowledge. Sometimes, however, doctors all the time. The lack of continuity and a holistic perspective
they experienced that the doctor from the outset already had the was particularly prominent among patients with complex medical his‐
attitude that nothing more could be done for them, which engen‐ tories. Even the healthcare system itself, which is governed by laws and
dered a sense of powerlessness: regulations, could create a sense of loneliness:
The feeling I get is that “back problems” are very com‐ But I feel they don’t care because it’s beyond their
plicated … and I mean, the physiotherapist … and the reach. They must follow the standards of social
doctors … it feels like they do not want to pay any welfare and not act on their own resolve and will.
attention. [Leif, male 60 years] [Fredrik, male 55 years]
Negative experiences of healthcare encounters caused a lack of The feeling of being isolated in a system also occurred when the
trust. Several patients stated that medical treatment and care were patients perceived that healthcare personnel did not want them to stay
often performed based on the premises of the healthcare personnel. in the ward. They often felt as if they were in the way, in the wrong
For example, one patient described being forced to stay in extremely place.
painful positions during X‐rays, even though she was screaming and
crying. They believed that healthcare personnel were probably follow‐
4.3 | A desire to be taken care of and listened to
ing guidelines and routines instead of listening to the patients’ wishes.
However, healthcare personnel could change if proved wrong: The patients expressed a desire to be cared for in their encounters
with healthcare. They appreciated when healthcare personnel took
I cannot forgive them – there must be other ways. time, even though they were under pressure and when they of‐
They got no [x‐ray] images using their way of doing fered care without being asked. Healthcare personnel were often
it. When they realized it, they changed and said that described as friendly and kind, which were considered essential
I would be x‐rayed in a standing position – THEN it qualities. The patients also highlighted the importance of humour
worked! [Anne‐Catrine, female 69 years] and despite being in a serious situation, they needed that type of
response.
Realising that healthcare personnel did not understand their prob‐ It was considered important to know that pain medication and
lems resulted in frustration and resignation: even hospitalization were options if needed and that healthcare per‐
sonnel would evaluate the effects of administered treatments:
I feel resigned because I know I cannot do anything
about it. I can only accept that they do not do any‐ I know that I never will be completely pain free, I’ve
thing. I cannot change that. [Fredrik, male 55 years] never been. He [i.e., the doctor] sort of helped me …
titrated the dose needed, didn’t just give “30 mor‐
The patients also described huge differences between different phine”, for example, but took one step at a time and
healthcare providers, which resulted in a lack of confidence: finally found the right level. [Ulrika, female 42 years]
When I’ve been taken care of at other hospital wards, A feeling of being listened to arose when healthcare per‐
they’ve given me hot rice bags and hot water gloves. sonnel clearly demonstrated that they understood the patient's
If I’ve been crying, they’ve stayed by my side. Sort of problems:
taking me away from the pain and giving me positive
thoughts. In this hospital ward, no one has done that. They show empathy, they care, particularly the nurses.
It might differ a lot from ward to ward, one almost Of course, they work in this profession because they
gets scared. [Ulrika, female 42 years] care about people. As do the doctors, when you are
really in pain… [Fredrik, male 55 years]
The patients often experienced being shuttled between healthcare
providers, with no one being able or willing to answer for the whole This feeling could also be achieved when personnel apologized
picture. Each specialist saw only a minor part of a complex problem: for bad behaviour and explained that it was due to heavy workload
or stress. The value of being confirmed in their right to seek care was
Our specialists are skilled, but sometimes they are emphasized:
blinkered regarding the whole. [Ulla, female 74 years]
She [i.e., the doctor] never thought I was one of those
Coordination and cooperation between different specialties re‐ who want to consult the doctor all the time, if they
duced the sense of hopelessness. However, the patients could even even exist … I have a hard time believing it.
feel abandoned within a single specialty if they had to meet different [Britta, female 70 years]
ALLVIN et al. | 5
The patients also felt cared for when they perceived different patients said that they knew their body and how it functioned and
healthcare providers and organizations coming together to provide that they had their own purpose for the future, which gave them
them with care based on a holistic perspective and they were seen as inner strength. Some of the patients experienced frustration when
individual persons instead of simply diagnoses. In contrary, a sense of healthcare personnel did not understand or listen, but through their
not being accurately cared for triggered negative feelings. The patients inner strength they had the power to be stubborn and go on explain‐
often felt that nobody took the time to answer questions. Although ing until they perceived that the personnel understood. Several pa‐
they often understood the underlying reasons for it, the patients still tients also had a strong self‐image, which gave them the strength to
did not like unpleasant treatment. They had experienced doctors who question therapy proposals that they did not feel comfortable with.
did not fully agree on their diagnoses, problems and requests for treat‐ Sometimes this strength could be an obstacle, as they did not want
ment. One patient explained that she had been prescribed psychotro‐ to show weakness and therefore made greater efforts than they
pic drugs, even though she herself thought her sadness was due to her could handle:
back pain:
I don’t want people to feel sorry for me and that
I’d probably said something silly, when I didn’t get a makes it difficult for me. If someone says, “Sit down
response … Then I asked the doctor if the next step and relax because you’re in pain”, then I instead do
was to die. That was when she prescribed antidepres‐ more to show that I’m not disabled.
sants. [Ulla, female 74 years] [John, male 39 years]
The overall healthcare system is facing major challenges when research has described how healthcare personnel sometimes expe‐
it comes to creating organizations that promote a person‐centred rience frustration and a sense of guilt in meeting patients with CBP
approach to dealing with CBP patients. The participants in this study (Matthias et al., 2010). The patients may discern this frustration and
argued that the high level of specialization meant that the doctors, make incorrect interpretations, which could explain why the patients
nurses and physiotherapists they met saw only minor parts of a in this study described what they perceived as bad behaviour by
complex problem. Their experience was that no one had a holistic healthcare personnel. Having a common approach to back pain and a
perspective. There is a need for balance between fixed structures structured plan for treatment and care created through cooperation
for care and treatment, on the one hand and individual wishes and between healthcare personnel and patients might well improve the
needs, on the other. Both perspectives are in various ways prereq‐ care relationship, benefitting both patients and personnel.
uisites for safe and quality care. The healthcare professions can be
expected to find this balance. Persons with CBP often seek care
repeatedly and from multiple healthcare providers, so it may be 6 | M E TH O D O LO G I C A L LI M ITATI O N S
beneficial to have a contact person who helps the person maintain
continuity in care. A review of qualitative studies of patient expe‐ In responding to the study's aim, the choice of a qualitative descrip‐
riences with care showed that having a trusted clinician who helps tive design allowed the participants to express their own experiences
the patient navigate the healthcare system and sees the patient as and that is a strength of this study. This is particularly important in
a partner strengthens continuity (Haggerty, Roberge, Freeman, & the light of the few studies in this research area. One limitation is
Beaulieu, 2013). Introducing contact nurses for people with CBP the convenience sample of patients, which might have selectively
and evaluating the treatment outcomes could be interesting from included patients who were “healthier,” as they had sufficient energy
the patient and healthcare personnel perspectives. Furthermore, and ability to attend an interview. It might also be that patients who
prioritizing reflection in the team around the patient could be en‐ had negative experiences of health care responded to the study to
lightening, helping develop healthcare personnel working with peo‐ a greater extent. These limitations must be taken into consideration
ple with CBP. when interpreting the results. Another limitation of the study is the
The participants in this study described contradictions in their few participants included and conclusions should therefore be made
encounters with health care. They described feeling alone in the with cautions. However, all the interviews yielded rich and deep de‐
healthcare system, forced to adapt to care and its conditions, at the scriptions of the phenomena of interest. Several illustrative exam‐
same time as they said that the healthcare personnel were fantastic ples were cited throughout the interviews. The sample also included
and treated them properly. It has been said to be of secondary im‐ participants of both genders and various ages. The credibility of the
portance that a person‐centred approach be used at the individual study was strengthened by striving for a comprehensive methodol‐
level between patients and healthcare personnel, if the healthcare ogy where the different stages of the analysis phase are presented.
organization is not structured in a person‐centred way (Morgan & In the analysis process, consensus about the meaning of the data
Yoder, 2012). A misalignment between the organizational structure was reached after reflections and several discussions between the
and the attitude of individual healthcare personnel might explain the researchers to ensure confirmability.
contradictory feelings of being well cared for and simultaneously
alone in the system. To break a negative pattern, it is important for
healthcare personnel to understand patient dissatisfaction with the 7 | CO N C LU S I O N S
relationship to the healthcare organization and use this insight to
bring about improvements (Jangland et al., 2011). The present findings provide insight and understandings of CBP pa‐
It could be debated whether the description of being disbelieved tients’ encounters with health care. They described that they experi‐
in the present study can be linked to distrust. The participants said ence vulnerability based on not having the opportunity to influence
that they longed for explanations of why they were suffering from their own situation in healthcare organizations that lack flexibility.
back pain. The fact that healthcare personnel did not propose fur‐ Instead of feeling seen and understood as individual persons, they
ther investigations could have reinforced a feeling of distrust, as the often leave encounters with health care with a sense of disappoint‐
patients did not have diagnoses that identified the source of their ment, powerlessness and impaired self‐confidence. All healthcare
pain. Earlier studies confirm that patients with CBP experience their professionals who meet CBP patients must understand that their
pain as legitimate when there is physiological evidence for it (Slade own approach in these meetings can be decisive for how the patients
et al., 2009). A possible explanation of the negative communication handle their life situation. It is a major challenge to create an organi‐
pattern is the stigmatized view of the patient's discomfort, which zation that promotes a person‐centred approach in meeting patients
creates a barrier to communication that complicates person‐centred with CBP. Creating and implementing structured plans for treatment
care. Dinc and Gastmans [22] characterized trust as “an attitude of and care, taking both patients’ hopes and medical/healthcare limita‐
relying with confidence on someone.” To recognize patient vulner‐ tions into account, are crucial for creating the basis of a trusting re‐
ability, nurses must be aware of the unequal power relationships lationship. Prioritizing reflection in the team around the patient and
between them and patients (Dinc & Gastmans, 2012). Previous introducing contact nurses (i.e. a special nurse for every patient, who
ALLVIN et al. | 7
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