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Hughes, N. D., Closs, S. J., Flemming, K., and Bennett, M. I. (2016). Supporting self-management of pain by patients with advanced cancer: Views of palliative care professionals. Supportive Care in Cancer, 24(12), 5049-5057.
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Qualitative Research Critique Paper
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Qualitative Research Critique Paper
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Meaningful Evidence Useful to Practice
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Support Care Cancer (2016) 24:5049–5057
DOI 10.1007/s00520-016-3372-2
ORIGINAL ARTICLE
Supporting self-management of pain by patients with advanced
cancer: views of palliative care professionals
Nicholas D. Hughes 1 & S. José Closs 1 & Kate Flemming 2 & Michael I. Bennett 3
Received: 14 March 2016 / Accepted: 4 August 2016 / Published online: 24 August 2016
# Springer-Verlag Berlin Heidelberg 2016
Abstract
Purpose The aim of the study is to ascertain the views of
specialist palliative care professionals on patient selfmanagement of cancer pain in order to inform the development of a new educational intervention to support selfmanagement.
Methods This is a qualitative research study using focus
group interviews.
Results Participants viewed self-management of cancer pain
as desirable and achievable but also as something that could
be problematic. Challenges to self-management were perceived in patient attitudes and behaviours, professionals’
own beliefs and actions and the wider social system.
Practitioners showed awareness of potential tension between
their espoused views (the desirability that patients manage
pain autonomously) and their tacit views (the undesirability
of patients managing pain in ways which conflict with professionals’ knowledge and identity).
Conclusions Practitioners espoused patient-centred professional practice which inclined them towards supporting selfmanagement. They showed awareness of factors which might
inhibit them from effectively incorporating education and support for self-management into routine practice.
* Nicholas D. Hughes
[email protected]
1
School of Healthcare, Baines Wing, University of Leeds, Leeds LS2
9UT, UK
2
Department of Health Sciences, University of York, York, UK
3
Academic Unit of Palliative Care, School of Medicine, University of
Leeds, Leeds, UK
Keywords Self-management . Self-care . Cancer . Pain .
Education . Specialist palliative care . Focus group interview
Introduction
Self-management of chronic illness has been investigated over
several decades in numerous countries [1–7]. It includes dayto-day activities designed to control and limit the impact of a
long-term condition on both physical and emotional health
[8]. Specifically, self-management requires ‘an ability to monitor one’s condition and to effect the cognitive, behavioural
and emotional responses necessary to maintain a satisfactory
quality of life’ [2, p. 178]. Whilst the approach has been actively promoted on the basis of research findings which support its utility [9], claims for the benefits of promoting selfmanagement, at both the individual and health system level,
have also been subjected to critical scrutiny [10–12].
‘Self-management’ has been used interchangeably with
other terms such as self-care, self-monitoring and selfefficacy [13]. It is a relatively well-defined concept in longterm conditions such as arthritis, diabetes and asthma; but selfmanagement of a long-term condition has been seen as very
different from self-management of a life-shortening illness
[14]. Understanding of self-management in people with advanced cancer has been developing over the last decade or so
[15–20]. For example, research has shown that ‘self-action
strategies’ to manage the effects of advanced cancer on appetite and eating can lead to changes in patients’ thinking and
behaviour which enhance well-being [17]; the importance of
recognising and supporting patients’ self-management strategies in regard to medicines taking when their life expectancy
is reduced by advanced cancer has been demonstrated [18],
and, importantly, self-management has been shown to fluctuate during the trajectory of an illness, with advancing
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metastatic disease and/or feeling more ill prompting changes
in how actively individuals self-manage [19]. Supporting selfmanagement has become a standard approach for healthcare
professionals working with people who experience chronic
non-cancer pain [21, 22], and many studies and reviews have
reported that patient-focused educational interventions, including self-management, can also improve pain control in
patients with advanced cancer [23–30].
The aim of the present study was to ascertain the views of
specialist palliative care professionals on patient selfmanagement of pain from advanced cancer in order to inform
the development of a new educational intervention to support
self-management. Based on our extensive reading of the literature, we defined ‘self-management’ as any behaviour which
an individual engages in specifically to try and relieve, minimise or prevent pain or more broadly to cope with their illness.
We use the term ‘supporting self-management’ to refer to actions by healthcare professionals which provide information
or teach skills that can underpin patients’ self-management
behaviours. This study was part of a larger programme of
work, funded by the National Institute for Health Research
Programme Grant for Applied Research (RP-PG-061010114), designed to improve the management of pain from
advanced cancer in the community (‘IMPACCT’).
Materials and methods
Design, sample and setting
We conducted a qualitative descriptive study using focus
group interviews with a purposive sample of health and social
care professionals working in specialist palliative care services
in a large city in the North of England. We chose this setting
because these staff have the most frequent interaction with
patients who have advanced disease, and we thought they
would be best placed to comment on the concept of selfmanagement in this population. We recruited participants
from a variety of occupational groups through local clinical
networks, personal contacts and professional email discussion
boards. Seventeen individuals took part in focus group interviews, which took place in November and December 2013.
All participants received written information about the study
and gave written consent to participate. The study received
ethical approval from the NRES Committee East
Midlands—Nottingham.
The following professional disciplines were represented by
participants in the focus group interviews: community clinical
nurse specialists (6), complementary therapists (3), hospice
nurses (5), hospice social worker (1), hospice spiritual care
co-ordinator (1), palliative care consultant physician (1). One
palliative care consultant physician and one hospice pharmacist who agreed to participate were unable to attend the
Support Care Cancer (2016) 24:5049–5057
scheduled interview. Sixteen of the participants were female
and one male with a mean age of 47 (30–57 years). The time
they had been in their current role ranged from 2 months to
11 years. We sought to interview as many locally-based practitioners as possible, aiming to conduct at least one focus
group of 8–10 participants at each of two (hospice) sites.
Pragmatic considerations meant that although we recruited
sufficient for two groups, we actually conducted four group
interviews.
Interviews took place in hospice meeting rooms (two sites)
during working hours. The number of participants in each
group ranged from two to eight. Two focus groups were conducted with professionals from the same discipline (clinical
nurse specialists and day hospice nurses) and two with a mixture of participants from different professions. The strength of
conducting focus group interviews, in this context, was the
opportunity to hear a diverse range of views among a group
of practitioners who share a field of expertise. The group interview necessarily leads to the sacrifice of more in-depth
individual experiences and perspectives.
Data collection and analysis
We conducted a single interview with each focus group, exploring participants’ experiences and perceptions of what patients with advanced cancer do to manage their pain.
Discussion topics included patients’ use of medications and
of non-pharmacological methods of pain relief, ways in which
patients communicate about pain and participants’ views
about potential barriers to learning new methods of self-management. The average length of the interviews was 70 min.
Interviews were conducted by the first author, an experienced
qualitative researcher. In three of the four interviews, a research nurse assisted the interviewer as co-moderator. One
of the interviews comprised two participants only and we
thought that the presence of a co-moderator would unbalance
the dynamic of the interview. Field notes from the other three
interviews were recorded by the co-moderator, noting participants’ body language and interactions. The interviewer and
co-moderator debriefed after each session. Interviews were
digitally audio-recorded and transcribed verbatim by an administrative member of the research team. The first author
checked the accuracy of the transcriptions.
We examined the data using latent content analysis [31],
identifying all occurrences of statements about selfmanagement and attaching them to inductively derived concepts which we then explained and illustrated from the data
(see Table 1) We did this by first listening to the interviews and
reading the transcripts several times to reinforce familiarity
with the material. We then extracted sections of the interviews
in which participants talked about any aspect of self-managing
cancer pain. The first author coded each of the 27 data extracts
line-by-line using participants’ own words (in vivo coding)
Self-management works well in negotiation with the patient.
You need to choose the right patients for self-management, i.e. motivated
(not wanting to hand care over to professionals) and competent
(i.e. not cognitively impaired).
Self-management, variously defined, is an important way of patients having a
measure of control over what is happening to them.
Some patients hand over control of their illness to the medical profession, so it
is difficult to engage them in self-management.
Professionals tend to take over when patients are admitted (to hospice). Can
take away sense of control.
Some patients are happy to hand over control, giving them respite from carrying
responsibility for managing their pain.
Patients need education for self-management, including information and skills
instruction.
Specialist nurses are sometimes uncomfortable with autonomous patient
decision-making that does not accord with their sense of professional identity as people whose job it is to help people reduce their pain.
Disease stage can have a marked impact on motivation for self-management.
Self-management depends on patients accepting ownership of their pain.
Both individualised and general information recommended, in a variety of
formats that are accessible to patients and to family members.
Effective self-management is more likely when (a) the patient takes responsibility for their pain and (b) the nurse and patient negotiate ways of managing
the pain together.
Professionals are seen as having responsibility to be proactive in helping the
patient to gain knowledge and skills for self-management.
Patients sometimes hand over responsibility for pain management to a spouse,
who can feel it as a big responsibility, as though what they do can affect how
the pain relief works, or not.
Autonomy
Capability
Control [1]
Control [2]
Ownership
Resources
Responsibility [1]
Responsibility [3]
Responsibility [2]
Motivation
Identity
Education
Control [4]
Control [3]
Example from summary based on in vivo coding
[At a late stage of disease] patients are too fatigued. The concentration’s quite
poor, they’ve got multiple symptom burden and just have not got the energy
to do things on their own. They’re not motivated enough because of the
burden of the disease as a whole.
That’s when they can really start self-managing, if they realise the pain belongs
to them, not to somebody else.
If the patient was on a patch you would be putting the relevant information in
[to educational resources] so then you wouldn’t be overloading them or
having things that weren’t relevant to them.
If there’s stuff on a website it’s open for family members to be able to join in
with the information and the decision-making and feel more empowered to
ask questions of the professionals.
I said perhaps we need to increase it (analgesic dose) but she doesn’t want to at
the moment…I thought it was interesting that she still wanted to mention it to
me but she doesn’t want me to do anything about it.
It’s about thinking early enough in the course of somebody’s illness about being
proactive around what they will need later in their disease.
Some people will hand over to their spouse [and] they feel it as a massive
responsibility, as if they are in charge of the pain relief.
It’s about getting an understanding of what the patient wants […] one codeine at
night-time is unconventional but, for her, it works.
I think there are a lot of parameters around self management and given what one
of the things [P2] said earlier about the percentage of our patients who have
either temporary or permanent cognitive deficit you’ve to be very careful that
you choose the right people.
A lot of the advice and support patients get out of hours from the hospice is
really just guiding them through self-managing, facilitating them to manage
their pain—and it usually is sufficient.
You want the patient to be still in control […] but it depends how you define
self-management, doesn’t it, and what your concept of self- management is
for them at that stage. Self-management might be just for them to say that
they have got pain. That might be all the energy they’ve got is to say, ‘I’ve
got pain’ and to describe it very briefly.
If you say, ‘This is your pain, your body, you make the decision,’ it’s hard
because they’ve handed their bodies over to the medical profession.
I think sometimes we do have a tendency to take over (in hospice) and that
doesn’t allow them to be in charge of their pain.
It’s a relief if they have been carrying this (pain) for some time and they can feel
‘I want to hand it over to you so it’s your problem now.’
I feel that sometimes we need to just sit with them and help them to understand
their medication.
He would only use alternative […] we found it difficult because we’re geared
up to giving people something to make them comfortable.
Illustrative quotation
Self-management: summary of overarching concepts with illustrative quotations and related themes
Conceptual category
Table 1
Problematic
Achievable
Achievable
Achievable
Achievable
Problematic
Problematic
Desirable
Problematic
Problematic
Problematic
Desirable
Achievable
Desirable
Theme/perspective
on self-management
Support Care Cancer (2016) 24:5049–5057
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[32]. A descriptive summary of each extract was written,
based on the in vivo codes, with the addition of analytic memos which recorded first impressions and thoughts about the
context and meaning of the data. The descriptive summary
and analytic memos informed the next level of analysis whereby concepts embedded in the summaries were identified, extracted and discussed by the first and second authors. We
identified illustrative quotations from the data which reflected
each summary (see Table 1).
The trustworthiness of our data and analysis is supported
by the following factors: our study was co-designed with people who have advanced cancer; we used an experienced researcher and standard methods of focus group interviewing,
including use of a co-moderator; we used regular peer
debriefing throughout the period of data collection, analysis
and writing; and we subjected our findings to scrutiny and
dialogue at meetings of our wider research team and advisory
group. Confidence in trustworthiness is further enhanced by
our detailed exposition of methods; for example, we give an
account of how initial stages of data analysis evolved into a
more sophisticated coding structure and then into clearly defined concepts and explanations of the data [33]. Credibility
was achieved by peer debriefing and negative case analysis
[34]. We describe the context and the phenomenon of our
inquiry in sufficient detail for the reader to judge whether
our interpretation is plausible and credible [33, 35].
Results
We identified nine overarching concepts that related to health
and social care professionals’ views of the influences on patients’ self-management of advanced cancer pain: autonomy,
capability, control, education, identity, motivation, ownership,
responsibility and resources. Taken together, these concepts
informed three central perspectives in which participants
viewed self-management of cancer pain as (a) desirable, (b)
achievable and (c) sometimes problematic (see Fig. 1).
Self-management of cancer pain is desirable
Participants regarded self-management of cancer pain as an
important way for patients to have a measure of control over
what is happening to them. They viewed patients’ ways of
expressing control as a spectrum ranging from exercising total
autonomy and refusing offers of professional help, through
negotiated, collaborative decision-making, to the apparently
passive acceptance of help when too fatigued to act
independently.
I sometimes think it’s to do with control isn’t it? It’s
asserting control of the situation, you know, you can
understand why someone would want to. And the side
Support Care Cancer (2016) 24:5049–5057
effects of medication as well, they are often afraid of
that, if they have had bad experiences in the past, and,
yes, they want to keep themselves safe don’t they, and
symptom free? And sometimes I think that they know
how to do that better than anyone else. (P1, Int.2)
I think it’s always appropriate [self-management] because you want the patient to still be in control. They
have got no control of their cancer, have they? So
they still need to be in control of something. So I
suppose some self-management is there—but it depends on how you define self-management doesn’t
it, and what your concept of self- management is
for them at that stage. Self-management might be just
for them to say that they have got pain. That might
be all the energy they’ve got is to say, BI’ve got
pain^ and to describe it very briefly. (P4, Int.1)
Palliative care professionals also considered selfmanagement to be desirable because they believed it is unrealistic for them to provide comprehensive and complete solutions to the patient’s pain problems. Practitioners expressed
the view that self-management works best when patients act
autonomously, but in partnership with a health professional.
When patients’ autonomous decisions were based on information, dialogue and reflections on experience, they were more
readily supported by practitioners.
It’s about getting an understanding of what the patient
wants. One codeine at night-time is unconventional but,
for her, it works. (P4, Int.1)
I said perhaps we need to increase it [analgesic dose] but
she doesn’t want to at the moment. I thought it was
interesting that she still wanted to mention it to me but
she doesn’t want me to do anything about it. (P2, Int.2)
Self-management of cancer pain is achievable
Professionals identified a number of factors which enabled
patients to self-manage their cancer pain. First, they viewed
self-management as achievable if patients took responsibility
for ownership of their pain. Secondly, they believed that successful self-management was more likely to occur if professionals provided education for patients and carers on the purpose and role of their medications, and how to use them,
alongside non-pharmacological approaches to pain management. Finally, they regarded it as very important that professionals introduce self-management options early in the disease
trajectory when patients are well enough to learn about selfmanagement and act upon it.
Participants considered self-management to be more
achievable when patients were motivated to try it. Being motivated towards self-management could mean taking pain
Support Care Cancer (2016) 24:5049–5057
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Fig. 1 Overarching concepts
influencing practitioner
perspectives on self-management
of pain in advanced cancer
Identy
Concepts reported as influencing praconers’ perspecves
Praconers’ perspecves on self-management
Desirable
killing drugs as prescribed or negotiating for alternative ways
of using them. Participants reported that, for some patients,
engagement with non-pharmacological methods of pain relief
was an active and productive means of self-management. For
other patients, religious and spiritual practises were seen to
form an important part of coping independently with their
experience of pain.
Self-management was seen to be achievable when patients
responded to health providers’ initiatives to enhance abilities
for self-care. Day hospice nurses saw themselves and their
service as supporting patient self-management by giving information and education:
We promote and teach relaxation, and distraction, to
reduce pain and anxiety. Most people take to it, even
those who you think might not. Some people are a little
bit sceptical about it at first. But it is about promoting
self-help as opposed to us taking over and doing it all for
them. They’re going home after they’ve spent the day
with us, so we’re trying to get them to manage it at
home. (P2, Int.3)
Other hospice nurses suggested the use of a smart phone
app and a website which ‘would be open for family members
to join in with the information and decision-making. [They
would] feel more empowered to ask questions of the professionals’. (P2, Int.4)
Self-management of cancer pain is sometimes problematic
Practitioners sometimes regarded self-management behaviours as dysfunctional and potentially damaging, if they believed patients were acting on the basis of limited knowledge.
This included when patients took random amounts of liquid
Achievable
Problemac
morphine for breakthrough pain, took their partner’s medication or, as reported above, used non-conventional medications
whose properties were unknown to them. Some lifestyle adaptations were seen as counterproductive, too, for example,
restricting movements which caused pain, for understandable
reasons, then suffering the painful consequences of stiff and
immobile joints. Even simple, tried-and-tested selfmanagement strategies could go wrong, for example, using a
hot water bottle that was too hot and caused burns.
One participant (P3, Int.2) spoke of ‘always trying to
get the balance’ between supporting patients’ autonomy
and expecting that patients will follow professional advice: ‘That can be a challenge, because I think sometimes
we have our own agenda for things we want to treat and
we want to come away feeling we have done something.’
When patients exercised complete autonomy and rejected
their advice, professionals’ identity as expert problemsolvers could be compromised. One group of clinical
nurse specialists reported that they were sometimes wary
of recommending or supporting ‘alternative’, or complementary methods of pain control because of what they
described as the ‘medical model’ of training they had
received. They suggested that this form of professional
education led them to prioritise scientifically validated
knowledge. Their belief that complementary methods
may lack such validation made them cautious about
interpreting these approaches positively.
I’ve had a patient that wouldn’t use any traditional medication, would only use alternative and we all found that
very difficult to deal with. He would only use alternative…and he died having nothing [to relieve pain]. We
found it difficult because we are so geared up to giving
people something to make them comfortable. (P3, Int.1)
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I think it’s really difficult to manage somebody’s pain
when they are buying things off the internet, which they
have seen in journals or research, whatever. So families
are buying it, giving it to them, but you are trying to do
other methods down the same line and it muddies the
water […] Because you are fighting against their beliefs
[with] modern medicine, I suppose. (P2, Int.1)
For some participants self-management was conceptualised
more directly as the patient’s willingness to accept professional
advice, when necessary:
It’s about being willing to seek advice if something goes
wrong because many a time we’ll pick up difficult situations that could have been avoided had somebody picked up the phone and said, ‘This isn’t working, can I do
[something else]…?’ (P1, Int.4)
For this practitioner, it was important to ‘guard against
patients who self-regulate their doses’ and to promote ‘willingness to engage with a plan and stick to the plan and seek
advice if that plan starts to go wrong’. Another practitioner
suggested that patients who were deemed to be ‘competent’
could be taught to titrate their medicines within a pre-specified
dose range, to avoid problems posed by ill-informed self-regulation. Professionals sometimes perceived that patients handed over control to them, for a variety of reasons, and expected
them to provide all the solutions. This made it difficult to
engage them in self-management: ‘If you say, BThis is your
pain, your body, you make the decision,^ it’s hard because
they’ve handed their bodies over to the medical profession.’
(P3, Int.1).
Self-management was also seen as difficult to achieve
when professionals took too much control away from patients, for example, by introducing new medication regimens during hospice admissions without full explanation:
‘I think sometimes we do have a tendency to take over
and that doesn’t allow them to be in charge of their pain’
(P4, Int.2). In such situations, this nurse explained, it is
necessary to help the patient, and their relatives, to understand their new medication. She recommended education
via practical demonstrations, for example, helping patients
to practise drawing up liquid medications in a syringe
before they go home, to relieve anxiety and promote effective self-management. At the same time, practitioners
observed that some patients seemed content to hand over
control, giving them respite from carrying a burden of
responsibility for managing their pain.
Some participants reflected on the socio-demographic
context of providing educational material for self-management. They suggested that different populations have different capacities to ‘take up information’ depending on
how it is presented—for example, written materials have
Support Care Cancer (2016) 24:5049–5057
limited utility among people with low level literacy. The
conclusion here was that self-management education
needs to be made available to all, by providing it in a
range of formats.
I would worry that you will be targeting the middle
class articulate patients, not the ones who can’t read
or write. I’ve got many who can’t read or write. I’ve
got many that can’t speak English. I’ve got many that
have got no concentration to watch a DVD, who
can’t even afford to buy a DVD player to watch the
material that you are giving them; so I would worry
that if we are looking at giving them educational
material that it’s got to be targeted at everybody so
there is not an inequality. (P4, Int.1)
Discussion
Our findings suggest that health and social care professionals working in specialist palliative care have a nuanced and subtle understanding of patient selfmanagement in the context of advanced cancer pain.
Taking a person-centred perspective [36, 37], they viewed
self-management as, broadly, desirable—particularly as a
way of patients maintaining some control over their lives
[30, 38]. Participants described conditions under which
self-management can be achieved when patients are motivated towards self-action and capable of it, and they
reflected on challenges surrounding self-management
which they saw located in patient behaviours, in their
own actions and beliefs or in the wider social system.
With regard to the wider social system, lower social class
along with lower levels of literacy were seen to have a
potentially negative impact on capacity for making use of
educational materials which support self-management.
This concurs with findings from a sociological study of
self-management in people with coronary heart disease
which suggested that individuals with limited personal
resources or life-choices were less likely to engage with
self-management [39].
Professionals considered that their role in educating patients and their carers made an important contribution to
successful self-management. A key finding from studies in
this field is that education for self-management of cancer
pain should be integrated into routine practice [19, 29,
30]. Despite optimism that this can be achieved ‘without
undue extra resources or time’ [14, p. 393], there are numerous factors, often presented as barriers, which influence the
implementation of patient education for self-management—including health professionals’ knowledge, attitudes
and beliefs [26, 30]. Findings from our study extend our
Support Care Cancer (2016) 24:5049–5057
understanding of the type of factors which can inhibit practitioners from effectively incorporating education and support for self-management into their routine practice. Our
sample included a range of health and social care professionals who offered different perspectives on self-management. However, most of the participants were nurses which
may have led to a dominance of nursing discourse in the
data and in our interpretation.
Overall, participants’ accounts reveal a positive and sophisticated attitude towards self-management which does justice
to the complexity of the concept. Practitioners showed awareness of potential conflicts between their espoused views (it is
desirable that patients manage their own pain) and their tacit
views (it is not desirable that patients manage their own pain
in ways which conflict with professionals’ knowledge and
problem-solving recommendations). Having said this, there
is some evidence in our study of unconsciously held paternalistic attitudes towards self-management, expressed by one
practitioner as the need to ‘guard against’ patients’ selfregulation of medication doses. Previous research also suggests that healthcare professionals do not always recognise
or understand patients’ self-management behaviours—for example, the self-regulation of prescribed medication dosage
and timing in order to trade-off pain intensity against the impact of side-effects [40]—and thereby miss opportunities to
create supportive self-management partnerships with patients.
Healthcare providers require a sophisticated understanding of self-management in the context of healthcare
systems where self-management is increasingly promoted
as a means to optimise patients’ health whilst also looking
for a reduction in their use of health services [10]. Both of
these can be seen as reasonable aims. Management of
long-term health conditions must, by their very nature,
be incorporated into the person’s daily life and only a
limited part of that life will include contact with
healthcare professionals. Whatever a person can be taught
and encouraged to do by way of maximising their health
in these circumstances can be seen as beneficial to them.
Even in a condition such as advanced cancer, where there
may be a shortened lifespan and more frequent interaction
with healthcare professionals, self-care behaviours may
contribute to reduced symptom burden and improved
quality of life [14]. In a health system with finite resources, it is rational to find ways to reduce utilisation
of services and hence lower expenditure, where those reductions do not compromise an individual’s health status.
At the same time, individual capacities and preferences for
self-management are likely to vary according to health status
[14, 19], learning styles [24] and socio-demographic profile
[1, 39]. Over-enthusiastic and simplistic promotion of selfmanagement might risk reinforcing inequality in favour of
those individuals and groups with greater resources for selfcare. As some participants in our focus group interviews
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argued, the ‘articulate middle-class’ may access selfmanagement support disproportionately whilst those with
fewer resources, and arguably greater need, might receive less
support [41].
Conclusion
Health and social care professionals working in specialist palliative care viewed self-m
