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doi: 10.1111/j.1752-9824.2010.01056.x

The meaning of self-care for people with chronic illness

Debbie Kralik


General Manager, Strategy and Research, Royal District Nursing Service, South Australia, Australia

Kay Price


Senior Lecturer, School of Nursing and Midwifery, University of South Australia, Australia

Kerry Telford


Research Associate, Research Unit, Royal District Nursing Service, South Australia, Australia

Submitted for publication: 8 October 2009

Accepted for publication: 10 March 2010

Debbie Kralik
Royal District Nursing Service
South Australia 5034
Telephone: +61 8 82085368
E-mail: debbie.kralik@rdns.org.au

K R A L I K D , P R I C E K & T E L F O R D K ( 2 0 1 0 ) Journal of Nursing and Healthcare of

Chronic Illness 2, 197204
The meaning of self-care for people with chronic illness
Aim. To reveal the meaning of self-care as described by men and women living with
chronic conditions.
Background. Chronic illness self-care and self-management are terms that have been
used interchangeably in the literature. Self-care in the context of chronic illness has
received some research attention, but remains an under-explored concept.
Methods. Conversation data were gathered using longitudinal email groups facilitated by the first author over a 21-month period between 20032005, with 42 men
and women living with chronic illness.
Results. Self-care is a process of adaptation in response to learning about oneself
and about ways to live well with illness. Developing capacity to self care impacted
significantly on the way participants experienced illness, their view of themselves
and of their future.
Conclusions. People living with chronic illness describe the process of self-care as
transformational in terms of feelings about their selves and reclaiming a sense of
order. It enables them to move forward with a sense of the future. The primary
health care principle of holistic assessment, taking account of the wider context of
peoples lives, is of heightened importance when educating about self-care.
Relevance to clinical practice. Health care workers can assist people by acknowledging that chronic illness self-care is a process that gradually evolves and is borne
out of listening to the persons priorities and finding ways for strategies to fit harmoniously alongside those priorities.

Key words: chronic illness, self-care, self-management

Effective chronic condition self-management has been advocated at both individual and population levels (World Health
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Organisation 2005). Effective management of chronic conditions is often described in relevant literature in terms of
providing education programmes to enable self-management
or self-care as though these two terms have the same

D Kralik et al.

meaning. However, a small body of literature proposes that

self-care may be a different concept from self-management
(Paterson et al. 2001). In this study, we used the relevant
literature and report research findings that explored the
meaning of self-care from the perspective of people with
chronic illness. The implications for clinical practice are

Self-management education programmes were initially
developed for people living with arthritis (Lorig & Holman
1993); however, authors have argued for the programmes
applicability across chronic conditions (Redman 2004).
These programmes have focused on encouraging behaviour
change by teaching individuals to identify problems, consider alternatives and monitor outcomes from decisions
(Redman 2004). The longer term sustainability of behaviour
change, however, has not been reliably demonstrated. There
is evidence to link self-management education to the support
people with chronic conditions need to reduce hospitalizations, emergency department use and overall managed care
costs (Coleman & Newton 2005). Self-management education has been reported as enabling people to minimise pain,
share in decision-making about treatment, gain a sense of
control over their lives (Lorig & Holman 1993, Barlow
et al. 1999), reduce the frequency of visits to medical
doctors and have an improved quality of life (Lorig et al.
1998, Barlow et al. 2000). The validity and reliability of the
methodologies employed in the programme evaluations have
been questioned (Taylor & Bury 2007), in particular,
because of self-section of volunteers rather than representative sampling. In addition, it is not possible to ascertain
from the research reported whether benefit from participation in self-management courses is sustained past six
months, or if the process of adjustment that participants
experienced is the same that would otherwise have occurred
through daily experiences of living with a chronic condition
(Taylor & Bury 2007).
This programmatic self-management education approach
has been further criticised because it rests on the assumption that people will make effective self-management
decisions if they have been educated about their condition
(Anderson et al. 1991, Paterson et al. 2001). Redman
(2005) argued that health professionals, when delivering
self-management education, may reinforce the notion that
they are the experts and that can undermine the persons
confidence in their own judgements. Furthermore, there are
significant barriers for people accessing self-management
courses and resources including a lack of awareness,

physical symptoms, transportation problems and associated

costs (Jerant et al. 2005). In addition, people striving to live
well may resist being labelled as chronically ill (Taylor &
Bury 2007). Depression, weight and mobility problems,
difficulty exercising, fatigue, poor physician communication,
low family support, pain and financial issues have been
identified as barriers to active self-management (Jerant et al.
Self-care in the context of chronic illness has received some
research attention, but remains an under-explored concept
(Meetoo 2004). Self-care has been defined as personally
constructed, changing over time and in various situations
entailing a complex interplay of mediating and contextual
influences and arising from an authoritative knowledge that
evolves in living with the disease over time (Paterson et al.
2001, p. 340). Drawing on the work of others (Von Korff
et al. 1997, Pincus et al. 1998), Thorne and Paterson (2001,
p. 82) conclude that self-care refers to the full range of
activities that persons with chronic illness may adopt to
promote their health, augment their physical, social or
emotional resources, and prevent adverse sequelae from their
disease. Paterson et al. (2001) synthesised conceptualisations
of self-care in which it is portrayed as a rational, practical
decision-making process, which centres on compliance to a
prescribed medical regime. To the contrary, they suggest that
self-care is a dynamic, intensely individual process that
reflects a knowing about the body and the way it responds to
illness. Medical or health advice may or may not inform a
persons everyday self-care decision-making, which is in
contrast to the concept of self-management where health
practitioners advise and assist people and their families to
acquire the skills and confidence to enable them to manage
their chronic condition (Bodenheimer et al. 2002).
The process of people learning to live with chronic
conditions creates the circumstances where people and health
professionals must interact (Thorne et al. 2000). Self-management has been consistently advocated as a way that the
impact of chronic disease can be contained through health
workers and client working in partnership (Wilde & Garvin
2007). Self-care, however, is considered the process of people
learning ways to adapt to the changes that are taking place in
their life because of illness and to learn ways to deal with all,
that living with chronic illness entails, including symptoms,
treatment, physical and social consequences, and lifestyle
changes and disruption (Kralik 2008).
A complex interaction of social, lifestyle, economic,
environmental, behavioural and genetic factors will determine an individuals health status (Australian Institute of
Health and Welfare 2006). For example, people with diabetes
may also have hypertension, high cholesterol, be overweight,
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Original article

and have vision impairment and vascular disease. The actual

clinical contact that provides opportunity to learn about selfcare for this combination of chronic conditions will equate to
only a few hours each year. Following diagnosis and being
given prescriptive advice, people themselves must learn how
to incorporate treatment regimes and the consequences and
symptoms of the conditions into their everyday lives. Understanding what self-care means for people with chronic
conditions can support health professionals in recognising
that people themselves are the principle caregivers and
decision makers.

To reveal the meaning given by adults living with chronic
illness to the experience of self-care.

Conversation data were gathered using longitudinal email
groups facilitated by the first author over a 21-month period
between 20032005. Understandings gained from previous
research of some of the consequences and challenges that
confront people living with chronic illness in their daily lives,
such as pain, decreased socialisation and mobility, have
revealed limited opportunity for them to participate in groups
or face-to-face interviews (Kralik et al. 2004).
The degree to which the Internet or the World Wide Web
(WWW), as a worldwide computer network, has enabled
people using computers connected to the Internet to communicate with each other has been phenomenal. The Internet has
led to the development of cyber communities where people
with common interests can communicate with one another,
transcending geographical boundaries (Kralik et al. 2006a,b).
Computer-mediated communication (CMC) is the term used
for the direct use of computers in a text-based communication process (Mann & Stewart 2000, p. 2). The Internet
makes possible many different CMC types and as researchers,
we recognised the potential of the Internet for CMC using
email between research participants (Kralik et al. 2005).
Using email correspondence provided the opportunity to
conduct research with people over an extended period of
time, at a convenient time, at their own pace and irrespective
of geography. Three groups of participants (a pilot group
with women, a group with men and a group with women)
have been engaged in facilitated dialogues. The research team
engaged in regular email conversations using mailing list
software, thereby, creating building blocks of text that, when
analysed, explicated the experience of incorporating a longterm illness into daily life.
 2010 Blackwell Publishing Ltd

Self-care for people with chronic illness

The methodology is an interactive participatory action

research programme with participants. A learning circle
developed in these groups, which fed into the cycle or circle
of participatory action learning, because story telling was
privileged in this type of on-line community discussion.
Reflective conversation was promoted rather than the
spontaneous conversation that occurs in a face-to-face
group conversation. Participants contributed in their own
time and at any time of the day. Questions asked during
conversation with participants assisted in focusing the topics
of discussion. Examples of questions were what does
self-care mean for you? How do you self care? What assists
you to self care?

Criteria for participation in the research were men and
women aged over eighteen years, had lived with a chronic
condition for longer than twelve months, had regular and
reliable access to a computer with internet connection and
were able to communicate in English. Twelve men and thirty
women aged between 2165 years agreed to participate.
People were invited to join the research through articles
placed in newsletters and websites of health support organisations. The research was not specific to a medical diagnostic
group, but rather relied upon the participants own construction of chronic illness and the way it impacted upon their lives
(Kralik et al. 2001). Participants had diverse and multimorbid medical diagnosis that included chronic fatigue
syndrome, psoriatic arthritis, osteoarthritis, fibromyalgia,
ulcerative colitis, diabetes, multiple sclerosis and chronic pain.

Ethical considerations
Ethics approval to undertake the study was obtained from a
university ethics committee. Consent was obtained from all
participants prior to joining the study. The ethical considerations in this study were many that email was used as a mode
for data collection, hence a detailed discussion of the ethical
considerations regarding this project has been published in
another article (Kralik et al. 2005, 2006a,b). Pseudonyms
have been used in this study.

Data analysis
Data analysis involved bringing together all emails that were
related to the conversational thread about self-care in the
lives of the participants. The context of the dialogue was
preserved because the authors were involved in the conversations. Analysis of email data was undertaken by reading

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through the text to gain further familiarity with the words

and the order in which they had been written. The significant
statements as expressed by the participants were determined
by reading and re-reading the emails and then identifying or
separating the statements that highlight the participants
experiences in relation to self-care. Meaning units were then
developed which comprised a significant statement supported
by verbatim quotes from the participants. The cluster
meaning units were developed into themes. Commonalities
and variations were extracted and major themes were
derived. A descriptive statement and participant quotes
illustrate the themes. The themes were then returned to the
participants for further discussion and validation. Participants recommended minor changes that were undertaken and
validated the findings.

when it interfered with their well being and how to adjust

their lives so that they could find a balance between
maintaining well being and living life. Self-care was prompted
by life issues rather than prescribed medical treatments as
Olympia shared:
Much of what we do and come to know about our long-term
conditions comes from every day experiences of living with it
(practice)... and through routine contacts with others and information sources (like the Internet). The reasons for undertaking self-care
are not usually medical, but life issues.

Participants learnt to adopt a new vision of themselves and

their lives that incorporated illness. Graham wrote:
The illness was slow coming on and early stages were brushed off
as several minor annoyances. As it progressed and increasingly
interrupted my lifestyle, I still felt it would go away and I could


return to as I was. Not exactly denial, but determined that my

life would not be severely disrupted for long. Over time as the

Self-care: a sense of being and becoming

Participants revealed that while self-management education
plays an important role to understand the biomedical
construction and consequences of the disease process, selfcare involves a dynamic, experiential process of learning,
trialling and exploring the boundaries created by illness. Selfcare was more than doing but was entwined with a sense of
being and becoming. It is a process that involved identifying ones psychological and physical responses to illness
and constantly planning, pacing and managing daily life as a
means of creating order.
Participants revealed that self-care is a process of adaptation in response to learning about oneself and ways to live
well with chronic illness. Developing capacity to self care
impacted significantly on the way participants experienced
illness, their view of themselves and of their future, which
was revealed in the following themes:
Self-discovery through self-care.
Self-care as a process of learning.
Reclaiming a sense of order.
A new vision for the future.

disruption of it became chronic and I had to learn to change my life to

suit the illness, it became a very depressing time until I learned to accept
that it was with me for a long time. I needed to adapt to it to survive.

For Di, illness is a constant companion and self-care included

adapting the way she thought about life:
I have learned everything I can about my disease and once I have
digested the fact that the symptoms could disable me from time to
time, if not always, my mind turns to positive thoughts and new
tactics to still enjoy life even though my persona becomes less
spontaneous. I see the trivialities of life more clearly and try to rise
above them. I recognise that I live with a degree of sadness because
I have a chronic illness. My sense of humour has improved and I view
the difficulties of life more calmly. When I do feel well, I do as much
as I can to enjoy myself. I never let fear take hold.

Maris experiences of diabetes seemed to defy the text books,

which added complexity to the way she lived with diabetes,
the expectations others placed upon her and the expectations
she placed upon herself. Yet, these challenges bought
personal growth:
I started my life with diabetes with much hope and determination. Yet
my body seemed to defy usual diabetes explanations, causing

Self-discovery through self-care

Participants discussed that learning to live with chronic
illness can be experienced as a convoluted roller coaster ride
with many ups and downs. Participants described confronting and challenging times, how they had coped, learned what
helped and what did not, and arrived at a point of
understanding about how illness could have a place in their
lives. They learnt new ways to think about illness, what to do

frustration and disillusionment. Subsequently, my illness provoked

some of the saddest times in my life. I questioned my worth and value
as a human being because illness is all I saw in me for a long while.
Now that I have found my place in this world, I see my journey with
illness as something that has allowed me to conquer through challenge.
While there is nothing inherently pleasant about illness, I can see
how Ive grown through the experience. This journey has been one of
self-discovery physical, psychological, emotional and spiritual.

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Self-care as a process of learning

Participants email discussions often focused on challenging
or adverse experiences. For some, the demands that illness
made on their lives and the challenges they were confronted
with resulted in an awareness of their needs and opportunities for valuing of themselves. They discovered aspects of
their personality that they had not been aware of prior to
illness such as courage, determination and resilience as Mari

Self-care for people with chronic illness

nurturing ways and learnt about what was helpful in

minimising and managing symptoms, they regained a
confidence that they could overcome whatever challenges
they were confronted with. Reclaiming order was closely
associated with positive feelings about themselves which had
developed as a result of learning how to self care. Di
explained that she found ways to cope with the unpredictability that illness created:
life has so many unexpected happenings. I have a better sense of
myself I have a much better understanding of how to deal with

Perhaps the one biggest benefit of experiencing illness is learning from

the unpredictability, uncertainty and the guilt from having to

it. I listen to my body. I respect myself. Illness has also broadened my

impose on loved ones when I am ill and somewhat disabled. In

worldview, taught me about compassion, forgiveness and dealing

general, I have become aware of my ability to be determined and

with imperfection.

resilient. Key elements would be a growing confidence in my ability

Participants learnt to be attentive to the ways their bodies

were responding, identify patterns in those responses
and realise that adaptation to new life circumstances meant
a process of trial and error. For some, it was the first
time they had focused on themselves as a priority as Di
I have found out a great deal about myself. I know that I am not
invincible and that illness doesnt just happen to other people, yet my
character and personality have strengthened with much less reliance
on worrying about what other people think. I have gained a better

to deal with illness and unsympathetic acquaintances; staying calm

and putting lifes events into perspective; knowing that everyone is
going to die some time and fear not; enjoy everything that gives you
joy, a good laugh, or wonder at the beauty of a flower, leaf or the
full moon.

For Chrispy, having knowledge about illness and sharing

experiences with others were driving forces in her capacity to
self care and regain a sense of control in her life. She
explained how this has enabled her to have confidence that
she would bounce back from bad times.

understanding of other peoples illnesses, the impact on individuals

Knowledge is power, in that I better understand exactly what is

lives and a much more real compassion for others.

happening to my body and why, the best available treatment options,

Participants described how they became more appreciative of

the small things or moments or interactions in everyday life.
Olympia explained some of the important life lessons she had
learned since living with illness:
Taking some time out, seeing how life goes on internally
and externally.
The internal resilience that grows/develops.
A keen eye for the simple, rich and beautiful gifts that
surround me.
Understanding of my way of dealing with great change and
A reprioritizing of stuff in my life.
A connection with courage.
A re-ordering of expectations and things previously taken
for granted.

Reclaiming a sense of order

A diagnosis of chronic illness can throw life into chaos.
Participants reflected on times when they felt they were at
the mercy of the illness and had little power to influence
their lives. When they learnt to think of themselves in
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but above all that Im no longer alone. Communicating with others in

a similar situation, learning from their experiences and gaining
comfort from their support is invaluable. Feeling more in control has
given me back confidence and self-respect, helped me find a different
purpose in life, helped me to discover who I really am and hopefully
made me a better person. During bad times, I may spiral downwards
for a while, but I now have the strength to fight my way back and
move on.

A new vision of the future

Participants revealed that self-care meant combining biomedical knowledge with knowledge they had about themselves
and their life context. They had to make decisions about how
to make adjustments in life to enhance their sense of wellbeing. Over time, they regained a sense that they had some
choices about the way they managed life incorporating the
experience of illness. It was a sense of control within the
limits that the unpredictability of illness imposed, but it is
nonetheless a feeling that contributes to a sense of living
rather than existing. Mari reflected on the meanings she had
attached to diabetes control:


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Over the years I was taught about diabetic control something that
has been clinically defined as poor for the 15 years I have had
diabetes. This definition does nothing for my sense of gaining control
over my health. And I can let it ruin my self-efficacy and the belief
that I am actually doing OK. I guess I am learning to look at other
ways in which Ive gained control, e.g. I dont let my health worry
me, despite its obvious metabolic flaws; I am in control when the
diabetes is not controlling me; when diabetes no longer drives me to
obsessional lengths to get the sugars right. The key elements for
regaining control in my experience have included a dose of realism,
shaking off perfectionism, and appropriate support. I also found I
had to forgive those whose expectations of me with were too high,
including myself.

Having goals and recreating a vision for their futures were

important. Life required direction for it to feel meaningful
and have purpose. The vision participants had for their future
had often changed because of illness, but over time, they
developed new visions in line with their changed abilities and
interests. Participants learnt that self-care was about making
the most of their strengths and abilities rather than dwelling
on disability. Maris self-care goals were to:
Maintain balance.
Appreciate the good days, and accept the bad ones.
Remain responsible for my health behaviours, but not
make unrealistic expectations.
Give and to receive.
Work and play.
Be creative, to explore and to continue to learn.

Self-management and self-care of chronic illness can be both
a structure and a process (Kralik et al. 2004). Health
professionals have created structures in the approach to
self-management education wherein the intention is that
people will absorb the information offered. In contrast,
participants in this research revealed that self-care was
informed by the personal and social context of their lives.
Medical or health advice may not always be prioritised. A
type of wisdom evolved from the long-term experience of
living day to day with a chronic illness. This involves being
confronted with dilemmas caused by changing responses to
being in the world. The person may face this alone, as health
professionals and others are not present in everyday life
situations. The process of searching for options, trialling
actions and activities and experiencing the consequences,
equips the person with a depth of knowledge about how they
respond in certain situations. The person develops an
experiential knowledge base about what is right for them


in different circumstances. People make self-care decisions

against a background of complex socio-cultural characteristics, psychological interpretations, spiritual beliefs and personal priorities. Consequently, the nature of self-care will be
unique to the person and will change over time and
circumstances (Paterson et al. 2001). Self-care is a fluctuating process and may change over time as people shift in the
way they approach living with illness. Self-care capacities
and strategies fluctuate and evolve, as life and the illness
present new challenges (Paterson et al. 2001, Kralik et al.
2004, Telford et al. 2006). Just as chronic illness is
influenced by the wider context of peoples lives, so too is
the willingness and capacity to be involved in self-care
Self-care is shaped by a multitude of factors associated with
the cultural, social, psychological and spiritual context of the
persons life including the values, beliefs, attitudes, cultural
mores, individual perceptions and meanings that inform the
interpretation of life experience. These may be different for
each person and, consequently, self-care practices are diverse.
Cultural norms, values and beliefs inform both peoples
attitudes to self-care and the shape it takes. Ibraham et al.
(2001), for example, found that African Americans living
with osteoarthritis had cultural values and folk beliefs that
affected the way they interacted with the health care system
and the meaning they attached to illness. Consequently, they
were more likely to rely on home remedies and prayer as a
form of self-care (Ibraham et al. 2001). These findings are
well supported by other research (Colon 1992, Silverman
et al. 1999, Lewis & Green 2000). The individuals desire
and ability to self care is often determined by the extent to
which other life roles and events consume their energy and
attention. For example, people with the same diagnosis may
develop different self-care approaches because the illness has
different meaning in their lives, and differences in capacity
and resources with which to respond to the illness. According
to dual task theory, people prioritise tasks in which they have
the greatest emotional investment (Bayliss et al. 2003). For
example, some family-oriented roles may come before selfcare activities. The participants in this research reveal that
self-care is informed by the context of peoples lives;
therefore, self-care education must take account of the
individuals unique life context and ensure that strategies
are woven alongside of what is acceptable and meaningful to
the person.
A survey conducted in the UK revealed that while the
popular perception is that the role of health professionals is
the most important factor in enabling people to self care, in
reality, health professionals are only playing a minor role in

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encouraging self-care (Department of Health 2005). More

than half of the survey respondents who had seen a
professional in the last six months stated that they had not
been encouraged to undertake self-care and one-third said
that they had never been encouraged to self care by
professionals (Department of Health 2005). Health workers,
however, can bring a willingness to listen to people, to
understand their experiences and to find ways that biomedical knowledge can enhance their well-being and the ability to
manage illness. Glasgow et al. (2003) suggest that identifying
barriers to self-care is important at the outset of a selfmanagement programme, a point that is also made by
Wagner et al. (2001).
Learning to self care is a part of that process that occurs
over time. Each person learns to self care at his/her own pace
and in a way which fits with his/her life context. Health
workers can make an important difference to the lives of
people who are living with chronic illness and striving
towards adaptation. They need an understanding, nonjudgemental approach to care, built on a relationship that
is based on trust and shared understandings, a relationship
that recognises and values the persons experience and
perspectives (Kralik et al. 2004). Each person will develop
unique learning gained from managing illness in day-to-day
life. Over time, people develop knowledge of the way they
respond to illness effects and their unique life circumstances.
This includes the myriad of emotions and thoughts that are
triggered by daily events and the feelings towards oneself.
Research studies have reported that people with chronic
illness may be reluctant to reveal alterations to a prescribed
regime, when it was perceived that the health professional
may disapprove (Wikblad 1991, Paterson et al. 1998, 2001).
From the persons perspective, the alterations were based on
sophisticated self-care knowledge and experience with the
disease, which enabled them to maintain a desired quality of
life and appropriate physiological outcomes (Nyhlin 1990;
Wikblad 1991, Paterson et al. 1998, 2001, Kralik et al.
2004). What is required to self care may sometimes be at
odds with prescribed self-management. Validation of experiences and a sense of personal control have been found in
previous research to be an important element in self-care of
illness (Kralik 2002).

The findings reported were generated with a small number of
participants over a defined period of time. Researching with
people over a longer period of time would enable deeper
insight into the process of learning to self care. In addition,
people who did not have access to a computer and were not
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Self-care for people with chronic illness

able to email in English language were excluded from the


Implications for practice

The focus of health care practice for people with chronic
illness is to provide individuals, families and groups within a
community with equitable and affordable health care in a
manner, which transfers the knowledge and skill to enable
them to make decisions and manage their own health (Kralik
2008). Promoting and supporting people with chronic illness
to self-care is a central role for nurses in particular because
they often engage with people over longer periods of time,
in diverse contexts such as hospitals, peoples own homes and
communities. Supporting people to self care involves health
professionals actively collaborating with people to adapt and
acquire skills and knowledge that will enable them to manage
and make informed decisions regarding their chronic illness.

People living with chronic illness describe the process of selfcare as transformational in terms of feelings about their selves
and reclaiming as a sense of order. It enables them to move
forward with a sense of the future. The people in this research
point to the salience of the concept of self in their illness
journey. It is clearly important that health professionals are
aware of this as they interact with people. Interactions that
recognise and reinforce the persons capacity and self-worth
may have a lasting influence on the persons ability to make
self-care decisions. The primary health care principle of
holistic assessment, taking account of the wider context of
peoples lives, is of heightened importance when educating
about self-care. Health professionals can assist people by
acknowledging that chronic illness self-care is a process that
gradually evolves and is borne out of listening to the persons
priorities, and finding ways for strategies to fit harmoniously
alongside of those priorities.

The authors extend sincere thanks to the research participants and members of the Project Management Team. This
research has been funded by a Discovery grant from the
Australian Research Council.

Study design: DK, KP; data collection and analysis, and
manuscript preparation: DK, KT, KP.

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