Beruflich Dokumente
Kultur Dokumente
doi: 10.1111/j.1752-9824.2010.01056.x
RN, PhD
General Manager, Strategy and Research, Royal District Nursing Service, South Australia, Australia
Kay Price
RN, PhD
Senior Lecturer, School of Nursing and Midwifery, University of South Australia, Australia
Kerry Telford
BaSW
Research Associate, Research Unit, Royal District Nursing Service, South Australia, Australia
Correspondence:
Debbie Kralik
Royal District Nursing Service
South Australia 5034
Australia
Telephone: +61 8 82085368
E-mail: debbie.kralik@rdns.org.au
Introduction
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
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Background
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,
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Original article
Aim
To reveal the meaning given by adults living with chronic
illness to the experience of self-care.
Method
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.
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Participants
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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Findings
Original article
with imperfection.
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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.
Discussion
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
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Limitations
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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Conclusion
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.
Acknowledgements
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.
Contributions
Study design: DK, KP; data collection and analysis, and
manuscript preparation: DK, KT, KP.
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