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ISSUES AND INNOVATIONS IN NURSING PRACTICE
Chronic illness self-management: locating the ‘self’
Tina Koch PhD RN
Director and Professor of Nursing, RDNS, Research Unit, Glenside; and School of Nursing and Midwifery, University of South
Australia, Adelaide, South Australia, Australia
Peter Jenkin MPHC BN RN
Research Assistant, RDNS, Research Unit, Glenside, South Australia, Australia
Debbie Kralik PhD RN
Senior Research Fellow, RDNS, Research Unit, Glenside; and School of Nursing and Midwifery, University of South Australia,
Adelaide, South Australia, Australia
Submitted for publication 6 August 2003
Accepted for publication 1 March 2004
Correspondence:
Tina Koch,
RDNS Research Unit,
31 Flemington Street,
Glenside,
South Australia 5065.
E-mail: Koch.tina@rdns.sa.gov.au
KOCH T., JENKIN P. & KRALIK D. (2004)KOCH T., JENKIN P. & KRALIK D. (2004)
Journal of Advanced Nursing 48(5),
484–492
Chronic illness self-management: locating the ‘self’
Aim. In this paper, we present the findings of a recent research project in which we
explored self- management with older people who were diagnosed with asthma.
Background. Asthma self-management literature has focused on the need for the
patient to ‘adhere’ to prescribed therapies, in particular the taking of medications,
monitoring of respiratory function or recognizing and avoiding triggers.
Method. Data were generated during a period of 9 months from three sources;
in-depth interviews with 24 older participants, an open-ended questionnaire and
two mixed-gender participatory action research groups.
Findings. Based on current literature, our previous research findings which have
‘unpacked’ what is ‘self’-management, and data generated in this project, we pro-
pose that three asthma management models are in operation: Medical Model of
Self-management, Collaborative Model of Self-management and Self-Agency Model
of Self-management. Locating the ‘self’ in self-management means acknowledging
that many people living with a chronic condition are already self-determining and
their expertise should be acknowledged as such.
Conclusion. Health care professionals can best facilitate people toward self-agency
by embracing new understandings of self-management in long-term illness. This
process is enhanced when the expertise a person brings to the management of their
condition is given the respect it deserves. There needs to be a focus on providing
people with the means to grow and learn in a participative relationship that cannot
be fully realized with ‘off the shelf’ self-management solutions.
Keywords: chronic illness, self-management, asthma, older people, community,
nursing
Introduction
The purpose of this paper is to explicate our emerging
understandings about self-management when people are
living with chronic or long-term illness. Previous research
has revealed that common assumptions about the meaning of
self-management for people who have chronic illness require
re-evaluation (Kralik et al. 2004). In this paper, we present
484 2004 Blackwell Publishing Ltd
the findings of a research project in which we explored
self-management with older people who were diagnosed with
asthma. Although this study gained external research funding
from a disease-specific funding body (Asthma Innovative
Management: AIM), we suggest that the findings may be
applicable across chronic conditions.
Literature
There is evidence that self-management programmes have been
embraced by health policymakers as one way to decrease
health costs by having empowered and healthier ‘patients’
accessing health services with less frequency (Department of
Health 2003). A literature search strategy in Medline and
CINAHL using the terms ‘self-management, chronic illness’
was used to support our current chronic illness research
programme and to inform the study reported here. We sought
papers about the condition of ‘asthma’ and ‘asthma manage-
ment’ and we also used Internet-based resources.
The rise of the self-management movement is noted in the
literature (Lindgren 1996, Clark & Nothwehr 1997, Bailey
et al. 1999, Barner et al. 1999, Lahdensuo 1999, Costello 2000,
Adams et al. 2001, Lorig 2001, Barlow et al. 2002, Kolbe
2002), and a national conference has been sponsored by the
Australian Government (Australian Government National
Chronic Condition Self-management Conference 2003). How-
ever, close analysis of the literature revealed that a medical
prescriptive approach to self-management is widespread,
emphasizing adherence to directions given by health care
professionals. The ‘self’ in self-management has been ignored,
and the person has been objectified as the ‘patient’.
Asthma self-management literature is no exception, citing
recommendations of ways to encourage patients to adhere to
an authoritarian and prescriptive approach. Patients are
expected to be compliant to medical management instructions.
Compliance has been defined as adherence by the patient to
directions given by the prescribing physician, and good
compliance has been considered as 80% adherence or greater
(Wilkinson et al. 2003). Fishwick et al. (1997) provided three
basic principles for asthma self-management: objective self-
assessment of asthma severity with educated interpretation of
symptoms and peak flow readings; use and monitoring of
inhaled and oral medications for long-term prevention and
treatment of exacerbations; and integration of these self-
assessment and management issues into written guidelines for
patients to follow. These are clearly medical management
criteria and have little relevance to the contextual experience of
living with asthma on a daily basis.
Asthma self-management literature has focused on the need
for patients to ‘adhere’ to prescribed therapies, in particular
taking medications, monitoring respiratory function or
recognizing and avoiding triggers (Bender et al. 1997, Osman
1997, Conway 1998, McGann 1999, Trueman 2000, Fish &
Lung 2001, Milgrom et al. 2002, Wraight et al. 2002). Other
terms, such as compliance (Cochrane 1996, Watts et al.
1997, Leyshon 1999, Spector 2000, Lindberg et al. 2001) and
concordance (Riekert et al. 2003), have been used with
similar intent.
A focus in the asthma self-management literature has been
the use (and non-use) of an asthma self-management plan
(Ruffin et al. 1999). This self-management plan has been
considered central to the guidelines provided in the Australian
Asthma Management Handbook (National Asthma Council
2002). While some evidence has been cited that asthma
management plans produce effective clinical outcomes (Gib-
son et al. 2003), a recent Cochrane Review stated that there
was no consistent evidence that written plans produced better
outcomes (Toelle & Ram 2001). Either way, it appears that the
reality of everyday asthma care differs from what guided self-
management plans prescribe, with a less than expected uptake
(Thoonen & Van Weel 2000). Beilby et al. (1997) demonstra-
ted non-use of plans in a South Australian context and less than
half (43%) of adults surveyed who had asthma actually had an
asthma management plan. Adults most likely to have such a
plan were those living with severe asthma and visiting the same
doctor on a regular basis. Detailed written plans were not
deemed necessary for people with mild asthma symptoms
(Fishwick et al. 1997).
Little research has been reported on the way in which older
people ‘self’ manage asthma, outside the narrow terrain of
medical management, compliance and generic education.
Education ‘of’ people with asthma has been reported as an
intervention to ensure compliance (Bone 1996, Brown 2001).
Education has been advocated as being important in ensuring
‘compliance’ with self-management, and has most often been
described in terms of delivering a prescribed package of
information either to groups or individually (Wilson 1997).
Increasingly it has been acknowledged that targeting individ-
ual needs may result in positive outcomes, rather than relying
solely on generic education (Ward & Reynolds 2000).
Despite a continued emphasis on medical management and
insistence on using the term ‘patient’, there has been an effort
to move away from the authoritarian model toward a
collaborative model of self-management. The Australian
Asthma Management Handbook (National Asthma Council
2002) outlined a six-point asthma management plan which
included development of an action plan as one key step.
There is a distinction between an ‘action plan’ which is
intended reactively to guide-specific interventions (e.g. if peak
expiratory flow measurements or symptom are X then
Issues and innovations in nursing practice Chronic illness self-management
2004 Blackwell Publishing Ltd, Journal of Advanced Nursing,48(5), 484–492 485
increase Y medication), and a ‘management plan’, which is a
proactive attempt to provide education, support, clinical care
and monitoring as a partnership between patients and health
care professionals.
Collaborative models insist that, when people living with a
chronic condition are provided with education, support,
clinical care and monitoring in a partnership with health care
professionals, self-management is enhanced (Lorig &
Holman 1993, Barlow et al. 1999, Holman & Lorig 2000).
Bodenheimer et al. (2002) have argued that self-management
is important to living well with chronic illness, because
people have an improved chance for a rewarding lifestyle
when they are educated about the disease and take part in
their own care. Self-management has been reported as
enabling people to minimize 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 physicians and enjoy better quality of life (Lorig
et al. 1998, Barlow et al. 2000). However, despite the
evidence of cost-benefits and improved health outcomes for
people who participate in established self-management pro-
grammes, they reach only a small number of people with
chronic illness (Keysor et al. 2001).
The study
Aim
The project reported here responded to the high prevalence of
older people living in the community with asthma. We aimed
to understand, from the perspective of older men and women,
how asthma had impacted on their lives, and to identify the
contexts, barriers and issues that were significant for them. In
collaboration with the participants, we attempted to explore
asthma self-management models.
Participants
Recruitment strategies sought people over the age of 60, who
had been medically diagnosed with asthma and were using, or
had been prescribed, preventative medications to use on a daily
basis. Recruitment proved difficult because older people living
with asthma, particularly when asymptomatic, did not place
this condition high on their list of ailments that required
consideration. Table 1 outlines the recruitment strategies used.
It was clear that some strategies yielded a better response rate.
Local newspapers, radio interviews and contact with commu-
nity health workers were the most successful.
Eight men and 16 women with asthma volunteered to
participate in the project. Their average age was 76 years; the
youngest person was 60 years and the oldest 92 years old.
Based on an assessment carried out by clinical educators
specializing in asthma, 17 people had severe asthma, three
had moderate asthma, three had mild asthma and one was
asymptomatic. Assessments of asthma status made by the
clinical educator were based on each person’s medication,
frequency of medication use and the participant’s self-report
of asthma severity.
Ethical considerations
Ethics approval was obtained from an institutional ethics
committee. An information sheet outlining the study was sent
to interested people after their initial contact with research-
ers. Prior to signing a consent form, participants were assured
that they could withdraw from the study at any time, and
that anonymity and confidentiality would be protected.
Participants’ names in this paper are pseudonyms.
Data generation and analysis
Data were generated over 9 months and from three sources:
in-depth interviews, an open-ended questionnaire and two
participatory action research (PAR) mixed-gender research
groups (equalling eight contact hours).
The second author undertook in-depth interviews with the
24 participants and these were informally conducted in
participants’ homes. Guiding questions were: How has
asthma affected your life? Give an example of an incident
or episode with asthma that really affected your life, What
has changed in your life since you were diagnosed with
asthma? What strategies do you employ to manage your
asthma? Where and how did you learn about these strategies?
Is there anything that would help you in the future to manage
your asthma that is not available now? These questions
resulted in the development of a story line for each partici-
pant. In addition, the shape of the story was influenced by
questions of the type ‘look, think and act’ (Stringer 1999).
Table 1 Recruitment sources
Sources Contact Actual
Radio interviews 7 7
Advertisements in local newspapers 7 5
Referrals from asthma educators 9 7
Public asthma awareness sessions 3 3
Royal District Nursing Service
‘Driving Force’ magazine
11
Leaflets from pharmacies 1 1
Total 28 24
T. Koch et al.
486 2004 Blackwell Publishing Ltd, Journal of Advanced Nursing,48(5), 484–492
‘Looking’ referred to the exploratory phase, in which
participants were asked to tell their stories about living with
asthma. ‘Thinking’ was stimulated when the interviewer
asked them to reflect on their story: ‘What is happening
here?’ and ‘Why are things as they are?’ The ‘acting’ phase
occurred when participants were asked to think about aspects
of their asthma self-management that they would like to
change or share with others. Most of the one-to-one
interviews lasted 1 hour, and all were tape-recorded and
transcribed verbatim.
Eighteen participants volunteered to join a PAR group.
Family and friends were also invited, and six partners
attended. Due to the large number of people participating,
two separate groups were convened. We have published
details of the PAR methodology previously (Koch & Kralik
2001, Koch et al. 2002) and therefore here we will only give
an overview of the approach.
During the PAR meetings, the facilitator (first author) gave
an overview of the study and assisted with setting ‘norms’ in
collaboration with the group. A document that contained a
preliminary analysis of interview data was presented to
participants at the first PAR group meeting. Discussion took
place around each of the themes and validation of findings was
noted. In an effort to extend group discussion, the ‘look, think
and act’ (Stringer 1999) framework was displayed on a slide
and this cyclic process explained to participants. The explan-
ation was as follows: ‘Let us look at what is going on in your
life, let us think about this (reflect) and then let us consider what
can be done to improve things (act)’. This cyclic process
encouraged participants to investigate their problems and
issues systematically, formulate experiential accounts of their
situations, and devise plans to deal with the issues identified.
We held two PAR meetings with each of the two groups and
the intent was to develop collaboratively a model that would
enable self-management of asthma for older people. Partici-
pants shared their stories about living with asthma, and were
encouraged to engage in discussion and dialogue, develop
mutually acceptable accounts that described their experiences,
and talk about ways they managed their condition. They were
encouraged to talk about their ‘self’-management and explore
what they could do to improve this, thus leading to individual
or group action. PAR meetings were transcribed concurrently
by a skilled research coordinator.
At the first PAR meeting with each group, we asked
participants to take home a questionnaire with two items:
‘What is asthma?’ and ‘What is self-management?’ We
received 14 replies and analysis of the questionnaire data
followed the procedure outlined below.
The three authors read the transcripts and analysed data
collaboratively. We analysed for self-management claims
raised by participants (Guba & Lincoln 1989). The process of
analysis was an adaptation of Colaizzi’s (1978) framework,
and the steps were to:
1Read the text in order to understand it as a whole. This
took some time and required careful re-reading of the
interviewer’s notes to provide context to the interview text.
2Extract significant statements about the phenomenon
being studied. Statements were cut and pasted into a sep-
arate document and re-read.
3Develop clusters within individual interviews. Statements
were arranged according to common themes within the
context of each interview.
4Integrate clusters into a broad description of the phe-
nomenon being studied. Six key themes provided the
context of the issues, barriers and self-management strat-
egies of older people living with asthma.
5Validation of findings with participant. The six main
themes were presented, with corresponding significant
statements, to the PAR group participants for comment
and validation.
Analysis of the PAR group data was also concurrent to
ensure prompt feedback of issues to participants, thus
creating the opportunity to build our (participants’ and
facilitators’) understandings collaboratively. We consider
that rigour was enhanced because the actual voices of
participants were included in the text (Koch & Harrington
1998) so that readers can assess the authenticity of the voices.
The final study report was given to all participants and
further validation of findings occurred at a third meeting
arranged once the study was completed.
Findings
Analysed data from the interviews, questionnaires and PAR
groups were merged to reveal tentative self-management
models. When listening and talking with participants, we
discovered that there were three models of asthma manage-
ment in operation: medical model of self-management,
collaborative model of self-management and self-agency
model of self-management.
Medical model of asthma management
Most participants identified with a medical model of self-
management. The epitome of management of asthma for
older people appeared to be taking prescribed medications.
Closely tied to this was following orders from the doctor.
Mostly, people took responsibility for management of their
medications. In addition to taking medications, prevention of
asthma attacks was linked to identification and avoidance of
Issues and innovations in nursing practice Chronic illness self-management
2004 Blackwell Publishing Ltd, Journal of Advanced Nursing,48(5), 484–492 487
triggers. When people were first diagnosed with asthma, they
often found themselves in the medical management model.
Jane commented:
I feel I’ve only had it a short while but I have the right doctor and
follow through with my medication. I’ve learnt a lot. We really must
do what the doctors and specialists tell [us].
Jane followed the doctor’s orders and respected that doctors
held authority about her condition. Isabel reported that her
‘doctor did all the managing…I have to check my lung
capacity. He monitored it very closely…I had to trust him’.
In this model, the doctor rather than the patient managed
the disease process; instead the patient learnt to trust medical
knowledge and management. Learning to trust was part of
slotting into a medical management programme, precisely
because the patient was not invited to take part in asthma
management. Medical management was something done to
patients and people were expected to comply with medical
orders. However, older people might have expectations that
doctors would tell them what they should do. Even so, they
expected that the doctor’s authority and trust should be
earned through having specific disease knowledge, Linda
expected her GP to provide this knowledge:
I had a heavy cold and she [my doctor] asked if I had asthma – I was
thinking, ‘You should be telling me!’ I went onto the preventer and
the reliever – it was good since, except when hot and dry or very cold.
I consider (myself) lucky to have developed it later.
Julie added, ‘Doctors play a more significant role – I think
sometimes the doctor doesn’t know what he is talking about’.
Jim raised another aspect of medical management:
Some doctors do become complacent with you if you see them for too
long. If I have arthritis on my record – it doesn’t matter what problem
I have, it’s to do with the arthritis. I couldn’t move my foot off the
floor and I went to the doctor and he looked at the card and said, ‘It’s
to do with the arthritis’.
Medical expertise was questioned by Jim, and having another
chronic illness label meant that asthma did not receive
equivalent medical attention.
Medical management sometimes led to a narrow focus,
whereas effective management of asthma demanded that the
person’s life be viewed in context, and not only as a disease-
specific response. Frasier made a claim for holistic manage-
ment of his asthma:
Well, this rather interests me because I have been asthmatic for years.
I have a good background of science. I think we need the set up of
special clinics that can give a holistic view of people and their
medications, dietary habits, dangers of things like preservatives…It
compounds the trouble. I attended a respiratory specialist and he was
not interested in anything outside the immediate present. I’m still
having problems. He said, ‘Carry on’, [but] it’s not really the answer.
Older people with asthma often found themselves in a
medical management model. However, this meant that the
doctor’s orders were followed and medications were taken as
prescribed; otherwise the patient might be labelled as non-
compliant. Doctors were likely to be trusted if they provided
evidence that they had specific disease knowledge and could
offer sound medical advice. For health care professionals,
self-management was viewed as the patient adopting appro-
priate practices in relation to their disease. Medical manage-
ment took a narrow view whereas management of asthma,
because of the long-term nature of the illness, deserved to
placed in the context of the person’s life. In this model the
person was objectified as ‘the patient’.
Collaborative model of asthma management
Another tentative model identified by participants was a
collaborative one, which used a combination of biomedical
and experiential terms to describe asthma. Some merged their
biomedical understanding of asthma with the impact this
condition had on their lives. When some older people with
asthma talked about self-management, they suggested that
this involved other people managing their asthma. However,
others described management as a joint effort between them
and health care professionals (usually general practitioners),
or perceived self-management to be their own agency.
Involving participants in a participatory process where they
could view both the medical and ‘self’-aspects of management
gave us an opportunity to find out more about the possibility
of developing a self-management model that had ‘self’ as the
centre, and in which the person was viewed as ‘the client’.
Bodenheimer et al. (2002) referred to this model as the
partnership paradigm.
Joint effort between participants and health care profes-
sionals was most likely to be a result of applying the
principles of asthma management in designated asthma
clinics. Jane commented:
Going to the GP, having access to an asthma management specialist,
put me on the right medication. They did try Pulmicort on me. I had a
few different things till they got the right combination. I had the lung
function test. I used to be bad under the shower…no energy to wash
my hair. At the clinic it was suggested that I buy a towel and dressing
gown [and] put that on instead of drying yourself. Same with slippers.
I wouldn’t have known about using the dressing gown instead of a
towel.
T. Koch et al.
488 2004 Blackwell Publishing Ltd, Journal of Advanced Nursing,48(5), 484–492
It was clear from this example that Jane was offered much
more than medical advice. We do not deny that medication
information is vitally important for asthma management, but
participants emphasized that management of asthma was
more than drug management. Jane was involved in her care
and was in a position to make informed decisions about her
management as a result.
When clients were involved in care, Isabel suggested that
‘we bring intelligence to that relationship (with the doctor)’.
When input from the client was acknowledged as valuable,
this might be conducive to self-agency in management.
Naomi, when talking about her relationship with her health
care providers, said:
I would say that I have got a very good GP, who put me onto a
programme that I carry out strictly. I ring my GP if I’ve had a couple
of days/nights being short of breath and go down and see her, and she
writes out the change in medications so I know exactly what to do.
Asthma clinics have only recently been a choice for people in
Australia, and clients tend to be people who have been newly
diagnosed. Collaborative management seems most likely to
be a result of involvement with an asthma clinic. These
offered much more than straight medical management
advice, and collaboration between GP and client was central.
When input from the client was acknowledged and valued,
facilitation of the client toward self-agency in asthma
management may be possible.
Self-agency model of asthma management
Participants spoke about a model that we have designated as
self-agency. Most people had identified their own responses
to illness, and some were constantly planning their daily
routines as a means of creating order in their lives. Devel-
oping alternative lifestyle habits appeared to be important for
those who had embraced self-management. Taking control of
their own lives was crucial for those who claimed to manage
the self, as their accounts indicated that helping oneself was
an important aspect of living with asthma. Taking action to
deal with it was a part of everyday life, and the person
became self-determining.
Some participants talked about self-management solely in
terms of their own agency. Others ignored biomedical
language and focused entirely on the impact of the condition
on their lives and their responses to the impact. Penny
described how she had learned to be ‘cagey’ or ‘sneaky’ in
managing herself, and talked:
…about having osteoporosis and asthma and being on medications
for both. It’s a vicious circle. I’ve learnt to be cagey. If I can’t breathe,
I go and look at why I can’t breathe. If I feel I can’t breathe, I might
take a Throatie [a soothing cough sweet]. Sometimes that settles it,
and I don’t go for the big guns first. If at night and it’s cold, I put my
head under the bedclothes and breathe warm air. You get to be pretty
sneaky.
Taking control was evident in stories from people who were
experts in management of the self, as Finlay described:
I was on Pulmicort as a preventative. And I put myself off them – told
him (GP) I couldn’t handle the throat problem. I seem to be able to
manage at present. I’ve done well, considering I’m 87 in a couple of
week’s time. I do very well and rely on Ventolin largely. I think you
should stick pretty close to your doctor and make a note, mentally at
least, of things he needs to know.
Finlay had made decisions about which medications he
would take, he prided himself on managing the ‘self’, and
he was constantly working out ways to improve the ways he
lived with asthma. He made decisions about what to share
with the doctor and, in taking control, he had governed his
illness. Adams et al. (2001) showed that participants wished
to remain in control by choosing when to seek care, and
wanted to share decisions about initial changes in medication
during moderate asthma exacerbations.
Experts in management of the self often have a long
learning history, especially when they have lived with the
condition for most of their lives (Kennedy 2003). Partici-
pants’ observations of the changes that had taken place in
asthma management during the last 50 years was indeed
interesting. We heard about dietary requirements, when a
child with asthma was expected to take only ‘black rye
bread, lettuce and water’. Penny explained that as a 7-year-
old child:
I used to have asthma powder…you remember the tobacco tins the
men used to smoke? Used to have to put it in a tin and burn it and
inhale the smoke. Just makes you want to throw up thinking about it.
Penny’s sister, Diane, who also attended the PAR group
meetings, said:
When growing up with my sister I was advised to get her out of bed
and kneel on her chest and squeeze every bit out of her lungs until she
took her breath. Like a resuscitation.
These people were experts on their own conditions and
responses to illness because their life experiences had
informed them about managing the self. Changes in medical
management were monitored with vigilance. These people
have seen many asthma management changes, and keeping
informed meant that they would be the first to know about
better and new ways of managing their condition. In addition
Issues and innovations in nursing practice Chronic illness self-management
2004 Blackwell Publishing Ltd, Journal of Advanced Nursing,48(5), 484–492 489
to searching for new information herself, Penny worked
alongside her doctor: ‘My doctor tells me, ‘This is new on the
market, so try this’. Penny had undertaken a process of
learning from herself, others, peers, and doctors so that she
could find a way for asthma to be part of her life. While she
was the first to say, ‘Asthma can make your life terrible’, she
concentrated on things she could do – ‘write stories, paint
instead of playing sport’. She had learned to do things
without asking, ‘Why me?’
Management of the ‘self’ was a full-time job. Finlay asked
the group to reflect on their self-management:
Are we taking management of asthma for granted just because we
have this thing? We have found out for ourselves what is happening,
we see articles on asthma, and we ask our doctor who may be more
prominent in thinking and diagnosis. I wonder whether we encourage
people enough to find out things for themselves?
He had obviously made decisions for himself, and wanted to
encourage others in the PAR group to take responsibility for
themselves.
In summary, self-management was about reclaiming the
self and regaining full human identity. This meant achieving
recognition and support for self-monitoring practices.
Discussion
We have articulated three tentative models based on the data
generated with participants. Although self-management was
shown to have multiple meanings, the dominant model was
medical self-management. In addition, much of the literature
assumes that self-management means the same to all people –
both professionals and those living with a chronic condition.
The role of the ‘self’ was excluded from these discourses;
instead, the focus was on medication compliance. However,
sometimes alternative or ‘softer’ terms such as adherence and
concordance have been used.
In this study it was identified that the major constraint on
self-management was a narrow conception as solely medical
management, and notions of patients’ self-agency were
dismissed. Yet participants who had asthma since childhood
were experts in their own self-management, although they
were not always acknowledged as such. They were conver-
sant with medical asthma management in the first instance,
and subsequently managed the ‘self’ in the context of their
lives. They had developed a sense of mastery (Kralik 2002).
Here the term ‘self-management’ makes reference to the
activities these people have undertaken to create order,
discipline and control in their lives (Kralik et al. 2003).
Whilst we have identified three models of asthma manage-
ment, we are not to first to use the term ‘model’ to describe
self-management. The first two models have been previously
articulated by Bodenheimer et al. (2002); however, the self-
agency model of self-management is our theoretical contri-
bution. Older people who had lived with asthma for most of
their lives were clearly experts in the management of their
condition. Experts in management of the self often have a
long learning history, especially when they have lived with
this condition most of their lives. Those older people in our
study who were at an expert level of ‘self’-management were
able to conceptualize and use these influences in ways that
enhanced their health. With this awareness, they manipulated
the extended and external environment to suit their current
situation. Changes in medical management supported by
research were monitored with vigilance. Those who had had
asthma since childhood had seen many management changes,
and keeping informed meant that they would be the first to
know about better ways to manage their condition. They
recognized that asthma fluctuated as life and the illness
combined to present new challenges.
When medical help was sought, participants preferred this
assistance in collaboration with health care professionals.
This was congruent with the collaborative model of care
identified by Bodenheimer et al. (2002). What made the
interaction different was that it was their decision to enter
this model when acute events occurred or other medical
treatment was sought, rather than a health professional
benevolently deciding that this was the best course to steer.
Taking control of their own lives was crucial in managing the
self. Helping oneself was an important aspect of living with
asthma, and taking action to deal with the condition was a
part of everyday life. Even for these self-determining experts,
management of the ‘self’ was seen as a full-time job.
Conclusion
This study gives a foundation for nurses to understand how
older people living with asthma are able to achieve a level of
self-agency that does not rely on health care professionals
taking the lead role in management. It also highlights that this
chronic disease does not just exist in a clinical framework of
expiratory peak flow measurement and medication manage-
ment. Nor does it necessarily require us to provide ‘off the
shelf ‘self-management education about how we think that
people ought to cope. When nurses cross therapeutic paths
with people who have achieved self-agency in asthma
management, we must accept that they are the experts and
have chosen to use our knowledge and skills to augment their
own.
For older people who are not yet self-agents in their care,
providing the clinical and social environments for them to
T. Koch et al.
490 2004 Blackwell Publishing Ltd, Journal of Advanced Nursing,48(5), 484–492
grow and learn is essential. The way to do this is not to
assume we know what they want to learn, but rather to offer
a participative partnership that facilitates their control of
‘what’ and how it is offered.
How can health care professionals provide facilitate self-
agency when people are learning to undertake self-manage-
ment activities? We conclude that both aspects – medical
management and management of the self – need to given
scope and platform, and offered concurrently.
Acknowledgements
We thank the participants and the members of project
management team. The project, entitled Development of a
collaborative asthma management model for older people
living in the community, was funded by the Asthma Innova-
tive Management (AIM) Project, Commonwealth Depart-
ment of Health and Ageing (Australia).
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