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I S S U E S A N D I N N O V A T I O N S I N N U R S I N G P R A C T I C E Chronic illness self-management: locating the ‘self’ Tina Koch PhD RNDirector 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 RNResearch Assistant, RDNS, Research Unit, Glenside, South Australia, Australia Debbie Kralik PhD RNSenior Research Fellow, RDNS, Research Unit, Glenside; and School of Nursing and Midwifery, University of South Australia, Submitted for publication 6 August 2003Accepted for publication 1 March 2004 K O C H T . , J E N K I N P . & K R A L I K D . ( 2 0 0 4 ) 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 andtwo 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 ofSelf-management, Collaborative Model of Self-management and Self-Agency Modelof Self-management. Locating the ‘self’ in self-management means acknowledgingthat many people living with a chronic condition are already self-determining andtheir expertise should be acknowledged as such.
Conclusion. Health care professionals can best facilitate people toward self-agencyby embracing new understandings of self-management in long-term illness. Thisprocess is enhanced when the expertise a person brings to the management of theircondition is given the respect it deserves. There needs to be a focus on providingpeople with the means to grow and learn in a participative relationship that cannotbe fully realized with ‘off the shelf’ self-management solutions.
Keywords: chronic illness, self-management, asthma, older people, community,nursing living with chronic or long-term illness. Previous research has revealed that common assumptions about the meaning of The purpose of this paper is to explicate our emerging self-management for people who have chronic illness require understandings about self-management when people are re-evaluation (Kralik et al. 2004). In this paper, we present Issues and innovations in nursing practice the findings of a research project in which we explored taking medications, monitoring respiratory function or self-management with older people who were diagnosed with recognizing and avoiding triggers (Bender et al. 1997, Osman asthma. Although this study gained external research funding 1997, Conway 1998, McGann 1999, Trueman 2000, Fish & from a disease-specific funding body (Asthma Innovative Lung 2001, Milgrom et al. 2002, Wraight et al. 2002). Other Management: AIM), we suggest that the findings may be terms, such as compliance (Cochrane 1996, Watts et al.
applicable across chronic conditions.
1997, Leyshon 1999, Spector 2000, Lindberg et al. 2001) andconcordance (Riekert et al. 2003), have been used withsimilar intent.
A focus in the asthma self-management literature has been There is evidence that self-management programmes have been the use (and non-use) of an asthma self-management plan embraced by health policymakers as one way to decrease (Ruffin et al. 1999). This self-management plan has been health costs by having empowered and healthier ‘patients’ considered central to the guidelines provided in the Australian accessing health services with less frequency (Department of Asthma Management Handbook (National Asthma Council Health 2003). A literature search strategy in Medline and 2002). While some evidence has been cited that asthma CINAHL using the terms ‘self-management, chronic illness’ management plans produce effective clinical outcomes (Gib- was used to support our current chronic illness research son et al. 2003), a recent Cochrane Review stated that there programme and to inform the study reported here. We sought was no consistent evidence that written plans produced better papers about the condition of ‘asthma’ and ‘asthma manage- outcomes (Toelle & Ram 2001). Either way, it appears that the ment’ and we also used Internet-based resources.
reality of everyday asthma care differs from what guided self- The rise of the self-management movement is noted in the management plans prescribe, with a less than expected uptake literature (Lindgren 1996, Clark & Nothwehr 1997, Bailey (Thoonen & Van Weel 2000). Beilby et al. (1997) demonstra- et al. 1999, Barner et al. 1999, Lahdensuo 1999, Costello 2000, ted non-use of plans in a South Australian context and less than Adams et al. 2001, Lorig 2001, Barlow et al. 2002, Kolbe half (43%) of adults surveyed who had asthma actually had an 2002), and a national conference has been sponsored by the asthma management plan. Adults most likely to have such a Australian Government (Australian Government National plan were those living with severe asthma and visiting the same Chronic Condition Self-management Conference 2003). How- doctor on a regular basis. Detailed written plans were not ever, close analysis of the literature revealed that a medical deemed necessary for people with mild asthma symptoms prescriptive approach to self-management is widespread, emphasizing adherence to directions given by health care Little research has been reported on the way in which older professionals. The ‘self’ in self-management has been ignored, people ‘self’ manage asthma, outside the narrow terrain of and the person has been objectified as the ‘patient’.
medical management, compliance and generic education.
Asthma self-management literature is no exception, citing Education ‘of’ people with asthma has been reported as an recommendations of ways to encourage patients to adhere to intervention to ensure compliance (Bone 1996, Brown 2001).
an authoritarian and prescriptive approach. Patients are Education has been advocated as being important in ensuring expected to be compliant to medical management instructions.
‘compliance’ with self-management, and has most often been Compliance has been defined as adherence by the patient to described in terms of delivering a prescribed package of directions given by the prescribing physician, and good information either to groups or individually (Wilson 1997).
compliance has been considered as 80% adherence or greater Increasingly it has been acknowledged that targeting individ- (Wilkinson et al. 2003). Fishwick et al. (1997) provided three ual needs may result in positive outcomes, rather than relying basic principles for asthma self-management: objective self- solely on generic education (Ward & Reynolds 2000).
assessment of asthma severity with educated interpretation of Despite a continued emphasis on medical management and symptoms and peak flow readings; use and monitoring of insistence on using the term ‘patient’, there has been an effort inhaled and oral medications for long-term prevention and to move away from the authoritarian model toward a treatment of exacerbations; and integration of these self- collaborative model of self-management. The Australian assessment and management issues into written guidelines for Asthma Management Handbook (National Asthma Council patients to follow. These are clearly medical management 2002) outlined a six-point asthma management plan which criteria and have little relevance to the contextual experience of included development of an action plan as one key step.
living with asthma on a daily basis.
There is a distinction between an ‘action plan’ which is Asthma self-management literature has focused on the need intended reactively to guide-specific interventions (e.g. if peak for patients to ‘adhere’ to prescribed therapies, in particular expiratory flow measurements or symptom are X then Ó 2004 Blackwell Publishing Ltd, Journal of Advanced Nursing, 48(5), 484–492 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 healthcare 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, becausepeople have an improved chance for a rewarding lifestylewhen they are educated about the disease and take part in youngest person was 60 years and the oldest 92 years old.
their own care. Self-management has been reported as Based on an assessment carried out by clinical educators enabling people to minimize pain, share in decision-making specializing in asthma, 17 people had severe asthma, three about treatment, gain a sense of control over their lives (Lorig had moderate asthma, three had mild asthma and one was & Holman 1993, Barlow et al. 1999), reduce the frequency asymptomatic. Assessments of asthma status made by the of visits to physicians and enjoy better quality of life (Lorig clinical educator were based on each person’s medication, et al. 1998, Barlow et al. 2000). However, despite the frequency of medication use and the participant’s self-report 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).
Ethics approval was obtained from an institutional ethicscommittee. 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 The project reported here responded to the high prevalence of that anonymity and confidentiality would be protected.
older people living in the community with asthma. We aimed Participants’ names in this paper are pseudonyms.
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. Incollaboration with the participants, we attempted to explore Data were generated over 9 months and from three sources: in-depth interviews, an open-ended questionnaire and twoparticipatory action research (PAR) mixed-gender researchgroups (equalling eight contact hours).
The second author undertook in-depth interviews with the Recruitment strategies sought people over the age of 60, who 24 participants and these were informally conducted in had been medically diagnosed with asthma and were using, or participants’ homes. Guiding questions were: How has had been prescribed, preventative medications to use on a daily asthma affected your life? Give an example of an incident basis. Recruitment proved difficult because older people living or episode with asthma that really affected your life, What with asthma, particularly when asymptomatic, did not place has changed in your life since you were diagnosed with this condition high on their list of ailments that required asthma? What strategies do you employ to manage your consideration. Table 1 outlines the recruitment strategies used.
asthma? Where and how did you learn about these strategies? It was clear that some strategies yielded a better response rate.
Is there anything that would help you in the future to manage Local newspapers, radio interviews and contact with commu- your asthma that is not available now? These questions nity health workers were the most successful.
resulted in the development of a story line for each partici- Eight men and 16 women with asthma volunteered to pant. In addition, the shape of the story was influenced by participate in the project. Their average age was 76 years; the questions of the type ‘look, think and act’ (Stringer 1999).
Ó 2004 Blackwell Publishing Ltd, Journal of Advanced Nursing, 48(5), 484–492 Issues and innovations in nursing practice ‘Looking’ referred to the exploratory phase, in which raised by participants (Guba & Lincoln 1989). The process of participants were asked to tell their stories about living with analysis was an adaptation of Colaizzi’s (1978) framework, asthma. ‘Thinking’ was stimulated when the interviewer asked them to reflect on their story: ‘What is happening 1 Read the text in order to understand it as a whole. This here?’ and ‘Why are things as they are?’ The ‘acting’ phase took some time and required careful re-reading of the occurred when participants were asked to think about aspects interviewer’s notes to provide context to the interview text.
of their asthma self-management that they would like to 2 Extract significant statements about the phenomenon change or share with others. Most of the one-to-one being studied. Statements were cut and pasted into a sep- interviews lasted 1 hour, and all were tape-recorded and 3 Develop clusters within individual interviews. Statements Eighteen participants volunteered to join a PAR group.
were arranged according to common themes within the Family and friends were also invited, and six partners attended. Due to the large number of people participating, 4 Integrate clusters into a broad description of the phe- two separate groups were convened. We have published nomenon being studied. Six key themes provided the details of the PAR methodology previously (Koch & Kralik context of the issues, barriers and self-management strat- 2001, Koch et al. 2002) and therefore here we will only give egies of older people living with asthma.
5 Validation of findings with participant. The six main During the PAR meetings, the facilitator (first author) gave themes were presented, with corresponding significant an overview of the study and assisted with setting ‘norms’ in statements, to the PAR group participants for comment collaboration with the group. A document that contained a preliminary analysis of interview data was presented to Analysis of the PAR group data was also concurrent to participants at the first PAR group meeting. Discussion took ensure prompt feedback of issues to participants, thus place around each of the themes and validation of findings was creating the opportunity to build our (participants’ and noted. In an effort to extend group discussion, the ‘look, think facilitators’) understandings collaboratively. We consider and act’ (Stringer 1999) framework was displayed on a slide that rigour was enhanced because the actual voices of and this cyclic process explained to participants. The explan- participants were included in the text (Koch & Harrington ation was as follows: ‘Let us look at what is going on in your 1998) so that readers can assess the authenticity of the voices.
life, let us think about this (reflect) and then let us consider what The final study report was given to all participants and can be done to improve things (act)’. This cyclic process further validation of findings occurred at a third meeting encouraged participants to investigate their problems and arranged once the study was completed.
issues systematically, formulate experiential accounts of theirsituations, 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 Analysed data from the interviews, questionnaires and PAR enable self-management of asthma for older people. Partici- groups were merged to reveal tentative self-management pants shared their stories about living with asthma, and were models. When listening and talking with participants, we encouraged to engage in discussion and dialogue, develop discovered that there were three models of asthma manage- mutually acceptable accounts that described their experiences, ment in operation: medical model of self-management, and talk about ways they managed their condition. They were collaborative model of self-management and self-agency encouraged to talk about their ‘self’-management and explore what they could do to improve this, thus leading to individualor group action. PAR meetings were transcribed concurrently At the first PAR meeting with each group, we asked Most participants identified with a medical model of self- participants to take home a questionnaire with two items: management. The epitome of management of asthma for ‘What is asthma?’ and ‘What is self-management?’ We older people appeared to be taking prescribed medications.
received 14 replies and analysis of the questionnaire data Closely tied to this was following orders from the doctor.
followed the procedure outlined below.
Mostly, people took responsibility for management of their The three authors read the transcripts and analysed data medications. In addition to taking medications, prevention of collaboratively. We analysed for self-management claims asthma attacks was linked to identification and avoidance of Ó 2004 Blackwell Publishing Ltd, Journal of Advanced Nursing, 48(5), 484–492 triggers. When people were first diagnosed with asthma, they compounds the trouble. I attended a respiratory specialist and he was often found themselves in the medical management model.
not interested in anything outside the immediate present. I’m still having problems. He said, ‘Carry on’, [but] it’s not really the answer.
I feel I’ve only had it a short while but I have the right doctor and Older people with asthma often found themselves in a follow through with my medication. I’ve learnt a lot. We really must medical management model. However, this meant that the do what the doctors and specialists tell [us].
doctor’s orders were followed and medications were taken asprescribed; otherwise the patient might be labelled as non- Jane followed the doctor’s orders and respected that doctors compliant. Doctors were likely to be trusted if they provided held authority about her condition. Isabel reported that her evidence that they had specific disease knowledge and could ‘doctor did all the managing…I have to check my lung offer sound medical advice. For health care professionals, capacity. He monitored it very closely…I had to trust him’.
self-management was viewed as the patient adopting appro- In this model, the doctor rather than the patient managed priate practices in relation to their disease. Medical manage- the disease process; instead the patient learnt to trust medical ment took a narrow view whereas management of asthma, knowledge and management. Learning to trust was part of because of the long-term nature of the illness, deserved to slotting into a medical management programme, precisely placed in the context of the person’s life. In this model the because the patient was not invited to take part in asthma person was objectified as ‘the patient’.
management. Medical management was something done topatients and people were expected to comply with medicalorders. However, older people might have expectations that doctors would tell them what they should do. Even so, they Another tentative model identified by participants was a expected that the doctor’s authority and trust should be collaborative one, which used a combination of biomedical earned through having specific disease knowledge, Linda and experiential terms to describe asthma. Some merged their expected her GP to provide this knowledge: biomedical understanding of asthma with the impact this I had a heavy cold and she [my doctor] asked if I had asthma – I was condition had on their lives. When some older people with thinking, ‘You should be telling me!’ I went onto the preventer and asthma talked about self-management, they suggested that the reliever – it was good since, except when hot and dry or very cold.
this involved other people managing their asthma. However, I consider (myself) lucky to have developed it later.
others described management as a joint effort between themand health care professionals (usually general practitioners), Julie added, ‘Doctors play a more significant role – I think or perceived self-management to be their own agency.
sometimes the doctor doesn’t know what he is talking about’.
Involving participants in a participatory process where they Jim raised another aspect of medical management: could view both the medical and ‘self’-aspects of management Some doctors do become complacent with you if you see them for too gave us an opportunity to find out more about the possibility long. If I have arthritis on my record – it doesn’t matter what problem of developing a self-management model that had ‘self’ as the I have, it’s to do with the arthritis. I couldn’t move my foot off the centre, and in which the person was viewed as ‘the client’.
floor and I went to the doctor and he looked at the card and said, ‘It’s Bodenheimer et al. (2002) referred to this model as the Joint effort between participants and health care profes- Medical expertise was questioned by Jim, and having another sionals was most likely to be a result of applying the chronic illness label meant that asthma did not receive principles of asthma management in designated asthma Medical management sometimes led to a narrow focus, whereas effective management of asthma demanded that the Going to the GP, having access to an asthma management specialist, person’s life be viewed in context, and not only as a disease- put me on the right medication. They did try Pulmicort on me. I had a specific response. Frasier made a claim for holistic manage- 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 Well, this rather interests me because I have been asthmatic for years.
gown [and] put that on instead of drying yourself. Same with slippers.
I have a good background of science. I think we need the set up of I wouldn’t have known about using the dressing gown instead of a special clinics that can give a holistic view of people and their medications, dietary habits, dangers of things like preservatives…It Ó 2004 Blackwell Publishing Ltd, Journal of Advanced Nursing, 48(5), 484–492 Issues and innovations in nursing practice It was clear from this example that Jane was offered much I go and look at why I can’t breathe. If I feel I can’t breathe, I might more than medical advice. We do not deny that medication take a Throatie [a soothing cough sweet]. Sometimes that settles it, information is vitally important for asthma management, but and I don’t go for the big guns first. If at night and it’s cold, I put my participants emphasized that management of asthma was head under the bedclothes and breathe warm air. You get to be pretty more than drug management. Jane was involved in her care and was in a position to make informed decisions about her Taking control was evident in stories from people who were experts in management of the self, as Finlay described: When clients were involved in care, Isabel suggested that ‘we bring intelligence to that relationship (with the doctor)’.
I was on Pulmicort as a preventative. And I put myself off them – told When input from the client was acknowledged as valuable, him (GP) I couldn’t handle the throat problem. I seem to be able to this might be conducive to self-agency in management.
manage at present. I’ve done well, considering I’m 87 in a couple of Naomi, when talking about her relationship with her health 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 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 Finlay had made decisions about which medications he of days/nights being short of breath and go down and see her, and she would take, he prided himself on managing the ‘self’, and writes out the change in medications so I know exactly what to do.
he was constantly working out ways to improve the ways helived with asthma. He made decisions about what to share Asthma clinics have only recently been a choice for people in with the doctor and, in taking control, he had governed his Australia, and clients tend to be people who have been newly illness. Adams et al. (2001) showed that participants wished diagnosed. Collaborative management seems most likely to to remain in control by choosing when to seek care, and be a result of involvement with an asthma clinic. These wanted to share decisions about initial changes in medication offered much more than straight medical management during moderate asthma exacerbations.
advice, and collaboration between GP and client was central.
Experts in management of the self often have a long When input from the client was acknowledged and valued, learning history, especially when they have lived with the facilitation of the client toward self-agency in asthma condition for most of their lives (Kennedy 2003). Partici- pants’ observations of the changes that had taken place inasthma management during the last 50 years was indeed interesting. We heard about dietary requirements, when achild with asthma was expected to take only ‘black rye Participants spoke about a model that we have designated as bread, lettuce and water’. Penny explained that as a 7-year- self-agency. Most people had identified their own responses to illness, and some were constantly planning their dailyroutines as a means of creating order in their lives. Devel- I used to have asthma powder…you remember the tobacco tins the oping alternative lifestyle habits appeared to be important for men used to smoke? Used to have to put it in a tin and burn it and those who had embraced self-management. Taking control of inhale the smoke. Just makes you want to throw up thinking about it.
their own lives was crucial for those who claimed to manage Penny’s sister, Diane, who also attended the PAR group the self, as their accounts indicated that helping oneself was an important aspect of living with asthma. Taking action todeal with it was a part of everyday life, and the person 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 Some participants talked about self-management solely in took her breath. Like a resuscitation.
terms of their own agency. Others ignored biomedical These people were experts on their own conditions and language and focused entirely on the impact of the condition responses to illness because their life experiences had on their lives and their responses to the impact. Penny informed them about managing the self. Changes in medical described how she had learned to be ‘cagey’ or ‘sneaky’ in management were monitored with vigilance. These people have seen many asthma management changes, and keeping …about having osteoporosis and asthma and being on medications informed meant that they would be the first to know about for both. It’s a vicious circle. I’ve learnt to be cagey. If I can’t breathe, better and new ways of managing their condition. In addition Ó 2004 Blackwell Publishing Ltd, Journal of Advanced Nursing, 48(5), 484–492 to searching for new information herself, Penny worked self-management. The first two models have been previously alongside her doctor: ‘My doctor tells me, ‘This is new on the articulated by Bodenheimer et al. (2002); however, the self- market, so try this’. Penny had undertaken a process of agency model of self-management is our theoretical contri- learning from herself, others, peers, and doctors so that she bution. Older people who had lived with asthma for most of could find a way for asthma to be part of her life. While she their lives were clearly experts in the management of their was the first to say, ‘Asthma can make your life terrible’, she condition. Experts in management of the self often have a concentrated on things she could do – ‘write stories, paint long learning history, especially when they have lived with instead of playing sport’. She had learned to do things this condition most of their lives. Those older people in our study who were at an expert level of ‘self’-management were Management of the ‘self’ was a full-time job. Finlay asked able to conceptualize and use these influences in ways that the group to reflect on their self-management: enhanced their health. With this awareness, they manipulatedthe extended and external environment to suit their current Are we taking management of asthma for granted just because we situation. Changes in medical management supported by have this thing? We have found out for ourselves what is happening, research were monitored with vigilance. Those who had had we see articles on asthma, and we ask our doctor who may be more asthma since childhood had seen many management changes, prominent in thinking and diagnosis. I wonder whether we encourage and keeping informed meant that they would be the first to people enough to find out things for themselves? know about better ways to manage their condition. They He had obviously made decisions for himself, and wanted to recognized that asthma fluctuated as life and the illness encourage others in the PAR group to take responsibility for When medical help was sought, participants preferred this In summary, self-management was about reclaiming the assistance in collaboration with health care professionals.
self and regaining full human identity. This meant achieving This was congruent with the collaborative model of care recognition and support for self-monitoring practices.
identified by Bodenheimer et al. (2002). What made theinteraction different was that it was their decision to enterthis model when acute events occurred or other medical treatment was sought, rather than a health professional We have articulated three tentative models based on the data benevolently deciding that this was the best course to steer.
generated with participants. Although self-management was Taking control of their own lives was crucial in managing the shown to have multiple meanings, the dominant model was self. Helping oneself was an important aspect of living with medical self-management. In addition, much of the literature asthma, and taking action to deal with the condition was a assumes that self-management means the same to all people – part of everyday life. Even for these self-determining experts, both professionals and those living with a chronic condition.
management of the ‘self’ was seen as a full-time job.
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 andconcordance have been used.
This study gives a foundation for nurses to understand how In this study it was identified that the major constraint on older people living with asthma are able to achieve a level of self-management was a narrow conception as solely medical self-agency that does not rely on health care professionals management, and notions of patients’ self-agency were taking the lead role in management. It also highlights that this dismissed. Yet participants who had asthma since childhood chronic disease does not just exist in a clinical framework of were experts in their own self-management, although they expiratory peak flow measurement and medication manage- were not always acknowledged as such. They were conver- ment. Nor does it necessarily require us to provide ‘off the sant with medical asthma management in the first instance, shelf ‘self-management education about how we think that and subsequently managed the ‘self’ in the context of their people ought to cope. When nurses cross therapeutic paths lives. They had developed a sense of mastery (Kralik 2002).
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