The influence of illness perspectives on self-management of chronic disease
Department of Health Science IHV
Mid Sweden University
SE-851 70 Sundsvall
Telephone: +46 60 148494/+46 73 0270788
audulv å, asplund k & norbergh k-g (2011) Journal of Nursing and Healthcare of Chronic Illness3, 109–118
The influence of illness perspectives on self-management of chronic disease
Aim. To explore people’s illness perspectives and related self-management of chronic disease.
Background. Individuals’ illness beliefs and perspectives have been suggested to influence their self-management behaviour. However, research that has examined the influence of illness perspectives on chronic disease self-management has been largely quantitative and has focused on selected elements of self-management. How individuals’ illness perspectives influence their whole of self-management has not been investigated in depth.
Method. The phenomenographic research study entailed 26 narrative interviews with Swedish adults with a variety of chronic diseases. Data were collected mostly during 2006.
Results. The participants described two illness perspectives; being life-oriented meant to focus upon how to live a good life with disease, whereas a disease-oriented illness perspective emphasised the medical and physiological aspects of disease. The participants attested to one of the two illness perspectives as a main perspective, although they shifted between the perspectives depending of context and illness experience. The participants’ illness perspectives were reflected in their understandings of self-management. Participants with a dominant life-oriented illness perspective performed self-management in order to continue living a ‘normal’ life (e.g. facilitate activity and mental well-being). When holding a disease-oriented illness perspective, self-management was focused upon controlling disease (e.g. symptom management and avoiding disease related complications).
Conclusions. People with chronic illness hold a dominant illness perspective that determines how they understand and enact self-management. These perspectives are not static; instead individuals tend to shift between the perspectives under specific circumstances.
Relevance to clinical practice. Health-care providers shall acknowledge that individuals’ with chronic illness shift between a life-oriented and a disease-oriented illness perspective. The results of the current study can be used by health-care providers in order to launch a dialogue in order to support individuals’ self-management.
How people experience living with chronic disease is not entirely dependent on the nature of the disease. Investigations of the experiences of people with different diagnoses have generated similar narratives about struggling, fear, altered self-image, adjusted life, but also about finding solutions, and hope (e.g. regardless if the diseases were life-threatening and non-life threatening, progressive and non-progressive, and episodic and ever-present) (Clancy et al. 2009, Håkanson et al. 2009, MacDermott 2002, Iaquinta & Larrabee 2004, Olsson et al. 2008, Svedlund & Danielson 2004, Johansson et al. 2009, Olshansky et al. 2008). One factor that determines people’s experiences in living with a chronic disease is their illness perspective; this perspective includes the individual’s attitudes, beliefs, and values about living with the disease (Paterson 2001).
Researchers (Haidet et al. 2006, Kralik & van Loon 2010) have suggested that an individual’s perspective about his or her chronic disease is integral to determining how that person manages the disease on an everyday basis. However, few studies exist that have explored the interaction between illness perspective and the nature of self-management of chronic disease. In this paper, we will describe the findings of a research study conducted in Sweden that explored people’s illness perspectives and related self-management of chronic disease.
The notion of illness perspectives originated with the work of Arthur Kleinman (1988). He determined that the meaning the person with chronic disease held about his disease is a major influence on how the person live. Over the years researchers have developed a couple of psychological theories and models concerning individuals’ risk and/or health behaviour which share the theoretical assumption that people have individual beliefs about their health and illness, i.e. Health belief model, the Protection motivation theory, Theory of reasoned action (Cook 2008). However, research attempts to examine how individuals illness perspectives influence their self-management has been largely relegated to studying the influence of illness perspectives on single elements of self-management (e.g. the control of symptoms or use of medication). Studies have found that individuals’ illness perspectives influenced how they act toward symptoms, triggers and how they incorporated their illnesses in their daily lives (Hansson Scherman et al. 2002, Hörnsten et al. 2004, Darr et al. 2008). For example did people with arthritis perform little pain management if they believed arthritis pain to be a natural part of ageing (Davis et al. 2002) and among people with diabetes was beliefs concerning treatment as very effective relate to exercise and eating healthy (Hampson et al. 1995). Halm et al. (2006) investigated the influence of illness perspectives on the use of asthma medication, symptom monitoring and follow-up health-care visits. These researchers determined that if people understood their asthma as an acute episodic illness, rather than a chronic disease, they used less preventative medication, engaged in less self-monitoring and had fewer routine follow up visits than those who viewed asthma as a chronic condition.
Researchers have found associations between illness perspective and self-management practises. However, existing research is predominantly quantitative, involving surveys that result in descriptive statistics about the nature of this influence on selected elements of self-management (e.g. medication, exercise and diet). The influence of illness perspectives is mostly represented as static and unchanging, regardless of research that has demonstrated that people shift their illness perspectives according to what is happening with their disease and in their lives (Paterson 2001). According to Paterson (2001) individuals shifting perspectives are likely to influence their self-management performance but there exist no research upon the matter. This study intends to address what is currently missing by providing an in-depth qualitative understanding of how illness perspectives influence people’s commitment to and understanding of the whole of self-management.
To explore people’s illness perspectives and related self-management of chronic disease.
The research approach used in the current study was phenomenography. The phenomenographic research approach is based on the assumption that people understand and experience the world in qualitatively different ways. If their different ways of experiencing a phenomenon are discovered and explored, their different ways of dealing with a phenomenon or a situation may also be explained (Marton & Booth 1997). This means that the focus of phenomenographic research will be on finding various ways of understanding a phenomenon.
The distinction between phenomenography and phenomenology lies in the fact that phenomenography focuses on variation in how a phenomenon is understood, while phenomenology is concerned with finding the core meaning in the experience of a phenomenon. In phenomenology, the focus is a shared meaning between participants; in phenomenography, the emphasis is between and within-individual variations in ways of understanding the phenomenon under study (Larsson & Holmström 2007).
A search of phenomenographic research in Scopus reveals 266 articles in refereed journals. Most of these are in the field of health education and arise from Scandinavian countries. Phenomenography has been applied in nursing research primarily in regard to how health-care practitioners learn their practice as clinicians (e.g. Bastholm Rahmner et al. 2010), but recently also to investigate peoples understanding of illness (e.g. Winterling et al. 2009, Zidén et al. 2010).
Twenty-six adults diagnosed as having at least one chronic disease were recruited from an outpatient clinic in a hospital in a medium-sized Swedish city with 100 000 inhabitants; the hospital was situated in the county of Västernorrland, Sweden. Inclusion criteria were aged 18 years and over, the ability to speak Swedish, and that the person had been diagnosed with a chronic disease for at least one year. The 18 women and eight men had diagnoses including ischemic heart disease, diabetes mellitus, multiple sclerosis, rheumatic disease, chronic kidney failure, and inflammatory bowel disease; 14 had more than one chronic disease. The participants’ ages ranged between 19–83 years (Median = 58·5) and they had been living with their diseases for between 1–60 years (Median = 16) (for more detail, see Table 1).
Table 1. Description of sample demographics (N = 26)
|Chronic kidney failure, N = 4||1–5, N = 4||Full time employment, N = 6||<30, N = 4||Married or cohabitating, N = 18|
|Diabetes mellitus, N = 9||5–10, N = 9||Part time employment and part time disability pension, N = 4||30–60, N = 12||Living alone, N = 8|
|Inflammatory bowel disease, N = 5||10–20, N = 5||Sick-listed or having full disability pension, N = 7||>60, N = 10|| |
|Ischemic heart disease, N = 5||>20, N = 8||Retired, N = 9|| || |
|Multiple sclerosis, N = 2|| || || || |
|Rheumatoid arthritis, N = 9|| || || || |
In order to attain a range of narratives, a diverse sample with varied experiences and perspectives was desirable (Polit & Hungler 1999). Therefore, one of the authors (ÅA) looked at the outpatient clinic’s appointment schedule to identify possible participants that fulfilled the inclusion criteria for the study, and would meet the criteria for variation according to gender, age, diagnosis, and duration of diagnosis. Potential participants were approached face-to-face at the clinic by ÅA and given verbal and written information about the study. Five participants agreed to participate in the study but later withdrew for personal reasons (illness of a family member, illness of self, lack of time). A few people stated that they would not participate in the study because they were ‘too well’ and believed they would have nothing to contribute.
Single face-to-face interviews were undertaken at the convenience of the participants in a private location chosen by them; approximately half of the participants were interviewed in their homes and the others chose locations such as a seminar room at the university. The interviews were narrative in character, composed of open-ended questions aimed at exploring the participants’ understandings of illness and self-management. Examples of interview questions included: ‘Can you describe how it is to live with [current diagnosis]?’‘Can you tell me about when it is difficult to manage your illness?’ and ‘Can you tell me about how you experience your management of your illness?’ Probing was used in order to understand the meaning in the participants’ descriptions; e.g. ‘Why is that difficult/important for you?’ and ‘Could you describe a situation when this was an issue?’ The interviews lasted between 20 minutes and two hours (average 40 minutes). Individuals with long illness experience or substantial illness intrusion tended to have longer interviews, whereas the interviews with individuals stating that ‘illness was but a small part in their lives’ were shorter. The interviews were transcribed verbatim and the transcriptions were checked against the original tapes by ÅA. Data were collected during late 2005 and early 2006, a few preliminary interviews were conducted in September 2003 as a preparation for the study.
The study was approved by the Regional Ethical Review Board. The participants received written and verbal information about the study. For example, was the participants informed that their participation was voluntary and they could withdraw at any time without giving an explanation. Further, was the eligible participants informed that their choice about taking part would not be known to their health-care providers and thereby not influence their care in any way.
Data analysis occurred in the tradition of phenomenography; i.e. at first, all transcripts were searched for statements or words describing participants’ ways of understanding their illness. Several temporary codes and later categories were constructed to explain these illness perspectives. Because phenomenography focuses on identifying diverse understandings, the temporary categories were read with a focus on their structure (i.e. the focus of the category) and referential aspects (i.e. the underlying meaning of the category). During this stage, the researchers asked questions such as, ‘What is the main focus of this category?’ and ‘What distinguishes this category from the other categories?’ After the initial development of the two illness perspectives (i.e. life-oriented and disease-oriented), the analysis went beyond a strictly phenomenographic approach. The reason was that we wanted to further explore the shifts in perspectives and their relationship to self-management. In this phase, the researchers asked questions such as, ‘What characterizes situations that lead to shifts from a life-oriented to a disease-oriented illness perspectives?’ and ‘What characterizes self-management in relation to a “life-oriented illness perspective?”’
The computer software Nvivo 7.0 (Edhlund 2007), a qualitative data analysis resource, was used as a tool for keeping track of the data and all coding decisions. The researchers wrote memos to track the evolution of ideas and reflections made during the research.
The research findings revealed two core illness perspectives: life-oriented and disease-oriented. Each of the participants attested to one main or dominant perspective, but they shifted to the other perspective as much as hourly, depending on the context and illness experience, such as when acute exacerbations of the disease occurred. The dominant perspective was the participants own understandings of illness and wellness, e.g. viewing wellness as the absent of symptoms. While the temporary perspective was the participants’ current focus on either life or disease (see Table 2).
Table 2. Descriptions of the different illness perspectives
|Description of the dominant illness perspective – how illness and wellness was understood||Participants with a dominant life-oriented illness perspective focused upon how to live a good life with the disease. Wellness was defined as living as the participants’ desired within the constraints of the disease. They appreciated their ability rather than limitations, focusing on mental well-being allowing the illness to take up only a small part of life||Participants holding a dominant disease-oriented illness perspective emphasised the medical and physiological aspects of disease. Wellness was defined as being asymptomatic. Participants emphasised the risk of developing disease related complications or getting disabled|
|Description of the temporary life-oriented perspective depending on which dominant illness perspective the participants attested to||Participants took an active part in shifting to a temporary life-oriented illness perspective when they for example performed meaningful activities or maintained relationships despite their symptoms or limitations||Participants holding a dominant illness-oriented perspective had a temporary life-oriented perspective when they were free from symptom and disease related thoughts. Then they lived what they called a ‘normal’ life|
|Description of the temporary disease-oriented perspective depending on which dominant illness perspective the participants attested to||The participants with a dominant life-oriented illness perspective shifted to a temporary disease oriented illness perspective in situations when health threats or symptoms became uncontrollable or interfered with their activities||Participants with a dominant disease oriented illness perspective had a disease-oriented perspective in situations when the disease became overwhelming; such as when symptoms worsened|
There were no major differences identified in illness perspectives related to the type of chronic illness; however, the participants’ illness perspective seemed to be influenced by the degree of impact of the disease’s symptoms or treatment. Participants with severer or persistent symptoms and complex treatment regimens tended to have a dominant life-oriented illness perspective, and contrarily, participants with mostly asymptomatic illness mostly held a dominant disease-oriented illness perspective. For example, a woman with rheumatoid arthritis experiencing few flare-ups provided a description of an illness perspective that was similar to that given by a man with mostly asymptomatic ulcerous colitis, and a woman with well-controlled heart failure. Meanwhile, the illness perspective described by a woman with severe diabetes who received dialysis was similar to that provided by a woman living with severe and disabling multiple sclerosis (see Table 3). In the first section, we will describe the two illness perspectives. Later, we will describe how the participants depicted the influence of these perspectives on their self-management.
Table 3. Quotes illustrating how participants described illness. Participants with a dominant life-oriented illness perspective emphasised the disease consequences upon their life, meanwhile participants with a dominant disease-oriented illness perspective focused upon physical sensations and other disease signs
|Dominant life-oriented illness perspective||A woman with severe diabetes and chronic kidney failure receiving dialysis (25)||I have been very swift in doing things […] but now I sort of have to plan what I do|
|A woman living with severe and disabling multiple sclerosis (15)||You have limitations in what you can do and when you have had a rather active life you find it hard [to cope with]|
|Dominant disease-oriented illness perspective||A man with well-controlled heart failure and diabetes (23)||It [atrial fibrillation] was not dangerous, they said. But when it happened it was so unpleasant, if you tried to check the pulse by yourself, it was quite impossible|
|A woman with rheumatoid arthritis experiencing few flare-ups (26)||And for the rheumatism, I take some pills for that. It is okay, it kind of flares and in-between it’s not a problem|
Life-oriented illness perspective
The participants who attested to a life-oriented perspective as their primary illness perspective focused on their chronic disease as only part of their daily lives. They emphasised the need to live in the way that they wanted; i.e. to live in a way that was meaningful and reminiscent of the positive aspects of how they lived predisease. They attempted to develop strategies and behaviours that allowed them to live with their illness as ‘normally’ as possible. Wellness, according to participants who held to this perspective, was seen as living as they desired within the constraints of the disease.
Participants indicated that an important aspect of this perspective was to celebrate what one can do, rather than to emphasise the losses associated with having the disease. For example, one woman with rheumatoid arthritis (6) said, ‘And I think that if I live as normally as possible and try to do (the activities I can) and, sort of, am positive. That’s the medicine for me. That’s why I feel as good as I do’. Another woman (25), with diabetes, chronic kidney failure, said: ‘It is hard to grasp what it’s like to be totally healthy. […] I am the person I am now and I live my life as I believe is best for me’.
Disease-oriented illness perspective
Participants who described a disease-oriented illness perspective emphasised the medical and physiological aspects when describing their illness. They focused on the results of clinical tests, disease-related symptoms, and risks of achieving disease related complications or being worse off in the future. The majority of participants who mainly attested to this perspective described themselves as physically well and being ill only when they experienced symptoms or were told by their physician that they were not well; they described wellness as basically determined by feeling physically well (e.g. good diagnostic tests results and being asymptomatic).
Participants who held to a disease-oriented illness perspective described being controlled by their symptoms and their disease status. For example, one woman with Crohn’s disease (18) described how she recovered her ‘strengths between the flare ups’, her daily activities and her current well-being were determined by the state of her disease; ‘when you are worse, then it’s hard, and you get tired and cranky. And when it is even darker, then all I want to do is skip [it all]’. Many participants with diseases characterised by acute exacerbations indicated that they did not think about their illness in periods when they had few or no symptoms. For example, one woman with venous insufficiency and ischemic heart disease (19) said, ‘I don’t walk around thinking about theses aches and pains, but now I have to, because now I’m in pain, but otherwise I wouldn’t walk around thinking about it’.
Shifts in illness perspective
The participants identified several kinds of situations that resulted in shifts between illness perspectives. Participants that shifted from a life-oriented to a disease-oriented illness perspective described certain kinds of situations that demanded that they put their disease in the foreground. Such situations included when symptoms became uncontrollable or when a new disease-related complication became apparent. For example a woman with rheumatoid arthritis (8) who generally assumed a life-oriented perspective indicated that when her pain was overwhelming it was necessary to ‘give in to the disease’. She saw the shift to a disease-oriented illness perspective as self-protective, a temporary way of focusing just on herself and her disease. ‘Sometimes, you just enter into yourself, shut all the doors around you, not meeting anyone, not seeing anyone. Then I just want to be with myself. […] Because then, maybe a few days pass and then you feel a little better’.
Another precursor of a shift from life-oriented to disease-oriented illness perspective was encountering evidence of a disease-related complication or a situation that the person perceived as high risk in developing a disease-related complication. One man with diabetes (16) gave as an example that when his vision deteriorated ‘overnight’, he ‘got a little panicked’ and became focused on his blood glucose readings, focusing on what was happening to his body that might indicate that he would lose his vision. ‘I sort of lived with the blood glucose meter. But then, I probably monitored [blood glucose]… well, during several weeks, once per hour during my waking times’.
Some of the participants who held a dominant life-oriented illness perspective stated the illness constrained their possibilities to live as they chose. They described that the disease required them to vigilantly monitor their bodies and their prescribed regimes; otherwise, they risked long-term consequences of severe health complications (e.g. going blind or having a shorter life) or short-term consequences of increasing symptoms and not being able to carry out their plans. One woman (11) stated that diabetes ‘runs’ her life. ‘It’s because I believe I can’t afford any other [way of living]. I would rather live and eat this way or manage like this, so I can live for maybe two extra years’. In such situations participants described how they had to assume a disease-oriented perspective in order to live a ‘normal’ life, but at the same time believed that a life-oriented perspective could help them to focus on well-being and to find ways to live as they wished within the constraints imposed by the disease. The same woman described how she in order to be able to bike ride with her niece took precautions in her diabetes management (e.g. monitored blood sugar levels, adjusted her insulin pump, brought provisions) in order to avoid a hypoglycaemia event.
Participants with a dominant disease-oriented illness perspective made temporary shifts to a life-oriented perspective at specific times. These included when they experienced no disease-related symptoms and when they wanted to strive against the disease. For example, one man with Crohn’s disease and diabetes (20) stated that he concentrated on living his life as a well person whenever he was free of his symptoms. However, a woman with diabetes (13) shifted to a life-oriented perspective whenever she wanted a break from having to think about and plan her diabetes management. On these occasions, she overlooked many aspects of her disease management, such as glucose monitoring and diet. She described such shifts as a manifestation of her conflict between ‘living the good life versus living a long life’: ‘I don’t want to have to think all the time. I should be able to live as I choose. Maybe I will die before my time instead’.
Another shift that was evident in the participants’ narratives was a shift to return to the dominant illness perspective. Participants who held a temporary disease-oriented perspective shifted back to the life-oriented perspective when they developed strategies or drew on previously-learned strategies to control the impact of their disease (e.g. control symptoms and disease-related complications or to mediate a high risk situation). Such shifts involved their assuming an active role in learning new strategies and assessing the situation. A woman with multiple sclerosis (22), shifted back to her dominant life-oriented illness perspective when she attempted to find ways to deal with the increasing paralysis in her legs. She used positive thinking techniques that had been helpful in the past when she had experienced discouraging signs of progression of the disease.
A return to a disease-oriented illness perspective was prompted most often by symptoms of the disease occurring after a period of being symptom-free. For some participants, such a shift occurred when symptoms of the disease went from controllable to uncontrollable. For those who had made the temporary shift to a life-oriented perspective because they wanted to strive against the disease, the return to a disease-oriented perspective occurred when the participant or another person (e.g. family member, health-care practitioner) became concerned about the neglected self-management or the possible outcomes of that. For example, a man with ulcerous colitis (10) was prompted to return to a disease-oriented perspective when his friends pointed out the dangers of his ‘drug-holidays’: ‘I do not want to [take medication] but then I have people that all the time says: “But do you want to have a bad stomach” and “Do you want to begin to bleed again”’.
Self-management related to illness perspective
The participants’ illness perspectives were reflected in their understandings of self-management. Most participants with a life-oriented illness perspective embraced self-management that was directed towards their well-being; for example, they developed strategies to be able to do what they wanted despite their disease and to integrate their illness as a part of their life. One woman with diabetes (12) described her response when she realised that she would never be able to walk again. ‘But I have been through so many things now, so it does not [bother me]. Instead, the first thing I say to my husband is, “Well then, I shall have a permobile” [scooter]. Because it can be difficult, if I would want to get out and move around and see people’. Participants with a life-oriented illness perspective often identified the goal of self-management as being able to maintain their abilities, interests and relationships. One man with diabetes (16) stated: ‘Well, that’s [self-management] because of my children. I must take care of me in order to be able to take care of them… [and] because I want to be able to continue being out in the forest and hunt’.
Participants with a life-oriented perspective viewed themselves as making choices about how the disease would impact their lives. For example, one woman (15) focused on the positive aspects of living her life while being ill, and avoiding a focus on the losses she had encountered in having multiple sclerosis. ‘Then it’s important to keep going, you feel fitter, healthier. You try to keep the ill part away. Although you get tired, yes… you forget that you are ill by keeping going’. Some participants described making deliberate decisions to participate in activities, despite knowing that they would experience negative consequences, because they wanted to live in the way they wished. ‘…and sometimes I can take a long walk but then I get the backlash the day after, although I can take it because then I know I have felt well one day… maybe that week’ (woman with multiple sclerosis, 23).
Self-management directed towards well-being and living a ‘normal’ life included balancing, prioritising or adjusting activities, and in some cases, particularly when individuals had experienced losses because of the illness, maintaining a positive attitude. Acceptance of the disease was mentioned by the majority of participants as integral to maintaining the life-oriented perspective. They viewed their illness as something that had happened that they needed to come to terms with and to integrate into their lives.
Well it’s a fact, there is no other way… I can’t get well again. It’s something that you are used to now, I think. And then you can’t just look at the negative aspects, you have to consider the positive aspects as well. And not thinking that it’s very hard [to live with], instead [you should] like live somewhat in the present, you have to seize the day. (woman with multiple sclerosis, 15)
Some individuals with a life-oriented illness perspective strove against their illness in order to stay life-oriented. Performing self-management could be challenging in such a context. Then participants performed self-management reluctantly, developed ‘neutral’ self-management behaviours that were not visible evidence of the disease (e.g. using walking sticks rather than crutches, deciding not to use an insulin pump on the beach where others could see it) or rejected aspects of their self-management. For example, one man with ulcerative colitis (10) described how he decided not to take his medication at times because he was actively resisting the association between his taking medication and living a normal life. ‘I don’t want to be dependent on a medication, instead I want to live an as normal life as possible’.
Participants with a dominant disease-oriented illness perspective emphasised self-management that focused on symptom management and controlling the disease progression, they predominantly used strategies such as medication and life-style regimes (e.g. exercise or diet). Other goals of self-management, such as developing a network of social support or enhancing one’s employment, were not considered within their self-management goals. These participants often viewed self-management as mandatory. They believed that they had ‘no other choice’ than adhering to the prescribed regime, even when this regime constrained their social life. ‘It’s maybe that simple that if I would not take care of myself, I would become ill’ (Woman with Crohn’s disease, 18).
The research findings have revealed two main illness perspectives in living with chronic disease; life-oriented and disease-oriented. These perspectives are similar to other studies identifying ways of understanding health or illness. In a resent study midlife women defined health as the absence of illness or as being able to fulfil life expectancies (Smith-DiJulio et al. 2010) and a study among physicians revealed two perspectives upon disease management; either as health-care providers controlling disease in a biomedical way or patients maintaining health in relation to their own goals (Thille & Russell 2010). In several ways, the findings of this study are reminiscent of the Shifting Perspectives Model of Chronic Illness (Paterson 2001). What this study adds is a more in-depth description of illness perspectives, as well as a description of the actual process of shifting between perspectives, and a detailed description of how these perspectives influence understanding and enacting of chronic illness self-management.
In the Shifting Perspectives Model (Paterson 2001), people with chronic illness are viewed as having one dominant illness perspective (i.e. disease in the foreground or wellness in the foreground). In the current study, the dominant illness perspectives (i.e. disease-oriented or life-oriented) are similar in that one focuses on the disease and the other on life. Another similarity is that illness perspectives are not dependent on diagnoses but are more likely to be related to functional ability and perceived severity of the illness. However, it is striking that people who had lived with the chronic disease for several years and/or had consistent and controllable symptoms or disability held to a dominant life-oriented illness perspective, while individuals with few or irregular symptoms/disability held to a dominant disease-oriented illness perspective. A possible explanation is that it is more crucial for people with severe illness to learn strategies to shift and maintain a life-oriented illness perspective in order to experience a life worth living. However, individuals who do not regularly experience symptoms or disability (i.e. they have periods of being symptom-free) may automatically shift temporarily to a life-oriented perspective as an outcome of feeling well, but be unable to sustain this perspective because they have developed few strategies to maintain a life-oriented illness perspective.
Paterson (2003) highlights the importance not to regard one illness perspective as being better or more effective in chronic illness management than the other. The current study revealed that people with each illness perspective made decisions about their self-management that were congruent with their illness perspective but could be risky to their well-being. For example, those that strove against their disease because they wished to maintain a life-oriented illness perspective often chose to enact activities that they knew would cause them negative outcomes later. The paradox of living with a dominant life-oriented illness perspective is that in order to live life as one wants, one often places oneself at risk for symptoms or disability, thereby forcing a shift to the disease-oriented illness perspective (e.g. the person with a multiple sclerosis who goes for a long hike but later is too exhausted to do anything). The paradox of the disease-oriented illness perspective is that in order to focus on the disease, one does not engage the people or the life strategies that might be actually effective in managing the symptoms or disability (e.g. people with this perspective did not reflect on their working situation or relationships’ influence on their disease).
A striking feature of the study findings is that participants with a predominant life-oriented illness perspective were actively involved in their decision to maintain this perspective or when they made the choice to be temporary disease-oriented. These participants chose the life-oriented perspective because they believed that would result in long-term benefits for them and because they wanted to live their lives not as ill people but as people who had a disease. However, participants with a dominant disease-oriented illness perspective were most often passive in regard to maintaining this perspective and how and why they shifted between the different illness perspectives. They held the illness perspective because they believed that the disease’s symptoms or disability resulted in them having no other choice but to focus on the disease.
The current study expands the Shifting Perspectives Model of Chronic Illness (Paterson 2001) in that it explored how the illness perspective influenced participants’ understanding and enactment of self-management. The findings revealed that those who held to a dominant life-oriented perspective embraced self-management in order to live life as they wished; those with a dominant disease-oriented perspective emphasised the goal of self-management as controlling the disease. However, particularly within the life-oriented illness perspective, how participants enacted self-management to accomplish their stated goals of self-management was complex. Although some participants with a dominant life-oriented perspective embraced self-management as a way of being able to live as they liked, others with this perspective overlooked their aspects of self-management because they believed participating in self-management activities would make them disease-focused and reveal their disease status to others; they preferred to appear ‘normal’ to themselves and to others. This is similar to the finding by Townsend et al. (2006) who described how people with co-morbidities viewed using ambulation aids as both a way to ease symptoms but also as making the illness more visible and thereby threatening the individual’s identity as a ‘normal’ person.
The current study’s descriptions of shifts in illness perspectives are grounded in the participants’ retrospective accounts. Prospective research entailing a longitudinal design methodologies, such as modified think aloud (Paterson et al. 1999), may have provided more information about how illness perspectives change over time and in various situations. Future quantitative research should also investigate differences in illness perspectives between diagnoses, age groups, gender and ethnicity etc. Although, we suggest that a more intrusive experience of illness influences the illness perspective we can not make any definite conclusions about relationships between illness perspectives and demographics in our small qualitative sample.
A limitation of the current research is that the study did not examine what self-management the participants actually performed. Instead, it focuses on the participants’ descriptions of their self-management and their understanding of the goals of self-management. It should be acknowledged that what behaviour people retrospectively report and what they actually do are not the same (Kupek 2002), and that people may not always possess the individual and external resources in order to perform the self-management they perceive they need (Audulv et al. 2009).
Conclusions and clinical implications
The current study found that people with chronic illness hold a dominant illness perspective (i.e. life-oriented or disease-oriented) that determines how they understand and enact self-management. The study has highlighted that illness perspectives are not static entities, shifts occur under specific circumstances; therefore one cannot assume that people who attest to one perspective will maintain that perspective in all situations and at all times. It has also pointed to the beneficial and untoward effects of holding either illness perspective. The findings of this study hold significant implications for clinical practitioners, namely:
- • Other research has described practitioners’ tendency to assume that the person with chronic illness wishes to focus entirely on the disease (Barry et al. 2001). The current study highlights the importance of practitioners exploring patients’ illness perspectives with them and includes the person’s identification of meaningfulness in living with the disease. Health-care providers need to develop the skills to support self-management related to both a life-oriented and a disease-oriented illness perspective.
- • Health-care practitioners could use the findings of this study as a basis for discussing with patients if there are aspects of the findings that resonate with them. For example, a practitioner might state, ‘It says in this study that sometimes people with chronic illness strive against their disease. Have you experienced this in living with your disease?’ This could form the foundation for a discussion about how to mediate the risks of such experiences.
- • Health-care practitioners who identify patients with a dominant disease-oriented perspective should engage the person in a discussion about strategies to become less controlled by the disease and to live in a more meaningful way when the symptoms of the disease predominate. Perhaps individuals with a dominant disease-oriented perspective could be assisted by health-care practitioners to develop strategies to assist a shift to a life-oriented perspective (e.g. alternative ways of controlling symptoms, strategies to integrate self-management in their lives and ways they could facilitate their well-being).
We want to thank all our participants for sharing their narratives with us. We also want to acknowledge Dr Jan Larsson for his thoughtful advice concerning the phenomenograhic approach and analysis, and Dr Barbara Paterson for her valuable comments regarding the manuscript.
Study design: ÅA, KN, KA; data collection: ÅA; data analysis: ÅA, KN, KA and manuscript preparation: ÅA.
The research was funded by Mid Sweden University.
Conflicts of interest
No conflicts of interests.