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The influence of illness perspectives on self-management of chronic disease

2011; Wiley; Volume: 3; Issue: 2 Linguagem: Inglês

10.1111/j.1752-9824.2011.01087.x

1752-9824

Åsa Audulv, Kenneth Asplund, Karl‐Gustaf Norbergh,

Interprofessional Education and Collaboration

Journal of Nursing and Healthcare of Chronic IllnessVolume 3, Issue 2 p. 109-118 ORIGINAL ARTICLEFree Access The influence of illness perspectives on self-management of chronic disease Åsa Audulv RN, Åsa Audulv RNSearch for more papers by this authorKenneth Asplund RNT, DMSc, Kenneth Asplund RNT, DMScSearch for more papers by this authorKarl-Gustaf Norbergh PhD, RNT, Karl-Gustaf Norbergh PhD, RNTSearch for more papers by this author Åsa Audulv RN, Åsa Audulv RNSearch for more papers by this authorKenneth Asplund RNT, DMSc, Kenneth Asplund RNT, DMScSearch for more papers by this authorKarl-Gustaf Norbergh PhD, RNT, Karl-Gustaf Norbergh PhD, RNTSearch for more papers by this author First published: 12 May 2011 https://doi.org/10.1111/j.1752-9824.2011.01087.xCitations: 3 Åsa AudulvDepartment of Health Science IHVMid Sweden UniversitySE-851 70 SundsvallSwedenTelephone: +46 60 148494/+46 73 0270788E-mail: asa.audulv@miun.se AboutSectionsPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onFacebookTwitterLinked InRedditWechat Abstract audulv å, asplund k & norbergh k-g (2011) Journal of Nursing and Healthcare of Chronic Illness3, 109–118The 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. Introduction 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. Background 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. Aim To explore people's illness perspectives and related self-management of chronic disease. Method 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). Participants 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) Diagnose Time since diagnose (years) (median = 16) Working situation Age (years) (median = 58·5) Marital status Chronic kidney failure, N = 4 1–5, N = 4 Full time employment, N = 6 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. Data collection 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. Ethical considerations 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 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. Findings 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 Descriptions by participants' having a dominant life-oriented illness perspective Descriptions by participants' having a dominant disease-oriented illness perspective 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 Demographics Quote 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