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The Structure of Everyday Self-Care Decision Making in Chronic Illness

Sally Thorne, Barbara Paterson and Cynthia Russell Qual Health Res 2003 13: 1337 DOI: 10.1177/1049732303258039 The online version of this article can be found at: http://qhr.sagepub.com/content/13/10/1337

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Thorne et al. / HEALTH RESEARCH / IN CHRONIC ILLNESS QUALITATIVEEVER YDAY SELF-CARE December 2003

10.1177/1049732303258039

The Structure of Everyday Self-Care Decision Making in Chronic Illness

Sally Thorne Barbara Paterson Cynthia Russell

As health care reform strategists increasingly recognize the critically important potential of effective everyday self-care decision making for reducing the burden of illness and the strain on health service systems, we must find ways to understand and support it. In this study, the authors investigate persons with expertise in self-care management of type 2 diabetes, HIV/ AIDS, and multiple sclerosis to understand how everyday self-care decision making is learned and experienced. They used interview, think-aloud, and focus groups to construct an account of how persons affected by these chronic diseases make decisions in relation to the choices in their everyday lives and learn to manage the untoward effects of these conditions according to their unique contexts and values. The findings form a conceptual foundation for ongoing inquiry into this complex phenomenon and provide insights that might assist clinicians to understand more fully the responses and attitudes of those they serve. Keywords: self-care; decision making; chronic illness; interpretive description

t is widely recognized that the vast majority of the burden of chronic illness selfcare management rests on those affected. Although supporting self-care management of chronic disease is an explicit priority for major primary care reform initiatives in most jurisdictions (Department of Health, 2001; Leatt, Pink, & Guerriere, 2000; Rogers & Sheaff, 2000), the complexities entailed in providing this support are not yet well understood (Hernandez, 1991; Maclean, 1991; Maclean & Oram, 1988; Paterson & Sloan, 1994; Price, 1993a). Our assumptions about the priorities in supporting self-care tend to derive from conventional understandings of disease progression management and symptom control rather than a more comprehensive interpretation of what it is like to incorporate continuous attention to a health challenge within the complexities of living a human life (Donovan, 1995; Paterson, Russell, & Thorne, 2001; Wagner et al., 2001). Much of the research in the field of chronic illness care has focused on such issues as compliance with prescribed medication regimens, modification of problematic lifestyle choices, and decision making in relation to treatment options and symptom control (Paterson, Russell, et al., 2001). A less well understood but arguably much more important aspect of the challenge of self-care management in chronic illness is the daily requirement to make decisions and select from options in relation to issues as wide ranging as medication, diet, rest and activity, symptom

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monitoring, deciding when and how to seek help, and other considerations (Hurley & Shea, 1992; Oram, 1992). Despite the significance of these matters, they have not received adequate attention as a primary investigative focus in developing our evidence basis in relation to chronic illness care (McLeod, 1998). In particular, because self-care decision-making research has typically been oriented to discrete decisions and contexts, existing models fail to capture the uncertain, everyday, and/or nonconflictual decisions that individuals with chronic illness make on an everyday basis, often in the absence of definite symptoms. Furthermore, these models tend to consider decisions in a generalized and acontextual manner, stripping away the impact of individual conditions such as available resources, individual preferences or perceptions, and diverse lifestyles (Hollen, 1994). To effectively support expertise within chronic illness self-care decision making and thereby improve health outcomes of those affected, it is now recognized that a knowledge base composed of correlating factor analysis and compliance rates is seriously inadequate. What is needed is a more complex, grounded, and nuanced body of knowledge that will illuminate individual experience in chronic illness selfcare decision making within a context of common patterns and themes. In short, we need to know what expertise in such decision making entails beyond adherence to medical recommendations, understand how it is learned and sustained, and develop strategies for how we can best support it as it evolves over time and circumstance in the life trajectory. In previous studies of persons with type 1 diabetes (Paterson & Thorne, 2000a; 2000b), we documented some of the complexity in expert self-care decision making with that disease. Subsequently, we extended our investigation into the domains of type 2 diabetes, HIV/AIDS, and multiple sclerosis (Paterson, Thorne, & Russell, 2002) as a beginning strategy to glean patterns and themes within expert decision making across diverse chronic conditions. This study represents a secondary analysis of the data sets from those studies, focusing specifically on the structure of self-care decision making as it is understood by those who are believed by their clinicians to be credible and reliable informants about this phenomenon.

BACKGROUND TO THE RESEARCH STRATEGY

The purpose of our studies was to examine the nature of everyday self-care decision making within its natural complexity so as to develop a comparative understanding of that complexity among, between, and within diseases. Essentially, we wanted to learn what effective chronic illness self-care decision making would look like from the perspective of those most intimately involved with it so that we might begin to build a body of evidence to support the direction that self-care management support strategies ought to be taking. To obtain a sample with sufficient variability for this initial exploratory inquiry, we focused our attention on individuals with self-care management expertise in relation to a long-standing diagnosis of one of four specific chronic diseases: type 1 (insulin-dependent) diabetes, type 2 (noninsulin-dependent) diabetes, HIV/AIDS, and multiple sclerosis (MS). We selected these diseases as representing theoretical variations that might provide us with the optimal conditions to illuminate and interpret differences among and between the experiences. Type 1 diabetes is well recognized as the prototype of complex self-

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care management, involving intricate everyday lifestyle and treatment decisions and actions to sustain life. Although type 2 diabetes can include some of the features familiar to us from our type 1 diabetes research, it is typified by an adult onset rather than an onset early in life, and the effects of everyday decisions are generally much less immediate. HIV/AIDS was selected as an example of a disease that represents a rather different social challenge from that of MS or diabetes because of its infectious nature and associated stigma. MS, in contrast to diabetes or HIV/AIDS, has traditionally been characterized by minimal medical intervention coupled with considerable lifestyle adaptation. Thus, in the world of chronic illness, these four represent variations on such critical factors as conventional assumptions about medical management, social stigma, prognosis, and visibility. Entering into this study, we recognized our assumption that effective decision making in relation to self-care management has a positive impact on health outcomes, including but not limited to quality of life, and that expertise in effective chronic illness self-care decision making is a complex phenomenon related to time and experience, both of which are complicated by many additional factors that are as yet not well understood. We therefore selected a research method that would enable us to explore the phenomenon of self-care decision making from the perspective of those who enacted it and to consider multiple coexisting factors that might influence self-care decision making in complex ways. We considered self-care decisions to include all behaviors undertaken by affected individuals for the purpose of promoting or restoring their health (Dean, 1989). Our working definition of the notion of expertise included those individuals who were sufficiently knowledgeable about their disease and the factors that might influence it that they were able to maintain an acceptable level of health within the context of their disease (Department of Health, 2001). As is self-evident, each element of this working definition is operationally problematic and includes considerable subjective judgment and interpretation, and so we selected our participant sample from among those who met two conditions: They had several years experience dealing with their chronic illness, and they were nominated by their clinicians as having expertise in self-care decision making. We anticipate that more explicit conceptual work in defining expertise in self-care decision making might be an important adjunct to this field of inquiry as it progresses.

RESEARCH METHOD
As was mentioned earlier, this study represented a qualitative secondary analysis of data sets from two primary studies of expertise in self-care decision making. The primary data set for the type 1 diabetes study involved 22 participants, whereas the primary data set for the second study involved 21 persons, 7 each with type 2 diabetes, HIV/AIDS, and MS. The methodological approach for both studies was similar, involving nomination by experienced primary care clinicians (i.e., internists, neurologists, or advanced practice nurses in a specialty clinic). The inclusion criteria required that the chronically ill individuals have several years experience in selfcare decision making for their disease, be able to communicate in English with sufficient fluency to articulate their self-care decision-making processes to us, and be believed to be effective in their self-care decision-making behaviors.

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The data collection for participants in both studies involved a strategic combination of three approaches conducted over the course of a 12-month period to capture seasonal variations and some life cycle events. All participants engaged in individual interviews at the outset and following two to three think-aloud sessions. Modified think-aloud sessions constituted 1-week periods during which the individual audiotape-recorded all decisions pertaining to any aspect of self-care decision making. We used interviews following the think-aloud sessions explicitly to delve into the embedded logic and context so as to uncover tacit understandings and broaden our comprehension of the bases on which the decisions were taken. Our preliminary analyses of patterns and themes among and between participants became the foundation for focus group interviews, to which all participants were invited toward the conclusion of the study year. More detailed descriptions of the research design and its application can be found in the reports of the primary studies (Paterson & Thorne, 2000a; Paterson, Thorne, & Russell, in press). Qualitative secondary analysis (Hinds, Vogel, & Clarke-Steffen, 1997; Thorne, 1994, 1998) is a strategy for capitalizing on the existence of extensive and exhaustive data sets (Sandelowski, 1997) and posing additional research questions beyond those for which the original data set was created. The questions driving the original studies had focused on subjective understandings of expertise and the factors that influenced meaning and significance in self-care decision making. The initial study was designed for depth within a single disease, whereas the study of three disease groups was designed in such a manner as to permit comparison across diseases. Knowing the scope and depth of the existing data base, we were well positioned to consider additional questions that could form the bases for secondary inquiries, such as that which is presented as the focus for the analysis presented here. In this context, we asked, How do persons with chronic illness describe self-care decision making? From their perspective, how can we better understand its nature and structure? Our secondary analysis process represented a qualitative descriptive approach to interpretation of common themes and patterns within the data sets (Sandelowski, 2000; Thorne, Kirkham, & MacDonald-Emes, 1997). As such, it yields findings that are not generalizable in the traditional sense but might represent recognizable descriptions of phenomena on which insightful clinical approaches can be built as well as an experiential foundation for future in-depth inquiries within the field of chronic illness self-care management. The findings are presented in the form of a structure of self-care decision making, not to suggest that only one model of understanding such phenomena are possible but, rather, to illustrate that the diverse bits of insight that can be gleaned from various studies using various methods might indeed represent parts of the complex puzzle that each individual experience with chronic illness self-care management can represent. As we develop more coherent, complex, and in-depth ways of articulating an understanding of this embedded and embodied human behavioral capacity, the possible knowledge that we can apply to assisting any one individual or population to live as well as possible with a chronic illness can be enhanced. Thus, this description is intended to place observations and situations into a recognizable context from which clinicians can better understand not only the behaviors involved but also the impact of their supportive efforts.

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RESEARCH FINDINGS
For participants representing each of the disease categories, self-care decision making reflected the outcome of a conscious decision to gain control of the management of their disease and subsequent efforts to assume that control. Thereafter, it involved an ongoing fine-tuning of understanding related to the meaning of selfcare decisions and the criteria by which the quality of various decisions could be evaluated. Within each disease category, the specific nature of decisions to be made was often quite distinct, and there were disease-specific issues associated with evaluating their effectiveness. Despite this, common patterns and processes within selfcare decision making were apparent.

Learning: The Decision to Assume Control

All participants shared a commitment to controlling the disease rather than being controlled by it. They all recalled having taken a conscious decision in this regard at an early point in their illness trajectory and associated that decision with several key insights. These included recognizing that their disease was chronic and would be a feature of their remaining lives, that textbook interventions were either ineffective or problematic, that they did, in fact, have some relevant bases on which to make appropriate decisions in relation to their own disease management, and that if they did not assume control, no one else would assume that responsibility on their behalf. In some instances, they were specifically motivated to assume control by encountering preventable complications with their disease, and understanding that their disease outcomes would be directly dependent on their decisions in relation to self-care and secondary prevention. In making this decision, they drew on awareness of their responsibilities to themselves and others, their previous experiences with lifestyle change, and their awareness of the credible accounts of others who had taken charge of their own lives when faced with similar challenges. According to the participants in these studies, assuming control represented a distinct philosophical shift in their relationship to their disease and its management. Being in control meant being able to mediate the effects of the disease so that they could live as normally as possible. It entailed a redefinition of the meaning of the illness, relationships with others, and relationships with the self inhabiting the diseased body. Characteristic of this decision to assume control was an intensified learning about the disease, its treatment, and the bodys unique response to interventions and situations. Participants typically made a concurrent commitment to healthy living practices in general, such as diet, exercise, stress management, and rest, often including exploration of complementary therapies and practices. The decision to assume control included a decision to monitor the body more vigilantly for untoward signs and for responses to interventions, and to establish personal self-care goals in relation to those bodily cues. In many instances, it also led them to develop collaborative and supportive networks. Learning about the disease, its treatment, and their body responses was accomplished in a variety of ways. All participants considered specialist health care practitioners and other people with the disease to be useful sources of information. Many expressed a commitment to keeping current about the disease and its management and began to enact that in various ways. All described developing an

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awareness of their own unique responses to the disease and its treatments, to life and health events, and to the social context of living with the disease. Much of this learning involved body listening, or the monitoring of the bodys sensations and functioning. Assuming control also implied an evaluative reflection on their priorities in life and a concurrent effort to balance the disease imperatives with those aspects of their own lives that made them meaningful. For example, being able to perform effectively at work, being a full participant in social activities, or having sufficient energy to engage in relationships with others began to take precedence over actions that were singularly directed toward disease management in their self-care decision making. Both short- and longer term goals were considered as they balanced needs, preferences, and desires against disease demands. To assume control, participants also undertook active strategies toward assisting others to become the partners they needed in their disease management. They described shopping around for health care professionals who would acknowledge their expertise and who would agree to being recruited as self-management partners, providing support and encouragement as well as objective observation of behavioral cues that might be relevant to self-care decisions. Thus, participants tended to contextualize self-care decision making in the context of having taken charge of their own lives with the disease and learning how best to accomplish that goal.

Fine-Tuning: The Disease-Specific Context of Self-Care

Each of the diseases that affected persons in these studies represented a distinct constellation of physical, behavioral, and social challenges requiring complex self-care decision making. The decisions related to self-care arose in relation to the primary effects and trajectory of the disease, the social context and lifestyle within which life with the disease was lived, the treatment of the disease and the health care context in which that treatment was obtained or supported, and the futures that the disease might have constrained.

Experiencing the Effects of the Disease

Each chronic disease has its own nature and character that, according to the participants in this study, powerfully influences the manner in which it is experienced. Diabetes, HIV/AIDS, and MS are all serious and, unfortunately, common chronic diseases. Diabetes was a fatal disease until the discovery of insulin therapy, which, in concert with a highly regimented diet and exercise management regimen, can permit a relatively high quality of life. However, serious complications can occur over time, and a direct relationship between effective self-care and the severity of complications is well established. HIV/AIDS was also considered inevitably terminal until relatively recent advances in retroviral drug therapy have increased the longevity of many patients, who have begun to live with the infection in the manner of a more chronic disease. MS has generally been understood as progressive, but not fatal, involving neurological degeneration that profoundly affects independent living. Both MS and HIV/AIDS typically involve profound fatigue, which is much less

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common in diabetes. Diabetes requires a regimen of medication and lifestyle management that powerfully orders and organizes both time and activities in a manner that attracts the attention of others. However, if effective everyday self-care management is achieved, the individual looks normal and behaves normally. In comparison, MS entails relatively little by way of formal medical management approaches but often involves visible differences that can make task performance and social interaction extremely complicated. HIV/AIDS can involve many years of looking and behaving quite normally but living with an infection that has been, and in many instances might remain, the focus of an unprecedented level of fear and social stigma. With diabetes, the effects of daily decision-making can have immediate impact and result in potentially life-threatening complications. In addition, many of the daily self-care decisions have no immediate effects but instead are directed toward maintaining blood glucose levels that will reduce the chance of long-range complications. In MS, self-care decisions generally have little effect on either short- or longrange outcomes but can have a powerful impact on the available energy and quality of daily life. With HIV/AIDS, the benefits of self-care management are much less established because of the newly rendered chronicity of the disease; however, the sociopolitical consciousness of maintaining health until treatments capable of curing the disease can be refined is a powerful motivator. Decisions around fatigue management illustrate the disease-specific nature of this common and often devastating symptom. Because it tends to be intermittent in HIV/AIDS, persons with this disease tend to give in to it, rest, and reschedule their lives to accommodate it. In contrast, MS fatigue can be both constant and pervasive, so people learn to push through it to participate in valued activities. Although body listening is common across the diseases, what it is the body can tell you and how easily you can discern it seems quite different between the three diseases. The idea of body listening has been well documented in relation to diabetes (Hernandez, Bradish, Laschinger, Rodger, & Rybansky, 1997), and those affected can often name a wide range of bodily cues indicative of hypo- or hyperglycemia. Assistive technologies such as glucometers are also available to assist with the process of body listening by providing physiological information to confirm or validate hunches as to which sensations are sufficiently reliable and valid to become part of the listening repertoire. Persons living with HIV/AIDS also typically have access to external measures in the form of regular laboratory testing, especially viral load counts. However, these rarely correlate with identifiable physiological cues in a manner that can refine body listening, and in some instances, they create a tension between what the lab results show and what someone feels or believes to be happening within the body. In MS, there tend to be few external measures relevant to self-care decision making, and body cues are used primarily to provide information about energy level and guide decisions related to time and activities on a day-to-day basis (Price, 1993b). Monitoring bodily cues over time is also commonly used by persons with both MS and HIV/AIDS to identify medication-related side effects as well as to evaluate disease progression. As participants in these studies reflected on their experience in taking control of self-care decision making, they recognized the important impact of disease trajectory on this process. In the initial phases, when they were adjusting to the enormity of the challenge that self-care decision making entails, they often found the intensity of decision-making about self-care quite overwhelming. Over time, many had

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periods of relative stability, when the routines and practices they had developed were effective and they could safely devote less conscious attention to the business of managing their illness. During times of crisis, acute episodes, or changes in the effectiveness of their self-care practices, their attention to self-care could again become predominant.

Managing the Social Context

Each of these diseases is known to influence social interactions: diabetes primarily because of food restrictions, MS because of mobility and fatigue, and HIV/AIDS because of stigma (Thorne, 1993). For persons with HIV/AIDS, the social context often became a particular focus of self-care decision making. For them, disclosing their HIV status, deciding whether to participate in the political and advocacy aspects of the disease, and becoming activists could all be integral elements in taking care of the self and creating the conditions under which they could participate in effecting the long-term gains possible through political processes. In many instances, this also involved participation in self-education and research. Although some individuals in all three diseases groups demonstrated some aspects of such consumer advocacy or political participation, the centrality of such decisions to everyday management of the disease was most apparent in the current social context of persons with HIV/AIDS. For this group, decisions about politicization and identity often became the social context in which all decisions were made. Self-help and support groups were identified as a common interest of persons with all of these diseases, most especially at the time of diagnosis. Although these initially served an information function, those who continued their participation over time did so for more social reasons. Individuals with diabetes rarely felt the need for such social encounters after that initial information acquisition period, and many explicitly avoided social contacts in which the disease would be a focus. In contrast, persons with MS often sought out such groups to interact on an ongoing basis with others who could understand the challenges inherent in living with progressive mobility and energy limitations. As that illness progressed, many also participated in Internet discussions as a specific self-care strategy to combat social isolation. Persons with HIV/AIDS tended to use self-help groups throughout their illness for social action and advocacy, as well as for support and problem solving. In many instances, genuine friendships evolved from these encounters.

Managing Lifestyle
Common to participants across the disease groups was a focus on lifestyle management as an aspect of self-care decision making. Although all were concerned about nutrition as a common aspect of self-care decision making, it had different meanings between the diseases. Eating healthy food was generally recognized by individuals with MS and HIV/AIDS as an important adjunct to their ability to feel well and to postpone disease progression. They often reported a preference for organic foods or food supplements, or an avoidance of certain substances such as red meat or alcohol. Their rationale for such choices ranged from a general sense of wanting to control their nutrition to the extent possible to more specific observations about the effects of certain ingested substances on their mood or physical energy level.

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In contrast, for persons with diabetes, highly regimented and restrictive food guidelines were an explicit focus of medical management of their disease. Because of this, their self-care decision making revolved around such factors as adhering religiously to recommendations or cheating when they did not follow the prescribed regimen. Calculated cheating, in lieu of appropriate nutrition, was most often used concomitantly with the balancing factors of medication management and exercise to foster attainment or maintenance of a reasonable blood glucose level. Although nutrition in the more general sense was rarely a focus of their healthy lifestyle choices, many of the persons with diabetes in this study demonstrated a strong commitment to regular exercise as a lifestyle strategy for chronic illness self-care management. Although maintaining physical strength was important among persons with MS or HIV/AIDS in these studies, fewer translated that into a regular exercise or training routine. Another aspect of lifestyle choices related to sexuality. Healthy sexual practices were of particular concern to persons with HIV/AIDS, especially measures to avoid transmitting the disease to others. The impact of urinary incontinence in MS and impotence in diabetes clearly inhibited sexual expression for some persons; however, these were rarely articulated in the context of everyday self-care decision making. Some additional lifestyle factors that were included within the conceptualization of a healthy lifestyle for some of these persons included decisions related to smoking, stress management, pacing of activities, and extensive planning to ensure sufficient energy and supports for anticipated meaningful events. Many, especially those with HIV/AIDS, also believed that it was important to maintain a wellness, rather than a sickness, perspective, and they deliberately spoke about self-care decision making in relation to what was healthy in their lives rather than what was sick. Despite this commitment to healthy lifestyle practices, all participants described conscious decisions to ignore or violate them at times to make room for a valued activity. For example, people with diabetes chose to eat more than usual on special occasions, such as their birthdays. People with MS chose to push through their fatigue rather than rest because they did not want to miss a particular social event. These occasional unhealthy choices were articulated not as regular self-care practices but as essential elements in living a meaningful life or ways of maintaining your sanity.

Managing Treatment
The study participants fully appreciated that control over self-care management included an active component of decision making in relation to prescribed treatments and protocols. Persons with diabetes, for example, described an almost linear progression from passive compliance with prescribed regimens to taking personal control of the manner in which treatment recommendations were carried out (for more details, see Paterson & Thorne, 2000b). Persons with HIV/AIDS described periods of rebellion against recommended protocols and credited these rebellions as helping them define the parameters of authority and the consequences of their decisions. Because MS was much less characterized by recommended treatments, persons with that disease were more likely to seek treatment than to rebel against it and correspondingly felt considerably more freedom to accept or reject medical advice in that regard.

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Self-care decisions related to treatment management commonly included those associated with the dosage and timing of medication and beginning or ending a medication regimen. For example, most people in the study had changed the amount and timing of medication that was prescribed because the prescribed regimen interfered with what they wanted to do or how they preferred to live their lives. Despite a general resistance to the idea from their health care providers, many individuals had experimented with alternative approaches, such as herbs, supplements, and body therapies. Although individuals with each of these diseases reported such practices, those with HIV/AIDS and MS used them more frequently and regularly than did those with diabetes. Another aspect of self-care related to managing their treatment involved decisions associated with obtaining and interpreting information. Although such information tended to be relevant to those with diabetes and MS in the initial phases and when new treatments or theories were made public, the HIV/AIDS group much more regularly used information technology to keep abreast of the constantly changing information in relation to their disease. They often felt that health care professionals cant possibly keep up with all thats happening in the field and saw themselves as an important source of new information for the professionals.

Managing Health Care

Although all participants believed that they had a right and need to participate in decisions about their treatment plan, the degree to which they thought such decisions ought to be made independently varied according to their beliefs about the role of health care professionals. Most individuals with diabetes found that their physicians were generally not well informed about the real-life of living with diabetes and tended to give impractical, textbook-derived advice. Where they could locate a specialist physician or a diabetes nurse educator who was sympathetic to real life, they were more likely to accept the advice. Participants with MS generally obtained little practical advice from health care professionals and so tended to see them as less relevant to the business of making decisions. Instead, if they could identify competent self-care experts, they were likely to solicit their opinions. The participants with HIV/AIDS were more likely than other participants to actively seek competent professional expertise with regard to specific aspects of their care. For example, they might use pharmacists for advice about medications, assuming physicians would be unlikely to know enough about the complex and ever-changing medication regimen in their disease. In all instances, these carefully negotiated contexts in which they engaged with professionals to inform their self-care decision making required skillful management of health care relationships to retain the good will of professionals regardless of their adherence to the advice.

Envisioning Futures
Self-care management for persons with these diseases involved making everyday decisions in the context of their assumptions about what the future might bring. Each disease was characterized by distinct events that marked important progressions or thresholds. For persons with MS, having to abandon careers, accept mobil-

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ity aids, or give up driving were examples of events that were understood to represent significant disease progression rather than merely functional accommodation. They tended to become instances in which everyday self-care decision making was highly problematic and emotionally charged. For persons with HIV/AIDS, a militant vigilance toward nutrition and wellness might indicate the presumption that a cure might be found. Once the disease progression was sufficient that the individual believed that his or her time might be limited, satisfaction and comfort might take priority over rigid adherence to a self-imposed healthy living regimen. For persons with diabetes, the advent of early signs of a potentially serious complication, such as neuropathy or retinopathy, was often the specific motivator for a radical reorientation to the critical importance of everyday self-care activities. Thus, for persons with each disease, assumptions about the future could powerfully influence the priorities and focus of everyday self-care decision making. In this way, the envisioned future became intricately interwoven with fine-tuning the bases for selfcare decision making.

Evaluating: Quality Measures for Self-Care Decision Making

Learning and fine-tuning self-care practices requires criteria against which to evaluate their effectiveness. On an everyday basis and over the course of the disease, persons with all of these diseases developed, refined, and modified the decisions that they made in relation to standards that made sense for their lives and their particular disease responses.

Using Experts and Biomarkers

Particularly for those with diabetes, objective external measures provided a mechanism by which to obtain immediate feedback about self-care practices. In contrast to the general assumption that glucometers would be used primarily to determine medication dosages, we found that most people used them as a device to doublecheck their perceptions about bodily cues, responses to self-care strategies, or modifications in their protocol to accommodate special occasions. Although laboratory tests and biomarkers provided an alternative window on what was happening with the body, persons with all diseases came to consider them as adjuncts to the real measures, which were unique to the individual and what he or she had learned about his or her particular disease manifestations. Professional experts were considered a valuable asset to self-care decision making when they were able to acknowledge respectfully the persons experiential expertise and judgment, and where they had a genuine interest in the business of everyday self-care decision making. Professionals were seen as having access to a different set of resources and standards against which to judge aspects of illness progression and, in ideal circumstances, could advise their patients on new developments in disease management, the meaning of new signs and symptoms, and objective interpretations of disease cues. Thus, both professional experts and objective measures played a role in self-care decision making as it evolved over time.

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Creating Individualized Standards

For persons with each of these diseases, standards unique to the individual in context became a critically important aspect of evaluating the quality of self-care decisions. For some individuals with type 1 diabetes, for example, effective selfcare management could be measured in terms of the frequency of hypoglycemic episodes; for others, it might be best exemplified by steadiness in golf swing or attentiveness during business meetings. Although many of the individual examples were clearly unique and specific, their relevance was well recognized by others with the same disease when they discussed such matters during the focus group sessions. For example, all of the persons with MS recognized a highly structured and complex planning and evaluating function as critical to managing fatigue levels and participating in meaningful activities. For persons with HIV/AIDS, individualized standards often included such abstract but meaningful indicators as spiritual well-being, physical comfort, and optimistic attitude. The images and metaphors by which people described these sometimes differed, but the fundamental principles were easily recognizable by those with similar illness experiences. Using different somatic, behavioral, or functional indices of control over the effects of their disease, all of these people acknowledged evaluative processes that operated constantly within their daily routines and influenced their decisions and actions. Because the body, mind, and spirit were understood as inherently interactive, they could take on equal importance in generating individualized standards against which to measure the quality of self-care decisions.

Theorizing Complexity
Because self-care decision making in the case of each of these diseases involves complex processes of redefining what is meaningful in life, balancing the expectations of professional health care experts against their own intuitive sense of what makes a difference and their own learned rules of thumb about the efficacy of self-care decisions, all participants acknowledged coming to recognize that self-care decision making is a highly complex, unpredictable, and mysterious business. Although assuming active control of their self-care management was necessary to living well with a chronic disease, it was never sufficient to ensure that the effects of the disease would be controlled perfectly. Despite their best efforts, as one man with HIV/AIDS explained, Weird things happen and you have nothing to do with it. Chronic diseases do not happen outside of the context of complex human lives. Because of this, the indicators of effectiveness in relation to self-care decisions must be considered in the context of disease progression, cumulative treatment effects, and the subtle influences of such by-products of living as aging and stress. For every self-care action that might seem simple and straightforward from a textbook point of view, there is a life within which that action must be evaluated. Will it exacerbate negative self-talk, complicate social encounters, or produce a more toxic environment within the body? Will it reduce confidence or take energy away from other self-care practices? Will it create the demoralizing feeling that the disease has become the master of the life? For persons with these chronic diseases, there was recognition that although healthful living and thoughtful attention to treatment recommendations was valuable, life still required spontaneity, fun, pleasure, and

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freedom for it to be lived to the highest quality. Thus, self-care decision making required balancing the demands of many masters in such a manner that it was difficult to explain with any precision what expertise might really entail.

DISCUSSION: REFRAMING EXPERT SELF-CARE DECISION MAKING

The nature of self-care decision making in chronic illness is such that it is difficult to describe, predict, or understand. The findings of this secondary analysis strongly suggest that it is so intricately bound to the living of a life in all of its complexity and fullness that there might be few truly universal or generalizable features within it. However, despite the individual variations that are apparent, it seems feasible and reasonable to begin to articulate common themes and patterns, if only to orient our professional attention toward the ways in which they might be manifested within individually constructed lives. The participants in these studies all seemed to value some attributes of self-care decision making that might well have contributed to the expertise that they were believed to have attained, at least in the perspective of those experienced professionals who nominated them for participation in these studies. Such qualities might include perseverance and discipline; the ability to accept imperfection and ambiguity; the ability to reframe adversity into opportunity; confidence in ones own ability to make responsible judgments; meaningful work, relationships, or activities; the ability to sustain the spiritual or emotional self; and sufficient economic and social resources to enact the decisions one makes. On the basis of those characteristics, persons with chronic illness describe a complex set of intellectual processes inherent in expert self-care decision making. These include such features as determining the immediacy and urgency of health related situations, and considering their probable causes; contrasting data derived from bodily cues with prototypic and individualized patterns of body responses; thoroughly canvassing alternative courses of action, considering the consequences and implications of the various available options; and accurately predicting the consequences of self-care decisions. To do this, persons with chronic diseases become skilled at anticipating when difficulties in self-care management might occur in the immediate and long-term, and learn to change self-management practices or protocols to integrate new insights about their own bodys responses to events, situations, or interventions. They formulate judgments related to seeking help or advice when appropriate and evaluating the decisions that are taken based on a creative combination of individually determined as well as standardized criteria. Thus, self-care decision making is depicted by individuals with these chronic diseases as a complex developmental process that takes place within the context of a disease trajectory, a health care culture, and a uniquely meaningful life. It involves assuming control of self-care management, fine-tuning the bases on which self-care decisions should be made, and coming to a complex understanding of how to judge the quality of these decisions in light of meaningful outcomes. As articulated by the participants in these studies, self-care decision making in chronic illness reveals both common and disease-specific features. It requires a conscious decision to engage in controlling the course of life with a chronic disease to the extent possible.

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Through processes of trial and error, monitoring and evaluating, self-care decision making evolves to become rapid and subconscious in the context of the everyday and familiar, reverting to a much more thoughtful and deliberative pattern in unfamiliar contexts, new manifestations, or changes in the course of disease. From this experiential perspective, effective self-care decision making is to some degree influenced by professional treatment recommendations but is incompatible with the notion of passive compliance. Expert self-care decision makers across diseases fiddle with and adjust routines, dosages, and recommendations according to an individualized and finely tuned sense of what matters in life with and beyond the disease. The specific focus of relevant decisions and the points of tension between standardized advice and individualized choices reflect considerable variation between the disease categories, such that the details of what decisions, when and how seem quite recognizable to all within a particular disease category but might be relatively unfamiliar to those with a different disease. Because of this, although disease-specific self-care decision making practices will continue to be of interest to researchers, it will be important to ensure that the full range of factors that shapes this phenomenon remains open to investigation. The individualized rules of thumb described by these expert self-care decision makers with chronic illness reflect somewhat different priorities and principles than are available in textbook prescriptions and recommendations. From our perspective, it seems evident that the experiential expert remains a largely untapped resource with regard to such insights, and it would appear that disease-specific documentation of patterns within the physiological cues, response patterns, and flexibility ranges might be of tremendous value in reframing our textbook knowledge to reflect not simply what we think people ought to do but what effective self-care managers actually do. As Beck, sociologist, career trainer, and longtime chronic disease sufferer, has written,
I spend most of my days teaching my clients that their bodies are probably their most reliable source of wisdom. This is the conclusion I have reached after endless skirmishes, engagements, ambushes, and (inevitably) losses. But its hard to walk my talk when my body rebels. I go through an awful, familiar process, a process that takes me from being my bodys enemy to its grudging ally, and finally its grateful disciple. (Beck, 2000)

CONCLUSION
This research has resulted in a more explicit understanding of the structure of everyday self-care decision making experiences in chronic illness. It has permitted a glimpse into some of the aspects that seem common across chronic conditions as well as those that are more disease specific. Conceptualizing self-care decision making as something far more complex than simply learning and complying with therapeutic recommendations, our interpretations acknowledge the practical, authoritative knowledge that people with chronic illness can develop in living with the disease over time. They explain the manner in which people with chronic illness come to rely heavily on a knowledge and skill base founded on personal experience with the disease within the context of their unique lives rather than standardized knowledge alone. In so doing, we hope to expand dialogue toward future research

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in which investigators might more effectively capitalize on comparisons across conditions to develop a more finely tuned understanding of the challenge for providing services and supports to persons affected by chronic disease.

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Sally Thorne, R.N., Ph.D., is a professor of nursing at the University of British Columbia, Vancouver, Canada. Barbara Paterson, R.N., Ph.D., is a professor of nursing at the University of British Columbia, Vancouver, Canada. Cynthia Russell, R.N., Ph.D., is an associate professor of nursing at the University of Tennessee Health Science Center, Memphis.

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