N U R SI N G T H E O R Y A N D C O N C E PT D E V E L O P M E N T O R A N A L Y SI S

Critical analysis of everyday self-care decision making in chronic illness

Barbara L. Paterson PhD RN
Associate Professor, University of British Columbia School of Nursing, Vancouver, British Columbia, Canada

Cynthia Russell PhD RN

Associate Professor, University of Tennessee, College of Nursing, Memphis, Tennessee, USA

and Sally Thorne PhD RN

Professor, University of British Columbia School of Nursing, Vancouver, British Columbia, Canada

Submitted for publication 18 September 2000

Accepted for publication 20 April 2001

Correspondence: P A T E R S O N B .L ., R U S S E L L C . & T H O R N E S . ( 2 0 0 1 )
Journal of Advanced
Barbara Paterson, Nursing 35(3), 335±341
University of British Columbia School Critical analysis of everyday self-care decision making in chronic illness
of Nursing,
Aims of the paper. The purpose of the paper is to (1) identify prevalent assumptions
T201-2211 Wesbrook Mall,
that underlie the traditional conceptualization of everyday self-care decision making
Vancouver,
British Columbia, and (2) contrast these with the ®ndings of relevant research.
Canada V6T 2B5. Background/Rationale. Current understandings of self-care decision making in
E-mail: paterson@nursing.ubc.ca chronic illness tend to be extrapolated from knowledge gained in relation to one-
time decisions, or decision making in contexts that are only super®cially related to
the complexity and pervasiveness of living with a chronic disease.
Findings. The authors challenge the assumptions with which current understand-
ings represent self-care decision making in chronic illness, using evidence from their
research on what it is like to live with and manage the implications of having a
chronic disease on an everyday basis.
Conclusions. The paper concludes with a call for a new conceptualization of self-
care decision making in chronic illness which suf®ciently addresses the unique and
complex nature of such decisions.

Keywords: chronic illness, self-care, decision making, quality of life, concept

analysis

conceptualization of everyday self-care decision making has

Introduction
contributed to the contradictory and misleading formulations
Much of what we currently understand as the determinants, of everyday self-care decision making that have shaped the
goals and outcomes of everyday self-care decision making in practitioners' understanding of everyday self-care to date
chronic illness, decisions such as whether to eat an extra piece (Ragins 1995).
of cake or decline social invitations, has been in¯uenced by The purpose of the following paper is to: (1) identify
other ®elds of inquiry that have limited applicability to prevalent assumptions that underlie the traditional concep-
everyday self-care management. The assumptions guiding tualization of everyday self-care decision making, and (2)
much research regarding everyday self-care decision making contrast these with the ®ndings of relevant research. Our
in chronic illness are similar to those that underlie research analysis will be informed by ®ndings of research conducted
conducted for other purposes, such as decision making by by others, as well as by our investigations of self-care in
practitioners (Lachman 1996). Consequently, the traditional diseases such as chronic heart failure, diabetes, multiple

Ó 2001 Blackwell Science Ltd 335

B.L. Paterson et al.

sclerosis and human immunode®ciency virus/acquired wane with a number of factors, including length of time since
immune de®ciency syndrome (HIV/AIDS) (Russell 1996, diagnosis, disease severity, past and present life experiences,
Russell et al. 1998, Paterson et al. 1999, Paterson & Thorne values and culture (Armstrong 1990, Cahill 1996). Nyhlin
2000, Thorne & Paterson 2000, Thorne et al. 2000). (1990) determined that developmental events, such as preg-
nancy and crises, such as the onset of new symptoms, caused
some people with diabetes to avoid making self-care decisions
The contributions of other bodies of inquiry
and to depend instead on advice from practitioners. Likewise,
There are four main bodies of inquiry that have contributed Gibson et al. (1995) determined that people with asthma
to what we now understand about everyday self-care in chose to give the responsibility for disease management to
chronic illness: one-time decision making, compliance with professionals at times of crisis, although they preferred to be
prescribed regimes, patient participation in decisions with actively involved in times in which their asthma was in
practitioners, and practitioners' clinical decision making. remission.
Although each of these has some application to everyday self-
care decision making, the relevance is at best obscure and the
Research about compliance/noncompliance
unquestioned application of research ®ndings in these areas
to everyday self-care decision making is problematic. A common assumption among researchers is that everyday
self-care decisions are successful only if they are congruent
with the advice of practitioners, that is if the person complies
One-time decision making research
with the prescribed regime of disease management. Many
A great deal of what we now understand as everyday self-care researchers have emphasized the determinants of compliance
decision making has arisen from the body of research about to prescribed regimes, rather than on the processes of
major one-time decisions in chronic illness, such as whether everyday self-care management (Lukkarinen & Hentinen
to go on peritoneal or haemodialysis. It is not clear, however, 1997). The body of research about compliance in chronic
how ®ndings about a `narrowly bounded, discrete problem- illness contains almost no studies that consider the patients'
solving' task (Nardi 1983, p. 701), such as deciding whether perspectives about this issue and few that suggest that advice
to have surgery or radiation for cancer, relate to everyday offered by practitioners may not always be appropriate
self-care decisions in chronic illness that are often complex, (Donovan 1995).
overlapping, and constantly changing (Bekker et al. 1999). Although a common supposition has been that noncom-
Research about one-time decisions has focused largely on pliance is a problem arising from a failure or fault of the
rational choices and relied mainly on retrospective accounts patient (Thorne 1999), this view has been challenged by the
of decision makers who present their decision making as ®ndings of some researchers. These researchers contend that
linear and utilitarian (Good 1994, Garro 1998). It is there may be many reasons why people engage or do not
commonly presumed that people with chronic illness discern engage in self-care decision making that have little to do
what is necessary to achieve a self-care goal and then make a with the desire to comply with prescribed regime. Taking a
decision to do whatever is necessary to achieve it (Hollen & course of action that differs from the treatments or inter-
Hobbie 1993). This is best illustrated in many self-care ventions recommended by professionals may re¯ect a choice
education programmes in which it is assumed that if people that better suits individuals' needs, desires or goals
know why and how they should make effective self-care (Donovan 1995, Paterson et al. 1999, Paterson & Thorne
decisions, they will do so (Anderson 1995). However, it is 2000). Many people with long-standing chronic disease have
well-known that people do not always make everyday self- learned highly attuned and individualized approaches in
care decisions in a rational or practical way and there are managing their illness through considerable experimentation
many factors that determine their choices, particularly the and testing for variations in body response (Paterson &
meaning they ascribe to the process and to the decision Thorne 2000). They have learned to know and respect that
(Weller et al. 1997, Hunt et al. 1998). their body responses to situations and treatments are unique
Another contribution of one-time decision making research and cannot be interpreted by universal norms or `textbook
is that everyday self-care decision making is often presented cases'. They have experienced a shift in thinking about
as static. It is commonly presumed that once people decide to themselves as `patient' to viewing themselves as owner of
manage their disease, they will do so at all times and in a their body, acknowledging that they are the experts in what
consistent manner. The ability and desire to be actively works best for them. Consequently, the idea of unquestioned
involved in self-care decisions has been shown to wax and adherence to recommended treatments and standardized

336 Ó 2001 Blackwell Science Ltd, Journal of Advanced Nursing, 35(3), 335±341
Nursing theory and concept development or analysis Self-care decision making in chronic illness

interventions is viewed as inconsistent with this philosoph- is often the result of a decision to attend to a personal
ical stance. priority. We have found that people often chose to avoid
An argument that has been made frequently in the medication that altered their preferred way of being or placed
literature is that people with chronic illness do not have themselves or others at risk. For example, the man with AIDS
access to medical protocols that are appropriate for speci®c who did not take medication that had positively affected his
situations and, therefore they cannot make decisions about viral load because of side-effects that caused him to sleep
self-care without a prescribed regime to follow (Rheiner excessively, or the man with diabetes who tested his blood
1995). However, in many cases, everyday self-care practices glucose only every second day because he could not afford the
involve decisions that are not informed by the prescribed cost of glucometer strips.
regime. For example, a man with diabetes may choose to A common assumption underlying compliance literature is
drink several glasses of wine, despite the advice of the doctor that practitioners always diagnose and prescribe appropri-
to avoid alcohol, because it is his birthday, he has eaten ately despite evidence to indicate otherwise (Rudd et al.
birthday cake and a large meal, and he knows from past 1992). Participants in research studies have shared narratives
experience that the effects of alcohol on blood glucose can be in which compliance to prescribed regimes negatively affected
mediated by eating more than usual. their well-being, often resulting in further symptoms or
The focus on compliance in self-care decision making disease-related problems (Paterson & Sloan 1994, Paterson
literature has been propagated by the myth that compliance is & Thorne 2000). Noncompliance based on the knowledge of
necessary to ensure that the person with chronic illness will one's unique patterns and responses can re¯ect a highly
experience few, if any, untoward symptoms or disease-related effective self-care strategy. People with hypertension in one
complications. Consequently, untoward symptoms or physio- study conducted experiments with their prescribed medica-
logical indicators that deviate from the healthy norm are tions that they did not disclose to their physicians (Steiner
often viewed by health care practitioners as indicative of et al. 1991). They determined that they were able to establish
noncompliance (Wikblad 1991). In addition, there is a good control of blood pressure and experience fewer side-
tendency among some health care professionals to blame effects with smaller than prescribed dosages.
those with chronic illness for the symptoms they experience
(Madsen 1992). In diabetes research, for example, individuals Patient participation research
have reported being accused of cheating by professionals and There has been an increasing emphasis in the past two
being labelled as noncompliant because their blood glucose decades on the need for active involvement of people with
levels were abnormal, despite the fact that glycaemic control chronic illness in decisions about their disease management
is affected by a multitude of factors, including many that (Thorne & Paterson 1998). This in turn has given rise to a
cannot be controlled by the individual (Paterson & Sloan body of inquiry regarding how patients with chronic illness
1994). Participants with chronic illness in many research can be encouraged to participate in decisions with health care
studies (Nyhlin 1990, Wikblad 1991, Thorne 1993, Paterson professionals about their disease management. A great deal of
& Sloan 1994, Paterson et al. 1999) admitted that they lied research in this area has focused on improving the relation-
to practitioners because they knew that practitioners would ships between patients and their health care providers (e.g.
disprove of their alterations to the prescribed regime. From Stevenson et al. 2000) or the communication between
their perspective, these alterations were based on sophisti- patients and practitioners (e.g. Wine®eld & Chur-Hansen
cated self-knowledge and experience with the disease and 2000). A shift to decision making in which both the patient
they were able to maintain a desired quality of life and and practitioner share in the decisions about disease manage-
appropriate physiological outcomes because of them. ment has been presented by some authors as the solution to
A majority of researchers has de®ned noncompliance as the noncompliance (Bond & Hussar 1991, DiMatteo 1994).
patient's failure to follow prescribed regimes because of Although people with chronic illness are often encouraged to
ignorance or irresponsibility (Donovan 1995). People with provide input into decisions about disease management, they
chronic illness do not neatly distinguish the everyday deci- are generally expected to comply with those decisions in their
sions they make about their disease and its treatment from self-care, limiting their autonomy in self-care to compliance
the affective, social and physical context of their lives (Donovan 1995).
(Paterson & Sloan 1994). This is a signi®cant consideration Patient participation in disease management decisions has
in discussions of the rationality of self-care practices in been framed within an ideology in which it is assumed that
chronic illness. What may at ®rst appear to be an irrational active involvement is desired by all people with chronic
self-care practice, such as disregarding a practitioner's advice, illness and that participation promotes a commitment to

Ó 2001 Blackwell Science Ltd, Journal of Advanced Nursing, 35(3), 335±341 337
B.L. Paterson et al.

everyday self-care management and appropriate self-care role in decision making may be overcompensating by
practices. Although discussions of patient participation typic- becoming overly focused on the disease (Carr 1990).
ally centre around a patient±practitioner interaction about a The issue of involvement in self-care decision making is
general treatment plan rather than everyday life, these complicated by a lack of clarity in the present research about
assumptions have been translated to the arena of everyday the patterns of involvement that exist and are desirable or
self-care. For example, successful self-care is now regularly that effect speci®c outcomes. Researchers have indicated that
described as active, autonomous, with a commitment to preferences for involvement in one-time decisions, such a the
wellness. It is unknown, however, whether people who selection of treatment options, vary along a continuum from
assume active involvement in decisions with physicians also passive to active, with various degrees of passivity±activity
assume active involvement in everyday self-care decision along the continuum (Degner & Sloan 1992). In the self-care
making. It is also unclear whether such people are actively literature, however, individuals are generally considered to be
involved in everyday self-care decision making (O'Connor either passive or active with no variations of involvement
1998). People with chronic illness who choose to rely other than these extremes. There is a general assumption
unquestioningly on the advice of practitioners are frequently among authors in this ®eld that individuals retain their
viewed from the patient participation perspective as prob- preferred style of involvement in all self-care situations at all
lematic, suffering from a self-care de®cit or irresponsible times. Although some have proposed that active involvement
(Donovan 1995). in disease management decisions is a precursor to effective
There are a multitude of personal and cultural factors that self-care (e.g. Oram 1992, Jayne 1993), it appears from the
make passivity or adherence to prescribed regimes the ®ndings of others that preferences for involvement may vary
preferred way of managing one's illness. For example, among individuals and change with circumstances and over
Anderson et al. (1991) indicate that Chinese immigrants' time (Paterson & Thorne 2000).
reluctance to appear ungrateful or superior to health care
practitioners resulted in their lack of questioning and input in Decision making of practitioners
interactions with Canadian physicians. There are also some Beyond the research directed towards understanding one-
factors that relate to the stage and situation in which people time decisions, compliance and patient participation in
with chronic illness are in, that determines their willingness decision making, there is also a major body of research in
and ability to engage in active decision making with practi- self-care that re¯ects investigations of decision making by
tioners. Just as it may be important to follow an established practitioners. Researchers who have been in¯uenced by
routine at the beginning of a weight loss programme until the practitioner decision making research tend to focus either
diet becomes routine, people who are newly diagnosed with on the use of evidence to support a hypothesis (Luker et al.
chronic illness often report that they ®nd it helpful to learn 1998) or intuitive knowledge gained from experience (Benner
the textbook picture of disease management by complying et al. 1994). These researchers attempt to differentiate
with prescribed regimes. In this stage, newly diagnosed between novice and expert self-care managers, although the
individuals crave for structure and rules (Paterson et al. criteria to determine expertise in everyday self-care are often
1999). vague. Novice practitioners generate multiple hypotheses to
Investigations to date suggest that the desire and ability to discern the nature of a problem because they do not have the
participate in decisions about disease management is medi- requisite knowledge and experience to readily determine
ated by a number of contextual factors of which ethnicity is what is happening and what course of action is required
only one. Hjelm et al. (1999), for example, demonstrated (Benner et al. 1994). Expert practitioners are able to more
that recent immigrants from war-torn Yugoslavia were accurately diagnose the cause of problems and to develop
generally content to be passive about disease management superior solutions for problems (Woolery 1990). However,
decisions because they had learned to expend energies on the degree to which ®ndings associated with the decision
adapting to a new country, not on self-care management. making of practitioners are applicable to everyday self-care in
Other researchers have speci®cally challenged the assumption chronic illness is unknown. For example, we know little
that people should and can assume an active role in diabetes about how the self-care decision making of experts compares
self-care because (1) not all people have the knowledge and with that of people who are nonexpert and those who are
experience to make appropriate decisions (Paterson et al. developing expertise (Ellison & Rayman 1998).
1998), (2) people may alter their decision to assume control In accordance with the ®ndings of research regarding
when life events or circumstances intervene (Wikblad & decision making by practitioners, everyday self-care in
Montin 1992), and (3) some people who assume an active chronic illness has generally been described as involving

338 Ó 2001 Blackwell Science Ltd, Journal of Advanced Nursing, 35(3), 335±341
Nursing theory and concept development or analysis Self-care decision making in chronic illness

hypothetico-deductive reasoning. This entails experiencing a recommended doses may result in dangerous viral load
cue, searching for a hypothesis to explain it, and attempting responses. However, persons with multiple sclerosis may
to validate the hypothesis. Cues to trigger everyday self-care make alterations to their medications based on personal
decision making are generally identi®ed by researchers as preference without such concerns.
distressing illness-related symptoms, such as the tremulous- Similarly to clinical decision making, expertise in everyday
ness of hypoglycaemia in diabetes (Cox et al. 1993). self-care decision making is generally assumed to evolve
However, in chronic illness, cues to self-care decisions may with experience. Most researchers have concluded that
be unrelated to the illness (e.g. humid weather may indicate experience in living with the disease is critical to the
the need to alter activity in multiple sclerosis). People with development of expert self-care. Several researchers have
chronic illness often learn to minimize or see as `normal' found that becoming an expert is a developmental process
persistent symptoms. Brown et al. (1998), for example, that occurs as one lives with the disease over time (Jayne
determined that more than 50% of their sample with type 1993, Paterson & Sloan 1994, Ellison & Rayman 1998).
2 diabetes did not respond to symptoms. Some with chronic Although most authors presume that experience is critical to
illness can become less attentive to symptoms over time and becoming an expert in self-care, they do not articulate the
with pathological changes. Others with uncomfortable symp- speci®c contribution of experience to expertise. Nor do they
toms, such as nausea, may learn to transcend the experience consider why some people with chronic illness are unable to
of symptoms by meditation and spiritual strategies (Rawnsley develop expertise in self-care decision making or others are
1994, Predeger 1996). unable to sustain effective self-management strategies over
Many who write about everyday self-care, as in the ®eld of time.
clinical decision making by practitioners, have assumed that
expertise is constant, occurring in all situations and at all
Discussion
times. There is some evidence to the contrary, even in the ®eld
of clinical decision making. For example, practitioners who The following assumptions, derived from the four bodies of
face unfamiliar circumstances are probable to use complex inquiry identi®ed previously, appear to undergird the concep-
decision making processes and to have less con®dence in their tualization of everyday self-care decision making to date.
decisions (Kaempf et al. 1996). In our research (Paterson & First, people with chronic illness who are actively involved in
Thorne 2000), we discovered that expert self-care managers self-care decision making are able to achieve and sustain
may make self-care decisions that are typical of a nonexpert, symptom control and positive physiological indicators but
particularly in unfamiliar situations or in situations when people who are passive or who are not involved in disease
they are stressed, tired, or pressured to arrive at a decision in management decisions do not achieve these outcomes.
a short period of time. Secondly, everyday self-care decision making is a rational
Longitudinal designs are not common in the investigation process that entails a pattern of decision making that is linear,
of self-care decision making but, in our longitudinal utilitarian, consistent, and generic to all chronic diseases.
research, we have observed that people with chronic illness Thirdly, the need to alleviate symptoms and to comply with
change in their ability to assess and respond to situations as prescribed regimes is the primary impetus to everyday self-
they learn their body's patterns of response to interventions care. Lastly, experience with the disease is directly related to
and situations over time (Paterson & Thorne 2000). We expert self-care decision making and the commitment to
have also found that the context of a decision and the being actively involved in disease management decisions.
person's perception of risk in¯uences the decisions they The conceptualization of everyday self-care decision
make. As expertise is often assumed in the clinical decision making to date has had many untoward outcomes, including
making literature to be constant in all situations, there is a health care practitioners blaming the person with the disease
common understanding of self-care decision making as for their symptoms and disease-related problems (Pinder
generic across chronic diseases. Consequently, researchers 1995). It is apparent in a review of related research that it has
often study self-care decision making in participants who muddied more than it has clari®ed everyday self-care decision
have a variety of chronic diseases, assuming that the decision making. Therefore, it is timely to suggest new, more relevant
making process is similar across these diseases, despite the ways of conceptualizing and actualizing everyday self-care
disease-speci®c factors that in¯uence self-care decisions in decision making in chronic illness. Garro (1998) calls for an
many chronic illnesses. Persons with AIDS, for example, alternate understanding in which it is acknowledged that
need to rigorously adhere to precise dose schedules of decision making is grounded in the personal and social
antiretroviral drugs as even one missed dose or lower than context of people's lives, an approach which extends current

Ó 2001 Blackwell Science Ltd, Journal of Advanced Nursing, 35(3), 335±341 339
B.L. Paterson et al.

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