Patient Education and Counseling 42 (2001) 81–90

www.elsevier.com / locate / pateducou

Health care professional support for self-care management in

chronic illness: insights from diabetes research

Sally E. Thorne*, Barbara L. Paterson

University of British Columbia School of Nursing, T201 – 2211 Wesbrook Mall, Vancouver, BC, Canada V6 T 2 B5

Received 15 July 1999; received in revised form 21 January 2000; accepted 25 January 2000

Abstract

While it has long been recognized that health care professionals play an important role in supporting self-care management
in chronic illness, the nature of that support is not well understood. This paper represents an analysis of findings drawn from
qualitative research into the development of self-care decision-making expertise in adults with longstanding Type I diabetes,
specifically addressing ways in which health professionals’ interactions support or fail to support such processes. These
findings highlight issues associated with the disease trajectory, the assumptions about intended outcome, and the complex
contexts in which individuals live with chronic disease, illustrating the manner in which varying kinds of support may be
required at different points within the learning process. They further challenge notions of standardized communication and
informational strategies, demonstrating the complexities inherent in the support needs of chronically ill persons as they
change over time and context.  2001 Elsevier Science Ireland Ltd. All rights reserved.

Keywords: Self-care; Support; Patient education; Self-management; Chronic illness

1. Issues of support in self-care management of
chronic illness
Although support has been generally acknowl-
edged as a critical factor in adapting to and coping
with chronic illness, the mechanisms by which it
influences the chronic illness experience are not at all
well understood [1–3]. The majority of the research
has been directed toward an understanding of sup-
*Corresponding author. Tel.: 1 1-604-822-7482; fax: 1 1-604-
822-7466.
E-mail address: thorne@nursing.ubc.ca (S.E. Thorne).
portive functions within the chronically ill person’s
interpersonal networks, and has assumed that the
health care professional may play a facilitative role
in mobilizing or educating members of such net-
works [4,5]. Direct support from health care profes-
sionals toward their patients is rarely considered by
researchers to be among the important elements of
effective support; where it is acknowledged, its
contributions are often confused with the more
general notion of ‘social support’ [6,7].
Where support from professionals to patients has
been studied, it has been considered relevant primari-
ly in the informational domain [7,8]. Emotional /

0738-3991 / 01 / $ – see front matter  2001 Elsevier Science Ireland Ltd. All rights reserved.
PII: S0738-3991( 00 )00095-1
82 S.E. Thorne, B.L. Paterson / Patient Education and Counseling 42 (2001) 81 – 90
expressive support from professionals is usually
understood as limited to respectful communication
and trust building [9]. Practical / instrumental support
is presumed to be confined to access to services and
resources for which the professional acts as
gatekeeper. However, a number of studies have
suggested that professional support may be a power-
ful factor influencing emotional distress associated
with chronic illness, compliance with recommended
treatment protocols, and general health-promoting
behaviors [10–14]. Consequently, little has been
agreed upon with regard to the nature of the differ-
ence that supportive health care professional relation-
ships might make or the elements of a professional–
patient relationship that would be perceived as
supportive [15].
Self-care management (also variously referred to
as self care or self management) refers to the full
range of activities that persons with chronic illness
may engage in to promote their health, augment their
physical, social or emotional resources, and prevent
adverse sequelae from their disease [16,17]. Al-
though it has been recognized as a critical linkage,
the explicit impact of health care professional sup-
port on self-care management in chronic illness has
attracted a relatively scant body of research. A
possible reason for this may be that self-care man-
agement has traditionally been considered a product
of certain characteristics and skills that the individual
brings to the illness situation, and not a consequence
of his or her social context [18,19]. Because of this,
the body of knowledge related to professional health
care roles in relation to self-care management has
generally been limited to the specific notion of
informational support. Within this body of writing, it
is commonly understood that the professional has the
expertise and the patient does not, and so the
appropriate role has been one of delivering expert
knowledge to the patient at a time and in a manner in
which it is most likely to be accepted and applied.
Much of the traditional approach to patient education
in diabetes, asthma, heart disease, and many other
chronic diseases follows this general model [20].
In the context of a traditional patient education
model, it is typically assumed that there is a linear
relationship between appropriate and accurate in-
formation imparted by the professional, a reasonably
trusting relationship between patient and practitioner,
and effective self-care management decisions on the
part of the patient [15]. Interestingly, while decision
making has proven quite difficult to study directly,
compliance with treatment recommendations has
generally been considered the most appropriate
proxy for detecting decision-making outcomes [21].
Of course compliance is considered good decision
making, and non-compliance is considered proble-
matic decision making [22].
Within this general framework of understanding,
the subtleties of support between professionals and
patients have not been the particular focus of much
research and are therefore not terribly well under-
stood. Beyond what has been examined in relation to
imparting information, the nuances of emotional
support in relationships between health care pro-
viders and their chronically ill patients have not been
systematically examined or reported. Interestingly,
although the subtle complexities of the emotionally
supportive patient–professional relationship are of
real interest to those who study illnesses categorized
as psychological, there has been relatively little
transfer of this interest to the domain of physical
illness experience.
In contrast, where researchers investigate the
experience of chronic physical illness from the
‘insider perspective’, using methods that access the
subjective understanding of those who live with
chronic disease [23–25], the findings consistently
point to the supportive function of health care
relationships, both positive and negative, as a critical
factor in the way the individual both adapts to and
manages his or her disease [15,26–28]. Beyond what
can be interpreted from quantifiable correlational
patterns within the data, qualitative inquiries can
provide a more intricate picture of how support
seems to operate over time in relationships between
chronically ill patients and the professionals from
whom they seek guidance. To illustrate, Schneider
and Conrad’s [29] classic study of persons with
epilepsy explained how health care relationships
characterized by a power differential between ‘ex-
pert’ professional and passive patient accentuated
distrust and lack of honesty within the interactions.
In such a power imbalance, support for self-care
decision making was therefore completely proble-
matic. Similarly, Wikblad [30] studied the percep-
tions of persons with diabetes regarding the in-
formation they received from professionals in rela-
tion to their self-care management. Wikblad learned
 S.E. Thorne, B.L. Paterson / Patient Education and Counseling 42 (2001) 81 – 90
that information in and of itself was not sufficient;
people also had to understand how to use that
information. A typical example might include such
instances as health care professionals giving infor-
mation about therapies to be used at home without
considering architectural, transportation, or financial
constraints that might preclude such a plan [31].
Insider research therefore provides a way of under-
standing how and why information and support
operate the way they do in the context of health care
relationships.
By extending the available frameworks for under-
standing self-care decision making, qualitative re-
search permits us to look beyond linear relationships
to the complexity of a phenomenon like support
within a challenge as multifaceted as chronic illness
[32]. It therefore creates a mechanism with the
potential to articulate some of the unique attributes
of support that may be necessary to maintain expert
self-management practices and achieve desired
health outcomes. From this type of inquiry, it
becomes possible to consider the health care relation-
ship as a principal context for understanding the
dynamics of evolving expertise in self-care decision
making in chronic illness. In this paper, we draw
upon a longitudinal study of expert self-care decision
making in Type I diabetes to illustrate the kinds of
insights about support mechanisms that become
possible when we apply such research strategies
toward this particular problem.
2. Background to the diabetes study
Our grounded theory study of expert self-care
decision making in Type I diabetes [33] followed
each of 22 nominated individuals over a 12-month
period. All participants had been diagnosed for at
least 15 years. Half (those studied during the first
year) were nominated by their specialist clinicians as
being expert in self-care management; the remainder
(followed during the second year of the study)
volunteered to participate on the basis of self-identi-
fication of expertise. Each was extensively inter-
viewed on several occasions throughout the year. In
addition, each agreed to participate in three ‘think-
aloud’ sessions over the course of that year in which
they reported all thoughts, decisions, and impressions
related to diabetes decision making into a hand-held
83
audiotape recorder as they went about their daily
activities for a 1-week period. Think-aloud is well
recognized as an appropriate method for document-
ing those aspects of decision making that are not
normally accessible to reflective thinking and con-
scious self-report and has been used successfully in
studies of clinical decision making among health
care practitioners [34,35]. The think-aloud periods
were planned to track seasonal and situational varia-
tions in self-care decision-making contexts for each
participant and across participants. Transcripts of the
think-aloud sessions formed the basis for structuring
subsequent interviews to extract as much depth and
detail about everyday decision making as was pos-
sible for these participants to bring to consciousness.
Each year was concluded with focus group sessions
in which participants shared impressions of the
experience with us (and each other) and were asked
to critique our developing analyses.
Data for this study were analyzed using constant
comparative methods [36–38]. Categorizations
emerging from the first year of the study were
applied to the developing conceptualization during
the second, and thematic analysis was constantly
checked against new data as well as the participants’
critical impressions of our theorizing. From this body
of data, we were able to develop a number of
understandings about such matters as the develop-
mental processes inherent in becoming expert at
self-care decision making, the intricacies of learning
how to live well with a complex chronic condition,
and the critical role that support from health care
providers could play in these processes. In this paper,
we present findings related to the supportive role of
health care professionals as it emerged throughout
the data, particularly highlighting those insights
which depart from the more common understandings
of support mechanisms that have emerged from the
literature.
3. Findings related to support
The social context in which Type I diabetes is
experienced was a prominent theme throughout the
interviews with these participants. Diabetes tends to
be an invisible chronic illness, in that those who live
with it conduct much of their self-care management
outside of the gaze of their co-workers and casual
84 S.E. Thorne, B.L. Paterson / Patient Education and Counseling 42 (2001) 81 – 90
acquaintances, who may remain unaware of the
presence of the disease. However, in that it also
interrupts and forces modifications in some of the
most socially visible functions, such as activity and
eating, most participants find that social support is a
tricky but crucial element in their development of
self-care management. From an instrumental per-
spective, there are serious consequences of both
hypo- and hyperglycemia that may involve specific
support from others, both in recognizing impending
crises and in the decision making around such
events. Thus finding and training supportive family
members and friends can become an important
strategy for living well with the disease.
The power and importance of support, not only
informational but also emotional and instrumental,
from health care professionals was apparent through-
out the accounts of participants as they articulated
and explained their past and current struggles to
become skilled at everyday self-care decision making
in the context of a complicated and challenging
disease such as Type I diabetes. Although health care
relationships were not an explicit focus of our
inquiry, all of the participants linked their process of
learning to become competent self-care managers
with the various supportive and not-so-supportive
interactions they had experienced with health care
providers along the way. In many instances, they
explicitly linked major turning points in their illness
trajectory to encounters with such professionals.
Their accounts of the influence of support from
health care professionals in the development of self-
care management expertise included three domains
of their understanding: the stage within the process
of learning expertise in which the support occurred,
understandings about the intended outcome of self-
care decision making, and the socio-historical con-
text in which the supportive interactions took place.
Discussion of each of these dimensions will permit
an expanded interpretation of the issues associated
with enacting and interpreting support from health
care professionals to patients in a complex context
such as self-care management in chronic illness.
3.1. Trajectory
The development of expertise in a skill as complex
as diabetes self-care decision making is a process
involving many years of concentrated learning, fine-
tuning, revising, and testing. As this excerpt illus-
trates, learning how insulin, diet, and exercise com-
bine within the unique configuration of a life is a
highly complex matter:
An evening of quilting to me would be I’ll be
sitting in a chair and working with my hands
trying to sew something or quilt something, which
means I’m not moving around, I’m sitting in a
chair. If I’m going to go directly from dinner to
quilting with no exercise after dinner, I’ll take
probably a little bit of regular insulin because I
know I’m just going to be sitting in a chair doing
absolutely nothing, not even on my feet. And if
quilting turned out to be getting up and walking
up and down the stairs to get your wool from
upstairs and actually yarn the wool, then I would
have made a mistake and I would have to eat
quite a bit of food probably to compensate for a
situation which I’d incorrectly planned for.
All of the participants in our study recalled a
developmental process similar to the more general
processes of moving from childhood through
adolescence and finally toward a more adult level of
responsibility in their disease management, regard-
less of their age and stage at diagnosis. In earlier,
more passive and dependent stages, the support they
expected from health care professionals was much
different from that which they required during their
rebellious times, and that again was markedly differ-
ent from what was needed as they eventually moved
into more adult competencies with regard to their
self-care processes. As this excerpt illustrates, pro-
gression from one stage to the next required shifts in
their own level of responsibility as well as their
understanding of the role of their health care profes-
sionals:
What I would do is I would take the insulin with
me and went out to a pub or something and have
a beer with dinner. I’d actually go in the wash-
room and have an injection right there, because
then I’d sort of know how much I was going to be
drinking or eating sort of thing. And I think most
of the time it worked out okay. Sometimes I’d be
having low blood sugars or high blood sugars
 S.E. Thorne, B.L. Paterson / Patient Education and Counseling 42 (2001) 81 – 90
and it was a hit and miss sort of thing. But I
remember I didn’t tell anybody. I didn’t tell [my
doctor] or the nurses that I was doing that
because they had said this is how many units of
insulin you need to be taking.
While all participants could identify appropriate
reactive health care professional support at each
stage of this learning trajectory, they also articulated
the inadequacy of simply responding to their appar-
ent needs at the moment. In fact, they argued, health
care professionals who responded to what they
thought they needed at that time could make it more
difficult for them to progress through their develop-
mental processes and achieve competence. There-
fore, as several pointed out, the most appropriate
kind of support that could be given by health care
professionals during the early years of learning to be
a diabetic was to orient them to the kinds of skills
and competencies that lay ahead, and to begin to
pave the way for assuming increasing levels of
control over their own disease management. One
participant recalled such an encounter early in the
process:
That was something that my first diabetes
doctor said to me. He said this is your disease,
you have to live with that. So you’re the one
who’s controlling it. You’re going to be control-
ling it more than the doctors or the medical
profession or anyone ever will be.
Although such insightful support in these early
stages could sometimes be frustrating, since it did
not represent what this individual thought he needed
at that particular time, in hindsight it was understood
as incredibly enlightened and extraordinarily suppor-
tive.
3.2. Intended outcome
A critical element of support in learning expert
self-care management in diabetes inevitably involved
shifting beyond a compliance model of adhering to
medical advice and developing an intricate and
sophisticated ability to make effective and astute
modifications in that advice on the basis of one’s
own bodily cues, pattern recognition, and experien-
85
tial logic. For example, consider one man’s report of
seasonal variations in his insulin dosage, worked out
over years of experimentation:
Generally in the fall, when the weather gets
cooler, I have to take one additional unit of NPH
in the morning and a little bit more in the
evening, a quarter unit or so . . . Likewise in the
spring, when the weather gets warmer, I take one
unit less . . . At this time of year I’ll up it by
probably a half a unit for increments . . . and see
what kind of a result that produces, watch it for a
couple of days and if it doesn’t bring them
[glucose readings] down then I know I need
another half.
Another participant explained the significance of
detecting unique bodily cues in order to determine
safe activity levels:
I shouldn’t be driving with a blood sugar of
2.2 that’s for sure. And one thing that is sort of a
tell tale that I know right now is that when I close
my eyes I have a small area that’s silver, sort of a
black silver, and it goes from being very small to
quite a large, large circle and that is definitely a
sign of low blood sugar.
And yet another individual noted a pattern of
information gleaned from ascertaining the meaning
of fluctuations in everyday activities:
I’ve learned to read my body to a certain
degree by what’s going on with my golf game.
Mostly, if I’m feeling really sort of dragged out,
normally its because I’m high. And if I can’t
control my golf swing usually its because I’m low,
and I’ve got balls going in every direction.
This pattern of body listening as a critical element
in self-care management in diabetes has been well
recognized by others who have used qualitative
methods to study the experience of this particular
chronic illness population [39–43].
When compliance is discarded as a measure of
intended outcomes, people with diabetes recognize
effective self-care management using a number of
discrete variables. On an everyday basis, they judge
86 S.E. Thorne, B.L. Paterson / Patient Education and Counseling 42 (2001) 81 – 90
success by their ability to prevent incidents of hypo-
or hyperglycemia, and on an hourly basis, they may
evaluate their effectiveness on the basis of whether
their expected blood glucose levels match the read-
ings on their glucometer. On a more extended basis,
they also evaluate outcomes on the basis of compli-
cations, although increasingly they recognize that the
correlation between everyday control and the onset
of complications is not straightforward and may
depend to some degree on fortune. Finally, and
perhaps most importantly from an experiential per-
spective, they evaluate their self-care management
success by their ability to have the quality of life that
they value, and to live as normally as is possible.
Thus it is clear why compliance, the most usual
intended outcome of informational support in our
professional literature, is inappropriately applied to
this particular disease experience. In the diabetes
context, health care professional advice toward com-
pliance was described by the participants in our
study as inherently unsupportive in the long term,
while guidance on strategies and approaches to
modifying advice in an intelligent and responsible
manner was inherently supportive. Since the standard
of care in diabetes education in this country, and
indeed around the world, is based on a compliance
model, the accounts of these participants portrayed a
circumstance in which our major initiatives are
counterproductive to the processes of self-care deci-
sion making. Indeed, from these accounts, it seemed
that it was only those few enlightened and ex-
perienced specialists in diabetes care who had the
knowledge as well as the confidence to challenge the
traditional compliance model. Generalists and stan-
dardized programs for diabetes education inevitably
became a barrier for these patients to overcome
rather than a source of support.
3.3. Context
In order that guidance and advice from health care
professionals be considered supportive in the larger
scheme of self-care management of a complex
disease like Type I diabetes, communications must
be understood to take place within context. Accord-
ing to the accounts of the participants in our study,
many well-intended professionals along the way had
complicated the learning process with codified and
rigid prescriptions as to what was necessary in self-
care management. One participant described his
early experiences with rigid diet:
Oh yeah, you can only eat, you know, seven
peas and two leaves of lettuce, and having to have
your measuring cup and your measuring spoons
there all the time, measuring everything out to the
ounce . . . And that’s basically what it was. It was
this fear that, my God, if you deviate from that,
boy you’re going to be in trouble.
Another participant recalled how hard it was for
her to try to conform to such prescription. ‘‘The first
thing [my doctor] said to me, try to keep your blood
sugars between 120 and 150 mg. It was impossible,
absolutely impossible, and I went crazy trying to do
it. Just about had a nervous breakdown.’’
Control battles with regard to whose decision-
making logic was better were prominent in all of the
accounts. As one participant emphasized:
It’s life and death to me. I feel that strongly
about it. I think that if I hadn’t taken the
empowerment [approach] that I probably would
be in much worse physical shape, and I probably
would have had many more complications, and I
probably would have been killed by some over
zealous intern or whatever defining it as for my
own good.
However, as time passed and science progressed,
patients were inevitably provided with new and
conflicting information, usually advocated as force-
fully as was the previous, now discarded, way of
thinking. Since the early stages of learning how to be
a diabetic required embedding some of the logic of
diabetes physiology into ones subconscious thinking
processes, alterations in the knowledge could be
dramatically disruptive. For example, one participant
described how such rules could become ingrained in
one’s psyche:
I remember when I first became a diabetic it
was stressed that it was very important that you
get up at seven, you give your insulin, you know,
and hopefully you can wait from seven to seven
 S.E. Thorne, B.L. Paterson / Patient Education and Counseling 42 (2001) 81 – 90
thirty before you eat something for your insulin to
kick in. And then you’re supposed to have your
breakfast and go on with the rest of your day.
And it was always stressed that a regimented way
of life is important and is the key to being a
diabetic. And that’s why I always feel so guilty
when I sleep until eight or eight thirty because its
sort of been ingrained that I’m supposed to have
this regimented day.
The frustrations experienced by those who had
sacrificed, denied themselves, or struggled to con-
form to a logic now understood to be faulty created a
general sense of distrust in the science of diabetes
and, for most, a sense that their best source of
guidance was their own knowledge of their own
bodily patterns. Professionals who were too closely
aligned with the current thinking, or too enamoured
of the science, could never be effectively supportive,
and in some cases could be dangerous, as one
woman’s account explains.
I believed in the medical system, stupid me,
until they nearly killed me when I had my child. It
was only after that, that I really paid as much
attention to the body things, because before that,
there was no discussion about rebounds. And of
course we did urine testing and it was just terribly
inaccurate we know, but of course then it used to
be the be all and end all, you know and, there
was so much concentration on the importance of
those tests that you didn’t need to pay any
attention and you ignored what your body was
telling you because the tests told you something
else. And that of course was all garbage.
In contrast, the most supportive professionals were
those who themselves understood the science as
limited, and who fully endorsed the view that the
patient is indeed the most reliable and accurate
source of information about his or her physiological
function. Thus professionals whose philosophy of
care involved partnership with the patient from the
outset, with an increasing degree of expertise being
located in the person with the disease, were those
most able to support the processes of self-care
management.
87
4. Interpretive context of support
The diabetes self-care decision making research
illuminates that a number of the assumptions with
regard to health care relationships that have generally
been held within chronic illness theory deserve
thorough critical reflection and rethinking. First and
foremost, it seems quite clear that what is and is not
supportive may be entirely unrelated to what the
professional believes is consistent with friendly,
kind, and helpful interactions. As the examples
described above illustrate, the presumably well-in-
tended efforts of professionals can have decidedly
unsupportive effects in a context such as the long-
term process of developing expertise in self-care
management.
A traditional impression of persons with chronic
illness is that they can be cranky and self-centred
[44]. The diabetes context effectively depicts a
situation in which being pleasant and accommodat-
ing to health care professionals can have untoward
repercussions, and such repercussions can be of
lethal proportions. The terror that these expert self-
care decision makers report when they have to
delegate their disease management to others, such as
during hospitalization for an acute illness or surgery,
is disquieting. Therefore, in order to learn to live
well, persons with chronic illness may have to be
willing to be aggressive advocates for their own
health needs in certain situations. In contrast, in
order to maintain normalcy in their everyday social
world, they may also have to be capable of relegat-
ing self-care decision making to their subconscious
thinking as much as is possible. Thus, the intricate
and dynamic process of bringing some illness issues
into the foreground while others remain in the
background of everyday consciousness seems a
critical element in successful self-care management
in chronic illness.
As has been reported in accounts of other chronic
illness experiences [15], conflicts with health care
professionals regarding control over decision making
appeared throughout the accounts and shaped the
trajectory of learning in relation to self-care manage-
ment. While there was evidence of a consistent
pattern from passive dependence, through control
battles, to a more confident acceptance of control,
many patients reported that health care professionals
88 S.E. Thorne, B.L. Paterson / Patient Education and Counseling 42 (2001) 81 – 90
failed to distinguish between these stances in their
approach to diabetes care and education. Further,
once a patient had come to recognize and accept the
importance of self-responsibility in relation to self-
care decision making, this was seldom unprob-
lematic. Encounters with new practitioners, especial-
ly hospitalizations, forced people into struggles with
professionals who believed they knew what was best
for the patient. It seems remarkable that so many
health care professionals believe that they understand
diabetes management, especially in light of the
incredible complexity illuminated by these accounts.
Further, where trusted professionals did recognize
and accept patient expertise in knowing what they
needed and when, patients occasionally encountered
resistance to taking breaks in their total responsibility
for self-care management. Among our participants,
there were several who reported times, such as
bereavement, sickness, family crisis, and so on,
during which they were absolutely incapable of the
complex thinking required to self-manage their dia-
betes regime. Thus any effective health care strategy
toward decision-making control required some ele-
ments of shared decision making, mutual respect,
and flexibility.
The intricacies of diabetes self-care management
help us appreciate why generic theories about
chronic illness may not be sufficient to an effective
understanding of such constructions as self-care
management. Just as diabetes has particular elements
that make it unique among chronic diseases, it is
likely that many other chronic illnesses depart from
the more general theory in some particular ways (see
Penninx et al. [45]). It seems clear that our theories
of support in chronic illness require some specificity
to each discrete disease (or group of diseases), and
we are well cautioned to remain aware of the dangers
of overgeneralization from chronic illness theory. As
is also evident from this study, as well as the body of
qualitative research in chronic illness, each indi-
vidual with a disease brings to the management
problem all of the unique and extraordinary circum-
stances of his or her life and context. Thus, our
research strategies and theoretical work must always
remain sufficiently flexible to remind us of the
infinite range of variations within the lives of people
with chronic illness.
5. Practice implications
From the results of this study, a number of clinical
practice implications arise. Firstly, it seems evident
that a complex skill such as self-care management of
diabetes will evolve over time and take on differing
forms throughout that trajectory. In order for health
care professionals to be able to support, rather than
interfere with, these processes, learning must be
understood in context, and the trajectory of illness
experience must be honored. Further, general knowl-
edge with regard to the direction of the trajectory can
facilitate movement toward self-care decision mak-
ing rather than support the more passive processes
characteristic of earlier phases. While patients may
not feel quite ready to hear about the level of
responsibility they will inevitably have to assume,
professionals can gently prod and poke them in the
direction of apprehending that objective without fear.
Another critical clinical implication of this work is
the challenge it poses to our traditional compliance
models of chronic disease education. While rigid
compliance may serve some groups of people better
than others (in the case of diabetes, our participants
concede that it may be appropriate for some Type II
diabetics, or for some individuals diagnosed later in
life), it must be challenged as counterproductive to
the kind of learning that will be most consistent with
the more relevant and meaningful outcomes of
learning. Thus strategic experimentation, effective
documentation of untoward events to facilitate pat-
tern recognition, and responsible trial and error may
well be more appropriate objectives for the self-care
learning process. Inherent in this alternative form of
education is a recognition that biomedical science is
limited in its application to the problem, and that
much of the most critical knowledge will come from
the body listening, theorizing, and testing in which
the patient engages.
Another element of the self-care learning trajec-
tory that becomes apparent in the accounts of
participants such as these is the long period of time
over which it must occur. Because very few health
care relationships are designed for the long haul,
many patients have to accommodate and adjust to
various styles, philosophies, and approaches over
time. We think that these findings underscore the
 S.E. Thorne, B.L. Paterson / Patient Education and Counseling 42 (2001) 81 – 90
importance of attempting to create long-term part-
nerships in which professionals can guide patients
over several years toward skill development. Such
strategies might require reconsidering the degree to
which we currently facilitate and encourage geog-
raphic mobility and organizational role shifts within
health care delivery systems. Perhaps a return to the
values of continuity and commitment over the long
term trajectory of a chronic illness should be consid-
ered in the mission and vision statements upon which
we build our programming.
Finally, as was made clear by the participants in
our study, learning to manage self-care with a
complex disease such as Type I diabetes can be a
formidable and all-consuming process. When they
perform their self-care decision making well, it may
look effortless. By taking the time to understand how
hard it can be, day in and day out, we validate the
creativity and intelligence people really do bring to
their chronic illness experience. By giving up our
control battles, by recognizing the uniqueness of
each patient’s situation, and by engaging in care over
the long term, we may be able to figure out how to
make a positive difference in that complicated
challenge of support.
Acknowledgements
The authors gratefully acknowledge the support of
the British Columbia Health Research Foundation.
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