ORIGINAL ARTICLE doi: 10.1111/j.1752-9824.2011.01087.

The influence of illness perspectives on self-management of chronic

disease
Åsa Audulv RN
PhD Student, Department of Health Sciences, Mid Sweden University, Sundsvall, Sweden

Kenneth Asplund RNT, DMSc

Professor, Department of Health Sciences, Mid Sweden University, Sundsvall, Sweden, Department of Clinical Medicine,
University of Tromsö, Tromsö, Norway

Karl-Gustaf Norbergh PhD, RNT

Senior Lecturer, Department of Health Sciences, Mid Sweden University, Sundsvall, Sweden

Submitted for publication: 22 April 2010

Accepted for publication: 6 February 2011

Correspondence: A , A S P L U N D K & N O R B E R G H K - G ( 2 0 1 1 ) Journal of Nursing and

A U D U L V Å
Åsa Audulv Healthcare of Chronic Illness 3, 109–118
Department of Health Science IHV The influence of illness perspectives on self-management of chronic disease
Mid Sweden University
Aim. To explore people’s illness perspectives and related self-management of
SE-851 70 Sundsvall
chronic disease.
Sweden
Telephone: +46 60 148494/+46 73 0270788 Background. Individuals’ illness beliefs and perspectives have been suggested to
E-mail: asa.audulv@miun.se influence their self-management behaviour. However, research that has examined
the influence of illness perspectives on chronic disease self-management has been
largely quantitative and has focused on selected elements of self-management. How
individuals’ illness perspectives influence their whole of self-management has not
been investigated in depth.
Method. The phenomenographic research study entailed 26 narrative interviews
with Swedish adults with a variety of chronic diseases. Data were collected mostly
during 2006.
Results. The participants described two illness perspectives; being life-oriented
meant to focus upon how to live a good life with disease, whereas a disease-
oriented illness perspective emphasised the medical and physiological aspects of
disease. The participants attested to one of the two illness perspectives as a main
perspective, although they shifted between the perspectives depending of context
and illness experience. The participants’ illness perspectives were reflected in their
understandings of self-management. Participants with a dominant life-oriented
illness perspective performed self-management in order to continue living a
‘normal’ life (e.g. facilitate activity and mental well-being). When holding a
disease-oriented illness perspective, self-management was focused upon control-
ling disease (e.g. symptom management and avoiding disease related complica-
tions).
Conclusions. People with chronic illness hold a dominant illness perspective that
determines how they understand and enact self-management. These perspectives

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Å Audulv et al.

are not static; instead individuals tend to shift between the perspectives under
specific circumstances.
Relevance to clinical practice. Health-care providers shall acknowledge that
individuals’ with chronic illness shift between a life-oriented and a disease-ori-
ented illness perspective. The results of the current study can be used by
health-care providers in order to launch a dialogue in order to support individ-
uals’ self-management.

Key words: chronic illness, health beliefs, illness perspectives, illness representa-
tives, self-care, self-management

Theory of reasoned action (Cook 2008). However, research

Introduction
How people experience living with chronic disease is not
entirely dependent on the nature of the disease. Investigations
of the experiences of people with different diagnoses have
generated similar narratives about struggling, fear, altered
self-image, adjusted life, but also about finding solutions, and
hope (e.g. regardless if the diseases were life-threatening and
non-life threatening, progressive and non-progressive, and
episodic and ever-present) (Clancy et al. 2009, Håkanson
et al. 2009, MacDermott 2002, Iaquinta & Larrabee 2004,
Olsson et al. 2008, Svedlund & Danielson 2004, Johansson
et al. 2009, Olshansky et al. 2008). One factor that deter-
mines people’s experiences in living with a chronic disease is
their illness perspective; this perspective includes the individ-
ual’s attitudes, beliefs, and values about living with the
disease (Paterson 2001).
Researchers (Haidet et al. 2006, Kralik & van Loon 2010)
have suggested that an individual’s perspective about his or her
chronic disease is integral to determining how that person
manages the disease on an everyday basis. However, few
studies exist that have explored the interaction between illness
perspective and the nature of self-management of chronic
disease. In this paper, we will describe the findings of a research
study conducted in Sweden that explored people’s illness
perspectives and related self-management of chronic disease.
Background
The notion of illness perspectives originated with the work
of Arthur Kleinman (1988). He determined that the meaning
the person with chronic disease held about his disease is a
major influence on how the person live. Over the years
researchers have developed a couple of psychological theories
and models concerning individuals’ risk and/or health
behaviour which share the theoretical assumption that people
have individual beliefs about their health and illness, i.e.
Health belief model, the Protection motivation theory,
attempts to examine how individuals illness perspectives
influence their self-management has been largely relegated to
studying the influence of illness perspectives on single
elements of self-management (e.g. the control of symptoms
or use of medication). Studies have found that individuals’
illness perspectives influenced how they act toward symp-
toms, triggers and how they incorporated their illnesses in
their daily lives (Hansson Scherman et al. 2002, Hörnsten
et al. 2004, Darr et al. 2008). For example did people with
arthritis perform little pain management if they believed
arthritis pain to be a natural part of ageing (Davis et al. 2002)
and among people with diabetes was beliefs concerning
treatment as very effective relate to exercise and eating
healthy (Hampson et al. 1995). Halm et al. (2006) investi-
gated the influence of illness perspectives on the use of asthma
medication, symptom monitoring and follow-up health-care
visits. These researchers determined that if people understood
their asthma as an acute episodic illness, rather than a chronic
disease, they used less preventative medication, engaged in
less self-monitoring and had fewer routine follow up visits
than those who viewed asthma as a chronic condition.
Researchers have found associations between illness per-
spective and self-management practises. However, existing
research is predominantly quantitative, involving surveys that
result in descriptive statistics about the nature of this influence
on selected elements of self-management (e.g. medication,
exercise and diet). The influence of illness perspectives is mostly
represented as static and unchanging, regardless of research
that has demonstrated that people shift their illness perspec-
tives according to what is happening with their disease and in
their lives (Paterson 2001). According to Paterson (2001)
individuals shifting perspectives are likely to influence their
self-management performance but there exist no research upon
the matter. This study intends to address what is currently
missing by providing an in-depth qualitative understanding of
how illness perspectives influence people’s commitment to
and understanding of the whole of self-management.

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Original article Illness perspectives influence on self-management

Aim Participants

To explore people’s illness perspectives and related self-
management of chronic disease.
Method
The research approach used in the current study was
phenomenography. The phenomenographic research ap-
proach is based on the assumption that people understand
and experience the world in qualitatively different ways. If
their different ways of experiencing a phenomenon are
discovered and explored, their different ways of dealing with
a phenomenon or a situation may also be explained (Marton
& Booth 1997). This means that the focus of phenomeno-
graphic research will be on finding various ways of under-
standing a phenomenon.
The distinction between phenomenography and phenome-
nology lies in the fact that phenomenography focuses on
variation in how a phenomenon is understood, while phe-
nomenology is concerned with finding the core meaning in the
experience of a phenomenon. In phenomenology, the focus is
a shared meaning between participants; in phenomenography,
the emphasis is between and within-individual variations in
ways of understanding the phenomenon under study (Larsson
& Holmström 2007).
A search of phenomenographic research in Scopus reveals
266 articles in refereed journals. Most of these are in the
field of health education and arise from Scandinavian
countries. Phenomenography has been applied in nursing
research primarily in regard to how health-care practitioners
learn their practice as clinicians (e.g. Bastholm Rahmner
et al. 2010), but recently also to investigate peoples under-
standing of illness (e.g. Winterling et al. 2009, Zidén et al.
2010).
Twenty-six adults diagnosed as having at least one chronic
disease were recruited from an outpatient clinic in a hospital
in a medium-sized Swedish city with 100 000 inhabitants; the
hospital was situated in the county of Västernorrland,
Sweden. Inclusion criteria were aged 18 years and over, the
ability to speak Swedish, and that the person had been
diagnosed with a chronic disease for at least one year. The 18
women and eight men had diagnoses including ischemic heart
disease, diabetes mellitus, multiple sclerosis, rheumatic dis-
ease, chronic kidney failure, and inflammatory bowel disease;
14 had more than one chronic disease. The participants’ ages
ranged between 19–83 years (Median = 58Æ5) and they had
been living with their diseases for between 1–60 years
(Median = 16) (for more detail, see Table 1).
In order to attain a range of narratives, a diverse sample
with varied experiences and perspectives was desirable (Polit
& Hungler 1999). Therefore, one of the authors (ÅA) looked
at the outpatient clinic’s appointment schedule to identify
possible participants that fulfilled the inclusion criteria for the
study, and would meet the criteria for variation according to
gender, age, diagnosis, and duration of diagnosis. Potential
participants were approached face-to-face at the clinic by ÅA
and given verbal and written information about the study.
Five participants agreed to participate in the study but later
withdrew for personal reasons (illness of a family member,
illness of self, lack of time). A few people stated that they
would not participate in the study because they were ‘too
well’ and believed they would have nothing to contribute.
Data collection
Single face-to-face interviews were undertaken at the conve-
nience of the participants in a private location chosen by

Table 1 Description of sample demographics (N = 26)

Time since
diagnose (years) Age (years)
Diagnose (median = 16) Working situation (median = 58Æ5) Marital status

Chronic kidney failure, N = 4 1–5, N = 4 Full time employment, N = 6 <30, N = 4 Married or

cohabitating, N = 18
Diabetes mellitus, N = 9 5–10, N = 9 Part time employment and 30–60, N = 12 Living alone, N = 8
part time disability pension, N = 4
Inflammatory bowel disease, N = 5 10–20, N = 5 Sick-listed or having full >60, N = 10
disability pension, N = 7
Ischemic heart disease, N = 5 >20, N = 8 Retired, N = 9
Multiple sclerosis, N = 2
Rheumatoid arthritis, N = 9

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Å Audulv et al.
them; approximately half of the participants were inter-
viewed in their homes and the others chose locations such as
a seminar room at the university. The interviews were
narrative in character, composed of open-ended questions
aimed at exploring the participants’ understandings of illness
and self-management. Examples of interview questions
included: ‘Can you describe how it is to live with [current
diagnosis]?’ ‘Can you tell me about when it is difficult to
manage your illness?’ and ‘Can you tell me about how you
experience your management of your illness?’ Probing was
used in order to understand the meaning in the participants’
descriptions; e.g. ‘Why is that difficult/important for you?’
and ‘Could you describe a situation when this was an issue?’
The interviews lasted between 20 minutes and two hours
(average 40 minutes). Individuals with long illness experience
or substantial illness intrusion tended to have longer inter-
views, whereas the interviews with individuals stating that
‘illness was but a small part in their lives’ were shorter. The
interviews were transcribed verbatim and the transcriptions
were checked against the original tapes by ÅA. Data were
collected during late 2005 and early 2006, a few preliminary
interviews were conducted in September 2003 as a prepara-
tion for the study.
Ethical considerations
The study was approved by the Regional Ethical Review
Board. The participants received written and verbal informa-
tion about the study. For example, was the participants
informed that their participation was voluntary and they could
withdraw at any time without giving an explanation. Further,
was the eligible participants informed that their choice about
taking part would not be known to their health-care providers
and thereby not influence their care in any way.
Data analysis
Data analysis occurred in the tradition of phenomenography;
i.e. at first, all transcripts were searched for statements or
words describing participants’ ways of understanding their
illness. Several temporary codes and later categories were
constructed to explain these illness perspectives. Because
phenomenography focuses on identifying diverse understand-
ings, the temporary categories were read with a focus on their
structure (i.e. the focus of the category) and referential
aspects (i.e. the underlying meaning of the category). During
this stage, the researchers asked questions such as, ‘What is
the main focus of this category?’ and ‘What distinguishes this
category from the other categories?’ After the initial devel-
opment of the two illness perspectives (i.e. life-oriented and
112
disease-oriented), the analysis went beyond a strictly phe-
nomenographic approach. The reason was that we wanted to
further explore the shifts in perspectives and their relation-
ship to self-management. In this phase, the researchers asked
questions such as, ‘What characterizes situations that lead to
shifts from a life-oriented to a disease-oriented illness
perspectives?’ and ‘What characterizes self-management in
relation to a ‘‘life-oriented illness perspective?’’’
The computer software Nvivo 7.0 (Edhlund 2007), a
qualitative data analysis resource, was used as a tool for
keeping track of the data and all coding decisions. The
researchers wrote memos to track the evolution of ideas and
reflections made during the research.
Findings
The research findings revealed two core illness perspectives:
life-oriented and disease-oriented. Each of the participants
attested to one main or dominant perspective, but they
shifted to the other perspective as much as hourly, depending
on the context and illness experience, such as when acute
exacerbations of the disease occurred. The dominant per-
spective was the participants own understandings of illness
and wellness, e.g. viewing wellness as the absent of symp-
toms. While the temporary perspective was the participants’
current focus on either life or disease (see Table 2).
There were no major differences identified in illness per-
spectives related to the type of chronic illness; however, the
participants’ illness perspective seemed to be influenced by the
degree of impact of the disease’s symptoms or treatment.
Participants with severer or persistent symptoms and complex
treatment regimens tended to have a dominant life-oriented
illness perspective, and contrarily, participants with mostly
asymptomatic illness mostly held a dominant disease-oriented
illness perspective. For example, a woman with rheumatoid
arthritis experiencing few flare-ups provided a description of
an illness perspective that was similar to that given by a man
with mostly asymptomatic ulcerous colitis, and a woman with
well-controlled heart failure. Meanwhile, the illness perspec-
tive described by a woman with severe diabetes who received
dialysis was similar to that provided by a woman living with
severe and disabling multiple sclerosis (see Table 3). In the
first section, we will describe the two illness perspectives. Later,
we will describe how the participants depicted the influence
of these perspectives on their self-management.
Life-oriented illness perspective
The participants who attested to a life-oriented perspective as
their primary illness perspective focused on their chronic
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Original article Illness perspectives influence on self-management

Table 2 Descriptions of the different illness perspectives

Descriptions by participants’ having a dominant Descriptions by participants’ having a dominant

life-oriented illness perspective disease-oriented illness perspective

Description of the dominant illness
perspective – how illness and
wellness was understood
Description of the temporary
life-oriented perspective
depending on which dominant
illness perspective the participants
attested to
Description of the temporary
disease-oriented perspective
depending on which dominant
illness perspective the participants
attested to
Participants with a dominant life-oriented illness
perspective focused upon how to live a good life
with the disease. Wellness was defined as living
as the participants’ desired within the
constraints of the disease. They appreciated
their ability rather than limitations, focusing on
mental well-being allowing the illness to take up
only a small part of life
Participants took an active part in shifting to a
temporary life-oriented illness perspective when
they for example performed meaningful
activities or maintained relationships despite
their symptoms or limitations
The participants with a dominant life-oriented
illness perspective shifted to a temporary disease
oriented illness perspective in situations when
health threats or symptoms became
uncontrollable or interfered with their activities
Participants holding a dominant disease-oriented
illness perspective emphasised the medical and
physiological aspects of disease. Wellness was
defined as being asymptomatic. Participants
emphasised the risk of developing disease
related complications or getting disabled
Participants holding a dominant illness-oriented
perspective had a temporary life-oriented
perspective when they were free from symptom
and disease related thoughts. Then they lived
what they called a ‘normal’ life
Participants with a dominant disease oriented
illness perspective had a disease-oriented
perspective in situations when the disease
became overwhelming; such as when symptoms
worsened

disease as only part of their daily lives. They emphasised the
need to live in the way that they wanted; i.e. to live in a way
that was meaningful and reminiscent of the positive aspects
of how they lived predisease. They attempted to develop
strategies and behaviours that allowed them to live with their
illness as ‘normally’ as possible. Wellness, according to
participants who held to this perspective, was seen as living as
they desired within the constraints of the disease.
Participants indicated that an important aspect of this
perspective was to celebrate what one can do, rather than to
emphasise the losses associated with having the disease. For
example, one woman with rheumatoid arthritis (6) said, ‘And
I think that if I live as normally as possible and try to do (the
activities I can) and, sort of, am positive. That’s the medicine
for me. That’s why I feel as good as I do’. Another woman
(25), with diabetes, chronic kidney failure, said: ‘It is hard to
grasp what it’s like to be totally healthy. […] I am the person
I am now and I live my life as I believe is best for me’.
Disease-oriented illness perspective
Participants who described a disease-oriented illness perspec-
tive emphasised the medical and physiological aspects when
describing their illness. They focused on the results of clinical

Table 3 Quotes illustrating how participants described illness. Participants with a dominant life-oriented illness perspective emphasised the
disease consequences upon their life, meanwhile participants with a dominant disease-oriented illness perspective focused upon physical
sensations and other disease signs

Demographics Quote

Dominant life-oriented illness
perspective
Dominant disease-oriented illness
perspective
A woman with severe diabetes and chronic
kidney failure receiving dialysis (25)
A woman living with severe and disabling
multiple sclerosis (15)
A man with well-controlled heart failure and
diabetes (23)
A woman with rheumatoid arthritis experiencing
few flare-ups (26)
I have been very swift in doing things […] but
now I sort of have to plan what I do
You have limitations in what you can do and
when you have had a rather active life you find
it hard [to cope with]
It [atrial fibrillation] was not dangerous, they
said. But when it happened it was so
unpleasant, if you tried to check the pulse by
yourself, it was quite impossible
And for the rheumatism, I take some pills for
that. It is okay, it kind of flares and in-between
it’s not a problem

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Å Audulv et al.
tests, disease-related symptoms, and risks of achieving disease
related complications or being worse off in the future. The
majority of participants who mainly attested to this perspec-
tive described themselves as physically well and being ill only
when they experienced symptoms or were told by their
physician that they were not well; they described wellness as
basically determined by feeling physically well (e.g. good
diagnostic tests results and being asymptomatic).
Participants who held to a disease-oriented illness perspec-
tive described being controlled by their symptoms and their
disease status. For example, one woman with Crohn’s disease
(18) described how she recovered her ‘strengths between the
flare ups’, her daily activities and her current well-being were
determined by the state of her disease; ‘when you are worse,
then it’s hard, and you get tired and cranky. And when it is
even darker, then all I want to do is skip [it all]’. Many
participants with diseases characterised by acute exacerba-
tions indicated that they did not think about their illness in
periods when they had few or no symptoms. For example,
one woman with venous insufficiency and ischemic heart
disease (19) said, ‘I don’t walk around thinking about theses
aches and pains, but now I have to, because now I’m in pain,
but otherwise I wouldn’t walk around thinking about it’.
Shifts in illness perspective
The participants identified several kinds of situations that
resulted in shifts between illness perspectives. Participants
that shifted from a life-oriented to a disease-oriented illness
perspective described certain kinds of situations that
demanded that they put their disease in the foreground. Such
situations included when symptoms became uncontrollable
or when a new disease-related complication became appar-
ent. For example a woman with rheumatoid arthritis (8) who
generally assumed a life-oriented perspective indicated that
when her pain was overwhelming it was necessary to ‘give in
to the disease’. She saw the shift to a disease-oriented illness
perspective as self-protective, a temporary way of focusing
just on herself and her disease. ‘Sometimes, you just enter into
yourself, shut all the doors around you, not meeting anyone,
not seeing anyone. Then I just want to be with myself. […]
Because then, maybe a few days pass and then you feel a little
better’.
Another precursor of a shift from life-oriented to disease-
oriented illness perspective was encountering evidence of a
disease-related complication or a situation that the person
perceived as high risk in developing a disease-related com-
plication. One man with diabetes (16) gave as an example
that when his vision deteriorated ‘overnight’, he ‘got a little
panicked’ and became focused on his blood glucose readings,
114
focusing on what was happening to his body that might
indicate that he would lose his vision. ‘I sort of lived with the
blood glucose meter. But then, I probably monitored [blood
glucose]… well, during several weeks, once per hour during
my waking times’.
Some of the participants who held a dominant life-oriented
illness perspective stated the illness constrained their possi-
bilities to live as they chose. They described that the disease
required them to vigilantly monitor their bodies and their
prescribed regimes; otherwise, they risked long-term conse-
quences of severe health complications (e.g. going blind or
having a shorter life) or short-term consequences of increas-
ing symptoms and not being able to carry out their plans.
One woman (11) stated that diabetes ‘runs’ her life. ‘It’s
because I believe I can’t afford any other [way of living].
I would rather live and eat this way or manage like this, so
I can live for maybe two extra years’. In such situations
participants described how they had to assume a disease-
oriented perspective in order to live a ‘normal’ life, but at the
same time believed that a life-oriented perspective could help
them to focus on well-being and to find ways to live as they
wished within the constraints imposed by the disease. The
same woman described how she in order to be able to bike
ride with her niece took precautions in her diabetes manage-
ment (e.g. monitored blood sugar levels, adjusted her insulin
pump, brought provisions) in order to avoid a hypoglycaemia
event.
Participants with a dominant disease-oriented illness per-
spective made temporary shifts to a life-oriented perspective
at specific times. These included when they experienced no
disease-related symptoms and when they wanted to strive
against the disease. For example, one man with Crohn’s
disease and diabetes (20) stated that he concentrated on living
his life as a well person whenever he was free of his
symptoms. However, a woman with diabetes (13) shifted to a
life-oriented perspective whenever she wanted a break from
having to think about and plan her diabetes management. On
these occasions, she overlooked many aspects of her disease
management, such as glucose monitoring and diet. She
described such shifts as a manifestation of her conflict
between ‘living the good life versus living a long life’: ‘I
don’t want to have to think all the time. I should be able to
live as I choose. Maybe I will die before my time instead’.
Another shift that was evident in the participants’ narra-
tives was a shift to return to the dominant illness perspective.
Participants who held a temporary disease-oriented perspec-
tive shifted back to the life-oriented perspective when they
developed strategies or drew on previously-learned strategies
to control the impact of their disease (e.g. control symptoms
and disease-related complications or to mediate a high risk
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Original article
situation). Such shifts involved their assuming an active role
in learning new strategies and assessing the situation. A
woman with multiple sclerosis (22), shifted back to her
dominant life-oriented illness perspective when she attempted
to find ways to deal with the increasing paralysis in her legs.
She used positive thinking techniques that had been helpful in
the past when she had experienced discouraging signs of
progression of the disease.
A return to a disease-oriented illness perspective was
prompted most often by symptoms of the disease occurring
after a period of being symptom-free. For some participants,
such a shift occurred when symptoms of the disease went
from controllable to uncontrollable. For those who had made
the temporary shift to a life-oriented perspective because they
wanted to strive against the disease, the return to a disease-
oriented perspective occurred when the participant or
another person (e.g. family member, health-care practitioner)
became concerned about the neglected self-management or
the possible outcomes of that. For example, a man with
ulcerous colitis (10) was prompted to return to a disease-
oriented perspective when his friends pointed out the dangers
of his ‘drug-holidays’: ‘I do not want to [take medication] but
then I have people that all the time says: ‘‘But do you want to
have a bad stomach’’ and ‘‘Do you want to begin to bleed
again’’’.
Self-management related to illness perspective
The participants’ illness perspectives were reflected in their
understandings of self-management. Most participants with a
life-oriented illness perspective embraced self-management
that was directed towards their well-being; for example, they
developed strategies to be able to do what they wanted
despite their disease and to integrate their illness as a part of
their life. One woman with diabetes (12) described her
response when she realised that she would never be able to
walk again. ‘But I have been through so many things now, so
it does not [bother me]. Instead, the first thing I say to my
husband is, ‘‘Well then, I shall have a permobile’’ [scooter].
Because it can be difficult, if I would want to get out and
move around and see people’. Participants with a life-
oriented illness perspective often identified the goal of self-
management as being able to maintain their abilities, interests
and relationships. One man with diabetes (16) stated: ‘Well,
that’s [self-management] because of my children. I must take
care of me in order to be able to take care of them… [and]
because I want to be able to continue being out in the forest
and hunt’.
Participants with a life-oriented perspective viewed them-
selves as making choices about how the disease would impact
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Illness perspectives influence on self-management
their lives. For example, one woman (15) focused on the
positive aspects of living her life while being ill, and avoiding
a focus on the losses she had encountered in having multiple
sclerosis. ‘Then it’s important to keep going, you feel fitter,
healthier. You try to keep the ill part away. Although you get
tired, yes… you forget that you are ill by keeping going’.
Some participants described making deliberate decisions to
participate in activities, despite knowing that they would
experience negative consequences, because they wanted to
live in the way they wished. ‘…and sometimes I can take a
long walk but then I get the backlash the day after, although
I can take it because then I know I have felt well one day…
maybe that week’ (woman with multiple sclerosis, 23).
Self-management directed towards well-being and living a
‘normal’ life included balancing, prioritising or adjusting
activities, and in some cases, particularly when individuals
had experienced losses because of the illness, maintaining a
positive attitude. Acceptance of the disease was mentioned by
the majority of participants as integral to maintaining the life-
oriented perspective. They viewed their illness as something
that had happened that they needed to come to terms with
and to integrate into their lives.
Well it’s a fact, there is no other way… I can’t get well again. It’s
something that you are used to now, I think. And then you can’t just
look at the negative aspects, you have to consider the positive aspects
as well. And not thinking that it’s very hard [to live with], instead
[you should] like live somewhat in the present, you have to seize the
day. (woman with multiple sclerosis, 15)
Some individuals with a life-oriented illness perspective
strove against their illness in order to stay life-oriented.
Performing self-management could be challenging in such a
context. Then participants performed self-management reluc-
tantly, developed ‘neutral’ self-management behaviours that
were not visible evidence of the disease (e.g. using walking
sticks rather than crutches, deciding not to use an insulin
pump on the beach where others could see it) or rejected
aspects of their self-management. For example, one man with
ulcerative colitis (10) described how he decided not to take
his medication at times because he was actively resisting the
association between his taking medication and living a
normal life. ‘I don’t want to be dependent on a medication,
instead I want to live an as normal life as possible’.
Participants with a dominant disease-oriented illness per-
spective emphasised self-management that focused on symp-
tom management and controlling the disease progression,
they predominantly used strategies such as medication and
life-style regimes (e.g. exercise or diet). Other goals of self-
management, such as developing a network of social support
or enhancing one’s employment, were not considered within
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Å Audulv et al.
their self-management goals. These participants often viewed
self-management as mandatory. They believed that they had
‘no other choice’ than adhering to the prescribed regime, even
when this regime constrained their social life. ‘It’s maybe that
simple that if I would not take care of myself, I would become
ill’ (Woman with Crohn’s disease, 18).
Discussion
The research findings have revealed two main illness per-
spectives in living with chronic disease; life-oriented and
disease-oriented. These perspectives are similar to other
studies identifying ways of understanding health or illness.
In a resent study midlife women defined health as the absence
of illness or as being able to fulfil life expectancies (Smith-
DiJulio et al. 2010) and a study among physicians revealed
two perspectives upon disease management; either as health-
care providers controlling disease in a biomedical way or
patients maintaining health in relation to their own goals
(Thille & Russell 2010). In several ways, the findings of this
study are reminiscent of the Shifting Perspectives Model of
Chronic Illness (Paterson 2001). What this study adds is a
more in-depth description of illness perspectives, as well as a
description of the actual process of shifting between perspec-
tives, and a detailed description of how these perspectives
influence understanding and enacting of chronic illness self-
management.
In the Shifting Perspectives Model (Paterson 2001),
people with chronic illness are viewed as having one
dominant illness perspective (i.e. disease in the foreground
or wellness in the foreground). In the current study, the
dominant illness perspectives (i.e. disease-oriented or life-
oriented) are similar in that one focuses on the disease and
the other on life. Another similarity is that illness perspec-
tives are not dependent on diagnoses but are more likely to
be related to functional ability and perceived severity of the
illness. However, it is striking that people who had lived
with the chronic disease for several years and/or had
consistent and controllable symptoms or disability held to
a dominant life-oriented illness perspective, while individu-
als with few or irregular symptoms/disability held to a
dominant disease-oriented illness perspective. A possible
explanation is that it is more crucial for people with severe
illness to learn strategies to shift and maintain a life-oriented
illness perspective in order to experience a life worth living.
However, individuals who do not regularly experience
symptoms or disability (i.e. they have periods of being
symptom-free) may automatically shift temporarily to a life-
oriented perspective as an outcome of feeling well, but be
unable to sustain this perspective because they have devel-
116
oped few strategies to maintain a life-oriented illness
perspective.
Paterson (2003) highlights the importance not to regard one
illness perspective as being better or more effective in chronic
illness management than the other. The current study revealed
that people with each illness perspective made decisions about
their self-management that were congruent with their illness
perspective but could be risky to their well-being. For
example, those that strove against their disease because they
wished to maintain a life-oriented illness perspective often
chose to enact activities that they knew would cause them
negative outcomes later. The paradox of living with a
dominant life-oriented illness perspective is that in order to
live life as one wants, one often places oneself at risk for
symptoms or disability, thereby forcing a shift to the disease-
oriented illness perspective (e.g. the person with a multiple
sclerosis who goes for a long hike but later is too exhausted to
do anything). The paradox of the disease-oriented illness
perspective is that in order to focus on the disease, one does
not engage the people or the life strategies that might be
actually effective in managing the symptoms or disability (e.g.
people with this perspective did not reflect on their working
situation or relationships’ influence on their disease).
A striking feature of the study findings is that participants
with a predominant life-oriented illness perspective were
actively involved in their decision to maintain this perspective
or when they made the choice to be temporary disease-
oriented. These participants chose the life-oriented perspective
because they believed that would result in long-term benefits
for them and because they wanted to live their lives not as ill
people but as people who had a disease. However, participants
with a dominant disease-oriented illness perspective were most
often passive in regard to maintaining this perspective and
how and why they shifted between the different illness
perspectives. They held the illness perspective because they
believed that the disease’s symptoms or disability resulted in
them having no other choice but to focus on the disease.
The current study expands the Shifting Perspectives Model
of Chronic Illness (Paterson 2001) in that it explored how the
illness perspective influenced participants’ understanding and
enactment of self-management. The findings revealed that
those who held to a dominant life-oriented perspective
embraced self-management in order to live life as they
wished; those with a dominant disease-oriented perspective
emphasised the goal of self-management as controlling the
disease. However, particularly within the life-oriented illness
perspective, how participants enacted self-management to
accomplish their stated goals of self-management was
complex. Although some participants with a dominant life-
oriented perspective embraced self-management as a way of
 2011 Blackwell Publishing Ltd
Original article
being able to live as they liked, others with this perspective
overlooked their aspects of self-management because they
believed participating in self-management activities would
make them disease-focused and reveal their disease status to
others; they preferred to appear ‘normal’ to themselves and to
others. This is similar to the finding by Townsend et al.
(2006) who described how people with co-morbidities viewed
using ambulation aids as both a way to ease symptoms but
also as making the illness more visible and thereby threaten-
ing the individual’s identity as a ‘normal’ person.
Limitations
The current study’s descriptions of shifts in illness perspec-
tives are grounded in the participants’ retrospective accounts.
Prospective research entailing a longitudinal design method-
ologies, such as modified think aloud (Paterson et al. 1999),
may have provided more information about how illness
perspectives change over time and in various situations.
Future quantitative research should also investigate differ-
ences in illness perspectives between diagnoses, age groups,
gender and ethnicity etc. Although, we suggest that a more
intrusive experience of illness influences the illness perspec-
tive we can not make any definite conclusions about
relationships between illness perspectives and demographics
in our small qualitative sample.
A limitation of the current research is that the study did not
examine what self-management the participants actually
performed. Instead, it focuses on the participants’ descrip-
tions of their self-management and their understanding of the
goals of self-management. It should be acknowledged that
what behaviour people retrospectively report and what they
actually do are not the same (Kupek 2002), and that people
may not always possess the individual and external resources
in order to perform the self-management they perceive they
need (Audulv et al. 2009).
Conclusions and clinical implications
The current study found that people with chronic illness hold
a dominant illness perspective (i.e. life-oriented or disease-
oriented) that determines how they understand and enact
self-management. The study has highlighted that illness
perspectives are not static entities, shifts occur under specific
circumstances; therefore one cannot assume that people
who attest to one perspective will maintain that perspective
in all situations and at all times. It has also pointed to the
beneficial and untoward effects of holding either illness
perspective. The findings of this study hold significant impli-
cations for clinical practitioners, namely:
 2011 Blackwell Publishing Ltd
Illness perspectives influence on self-management
• Other research has described practitioners’ tendency to
assume that the person with chronic illness wishes to focus
entirely on the disease (Barry et al. 2001). The current
study highlights the importance of practitioners exploring
patients’ illness perspectives with them and includes the
person’s identification of meaningfulness in living with the
disease. Health-care providers need to develop the skills to
support self-management related to both a life-oriented
and a disease-oriented illness perspective.
• Health-care practitioners could use the findings of this
study as a basis for discussing with patients if there are
aspects of the findings that resonate with them. For
example, a practitioner might state, ‘It says in this study
that sometimes people with chronic illness strive against
their disease. Have you experienced this in living with your
disease?’ This could form the foundation for a discussion
about how to mediate the risks of such experiences.
• Health-care practitioners who identify patients with a
dominant disease-oriented perspective should engage the
person in a discussion about strategies to become less
controlled by the disease and to live in a more meaningful
way when the symptoms of the disease predominate. Per-
haps individuals with a dominant disease-oriented per-
spective could be assisted by health-care practitioners to
develop strategies to assist a shift to a life-oriented per-
spective (e.g. alternative ways of controlling symptoms,
strategies to integrate self-management in their lives and
ways they could facilitate their well-being).
Acknowledgements
We want to thank all our participants for sharing their
narratives with us. We also want to acknowledge Dr Jan
Larsson for his thoughtful advice concerning the phenome-
nograhic approach and analysis, and Dr Barbara Paterson for
her valuable comments regarding the manuscript.
Contributions
Study design: ÅA, KN, KA; data collection: ÅA; data
analysis: ÅA, KN, KA and manuscript preparation: ÅA.
Funding
The research was funded by Mid Sweden University.
Conflicts of interest
No conflicts of interests.
117
Å Audulv et al.
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