Families Living With Chronic Illness: Beliefs About Illness, Family, and Health Care

576794
research-article2015
JFNXXX10.1177/1074840715576794Journal of Family NursingÅrestedt et al.
Article
Journal of Family Nursing
2015, Vol. 21(2) 206–231
Families Living With © The Author(s) 2015
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DOI: 10.1177/1074840715576794
About Illness, Family, jfn.sagepub.com
and Health Care
Liselott Årestedt, RN, MSc1,

Eva Benzein, RNT, PhD1,2,
and Carina Persson, RPT, PhD1,2
Abstract
Beliefs can be described as the lenses through which we view the world.
With emerging illness, beliefs about the illness experience become
important for nurses to understand to enhance well-being and healing.
The aim of this study was to illuminate illness beliefs of families living with
chronic illness. A qualitative design was chosen, including repeated narrative
research interviews with seven Swedish families living with chronic illness.
Hermeneutic analysis was used to interpret the transcribed family interviews.
The result described beliefs in families, both within and across families. Both
core beliefs and secondary beliefs about illness, family, and health care were
revealed. Illness beliefs have importance for how families respond to and
manage situations that arise from their encounters with illness. Nurses have
to make space for and listen to families’ stories of illness to become aware of
what beliefs may support and encourage family well-being and healing. The
Illness Beliefs Model provides a touchstone whereby nurses can distinguish
both individual and shared beliefs within families living with chronic illness
and provide ideas for family intervention if needed.
1Facultyof Health and Life Sciences, Linnaeus University, Kalmar/Växjö, Sweden

2Center for Collaborative Palliative Care, Faculty of Health and Life Sciences, Linnaeus
University, Kalmar/Växjö, Sweden
Corresponding Author:
Liselott Årestedt, Department of Health and Caring Sciences, Faculty of Health and Life
Sciences, Linnaeus University, S-391 82 Kalmar, Sweden.
Email: liselott.arestedt@lnu.se
Downloaded from jfn.sagepub.com at GEORGETOWN UNIV MED CTR on May 24, 2015
Årestedt et al. 207
Keywords
chronic illness, families, beliefs about illness, beliefs about families, beliefs
about health care, Illness Beliefs Model, hermeneutic inquiry, Sweden
Living with chronic illness is not only an individual concern but also a family
affair (Årestedt, Persson, & Benzein, 2014; Eggenberger, Meiers, Krumwiede,
Bliesmer, & Earle, 2011). Chronic illness often implies a shift with increasing
demands on individual, couple, and family functioning. The changed lives of
the person with the illness (Mahon, O’Brien, & O’Conor, 2014), for spouses
(Radcliffe, Lowton, & Morgan, 2013), and for families (Årestedt et al., 2014)
are evidenced by a common desire to acknowledge and manage the illness
(Eggenberger et al., 2011; Eriksson, Asplund, & Svedlund, 2010; Yorgason
et al., 2010). Families who live with chronic illness often have to co-create
both a new context for living and new patterns in their daily life that becomes
an ongoing process for the family (Årestedt et al., 2014; Persson & Benzein,
2014). In this process, beliefs about illness become important for effective
family functioning that will enhance well-being (Rolland, 1998) and dimin-
ish suffering. In some situations, families need help and support from nurses
to find their way toward well-being. By uncovering families’ illness beliefs,
nurses and families may together decide and determine the most adequate
supporting strategies that will promote family health and healing. In this
study, we used the Illness Beliefs Model (IBM; Bell & Wright, 2011; Wright
& Bell, 2009) to uncover beliefs at both individual and family levels.
The IBM
The IBM is a model for advanced practice with families, based on the prin-
ciple that it is not necessarily the illness but rather the beliefs about the illness
that are potentially the greatest source of individual and family suffering
(Wright & Bell, 2009). We focus in this research on the definition and charac-
teristics of beliefs as understood in the IBM. Beliefs can be defined as “the
lenses through which we view the world and they guide us in choices we
make, behaviors we choose and feelings with which we respond” (Wright &
Bell, 2009, p. 19). A belief encompasses ideas of what is taken to be true, “‘the
truth’ of a particular reality that influences bio-psycho-social-spiritual struc-
ture and functioning” (Wright & Bell, 2009, p. 27). Our core beliefs, which are
often implicit, are fundamental to our personal identity. Core beliefs are basic
concepts by which we live our lives and they are often accompanied by affec-
tive and physiological responses. Core beliefs are powerful and influence
response to illness and family functioning (Wright & Bell, 2009).
208 Journal of Family Nursing 21(2)
Beliefs emerge, develop, and are altered through our interactions with oth-
ers, in different contexts such as culture, religion, workplace, and family. We
influence each other’s beliefs and develop our identity through the beliefs
systems that we share or do not share, for example, within families and
friendships. Beliefs can distinguish one person from another but also join us
together. Illness beliefs can be both facilitating and constraining. “By con-
straining beliefs, we refer to beliefs that decrease possibilities for discovering
solutions or resolution to challenges and/or problems and often enhance suf-
fering; facilitating beliefs, on the other hand, increase solution possibilities,
decrease suffering, and invite healing” (Wright & Bell, 2009, p. 22).
Depending on the circumstances and our experiences, a belief that is con-
straining in one context can be facilitating for another person or in another
context. When illness emerges, our beliefs can become affirmed, challenged,
or threatened. The IBM has been described in many contexts (Bell & Wright,
2011; Marshall, Bell, & Moules, 2010; Moules, Thirsk, & Bell, 2006;
Robinson, 1998; West, Bell, Woodgate, & Moules, 2015). Using the IBM in
therapeutic conversations between nurses and families is one way to ease suf-
fering by acknowledging and strengthening facilitating illness beliefs.
Constraining beliefs can also be explored and challenged (Wright & Bell,
2009).
Previous Research About Beliefs and Illness

Previous research about beliefs and illness has mostly assumed an individual
perspective (Darr, Astin, & Atkin, 2008; dela Cruz & Galang, 2008; Hjelm,
Berntorp, & Apelqvist, 2012; Järemo & Arman, 2011). From such a perspec-
tive, beliefs about the etiology of illness often became a complex combina-
tion of causes where psychological factors dominate (Järemo & Arman,
2011). Individual lifestyle changes were also associated with beliefs about
etiology of an illness. For example, individuals who held beliefs that fate was
a cause of illness were found to be less motivated to make lifestyle changes
(Darr et al., 2008; dela Cruz & Galang, 2008). Another study showed that if
people with illness are unaware of their external resources, such as help and
support from others, constraining beliefs of being a “victim” of circumstances
might arise (Järemo & Arman, 2011). Another study with a family perspec-
tive in a palliative context showed that there are both individual and shared
beliefs within a family. Some beliefs were contrasting and mutually not
exclusive; paradoxically, they could occur at the same time. By oscillating
between contrasting beliefs, family members handled challenges in daily life
(James, Andershed, & Ternestedt, 2007). However, there were a number of
studies that mention the importance of family members’ illness perceptions
and that they influenced the illness outcomes and family function (Darr et al.,
2008; dela Cruz & Galang, 2008; Rosland, Heisler, & Piette, 2012). When
beliefs become important for how individuals and the family as a unit per-
ceive and manage illness, research with a Family Systems Nursing (FSN)
approach (Benzein, Hagberg, & Saveman, 2008; Wright & Leahey, 2013) can
offer new understandings about beliefs in families living with chronic illness.
Other studies have found that the IBM constitutes a foundation for family
nursing conversations that contribute to family well-being (Limacher &
Wright, 2006; Moules, 2009; Robinson, 1998; Thirsk & Moules, 2013; West
et al., 2015). In this study, we used the IBM to uncover beliefs within and
across families within a research context. Based on the current body of
knowledge, there is a need to understand illness beliefs on a family level to
be able to develop suitable caring interventions.
Aim
The aim of the study was to illuminate illness beliefs in families living with
chronic illness.
Method
A secondary analysis was conducted using data collected from family
research interviews in a previous study for the purpose of illuminating the
meaning of lived experience of living as a family in the midst of chronic ill-
ness (Årestedt et al., 2014). This study used a FSN approach that views the
family as a unit and focuses on interactions between family members through-
out the research process (Ganong & Coleman, 2014). A hermeneutic method
was used to analyze data based on family research interviews, not clinical
interviews where there is a focus on some type of change and/or healing. The
analysis was inspired by the hermeneutic philosophy of Gadamer (2004) and
followed the methodological procedure for hermeneutic inquiry described by
Ödman (2007). In a hermeneutic inquiry, there is a constant moving between
the parts and the whole throughout interpretation process, which aims to gain
new understandings and meanings (Gadamer, 2004; Ödman, 2007). It is a
suitable method to explore phenomena about human experience, and it offers
possibilities of reinvention and new ways of viewing the world (McCaffrey,
Raffin-Bouchal, & Moules, 2012).
In this study, “family” refers to a self-defined group of two or more indi-
viduals who are, or are not, bound by blood ties or law, but function in a way
that makes them feel they are a family (Whall, 1986). “Chronic illness” is
defined as “the irreversible presence, accumulation, or latency of disease
states or impairments that involve the total human environment for support-
ive care and self-care, maintenance of function, and prevention of further
disability” (Curtin & Lubkin, 1995, pp. 6-7).
Participants
A purposive sample of families was recruited. Inclusion criteria were as fol-
lows: Swedish-speaking families where an adult family member had lived
with chronic somatic illness for more than 2 years and having at least two
family members to invite to the interview. Exclusion criteria were as follows:
cognitive or speech disorders and persons receiving palliative care at end of
life.
Participants were recruited through information given by nurses and pub-
lic advertising at a medical clinic in one hospital and two district health care
centers in the south of Sweden. Those interested in participating contacted
the first author themselves or via a nurse who mediated the contact. Families
were then given verbal and written information about the study. Interviews
were subsequently scheduled with those who agreed to participate. The study
participants consisted of seven families. Their characteristics are shown in
Table 1.
Data Collection
Narrative family interviews (Eggenberger & Nelms, 2007) were conducted
by the first author between June 2010 and April 2011. Each family was inter-
viewed twice during a period of 2 to 4 weeks. All interviews took place in the
participants’ home except one, which took place at the first author’s work-
place. The research interviews lasted from 30 to 75 min, and were tape-
recorded and transcribed verbatim by the first author.
The first interview started with an open question: “Can you tell me about
your experiences of living as a family with chronic illness?” To facilitate a
systemic perspective and co-creation of stories, the answers were followed
up with circular and reflective questions (Tomm & Liedén, 2009). Family
members were asked to reflect on each other’s stories by using questions
such as “What do you think when you hear your father tell us about that?”
and “Do you remember the situation your sister just told us about, how was
it for you?” Questions intended to obtain rich descriptions, such as “Can
you tell me more about that . . . ?” were also used. The transcription from
the first interview was read through before the second interview took place
and families were asked to clarify and develop certain areas of the
phenomenon.
Table 1. Family Characteristics (n = 7).

Family member Family member Family member Family member
(relation to (relation to (relation to (relation to
Family Person with person with person with person with person with
members illnessa illness and age) illness and age) illness and age) illness and age)
Family 1 Woman, 50 Husband, 50 Sister-in-law, 48

years yearsb years
Family 2 Man, 50 Mother, 74 Father, 76 years Man, 50 years,
years years Friend/
personal
assistant (took
part in the first
interview)
Family 3 Man, 32 Wife, 32 yearsb Mother, 57 years
years
Family 4 Woman, 54 Husband, 57
years yearsb
Family 5 Woman, 44 Husband, 47 Son, 13 years Daughter, 11 Sister, 38 years
years yearsb (took part years (took (took part in
in the first part in the first the second
interview)b interview)b interview)
Family 6 Woman, 46 Daughter, 19 Partner not
years yearsb living in
the same
household as
the person
with illness,
man, 57 years
Family 7 Woman, 80 Husband, 82
years yearsb
aThe persons with illness were diagnosed with either diabetes, whiplash, stroke, multiple sclerosis, chronic
obstructive pulmonary disease, muscular dystrophy, renal failure, or rheumatism. All persons with illness
received medical and pharmacological treatment due to illness.
bPerson who lives in the same household as the person with illness.
Data Analysis
Hermeneutical analysis (Ödman, 2007; Ödman & Kerdeman, 1997) was used
to interpret and understand illness beliefs in families living with chronic ill-
ness, and data were analyzed on a family level both within and across fami-
lies. According to Gadamer (2004), new understanding emerges from
openness, participation, and dialogue. Through a dialectical process between
the revealed experience and the researchers’ pre-understanding, the text can
be explored, examined, and re-examined. This process facilitates a “fusion of
horizons” between the researchers and the text, which is essential for the
development of new understanding. The analysis was continuously moving

like a hermeneutic spiral between the whole and the parts to achieve a greater
understanding (Ödman, 2007). The definition of a belief in the IBM (Wright
& Bell, 2009) was used in the analysis as a way to think about and interpret
beliefs. First, the interviews were read to obtain an overall understanding of
each family’s story. Then, text sections which included possible beliefs in
each family and from each family member were marked in the text and sum-
maries were done for each family. The interviews were then read again to
validate or invalidate beliefs and discover whether only one or more than
one family member expressed the same belief. If more than one person in a
family expressed the same belief, the whole interview was read again to
explore whether it could be defined as a family belief. A family belief was
identified and defined as a belief that was expressed by all participating fam-
ily members within a family, and it was derived from different examples,
occasions, contexts, and times in the family’s story. A family belief was also
often expressed by using the word “you,” for example, “you have to fight,”
which was an expression of a general truth in the family. In the next step,
differences and similarities between beliefs within and across families were
examined and thematic patterns were identified (Ayres, Kavanaugh, &
Knafl, 2003). Both core beliefs and secondary beliefs were described. When
beliefs were identified across families, core beliefs emerged. These were
beliefs that were more prominent and dominating for the families’ way of
thinking and acting. Additional beliefs or secondary beliefs were then
derived from the core beliefs and the text. To confirm a valid interpretation,
a reflection on whether the result was a meaningful way to explain data and
whether there were no contradictions in data behind the interpretation were
done (Ödman, 2007).
Ethical Considerations
Ethical approval was obtained from the Regional Ethical Committee (D-nr:
2010/51-31). In accordance with The Declaration of Helsinki (World
Medical Association, 2008), participants gave written consent after receiv-
ing written and verbal information about the study, including the purpose
and procedures, the voluntary nature of participation, and the option to with-
draw at any time. Participants were guaranteed confidentiality and secure
data storage.
Respect for privacy was taken into account in the interview situations by
not putting informants under pressure to disclose more than he or she appar-
ently wanted to. The interviewer was also prepared to refer interviewees to
professional help if needed.
Table 2. Beliefs.
Core beliefs Secondary beliefs

Beliefs about Illness is a part of Illness should not take too much space
illness life Illness should not restrict daily life
Illness is a threat Illness restricts thoughts about the
to life future
It is unfair to be affected by illness
You have to live a normal life
Beliefs about The family is Family constitutes support when
family important in someone in the family is ill
illness Family ties are strengthened when
someone is ill
Communication about illness should be
kept within the family
Beliefs about The encounter with You must have someone who speaks
health care health care is a for you
struggle Health care professionals avoid talking
about illness and its consequences
Health care professionals should be
able to provide answers
Findings
The findings describe beliefs in families and the context in which the beliefs
appeared. Common beliefs both within families and across families are
described. The result includes beliefs in three areas: beliefs about illness,
beliefs about family, and beliefs about health care. There are two kinds of
intertwined beliefs: core beliefs and secondary beliefs. Core beliefs seem to
have a greater importance than secondary beliefs and are viewed as a general
truth by the family members. The secondary beliefs are derived from the core
beliefs and are more likely to be challenged and changed than the core beliefs
(Table 2). Both kinds of beliefs become important for how families choose to
handle different situations that result from illness.
Beliefs About Illness

Illness is a part of life. The core belief about illness as a part of life means that
families view illness as an integrated and natural part of everyday life. Illness
has a place in their lives, but it is not dominating. When illness is viewed as
a part of life, family members seem to be more aware of and prepared for new
and unexpected situations resulting from illness.
This core belief is connected with secondary beliefs such as “illness should
not take too much space” and “illness should not restrict daily life.”
Illness should not take too much space. When illness is seen as a natural part
of life, it is not allowed to take too much space and families strive to mini-
mize its space. Sometimes, the severity of illness fluctuates and families try
to live with the changes, but mostly they strive to be in health. This implies
that families consciously avoid focusing too much on the illness to promote
family function and well-being. One way to avoid that the illness becomes
visible can be to avoid talking about it, which can facilitate for the family to
be in health and well-being. Even though the family, in periods, allows more
space for the illness, they return to focus on well-being as soon as they can.
This belief also influences how families choose to handle various situa-
tions, for example, can choose to spend time with healthy people and avoid
patient associations. One family described their encounter with patient asso-
ciations in this way:
Person with illness: I have never felt so ill as when I went home [from a
patient association meeting] and then mother said: I don’t think you have
to bother, it’s nothing for you (laughing) and I have not been there . . .
Husband: But then we realized that it wasn’t anything for us. (Family 1)
It also seemed to be important for families to treat the family member with
illness as a healthy individual, without ignoring the ill family member’s expe-
riences of illness. One family member with illness described how she acted
so as not to look ill in the eyes of others. By displaying a healthy appearance,
she did not need to answer questions about how she felt:
Person with illness: Yes, but some mascara, I do not want to go out without
it.
Sister-in-law: No, that is true . . .
Person with illness: So it is important for me that people say: Ah! You do
not look ill. Thanks.
Sister-in-law: Then you have to be happy.
Husband: Mmmm.
Person with illness: Because I don’t want that. It is not . . . What if they
say: Oh, look at you, don’t you feel well? Then you feel ill.
Husband: No, you will probably not feel that great. (Family 1)
Illness should not restrict daily life. When there is an underlying belief that
illness is a part of life, families live their lives without allowing illness to
restrict daily life. For the individual family member or the family as a whole,
this can mean performing activities of importance although it is harder for

them before, during, and/or after activities. Abstaining from activities is
deemed more difficult than handling problems or suffering caused by the
activities. Sometimes, it also becomes important to make space for rest after
activities, or that some family members can choose to do an activity rather
than all of them abstaining from it.
This belief permeated one family story and all family members returned to
it several times. Despite the fact that the family member with illness had
become worse, they had not been limited; instead, they developed ideas about
the planning of how different activities could be carried out. They said,
Person with illness: If I was to avoid everything that makes me feel a bit
worse or something, I mean, I could not even lie in a bed and do noth-
ing, because whatever I do hurts.
Wife: So he must choose what he wants to do, but you don’t take part in
everything . . . but you do some things. One has to, God, otherwise one
becomes crazy.
Mother: Otherwise, finally, there is nothing that stimulates you.
(Family 3)
Illness is a threat to life. In families where there is a core belief that illness is a
threat to life, there is an uncertainty on how to meet and handle illness expres-
sions. Families strive to live as normal as possible and avoid thinking and
talking about the illness. When illness expressions appear, they are experi-
enced as frightening and feelings of fear and frustration arises. When families
do not talk about the illness, it seems to become difficult for them to meet and
understand situations related to illness, and when family members’ needs to
talk about the illness differ, there could be an imbalance that decreases well-
being. This core belief also raised concerns within families about why they
were affected by illness and how illness will be developed in the future. This
core belief is related to the following secondary beliefs: “illness restricts
thoughts about the future,” “it is unfair to be affected by illness,” and “you
have to live a normal life.”
Illness restricts thoughts about the future. When families are thinking about
illness, there is a concern about the future. This belief affects individual fam-
ily members and/or the family as a whole by trying to avoid thinking and talk-
ing about the future. On one hand, this belief can be constraining in families’
lives when illness expressions appear all the time, but on the other hand, it
can be facilitating and help families to be in the present and appreciate things
in life. One family talked about how they were thinking about the future:
Sister-in-law: I think you have learned to enjoy the present too . . .

Person with illness: Mmm.
Sister-in-law: . . . because it is here and now that counts.
Person with illness: Yes, you have to, and appreciate the present, you
never know what happens in the future. (Family 1)
It is unfair to be affected by illness. This belief was mostly expressed by

family members of the person with illness. It was regarded as unfair that they
had been affected by illness and they compared themselves to other families
without illness. When families thought it was unfair to be affected by illness,
it also became important not only to release and show feelings, for example,
frustration, anger, and sadness but also to “bite the bullet” and move on.
These thoughts could also make families believe that it was facilitating not to
think about how life without illness could have been. One family said,
Person with illness: No, I think I have good quality of life, you cannot
think; what would I have done if I did not have this [illness]? What
would I have done?
Husband: No, it is just to hold back then . . .
Person with illness: That does not work, but I think I have struck a good
balance and I have good quality of life. (Family 4)
When families experienced it as unfair to be affected by illness, they had

various thoughts about the person with illness, such as he or she being capa-
ble to handle the illness expressions. Family members described valuable
characteristics, such as patience and not giving up. When the family member
with illness became vulnerable and weak, these thoughts were challenged in
the family. One family talked about an occasion when the person with illness
was at the hospital:
Mother: Yes, then it was bad. Then he did not want to live anymore. Then
he had lost heart.
Father: Yes of course, then he did not want to live any longer and he tore
and pulled and wanted to take away all the cords and he did not want to
live (crying).
Mother: Yes it was surprising, you would never have thought that he could
be like that.
Person with illness: No.
Mother: But he is back again.
Person with illness: Yes (thoughtfully).
Father: Yes, now he is his usual self again. Yes . . . (Family 2)
You have to live a normal life. When illness was considered as a threat to
life, there was an ever-present fear that the illness would become too vis-
ible, making the person with illness looked upon as different by other people.
The family tried to hide illness expressions so that other people would not
recognize that the person with illness was different. Sometimes, there were
underlying thoughts that having an illness was shameful.
Families in which this belief was prominent described how they strived to
be normal and hide the illness expressions. They compared themselves with
other families without illness and they did not want to be discriminated due
to illness. This belief could be seen on various occasions over time, and all
family members talked about it.
Person with illness: I try to live as normal as possible, even if I’m using a
wheelchair I try to live a normal life . . . without having to think so much
about being in a wheelchair. But sometimes you really think about it,
that you are in a wheelchair, how people will look at you . . . eh . . . but
you have to dismiss such thoughts . . . I’m normal. (Family 2)
The belief was confirmed when the family talked about the difficulties
they had experienced when people in their surrounding had seen the illness
expressions, and they felt that those situations were hard for them to handle.
One example described going on a trip:
Mother: And once I became . . . oh I became so annoyed, we were on the
ferry and eh . . ., he [person with illness] didn’t manage the stairs, there
was no way . . . and the lift didn’t work. But then [father] said: It doesn’t
matter, I will take you over my shoulder! He threw him up on his shoul-
der and I went behind them, and then there were some young people
and they giggled and had so much fun because they thought . . . they
thought he was drunk. Ugh, I became very upset. (Family 2)
Beliefs About Family

The family is important in illness. Families believe that illness is a family affair
and that learning to live with illness is shared experience within the family.
The closest family members constitute a big source of confidence for each
other. The importance of family when living with chronic illness permeates
families’ stories, both within and across families. There are also secondary
beliefs, including that the family supports each other and that family ties are
strengthened by illness.
Family constitutes support when someone in the family is ill. When life was
constantly changing and new situations arose, it became important for family
members to be there for each other. This entailed being sensitive and recog-
nizing how other family members felt. It was also about feeling accepted for
who you are within the family. Despite what families thought about illness, if
it was a part of life or a threat to life, this belief was the foundation for how
they lived their lives.
Being there for each other when someone is ill was seen as something
natural. Family members thought that they were more needed by others when
a family member fell ill, especially by the person with illness. This could
manifest itself in the form of practical support, spending more time together
or moving closer to the person with illness. In addition, the family member
with illness constituted a support to other family members, and it became
frustrating for the family to accept that illness restricted the options to be
supportive.
Chronic illness could include altered roles and challenge beliefs about
expected roles, for example, the parent–child role. These beliefs could make
it difficult to be as supportive as expected. One teenage daughter described
the difficulties of having a mother with illness:
You don’t want your mother to be ill, I try to treat her as a normal adult all
the time . . . normal but it doesn’t work very well . . . then it becomes
. . . sometimes, you recognize that really . . . that she isn’t so healthy.
Later in the interview,

Partner: Yes, as I told you, it must be terrible to be 14 years old and then
suddenly see your mum in a wheelchair and . . . not be able to do any-
thing about it, and suddenly the mother depends on the daughter and
not the contrary and [daughter] has to help [person with illness], put her
clothes on and things like that, and she still needs help. (Family 6)
Family ties are strengthened when someone is ill. One belief was that family
ties are strengthened in connection with illness. More frequent contacts and
more time together contributed to strengthened ties. Families had a belief that
they showed more respect for each other than other families. Going through
difficulties and critical situations due to illness also strengthened their ties.
Things that had been taken for granted before were now challenged, making
those family members feel closer to each other:
Partner: Therefore in general terms when someone in a relationship
becomes eh . . . ill, has a disability or something, then you need the
other partner more . . . in one way. In that case, we haven’t been unique
anyway, but, what can we say . . . yes of course we probably have come
closer, come closer to each other in that way. (Family 6)
Communication about illness should be kept within the family. Families’ stories
about living with chronic illness also included beliefs related to how they talk
about illness. It seemed to be important to offer confidence and contribute to
well-being, but there were also variations in how they talked about illness.
Families expressed various thoughts which formed the basis for the belief
that talk about illness should be kept within the family; it was a matter of not
wanting to worry or bother other people, and, furthermore it might be good to
talk to those who experienced illness close-hand and had a deeper under-
standing of the illness experience than others. One family said,
Husband: There is a lot of talk about medications and a lot of talk about

. . . eh . . . such things, but that belongs to family life.Later, the person
with illness responds:
Person with illness: . . . you can’t offload everything on your friends, how
you feel and how it feels . . . but you cannot offload it on them . . . no I
don’t think so . . . so my husband gets everything. (Family 7)
Family members thought that it was important to be open and honest with
each other, and dare to talk to each other about their feelings, both sorrow and
happiness. This communication took place between family members who
were perceived as the closest, which meant that other family members might
not be included. Families thought that if they talked about illness expressions
in an open and honest way, the understanding for each other would increase
and their well-being would be strengthened. Families said that they thought
that people living together in the same household had more illness communi-
cation than those who did not live together.
Husband: No, sure I’ll take much more . . .

Sister-in-law: Mmm . . .
Husband: You will . . .
Sister-in-law: And I think the one you love, the one you dare to put your
foot down to. (Family 1)
Families described how different family members’ upbringing affected

their way of communicating about difficulties that occurred in life, for exam-
ple, illness. If a family member was raised in a family who talked a lot about
their experiences of various situations, they thought that this would be mir-
rored in how that family member talks about illness today. Despite the fact
that some family members had lived the most of their lives together, they
referred their differences in illness communication to their own upbringing:
Person with illness: Unfortunately, sometimes it is like that, it just pops up

but you are different, you dwell on things, dwell and dwell and I’m
more like (claps her hands) Bang!
Husband: Yes, I’m more . . . where I was brought up, if there were any
problems, they were to be talked about until they were completely
sorted out.
Person with illness: Yes, but, you cannot dwell on something for eternity
either.
Husband: No, but until it was, like, until it was sorted out. (Family 4)
Beliefs About Health Care

The encounter with health care is a struggle. The encounter with health care
was experienced as a struggle. Families insisted on receiving the best and
most appropriate treatment. They expected that health care professionals
would believe in them and affirm them. Families believed that the health care
provided depended on how familiar the patient was with their illness and
various treatment options, and also how much he or she sticks up for
themselves.
You must have someone who speaks for you. Families described that there must
be someone who speaks for you when the family member with illness does
not manage to stick up for themselves. Both the person with illness and other
family members thought that this was necessary in encounters with health
care. Families wanted to be seen and met with sympathy. Speak for yourself
was something that the family member with illness did not want to do on his
or her own and the participation by family members thereby became
important.
Health care professionals avoid talking about illness and its consequences. Fami-
lies expressed a belief that health care professionals avoid talking about ill-
ness and its consequences. On several occasions, the family member with
illness wanted explanations from health care professionals, for example,
about the cause of their illness and the given treatment. There was a wish to
be more fully informed and family members believed health care profession-
als sometimes withheld important information. Families believed they had to
be well prepared to fight their case.
Father: I want to have a dig at the doctors, because they know what illness
it is and then they should make it clear how to deal with it. Because I
thought that he should exercise and exercise, so he had to go up and
down the stairs so that he would train his muscles. But then, later, the
doctor told us that you shouldn’t exercise too much because you
weaken the muscles, they could have told us that from the beginning
. . . because it’s important (starts crying). (Family 2)
Health care professionals should be able to provide answers. There was also a
belief that health care should be able to provide answers and families became
disappointed and frustrated when this was not the case. Families expected
health care professionals to be the experts and that they should have sugges-
tions and offer appropriate treatments:
Husband: The first picture you get is: yes, what medical treatment do you
want? Then you want to say, but for goodness sake, you are the special-
ists, tell us, what treatment should we receive?
Person with illness: It was a bit strange at first, when the health care pro-
fessionals asked: What medical treatment do you want?
Husband: Yes.
Person with illness: What a question, how will I know?
Husband: No, but . . .
Daughter: Then you start searching on the Internet and so on . . .
Husband: No, you have to decide . . . and then . . . . you couldn’t stand it
and then we thought . . . and then it went quiet . . . and we didn’t like it
and we contacted . . .
Person with illness: Another hospital. (Family 5)
Discussion
This study revealed important knowledge about family beliefs when living
with chronic illness. This has not been presented before as previous studies
mainly focus on beliefs at an individual level. The findings showed two kinds
of intertwined beliefs: core beliefs and secondary beliefs. These should not be
regarded as an exhaustive description of beliefs, but a part of existing possi-
ble beliefs in families living with chronic illness. Core beliefs appeared to be
more profound and to have a greater importance on family functioning than
secondary beliefs. The secondary beliefs are derived or could be considered
as subsets of the core beliefs and are more likely to be challenged, changed
and/or modified than core beliefs. This is similar to Wright and Bell’s (2009)
conceptualization that core beliefs are more difficult to change or modify
than other beliefs because they are deeply rooted and often constitute the
basis for an individual’s identity. According to Kelly (1963), who uses the
term personal constructs instead of beliefs, the constructs can be both periph-
eral and core constructs and are hierarchically connected.
The families in this study described how they were acting, feeling, and
thinking in different situations when their core beliefs guided them, and they
expressed that these were taken for granted and often out of their awareness.
This is also similar to Wright and Bell (2009), who state that core beliefs
influence family functioning and are vital for how families cope with illness
and suffering. Core beliefs within families are fundamental to family identity
and coping strategies (Walsh, 2006; Wright & Bell, 2009).
The results also showed that there were shared beliefs within the family
based on the family evolving over time and having a shared history. As part
of their family evolution, they often develop common beliefs, which is also
similar to Wright and Bell (2009), who describe that beliefs are developed in
interaction with others over time. However, even if families have beliefs that
have developed over a long period of time, beliefs are not static. Families
evolve and so do their values and beliefs (Friedman, Bowden, & Jones,
2003). In this study, shared beliefs appeared in the families’ stories. For
example, one family member talked about a topic that was then confirmed by
other family members and who gave further examples, thus intertwining their
stories. This merging of family members’ common values and environment
influences how we make our constructs, and sometimes family members can
develop the same constructs based on these similar experiences (Kelly, 1963).
According to linguistic system theory, it is in our verbal communication that
our beliefs become visible. Language creates roles and a social structure for
human beings that are also closely related to our actions, and it is through
using words that actions obtain meaning in conversations with others
(Anderson & Goolishian, 2004). However, even if Wright and Bell (2009)
argue that there are beliefs which are shared through interaction in the family,
they mean that there is no such thing as family beliefs. Instead, they argue
that there are only individual family members’ descriptions of family beliefs.
However, we challenge this idea based on our results and from a systemic
perspective. We argue that family beliefs may be seen as something more
than the sum of individual family members’ beliefs.
According to Walsh (2006), belief systems within the family are the core
of family functioning and become powerful contributors to resilience. The
family’s view, perspective, and beliefs about their illness problems will deter-
mine how they will cope with their illness experience. Belief systems serve
as a cognitive map guiding decisions and actions and make family life coher-
ent (Rolland, 1998; Walsh, 2006). These family beliefs systems (Rolland,
1998), or family values (Friedman et al., 2003), are a system of beliefs that
consciously or unconsciously bind members of a family together in a com-
mon culture. Dominant beliefs in a family and its culture will certainly influ-
ence how families deal with new and challenging situations.
The results also included different core beliefs about illness, for example,
“illness is a part of life” and “illness is a threat to life.” When illness was
viewed as a natural part of life, being aware of and prepared for new situa-
tions caused by illness was included. According to Wright and Bell (2009),
this can be understood as the family having put illness in its place and have
had the possibility to make place for illness in their lives. Walsh (2006)
emphasizes the importance of having positive illusions and acknowledging
illness not only to experience well-being but also to acknowledge suffering
and give voice to concerns. When the belief “illness is a threat to life” was
dominating in the family, there was an ongoing uncertainty. Robinson (1998)
describes that illness was experienced as intrusive, unpredictable, and dan-
gerous in families in which chronic illness was viewed as a constant threat to
life.
In this study, there was a secondary belief that “you have to live a normal
life” when illness was viewed as a threat to life, and perhaps this belief also
included underlying feelings of shame. As mentioned previously, our culture
influences our beliefs (Walsh, 2006; Wright & Bell, 2009) and some beliefs
are more acceptable in particular cultures than others (Walsh, 2006). In
Western culture, illness is not always accepted according to Walsh (2006).
Western culture emphasizes personal responsibility and that we are the mas-
ters of our fate. If a family has such a belief, feelings of shame can occur
when illness emerges. Werkander Harstäde, Roxberg, Andershed, and Brunt
(2012) state that feelings of shame also include feeling vulnerable in the
situation.
The results also indicated that there are behavioral similarities between
some secondary beliefs even if there are different underlying core beliefs. For
instance, there were similarities in the behavioral expression of the beliefs’
“illness should not take too much space” and “you have to live a normal life.”
Families sometimes acted to restrain illness expressions, even if the second-
ary beliefs were linked to different core beliefs in our analysis. Paterson
(2001) offers the idea that restraining illness expressions can be a way to put
wellness in the foreground. On the contrary, ignoring disease-related changes
can also contribute to illness progression.
The results of this study also showed that families have beliefs that illness
is a family affair, and therefore it was a matter of course to be there for each
other within the family. This was evident in most of the beliefs that emerged
from the illness stories recounted by family members.
There were also beliefs that illness had strengthened family ties. This is
similar to Friedman et al. (2003) who described that shared family beliefs
was a part of family identity, which included conceptions about the family’s
own competence, importance, and durability. This common belief about how
illness can strengthen a family can be facilitating.
Previous research showed the importance of couples’ ideas about their
daily life (Skerrett, 2010) and in connection with illness (Skerrett, 2003).
Perhaps results from these studies with couples can also be transferred to
larger families. When couples view illness as a common matter, and develop
a we-awareness, they have better possibilities to promote healing and enhance
resilience (Rohrbaugh, Mehl, Shoham, Reilly, & Ewy, 2008; Skerrett, 2003)
and higher levels of well-being (Karademas, Zarogiannos, & Karamvakalis,
2010). There are also other studies that described the relationship between
shared illness perceptions and experience, and a higher level of well-being
(Trief et al., 2003; Yorgason et al., 2010). When couples face illness together,
both the ill person and the partner have to handle feelings of self-loss and
other-loss. It is rather unlikely that both partners have the same experience at
the same time, and therefore it is important that nurses are aware of this and
provide support for shared understanding of each other’s experience
(Weingarten, 2013).
Families in this study also held beliefs that encounters with health care
professionals was an ongoing struggle. Family members believed that they
had to fight to receive information and appropriate treatment. In this pro-
cess, they depended on each other. This is similar to Skär and Söderberg
(2012), who described that patients discussed their complaints about health
care professional encounters with relatives, but they did not find any solu-
tions to the problem. Conversely, good encounters within health care facili-
tate the perceptions of good quality care. Families in the present study also
had beliefs and expectations of receiving answers from health care profes-
sionals, and when their questions were not answered they became frustrated.
This has also been described in other studies (Robinson, 1998; Söderberg,
Olsson, & Skär, 2012), and frustration sometimes increased the power of
illness (Robinson, 1998). It is not only family members who have beliefs
about the encounter, but health care professionals also have beliefs about the
family, which impacts their relationship with the family and ultimately their
clinical practice (Wright & Bell, 2009). According to Friedman and col-
leagues (2003), different beliefs between the family and health care profes-
sionals can result in divergent goals, unclear communication, and
interactional problems.
Methodological Considerations
In this study, a secondary analysis was conducted on the research interview
transcripts with families living with chronic illness gathered in another study
(Årestedt et al., 2014). This was considered relevant as beliefs, stories, and
illness are intertwined, and it is within stories that beliefs are embedded
(Wright & Bell, 2009). However, it should be emphasized that we cannot
reveal all beliefs in the family, and this should be kept in mind when inter-
preting the result. This result is one way to understand illness beliefs in fami-
lies living with chronic illness, but even if the result is contextually bound, it
may be transferrable to other families. Transferability is enhanced by the
thorough description of the families. In addition, the possibility to uncover
beliefs on a family level was facilitated by the use of the IBM as a theoretical
frame and the definition and characteristics of what constitutes a belief. We
find this model to support the systemic approach of understanding family
beliefs when living with chronic illness.
Collecting data on a family level increases knowledge about family pro-
cesses (Eggenberger et al., 2011; Eggenberger & Nelms, 2007), and it also
serves the purpose to stimulate participants to co-create the family’s illness
story and increase opportunities for illuminating illness beliefs. This is also a
way to pay attention to the interaction between family members. In this study,
repeated research interviews were conducted to create room for interaction
between family members and between the family and the interviewer
(Eggenberger & Nelms, 2007). Repeated interviews gave the opportunity to
follow up and deepen certain areas, which made it possible to obtain data
richness.
In the interview situation, families spoke openly and were willing to share
their experiences with each other, even if their stories included new thoughts
that had never been discussed within the family. Participating in family inter-
views can be a beneficial learning experience for the family as they become
more aware of each other’s concerns. One limitation, however, could be if
family members are not able or willing to be open and share their experiences
with each other (Eggenberger & Nelms, 2007).
To strengthen credibility, the interpretations were discussed among the
co-authors and other researchers (Ahlström, Skärsäter, & Danielson, 2010;
Ericson-Lidman & Strandberg, 2009; Gustafsson & Strandberg, 2009).
Interpretations were continuously moving between the whole and the parts to
gain new understandings (Gadamer, 2004). According to Ayres et al. (2003),
analysis across families may contribute to the identification of themes and
how they are related to each other, whereas analysis within each family
makes it possible to only describe the illness beliefs in their context.
Throughout the process, efforts were made by the authors to stay as open-
minded as possible and continuously reflected to be aware of and expand
their pre-understanding as a useful part of the interpretation (Ödman, 2007;
Ödman & Kerdeman, 1997).
Relevance of the Findings for Clinical Practice With Families

Living with chronic illness is a challenging, ongoing, and shifting process for
families, and nurses have to be aware of the evolving and transforming illness
beliefs within the family so that they can become supportive and contribute
to family well-being.
Illness beliefs in families living with chronic illness can be revealed
within their illness stories during research and clinical interviews. We have
uncovered shared beliefs within the family in their co-created illness nar-
ratives. Therefore, we confidently offer the idea that the IBM can be used
to uncover not only individual beliefs but also family beliefs. Considering
that beliefs are unique and individual to each family, it is hard to offer
general implications for practice, but using the IBM (Wright & Bell, 2009)
is an appropriate way to highlight beliefs within families. Nurses have to
invite and make space to families to tell their stories, but also to let family
members reflect upon each other’s illness stories. Then beliefs can be
shared and altered and nurses can support families to consider new possi-
bilities and pay attention to resources within the family. It also seems to be
important for nurses to be aware that different beliefs can bring about simi-
lar actions. This awareness can strengthen the nurse–family relationship,
and it is important that the nurse has openness to each family’s unique ill-
ness story.
Conclusion
This study revealed some common family beliefs about illness, families, and
health care when living with chronic illness in the family. These family
beliefs add a greater understanding for how families deal with their daily life
in the midst of chronic illness. In addition, the uncovered family beliefs are
an important contribution to nursing care to develop therapeutic interventions
in collaboration with these families. This study also shows that the IBM in
addition to being a useful model for therapeutic interventions also is a suit-
able tool for research. Even though the analyses were inductive, the defini-
tion of beliefs in the IBM model guided our mission to detect not only
individual beliefs but also family beliefs.
Acknowledgments
We are grateful to all of the families who participated in the study. We are also grate-
ful to Dr. Lorraine Wright for her helpful critique of this manuscript, to Linnaeus
University for funding the study, and to Sofia McGarvey who revised the
language.
Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research,
authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research,
authorship, and/or publication of this article: We are grateful to Linnaeus University
for funding the study.
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Author Biographies
Liselott Årestedt, RN, MSc, is currently a doctoral student in the Department of
Health and Caring Sciences, Faculty of Health and Life Sciences, Linnaeus University
in Kalmar, Sweden. Her clinical and research interests focus on Family Systems
Nursing and families who are living with chronic illness. Her recent publications
include “Living as a Family in the Midst of Chronic Illness” in Scandinavian Journal
of Caring Sciences (2014, with C. Persson and E. Benzein).
Eva Benzein, RNT, PhD, is a professor in the Department of Health and Caring
Sciences, Faculty of Health and Life Sciences, and director of the newly created
Center for Collaborative Palliative Care, Linnaeus University in Kalmar, Sweden.
Her clinical and research interests focus on supporting families’ health and well-being
in all contexts and implementation of collaborative palliative care in clinical settings.

Her recent publications include “Preparedness to Care for Victims of Violence and
Their Families in Emergency Departments” in Emergency Medicine Journal (2013,
with J. Rahmqvist Linnarsson, K. Årestedt and C. Erlingsson), “Effects of a Support
Group Programme for Family Members of Patients With Life-Threatening Illness
During Ongoing Palliative Care” in Palliative Medicine (2013, with A. Henriksson,
K. Årestedt, B.-M. Ternestedt, and B. Andershed), and “Family Members’ Caregiving
Situation in Palliative Home Care When Sitting Service Is Received: The
Understanding of Multiple Realities” in Palliative and Supportive Care (2013, with
B. Wallerstedt and B. Andershed).
Carina Persson, RPT, PhD, is a senior lecturer in the Department of Health and
Caring Sciences, Faculty of Health and Life Sciences, Linnaeus University in Kalmar,
Sweden. Her clinical and research interests include Family Systems Nursing and pal-
liative care. She has a special interest in hermeneutics and development of collabora-
tive care. Her recent publications include “Family Health Conversations: How Do
They Support Health?” in Nursing Research and Practice (2014, with E. Benzein),
“‘You Put It All Together’—Families’ Evaluation of Participating in Family Health
Conversations” in Scandinavian Journal of Caring Sciences (2014, with E. Benzein
and C. Olin), and “Examining family responses to Family Systems Nursing interven-
tions: An integrative review” in Journal of Family Nursing (2014, with U. Östlund).

Families Living With Chronic Illness: Beliefs About Illness, Family, and Health Care

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and Health Care

Liselott Årestedt, RN, MSc1,

1Facultyof Health and Life Sciences, Linnaeus University, Kalmar/Växjö, Sweden

Previous Research About Beliefs and Illness

Table 1. Family Characteristics (n = 7).

Family 1 Woman, 50 Husband, 50 Sister-in-law, 48

development of new understanding. The analysis was continuously moving

Core beliefs Secondary beliefs

Beliefs About Illness

this can mean performing activities of importance although it is harder for

Sister-in-law: I think you have learned to enjoy the present too . . .

It is unfair to be affected by illness. This belief was mostly expressed by

When families experienced it as unfair to be affected by illness, they had

Beliefs About Family

Later in the interview,

Husband: There is a lot of talk about medications and a lot of talk about

Husband: No, sure I’ll take much more . . .

Families described how different family members’ upbringing affected

Person with illness: Unfortunately, sometimes it is like that, it just pops up

Beliefs About Health Care

Relevance of the Findings for Clinical Practice With Families

Declaration of Conflicting Interests

McCaffrey, G., Raffin-Bouchal, S., & Moules, N. J. (2012). Hermeneutics as research

in all contexts and implementation of collaborative palliative care in clinical settings.

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