EMPIRICAL STUDIES
12023
Living as a family in the midst of chronic illness
Liselott Årestedt RN (PhD Student), Carina Persson PhD, RPT (Senior Lecturer) and Eva Benzein PhD, RNT
(Professor)
School of Health and Caring Sciences, Linneaus University, Kalmar, Sweden
Scand J Caring Sci; 2014; 28: 29–37
Living as a family in the midst of chronic illness
Aims and objectives: The aim of the study was to illumi-
nate the meaning of lived experience of living as a family
in the midst of chronic illness.
Background: Chronic illness implies a change for both the
individual and the family. In this changed situation, all
family members seem to benefit from sharing experiences
and receiving support. Current research highlights the
individual patient’s or family member’s perspectives on
chronic illness, but family systems nursing (FSN) studies
are warranted.
Design: A qualitative design with a FSN approach was
chosen.
Method: Repeated qualitative narrative interviews with
seven families living with chronic illness were performed.
A phenomenological hermeneutic analysis, inspired by
Ricoeur, was used to interpret the data.
Results: The phenomenon can be described as an ongoing
movement towards well-being. The results included two
themes and five sub-themes. The first theme was ‘Co-
Introduction
Research about experiences of living with chronic
illness from an individual perspective implies a shift
with increasing demands and a changed situation for
the person with illness (1), as well as for spouses (2,
3). In this changed situation, persons with chronic
illness describe that fellowship and social interaction
are highly valued (4). There is also a wish to share
experiences of illness with others (5, 6) knowing that
they are not alone giving security (7) and give a
sense of belonging (4). Research focusing on spouses
also shows that support and sharing the burden with
family members can help to overcome obstacles and
problems (3).
Research focusing on couples living with various
chronic illnesses shows a common desire to accept and
Correspondence to:
Liselott

Arestedt, Linneaus University Kalmar, 391 82 Sweden.
E-mail: liselott.arestedt@lnu.se
© 2013 The Authors
Scandinavian Journal of Caring Sciences © 2013 Nordic College of Caring Science
doi: 10.1111/scs.
creating a context for living with illness’ with the subthe-
mes; ‘learning to live with the expressions of illness’ and
‘communicating the illness within and outside the fam-
ily’. The second theme was ‘Co-creating alternative ways
for everyday life’ with the subthemes; ‘adapting to a new
life rhythm’, ‘altering relationships’ and ‘changing roles
and tasks in the family’.
Conclusions: Living as a family in the midst of chronic illness
can be described as an ongoing process where the family
members co-create a context for living with illness. They
also co-create a context for alternative ways of everyday life.
Relevance to clinical practice: Knowledge about lived experi-
ence of living as a family in the midst of chronic illness
can help nurses to adopt a FSN care perspective. This can
increase the chances of taking advantage of the ways
family members manage situations together, as well as
highlight resources within the family.
Keywords: chronic illness, family, family systems nurs-
ing, lived experience, phenomenological hermeneutics.
Submitted 13 September 2012, Accepted 25 November 2012
manage the illness (8–10) as well as being emotionally
supported (9). Couples strive for normalisation and to
regain balance in their lives (8, 10, 11) and to find a
mode together with renegotiation of tasks are a com-
mon challenge (12). Becoming creative and finding
solutions together are important for couples, and
altered responsibilities provide an opportunity to deepen
their relationship (13). Some couples discover a new
meaning of their shared life, and sometimes, the illness
brings them more closely together (11). One study
using a family approach describes the process where
families recognise the vulnerability and reality of
chronic illness, try to adapt to reality and make choices
in relation to their experiences of chronic illness. In
this ongoing process, called reintegration, families start
to use intentional caring strategies and a commitment
within the family to enhance current and future family
life evolves (14).
In summary, in spite of living with chronic illness is
a family affair, previous research has focused on an
individual perspective (15, 16). Thus, studies with a
29
30 L. Årestedt et al.
family perspective are warranted. Therefore, the aim of
this study was to illuminate the meaning of lived expe-
rience of living as a family in the midst of chronic
illness.
Family systems nursing
The underlying nursing theory in this study is family
systems nursing (FSN) where nursing takes on a sys-
temic, interactional and reciprocal perspective. This
approach is a shift from an individualistic orientation
to a family orientation which means that the family
is the unit of care, that is, both the individual and
the family system are focused simultaneously. Families
are composed of several interdependent subsystems,
which form a unity that is different from and more
than the sum of the family subsystems. FSN focuses
on interactions within the family; how changes in
one member are related to changes in other family
members and in the family as a whole (15, 16). In
addition, FSN also emphasises family as an open sys-
tem in constant interaction with the environment in
which the family is enrolled. Families receive and give
mutual informational exchange with other systems,
such as working colleagues and persons in the health
care system (2).
Another important thing in FSN is the significance of
beliefs. Beliefs constitute the ground for how we view
the world, guide us in choices we make, behaviours we
choose and feelings with which we respond. When
illness emerges our beliefs becomes affirmed, challenged
and/or threatened, it is not necessarily the illness itself
but rather beliefs about the illness that serve as the great-
est source of family suffering.
Nursing practice occurs within a relationship between
the family and the nurse. Suffering can decrease if the
nurse help family members to express new understand-
ings and meanings about the illness experience (17). In
FSN, change and health promotion co-evolve in relation-
ship between the family and the nurse, and interventions
are offered with a systemic and interactional perspective
(16, 17). Every family is seen as unique with its own
strengths and resources, which the nurse can illuminate
and support (16).
Family
When the family is the unit of care, the definition of
family as a concept becomes important. In this study,
and in accordance with a systemic perspective, the con-
cept of family is defined as a self-defined group of two or
more individuals who are, or are not, bound by blood
ties or law, but function in a way that makes them feel
they are a family (18). This definition opens up for vari-
ous constellations of families.
Scandinavian Journal of Caring Sciences © 2013 Nordic College of Caring Science
Method
Design
A family systems nursing approach was used for the
study. A phenomenological hermeneutic analysis method
(19), inspired by the philosophy of Ricoeur (20), was
chosen to uncover the meaning of lived experience of
living as a family in the midst of chronic illness through
interpretation.
In this study, ‘chronic illness’ is defined as the irrevers-
ible presence, accumulation or latency of disease states or
impairments that involve the total human environment
for supportive care and self-care, maintenance of func-
tion and prevention of further disability (21).
Participants
A purposive sample of families was recruited. The inclu-
sion criteria were as follows: Swedish-speaking families
where an adult family member had lived with chronic
somatic illness for more than two years and having at
least two family members to invite to the interview.
The exclusion criteria were as follows: cognitive or
speech disorders and persons in palliative care at end of
life.
Participants were recruited through information given
by nurses and public advertising at a medical clinic in
one hospital and two district health care centres in a
town with approximately 60 000 inhabitants in the south
of Sweden. Those interested in participating contacted
the first author (L

A) themselves or via a nurse who med-
iated the contact. They were then given oral and written
information about the study. Interviews were subse-
quently scheduled with those wanting to participate. The
study participants consisted of seven families, all Swed-
ish-born. The ill persons had lived with illness between
2, 5–39 years and all, except one, could manage activities
of daily life by their own. Their characteristics are shown
in Table 1.
Data collection
Data were collected using narrative family interviews
(22), conducted by the first author (L
A) between June
2010 and April 2011. The ill person and his/her family
members were interviewed together twice during a per-
iod of 2–4 weeks to increase the possibility to obtain rich
data. All interviews except one took place in the partici-
pants’ home. One interview took place at the author’s
workplace. The tape-recorded interviews lasted from 30
to 75 minutes and were transcribed verbatim.
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 FSN approach and to
© 2013 The Authors
 Living as a family in the midst of chronic illness 31

Table 1 Family characteristics (n = 7)

Person Family member (age, Family member (age, Family member (age, Family member (age,
Family with gender and relation gender and relation gender and relation gender and relation
members illness * to person with illness) to person with illness) to person with illness) to person with illness)

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

Family 2 Man, 50 years Mother, 74 years Father, 76 years Man, 50 years, Friend/ –
personal assistant
(took part in the
first interview)
Family 3 Man, 32 years Wife, 32 years Mother, 57 years – –
Family 4 Woman, 54 years Husband, 57 years – – –
Family 5 Woman, 44 years Husband, 47 years Son, 13 years (took part Daughter, 11 years Sister, 38 years (took
in the first interview) (took part in the part in the second
first interview) interview)
Family 6 Woman, 46 years Daughter, 19 years Partner not living in the – –
same domicile as the
person with illness, man, 57 years
Family 7 Woman, 80o yrs Husband, 82 years – – –

*The persons with illness were diagnosed with either diabetes, whiplash, stroke, multiple sclerosis, COPD, muscular dystrophy, renal failure or
rheumatism.

obtain variations and co-create stories, families were
asked to reflect on each other’s stories. Circular questions
(23) such as ‘What do you think when you hear your
father tell us about that?’ and ‘Do you remember the sit-
uation your sister just told us about, how was it for
you?’ were used. 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.
Data analysis
The interpretation of the text consists of dialectic move-
ments between understanding and explanation and
includes three phases; na€ıve understanding, structural
analysis and comprehensive understanding (19).
First, the text was read and reread several times to
grasp the meaning of the text as a whole. This resulted
in a formulation of a na€ıve understanding, which guided
the structural analysis. This phase aims to decontextualise
the text to explain what the text talks about (19). There-
fore, a thematic structural analysis was performed, where
the text was divided into meaning units, condensed,
abstracted and organised in subthemes and themes. To
maintain a FSN approach, questions focusing on relation-
ships and interactions in and outside the families were
asked to the text. Then, the themes and subthemes were
reflected upon to validate or invalidate the na€ıve
understanding.
The third phase, the comprehensive understanding,
aimed to achieve a critical in-depth interpretation of the
© 2013 The Authors
Scandinavian Journal of Caring Sciences © 2013 Nordic College of Caring Science
recontextualized text (19). In this phase, the na€ıve
understanding and structural analysis were woven
together to reach a comprehensive understanding of the
whole in relation to the authors′ pre-understanding, the
research question and relevant literature.
Ethical considerations
Ethical approval was obtained from the Regional Ethical
Committee (D-nr: 2010/51-31). In accordance with the
intentions of the Declaration of Helsinki (24), partici-
pants gave written consent after receiving written and
verbal information about the study, including the
purpose and procedures, the voluntary nature of partici-
pation and the option to withdraw at any time. Partici-
pants were guaranteed confidentiality and secure data
storage.
Respect for privacy was taken into account in the
interview situations by not pressing the interviewees to
telling more than they were comfortable with. The inter-
viewer was also prepared to refer interviewees to profes-
sional help if needed.
Results
Na€ıve understanding
Living as a family in the midst of chronic illness can be
described as an ongoing movement towards well-being,
where individual family members cooperate and influ-
ence each other, both within and outside the family. Due
to changes related to the illness, families encounter both
new and different situations and create new patterns for
32 L. Årestedt et al.
family functioning. In this ongoing movement, closeness
and being there for each other seem important.
Structural analysis
The structural analysis resulted in two themes and five
subthemes; ‘Co-creating a context for living with illness’
(Learning to live with the expressions of illness and
Communicating the illness within and outside the fam-
ily) and ‘Co-creating alternative ways for everyday life’
(Adapting to a new life rhythm, Altering relationships
and Changing roles and tasks in the family).
Co-creating a context for living with illness
Learning to live with the expressions of illness. Living as a
family with chronic illness creates a need for families to
get to know the illness and learn how it manifests itself.
Families strive for a ‘flow’ in everyday life and being able
to manage new situations, something which appears to
be more important than striving for life that way it was
before the illness. To enhance smooth family functioning,
it seems important that family members become inven-
tive and co-develop alternative ways of acting, including
encouraging each other to do things but also to dare to
say no. However, this takes time and happens gradually.
In this challenging situation, families acknowledge and
find it helpful to consider each member’s way of thinking
about the illness. Families also become sensitive and
develop ideas on how to handle various expressions of
illness over time which is consciously discussed in the
family. For example, family members and the person
with illness mutually look for signs indicated if they want
to be alone or want company or support. After having
lived with illness for a longer period of time, the illness is
not always on the family members’ minds. Occasionally,
when the illness manifests itself very clearly, feelings of
frustration and fear can be aroused. An example of this is
illustrated in the following quotation:
Daughter: But I don′t think that one is angry because
she doesn′t sit straight or not…
Partner: No.
Daughter:… it′s more because it′s then you recognise
that she is ill…
Partner: Yes.
Daughter: It′s the same when mum fell….she stum-
bled and cracked her lip…
Person with illness: Yes.
Daughter: When I came home and found her…bloody
and then, then I get angry…because one feels afraid, I
think…
Partner: Yes you become afraid.
Later, the person with illness responds:
…my handicap, disorder is sometimes diffuse …and I
have been eh…a bit stubborn and regaining my
Scandinavian Journal of Caring Sciences © 2013 Nordic College of Caring Science
functions, but it doesn′t mean that everything is ok
and like my daughter says sometimes it becomes obvi-
ous that mum is…eh…ill. (Family 6)
Families develop various ways of acting to mainte-
nance activities related to the manifestations of the
illness. Family members described that activities were
sometimes adapted and located to the home, due to the
family member with illness comfort and because it made
it easier for other family members to participate. Some-
times the person with illness participated in planned
activities even if he/she knew that it would cause him/
her more suffering afterwards. Sometimes other family
members carried out planned activities without the fam-
ily member with illness.
Families perceive healthcare professionals as one possi-
ble source for getting to know and manage the illness.
Families received general information on how the illness
usually manifests itself. However, they wanted more but
also different information and to share their expressions
of illness in dialogue with the professionals. Lack of
needed information and support aroused feelings of
uncertainty but also meant that family members them-
selves searched for information in newspapers, on the
Internet and from friends. This seemed to bring them clo-
sely together.
Communicating the illness within and outside the family. Living
as a family with chronic illness is to balance communica-
tion about the illness which means to talk about it but
not in an excessively way. Communicating thoughts and
feelings both within and outside the family seems
important for the well-being of families and contributes
to ‘being in health’. Talking about current experiences of
illness, but also individual family members’ previous
experiences of illness, increase family members’ under-
standing of each other and of the situation as a whole.
On the other hand, it seems important to refrain from
talking about the illness as this seems to keep families ‘in
illness’. Individual preferences of communicating illness
also need to be balanced within the family because some
members need to dwell and talk a lot, while others want
to talk things through just once. The following conversa-
tion was held by a couple, where the woman suffered
from illness:
Person with illness. Yes, I have to say, to have someone
close…I always have my husband if I want to talk, but
sometimes I feel that I won′t talk about everything with
him, maybe I can talk to someone else, to relieve him a
bit. I feel that we are living, he and I, the illness all the
time…but then I think that he isn′t always listening
(laugh) sometimes he can switch off.
Husband: Yes…I think it′s so…
Person with illness: When it turns to nagging.
Husband: It may be so, you don′t listen all the time…I
think.
© 2013 The Authors

Person with illness: You feel it, when you need to talk
more, then you feel good, then you are more in the
healthy life. (Family 1)
Families also communicate illness and share their
experiences with others, outside the family who have
been in similar situations. For example, the family mem-
ber with illness may turn to patient associations where
everyone is familiar with the manifestations of illness.
This communication needs to be balanced; it can be posi-
tive to talk with others in the same situation, but there
can be too much focus on illness and suffering.
Co-creating alternative ways for everyday life
Adapting to a new life rhythm. Finding a new rhythm in
life is a challenge for families living with chronic ill-
ness.Families create a slower pace, for example, by limit-
ing activities or by scheduling more time for activities
than before. This new rhythm also embraces a change
towards being more focused on the present. Even if
thoughts about the future can inspire hope and provide
an opportunity for the family to set new goals, there is
an ever-present uncertainty about the future, which may
reduce their sense of well-being. Therefore, a strategy to
focus on the present is developed.
Wife: I think probably we lived mainly in the present,
now it′s like this, and you were in the present all the
time. I don′t know whether we thought so much
about the future then.
Person with illness: No, we have never thought like
that, it′s now that counts. There is no point thinking
of what will happen in the next six months, you take
it as it comes all the time…
Mother: Yes, you are exceptional at doing that while I
worry about what will happen in the future.
Wife: You have to live in the present, you take it for
what it is and then you′ll see what it becomes, it′s
nothing to think about… (Family 3)
Family members described that the new rhythm
could give them more time together, which is per-
ceived as positive. However, at the same time, it can
be experienced as frustrating to be forced into a new
rhythm, where the illness limits the family from doing
things at the same pace as before. Family members also
described that the new rhythm made them plan smal-
ler projects together rather than large ones, as they
would have performed previously. They could abstain
from foreign trips in favour of inviting friends for din-
ner and just be together. One family perceived the
new rhythm as both positive and frustrating in the fol-
lowing way:
Person with illness: But I think it works well, when we
went to [a city]…because then you are prepared for it,
that you can go home, take it a bit easier…you can go to
the hotel for a while…
© 2013 The Authors
Scandinavian Journal of Caring Sciences © 2013 Nordic College of Caring Science
Living as a family in the midst of chronic illness 33
Husband: And we are the family, we do it at our
pace…,and we don′t panic about having to be the
shops when they open…
…
Daughter: Positive…it must be a positive that we′re
planning more now, before it was like…suddenly it
was, yes now we′re going to the summer house.
Person with illness: Yes, you are like that, you want
to plan everything, you want to know, you want to
be structured…
Later in the interview:
Daughter: Maybe on Fridays, maybe you…before…
had guests over and went out sometimes and then
maybe you went to a football cup or something and
then to the summer house on Sunday …it′s…she defi-
nitely doesn′t manage that…every day of the
weekend.
Person with illness: No.
Daughter: It depends on what you are doing…if it′s a
quiet activity.
Person with illness: I feel it′s more that…I have to
prepare more…than I needed to before, it′s frustrating
for everyone. (Family 5)
Altering relationships. Living as a family with chronic ill-
ness means altering relationships both within and outside
the family. In parallel with getting to know the illness
and the expressions of it, family members also have to
get to know each other again, in a new way. Some rela-
tionships become stronger during a certain period while
others become weaker. Due to the person with illness
spending more time at home, family members described
a frustration over being forced to suddenly having to
meet members on daily basis, whom they had not previ-
ously been in much contact with. However, spending
more time with each other may also contribute to a
greater sense of fellowship. One daughter described the
altered relationship:
‘I have to get to know mum in a new way, because
she is at home every day…and it has been hard because
I′m used to do things my own way…It′s hard to really
get to know each other, before we weren′t that close’.
Later the daughter went on talking about the relation-
ship with her mum:
‘It′s also good…in some ways…It′s good to have a
mum who cares…better than a mum who doesn′t have
time to care.’ (Family 6).
Although relationships in the family are changed,
being understood by the others and being allowed to be
yourself seem important to family members. This facili-
tates for family members to show feelings of joy and
sorrow to each other, without thinking about the illness.
It also seems important for the person with illness to
know that other members of the family do not avoid
him/her because of the illness. However, sometimes the
34 L. Årestedt et al.
person with illness chooses not to show his/her feelings
to avoid worrying the other family members or making
them feel sorry for him/her. When new situations arise
due to illness, supporting each other, both in a practical
and emotional way, seems to be more important to the
family than before.
Relationships with people outside the family are also
described by family members as being altered. Neigh-
bours and co-workers as well as health professionals may
also provide support. Furthermore, laws and regulations
may affect the ability to maintain relationships in the
family. When family members are expelled due to laws
and regulations, they are excluded from normal family
get-togethers.
Changing roles and tasks. Roles and tasks, within families
previously perceived as ‘normal’, such as being responsi-
ble for the children or housework, are changed due to
illness. There is a common expectation among families
that those living in the same household should help each
other more than those living outside it. There is a con-
stant flow in sharing demands in the family, one takes
and one gives, and family members may view these
changes as something they become accustomed to and a
natural part of everyday life. The change in tasks can be
liberating, for example, when families have to think dif-
ferently and lower their standards regarding tasks such
as cleaning and gardening in favour of other things,
which they appreciate more. Family members also
described that changes in tasks can make the person
with illness feels like a burden, for example, during peri-
ods when the other family members have to take on
more responsibilities. Families try to balance the pros
and cons and discuss various options with each other.
When roles are altered, for example, when children
care for a parent, an unfamiliar situation arises both for
the person needing help and for the helper. Another
change is when one family member takes on the role of
primary caregiver. This can be perceived both as positive
and negative by other members in the family. Balancing
being a caregiver and a family member seems important.
On the one hand, being helpful can bring joy and satis-
faction as well as being experienced as a natural part of
life. On the other hand, it may also be difficult to take
on a caregiving role as this generates new demands and
expectations in the family.
Comprehensive understanding and reflections
Comprehensive understanding is based on the na€ıve
understanding and the structural analysis and is reflected
upon in the light of Newman’s (25–28) theory of ‘Health
as an expanding consciousness’ (HEC) and Paterson’s
(29) ‘The shifting perspectives model of chronic illness’.
Scandinavian Journal of Caring Sciences © 2013 Nordic College of Caring Science
Living as a family in the midst of chronic illness can be
seen as an ongoing process towards well-being, where
families have the power to co-create a context for living
with illness and co-create alternative ways for managing
everyday life. According to Newman’s theory, this can be
described as an ongoing process towards an expanding
consciousness. Newman describes health as a pattern of
the whole and patterning including movement, diversity
and rhythm, which is in constant motion or change.
Expanding consciousness can be described as being able
to live with illness in a new way, where illness is not
seen as a separate entity but as a manifestation of the
evolving pattern (25). The result shows that families
move towards well-being, a process which starts when
someone in the family is affected by chronic illness and
the family encounters new situations. Then, old strategies
do not longer work. Newman (25) states that when a
pattern manifested by illness occurs, new types of solu-
tions need to be found. Consequently, the family starts
to reflect and recognise the expressions of illness, and it
seems important to talk about them both within and out-
side the family. By focusing on the illness, a person can
learn about it, reflect upon the situation and come to
terms with it (29). How the family members talk to each
other about illness also seems to be important. Learning
and talking about other family members’ ways of think-
ing can be useful in the process of getting to know and
managing the illness. Then, families start become inven-
tive and develop alternative ways of acting together.
According to the theory of HEC, this can be understood
as the family coming to a turning point in life and having
to recognise and be aware of the illness pattern. They
can then be more open to others, both within and out-
side the family (26).
The movements towards well-being go on despite the
presence of the expressions of illness. Paterson (29) sug-
gests that families strive for a wellness in the foreground
perspective. Living with chronic illness is viewed as an
ongoing continually shifting process between wellness in
foreground and illness in foreground with the two per-
spectives overlapping. The results also show that relation-
ships within families are affected due to illness. Family
members choose to surround themselves by people who
allow them to be themselves. Consequently, according to
Paterson (29), living with illness is a complex dialectic
between individuals and their world, and the person with
illness often chooses to surround him/herself by people
who share their perspective (ibid). This can also be inter-
preted as families discovering a common consciousness
and rhythm. When viewing the relationship from within,
the emerging shared consciousness and the forming of a
new rhythmic pattern of combined fields can be recogni-
sed (28). The results also show that being allowed to be
oneself within the family means being allowed to be in
both wellness and illness and sometimes in between these
© 2013 The Authors

two perspectives. The person is brought into focus rather
than the illness. Paterson (29) highlights that by focusing
on wellness; the self becomes the source of identity,
whereas from an illness perspective, the disease becomes
the identity. A wellness perspective can help a person
focus on other aspects of life to a greater extent than pre-
viously. A sense of appreciation of life and loved ones can
be renewed and provide opportunities for a meaningful
change in relationships with others (ibid).
Living as a family in the midst of chronic illness also
means focusing on the present while still having consid-
eration for the past and the future. According to the
theory by HEC, this can be understood as the family
getting in touch with their family pattern from a
diachronic perspective. Thus, they can reach a new level
of stabilization and vision for the future and feel confi-
dent in their future instead of focusing on this difficult
situation (27). Living in the present can also enable the
family to talk about the illness, and an awareness of
alternative patterns may emerge. The power of families
to co-create a context for living with illness can be
described as a shift from viewing the family as a victim
of circumstances to a creator of circumstances (29). In a
relationship, this shared experience is important to be
fully present and to be able to reach an expanding
consciousness (28).
Methodological considerations
Previous research about families living with chronic ill-
ness has mainly been conducted using data on an
individual level (30). However, collecting data on a
family level increase knowledge about family processes
(14). In this study, repeated interviews were performed
to create room for interaction between family members
and between the family and the interviewer (22).
Repeated interviews can also make it possible to go dee-
per into certain areas about the phenomenon (31). The
obtained richness of data enhanced the credibility of this
study (32).
Collecting data on a family level also serve the purpose
to stimulate participants to co-create their illness story
and increase opportunities for illuminating a FSN per-
spective. In the interview situation, families seemed to
speak openly and were willing to share their experiences
with each other, even if their stories included new
thoughts that they had never talked about within
the family. Participating in family interviews can be ben-
eficial to the family as they become more aware of each
other’s concerns (22).
Two families were represented by two members each
(one member had moved abroad a few days before the
interview, and the second family did not have a third
© 2013 The Authors
Scandinavian Journal of Caring Sciences © 2013 Nordic College of Caring Science
Living as a family in the midst of chronic illness 35
member to invite). These interviews were however
included in the study as they included meaningful family
relational data.
In this study, rigour was established by following and
describing, the steps of the method (19) as carefully as
possible, as well as using quotations to validate the result.
According to Ricoeur (33), it is always possible to argue
either for or against an interpretation. To strengthen
credibility, the interpretation was discussed among the
co-authors and other researchers (32, 34, 35). Through-
out the process, efforts were made by the authors to stay
as open-minded as possible about the phenomenon, both
in the interview situation and throughout the analysis
process. In addition, the authors continuously reflected
to be aware of and expanding our pre-understanding as a
useful part in the text interpretation (19).
The transferability of the study is possible to similar
settings (33).
Conclusion
Living as a family in the midst of chronic illness is a chal-
lenging life situation where family functioning, commu-
nication and roles are altered. Such changes in family life
may challenge family members’ beliefs about the illness
and about family life. One way of experiencing family
well-being is to become aware of existing patterns and
collaborate in creating new ones that better suit the
existing situation.
Relevance to clinical practice
Knowledge about the lived experience of living as a fam-
ily in the midst of chronic illness calls for a focus shift in
clinical practice. By applying FSN care, nurses can pro-
mote both patient and family well-being. One model for
family support is to invite families to take part in health
promoting conversations. This can aid family members to
manage the situation as well as highlight resources
within and outside the family.
Acknowledgements
We are grateful to all families who participated in the study.
We are also grateful to Linnaeus University, that funded
the study and to Sofia McGarvey who revised the language.
Author contributions
L

A, CP, EB are involved in study design, data collection/
analysis and drafting of manuscript. CP, EB are involved
critical revisions for important intellectual content and
supervision.
36 L. Årestedt et al.
Ethical approval
Ethical approval for the study was obtained from the
Regional Ethical Committee, Link€
oping, Sweden (D-nr:
2010/51-31).
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