Open Journal of Nursing, 2013, 3, 379-388 OJN Published Online September 2013 (
Constructing family identity close to death
Ida Carlander1,2, Britt-Marie Ternestedt1,3, Jonas Sandberg1,4, Ingr i d Hel l st rö m 1,5
1Palliative Research Centre, Ersta Sköndal University College & Ersta Hospital, Stockholm, Sweden
2Department of Learning, Informatics, Management and Ethics, Medical Management Center, Karolinska Institute, Stockholm,
3Research and Development Unit, Stockholm Sjukhem Foundation, Stockholm, Sweden
4Jönköping Department of Nursing, School of Health Science, Jönköping University, Jönköping, Sweden
5Department of Social and Welfare Studies, Linköping University, Norrköping, Sweden
Received 28 June 2013; revised 28 July 2013; accepted 15 August 2013
Copyright © 2013 Ida Carlander et al. This is an open access article distributed under the Creative Commons Attribution License,
which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Daily life close to death involves physical, psycho-
logical, and social strain, exposing patients and their
family members to major transitions affecting rela-
tional patterns and identity. For the individual family
member, this often means sharing life with a chang-
ing person in a changing relationship, disrupting both
individual identity and family identity. Our aim was
to deepen the understanding of individual experiences
that are important in constructing family identity
close to death at home. We performed a secondary
analysis of qualitative data collected through 40 in-
terviews with persons with life-threatening illness and
the family members who shared everyday life with
them. The analysis resulted in interpretive descrip-
tions which provided three patterns important for
creating family identity, which we here call “we-ness”
close to death. The patterns were: being an existential
person, being an extension of the other, and being
together in existential loneliness. Together, these
three patterns seemed to play a part in the construc-
tion of family identity; we-ness, close to death. One
important finding was the tension between the search
for togetherness in “we-ness” while dealing with an
existential loneliness, which seemed to capture an
essential aspect of being a family of which one mem-
ber is dying.
Keywords: Dying; Identity; Family; Palliative Care;
Secondary Analysis
This article is based on human experiences of everyday
life at home, when one person in the family is severely ill
and dying. We focus on central concepts such as identity,
death, and togetherness. In the context of palliative
homecare, daily life for both patients and their family
members means facing physical, psychological, and so-
cial strain. For the family member, it also means sharing
life with a changing person in a changing relationship.
Life-threatening illness causes a rupture in a well-estab-
lished rhythm [1], marking a transition and simultane-
ously a time of limbo [2]; the result of this is a d isruption
in identity. According to Schumacher and Meleis [3], the
concept of transition can be useful when exploring the
experience of individuals facing periods of instability, for
example when a family member is dying. Family mem-
bers are often involved in caregiving in several ways,
and have to deal with a series of new events which might
occur either suddenly, or gradually over a longer time.
The ill person’s body may be attached to medical devices
or tubes, and may need potent drugs and a number of
auxiliary devices. The care team enters the home, bring-
ing these materials, drugs, and auxiliary d evices; this not
only impacts on family life, but also sometimes changes
the home environment itself [4]. In this changed every-
day life, the focus shifts to the dying p erson’s illness and
treatment, which affects all involved emotionally, so-
cially, and physically [5]. Family caregivers, for example,
have been shown to suffer from sleep deficit [6]. Despite
distress and burden, many people prefer to live and die in
their own homes [7,8]. From the perspective of family
members, caring is often described as something natural
and, despite the strain, well worthwhile [9-13], at least
from a retrospective perspective [14].
For both the dying person and their family members,
living close to death means being aware of and dealing
with one’s own finitude. Jaspers [15] refers to death as
one of mankind’s existential limitations, and uses the
term “border situations” to describe confrontations with
impending death. Spiritual and existential needs become
especially prominent during life close to death [16-19].
I. Carlander et al. / Open Journal of Nursing 3 (2013) 379-388
Death itself is seen as an individual event, but one that
must be dealt with in the family and social network. So-
cial relations are of essential importance for wellbeing in
end-of-life care [20,21]. When closeness to death be-
comes a part of everyday life, it can be difficult to remain
the “same family as before” [22,23]; in such situations,
family members face the loss of both their mutual future
[24] and the image of themselves as a family [25]. Eve-
ryday life close to death means that previous patterns of
doing things together will not always work, and may
need to be rethought [2 5,26].
In an earlier project studying families’ everyday life
close to death, we developed two concepts which we
found useful in exploring identity work within these
families: me-ness and we-ness [author]. Me-ness was
used to describe individual identity, regardless of whether
the individual in question was the ill person or a family
member, and we-ness was used to describe a group iden-
tity embracing the ill person and their closest family
members. Erikson [27] argues that identity is developed
in a complex social context, and is a configuration of the
self that develops over time; it is not fixed and frozen.
Hence, we-ness could be seen as a collective identity
present in the shared and interactive experiences of eve-
ryday life close to death [25]. It is likely that the sense of
we-ness might shift over time, to include more or fewer
Studies in palliative care describing positive aspects of
relations at the end of life have found togetherness to be
a relevant concept in terms of relations between family
members, friends, professional caregivers, and other pa-
tients [28-35]. According to Milberg and Strang [36],
togetherness involves trust, shared responsibility, and
being a resourceful contributor to the care process. To-
getherness has also been described as the opposite of
social loneliness and isolation [36-38]. Togetherness and
belonging could be examples of positive feelings which
make family membership meaningful and characterize a
sense of group identity. Even though being close to fam-
ily members and sharing togetherness have been found to
be important when one family member is dying, there
have been few and sparse explorations of the aspects of
individual experiences that are important in constructing
family identity close to death. Hence, the aim of this
study was to deepen the understanding of individual ex-
periences relevant to constructing family identity; we-
ness, close to death at home.
This study is based on a secondary analysis of interview
data collected in 2004 and 2008 [14,22]. Initially, the
qualitative data used here was used through two distinct
inquiries that fo cused on similar to pics using comparable
research methods. The overall aim was to advance un-
derstanding about family members’ everyday life close to
death at home, with a focus on identity (Table 1). In
qualitative second ary analysis, the potential of one’s own
data has been recognized [39]. Secondary analysis is
thought to be an appropriate approach when the intention
is to answer extended questions [40]. For this current
paper, both sets of data were reanalyzed to answer ques-
tions related to experiences relevant for constructing
family identity in daily life close to death. During the
analyses, we kept the focus on the individual’s experi-
ence on the shared everyday life. The analysis was un-
derpinned by the idea that narratives are connected to the
construction of both an individual and a group identity
2.1. Participants
The sample from 2004 consisted of ten family caregivers
who had cared for a diseased family member at home
6-12 months earlier, all of whom were interviewed indi-
vidually. The sample from 2008 covered five families,
from which 5 patients and 14 family members (Ta ble 2)
participated in 30 interviews (18 individual, 8 couple,
and 4 family interviews with 3 to 4 persons) with differ-
ent time gaps of 2 to 18 months between the first inter-
Table 1. Original studies.
Study Opening question
Data, period
of sampling Results Data analysis
[14] Can you tell me how your
life was when X was ill? Interviews with 10 family
caregivers 2004
Three patterns characterized the
experiences: “challenged id e a l s ” ,
“stretched limits” and
“interdependency ”. These patterns
formed the core theme: the modified
Interpretive description
[22] Can you tell me about your
current life situation?
Interviews with 5
patients and their 14
fa mil y membe r s
We found two patterns: “being me in
a family living close to death” and
“being us in a family living close to
death” while “striving for t he optimal
way of living close to death”
presented as the core theme.
Interpretive description
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I. Carlander et al. / Open Journal of Nursing 3 (2013) 379-388 381
Table 2. Characteristics of study participants.
Characteristics 2004 2008 Total
Male 3 8 11
Female 7 11 18
5 - 15 3 3
>29 1 1
30 - 39 1 1 2
40 - 49 4 5 9
50 - 59 0 6 6
60 - 69 4 1 5
>70 1 2 3
Cancer 3 3
Heart disease 2 2
Ill person 5 5
Child 3 5 8
Grandchild 1 1
Sibling 1 3 4
Partner 6 5 11
view and last for each family. All 40 interviews took
place at a location of the participants’ choice, often
around the kitchen table in their homes. The interviews
lasted between 1 and 2 hours, and were recorded and
transcribed verbatim. The opening question was: “Can
you tell me about your daily life?” The interviewer then
asked probing questions to explore and gain a deeper
understanding of the situations and experiences that the
participants considered challenging, as well as those that
they considered to promote wellbeing in their life situa-
tion. The first author (I.C.) conducted all the interviews
except for five interviews performed in 2004. A full de-
scription of the study procedures is published elsewhere
[author]. All participants lived in a middle-class neigh-
borhood consisting of multiple dwellings in a large city
in central Sweden. The participants had access to ad-
vanced palliative home care. All individuals who were
asked agreed to participate in the project. Written consent
was obtained from all participants, and the study was
approved by the Ethics Committee of the Medical Fac-
ulty in Stockholm (ref: 04-047/2) and the Regional Ethi-
cal Review Board in Uppsala, Sweden (ref: 2008/051).
2.2. Analysis
An interpretive description approach [39,42-44] was se-
lected to guide the thematic, secondary analysis of the
data set of 40 interviews. All interviews contained rich
descriptions of how family members handled daily life
close to death. During the exploration of the phenome-
non of family identity construction, the following broad
research question guided the analysis: what characterizes
the individual experience in a family close to death? The
inductive analysis was performed via a cyclic movement
between all data, and between cases. Although the analy-
sis did not proceed entirely in a step by step fashion, the
following procedures guided the analysis. The research
question directed the reading. Broad-based codes and
descriptions were produced to enhance the initial inter-
pretation. Next came a systematic analysis of the de-
scriptions which had similar meanings and seemed to be
thematically linked. The resulting interpretations were
examined and grounded in the data set; the three dimen-
sions were na m e d as part of t hi s procedure.
We found three interconnected patterns conceptualizing
aspects of individual experiences relevant for construct-
ing family identity close to death at home. The first,
“being an existential person”, describes the need to be
seen and respected as a person living close to death. The
second, “being an extension of the other”, covers both
the fundamental and insightful practical work that takes
place, and a responsibility for problems arising in rela-
tion to the ill person’s uncooperative physical and some-
times mental functions. The third pattern, “being together
in existential lon eliness”, exemplifies ho w being together
can sometimes alleviate the suffering and grief connected
with life close to death. Th ese three aspects of individual
experiences were connected to the construction of family
identity: we-ness (see Figure 1).
Figure 1. Patterns conceptualizing aspects of experiences rele-
vant for constructing family identity close to death at home.
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I. Carlander et al. / Open Journal of Nursing 3 (2013) 379-388
3.1. Being an Existential Person
The first pattern of individual experiences was seeing
oneself as a person close to death, regardless of whether
one is the dying person or another family member. The
dying person was in transition to being dead—something
unknown—and this situation brought thoughts on exis-
tential matters to the surface. Facing up to the end of
one’s existence was a lonely task, but being a family of-
fered the opportunity to deal with everyday life close to
death together. On some occasions, the exploration of
existential questions led to thinking of loved ones who
had alread y died.
One dying man spoke about his thoughts regarding life
after death:
I have a very strong belief that when I die I
dont believe it will be painful in any way. It will be more
of a relief. Then you end up then Ill see my grandfa-
ther and grandmother and other relatives. And yes, meet
Jesus and God, and ask forgiveness of the angels who
had to wh o have worked so hard to keep me alive.
This man’s existential and religious values were
brought to the fore by his limited remaining life, and the
construction of we-ness went beyond his living family.
The narrative could be interpreted as a transcendent ex-
perience—as being in contact with higher values—but he
is also being comforted by the thought of meeting close
relatives who had moved to the state of being dead be-
fore him, maybe giving him hope of a prolonged exis-
tence after death. The family members had to deal with
the knowledge that one person in the family would die
soon while the others continued living, involving a role
transition for those who would become, for example,
widowed or parentless. This gave a new meaning to the
experience of everyday life, and created insecurity and
uncertainty among all family members. Both the dying
person and their family members tried to integrate their
earlier self-image with the new role of a person receiving
and/or giving care, while trying to keep their relationship
intact. A sister gave an example of this:
he had trouble understanding what he was sup-
posed to do with those diapers He put them on but still
peed [urinated on] himself. When he had peed through
them I thought it was very, very difficult, because it
was so private. It was difficult, as a sister, to try to get it
to work for him.
However, being engaged in, and feeling responsible
for, making family life work seemed to confirm feelings
of being a person of value. Experiences such as being a
part of a greater whole, being loved, and being someone
who mattered for another person seemed to alleviate
feelings of losing control when the known existence was
challenged. A diminishing social life was described, and
the family members played vital roles as listeners to the
dying person’s and each other ’s life stories. Being able to
share memories and talk about life as it was earlier ap-
peared important not only for constructing individual
identity (me-ness), but also for constructing family iden-
tity (we-ness), as it gave a reminder of all parties’ earlier
roles and functions within the family. These were re-
minders of special situations that were of particular value,
as they gave some sort of acknowledgment to the dying
person and to the family as a group as they used to be.
Pointing out a shared past and history also seemed to be
central when creating a joint we-ness. The manner in
which professional caregivers acknowledged the ill per-
son and his or her family members mattered for the sense
of individual identity (me-ness). One dying woman
talked about the lack of access she had to information
concerning her body and illness:
Its me. I decide for myself, but this thing that I men-
tioned, not being able to sit down with the medical re-
cords, not knowing exactly where my tumors are located,
that is rather absurd. And there I ... I see the battle as
lost; I just dont have the energy to argue and nag. Im
afraid of being difficult and nagging too much, because
that too is some kind of I need to have some sort of
The quotation above implicitly suggests that being
treated as unable to read one’s own medical records
could also be interpreted as not being trusted to make
decisions about one’s own limited remaining life. Thus,
being invited to discuss the care plan on a regular basis
was one example of promoting feelings of control both
for the ill person and for the person in th e caregiving role.
The care plan then could be seen as an active part in the
life plan, giving a sense of being in charge of planning a
unique period in life. Being dependent on others some-
times threatened autonomy and obstru cted the possibility
to make demands. The woman quoted above experienced
little influence on her care plan, and consequently felt
less in control over that specific part of life. The pattern
of being an existential person was concerned with being
me—me-ness—and as such being seen as a unique per-
son facing the border of existence, and at the same time
being a family member who helped to make family life
3.2. Being an Extension of the Other
As the ill person’s strength decreased, the family became
involved in a series of new practical activities which
were often associated with emotional strain, both for the
ill person and for other family members. New asymmet-
rical relationships developed when family members per-
formed caring activities at home, such as giving injec-
tions, or keeping tr ack of and administering analgesics or
enteral nutrition. Even though caregiving meant being
physically close to each other, it was not easy to remain
emotionally and/or intimately close in the same way as
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I. Carlander et al. / Open Journal of Nursing 3 (2013) 379-388 383
before, due to the tubes and smells coming from the ill
person’s body and the other bodily changes occurring,
for example weight loss.
Wife: But of course theres been a period with a so rt of
yuck dont come here with your disgusting wounds
and all that .
Ill person: Yeah, and bugs ... and crap like that I
sure understand that. The fact that Im full of that, and
holes and all those ma rks left after the holes.
Behind the remark above, a glimpse can be caught of a
threshold for physical closeness; even a sense of disgust,
which could influence relations between the family
members to a greater or lesser extent. Using humor,
laughing together, and joking about the misery was one
strategy to handle the concrete and severe situations
which occurred in this precarious life situation. A joke
could make it possible to talk about the ambivalent ex-
perience of helping a loved husband with his hygiene.
There seemed to be no limits to what could be joked and
laughed about together; all sorts of human shortcomings
and even death could be ridiculed. Gallows humor and
jargon could be seen as a way of still being “us”, and
thus of maintaining we-ness.
As the dying person’s condition became worse, the
family member often became an extension of the other,
compensating for the ill person’s declining physical and
mental functions. As the ill person’s increasing physical
limitations created gradual change in many day to day
activities, the logistics of practical everyday life had to
be solved. A severely ill husband talked about his wife
with deeply felt gratitude:
She stands up for me in an outstanding manner, being
helpful as my extended arms and extended legs and ex-
tended head and everything else, and I will never be able
to pay her back. She tells me that I would have done the
sam e thing fo r her, a nd I surely hope so, but I must say I
am not sure but I really hope I would have made all
these tremendous sacrifices [that she makes]…
Accordingly, the ill person and their family members
had to relate to each other in a new way, and adapt to the
fact that things had to be done in a different way to be-
fore. Work, going to school, and different commitments
outside the home were always prioritized even if the ac-
tivities were sometimes limited due to demands in the
home situation. When the ill person could not communi-
cate his or her needs as before due to sedatives or
drowsiness, the partner stepped forward and took over
even more functions, both practical and emotional, re-
lated to the needs of other family members such as chil-
dren or elderly persons. It was a challenge trying to fit in
the logistics, and to continue living life as much as pos-
sible as before. Being an extension of the other also
meant having to deal with legal and financial matters
both belonging to th e presen t and coming up in th e fu ture,
such as matters affecting the survivors’ lives after the
death of the ill person, writing a last will and testament,
and planning the funeral, all of which were emotionally
demanding. Dealing with all the practical matters in
everyday life close to death was one concrete aspect of
facing individual challenges of consequence for con-
structing family identity, or we-ness. Accordingly, being
an extension of the other was recognized as a central part
of life close to death.
3.3. Being Together in Existential Loneliness
Family members h ad to live in a situation which to so me
extent was new, and had to adapt to new roles within the
family relationship. This meant doing things together in a
new way, at a time when the personal sphere diminished
and personal priorities had to be put on hold. This ap-
plied to both the ill person and their family members, but
displayed itself in diverse ways. The need for doing
things in a new way was especially obvious to the family
members during periods when the ill person was troubled
by physical symptoms or worried about the life situation.
One man told his story of a shared everyday life some
weeks before his brother died:
No, I tried to lie down and sleep for a while, but he
was so unsettled, and then he managed to get up and sit
by the kitchen table and start ph ilosophizin g abo ut thing s,
and then I also sat down by the kitchen table, and several
times I fell asleep there opposite him, you know. It was
just like that, there was nothing strange about it, I was
supposed to be with him but I could have practically
slept standing up. The smallest peep and I was up again,
you know.
The story is about sharing a moment around the
kitchen table, but not being able to share the experience
of the moment. A shared everyday life meant being in-
volved in the stress of living with life-threaten ing illness,
but not always sharing the individual meaning of it. Fac-
ing death, and existential loneliness, was ultimately an
individual challenge. The anxiety was handled both to-
gether and indiv idually; some family members dealt with
it silently, others talked a lot. The family member quoted
below emphasized the shared experience as an important
aspect of handling everyday life.
Well, we have of course experienced this together. It
becomes us automatically; its not something you go
through alone. Its really us both living through this.
Family identity, or we-ness, close to death, was not
always verbalized but sometimes expressed via a sensi-
tivity towards the other person’s experiences. This sensi-
tivity came from wanting to understand the other per-
son’s world and perspective; it was an act of love. Some
participants said they had no choice in this: being close
to and caring for the other person was unquestionable,
and just a part of being human. One husband described
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I. Carlander et al. / Open Journal of Nursing 3 (2013) 379-388
how he and his wife as a couple had learned to face dif-
ficult times together over the years; each new challenge
brought a new dimension to their relationship, making
them appreciate each other even more. The imminent
death of his wife made them connect in an even deeper
way than before:
And Im so glad we had all these years together, be-
cause it has given us the opportun ity to reach this phase.
We have learnt so much. We have fought through so
much. I hadnt counted on this, with the short time they
gave us.
The quotation above illumina tes how this husband saw
the immediate death of his wife as a mediator to reach a
new phase of togetherness based on insights gained from
her illness. For this coup le, sharing everyday life created
a strong sense of community, we-ness, making it possible
to handle the ex istential lonelin ess. Sharing everyday life
with other family members did not diminish the search
for understanding and ways to share the existential
meaning with other people. For example, our informants
participated in interest groups, or met others in similar
situations. In the absence of meeting people face to face,
the Internet, TV, books, or movies were common sources,
often complementing the purely disease-oriented infor-
mation delivered by the health care professionals. Social
media were also used to share the experience of being
severely ill as well as the family members’ own situation;
this method of communication was often expressed as
positive and rewarding. The Internet could be used to
search for information and research results concerning
the diagnosis and treatment, but it also offered advice on
how to deal with leaving the children, and offered a way
to communicate with others about these matters. The
Internet was thus an important part of being together in
existential loneliness, since it allowed sharing of experi-
ences with others outside the group of family and profes-
sional caregivers.
The main findings in this study distinguish three central
aspects of individual experiences close to death that are
important for constructing family identity: being an ex-
istential person, being an extension of the other, and be-
ing together in existential loneliness. According to Jen-
kins [45], identity is the understanding of who we are
and who other people are, and can be seen as a practical
matter which involves comparisons of both similarity
and difference. Living close to death could be seen both
as a situation and as a process that may involve questions
of meaning, but also interaction, communication, and
negotiation. The relationship between aspects of indi-
vidual identity and identity with a group lies in the rec-
ognition of “us” (or we-ness) primarily by not being
“them”. Our results exemplify some aspects that exag-
gerate the similarities between the individuals within
their family. These similarities differentiate them from
other groups, for example families not living close to
death; this is important for creating family identity,
The first pattern, “being an existential person”, de-
scribes the challenges of facing the ultimate existential
loneliness close to death. Man is basically alone, and
existential loneliness is a given for all humans [35,46].
The results in our study show, in line with the findings of
Waldrop et al. [47], that be ing in transition to end-of-life
care for family caregivers also meant sharing the short
period of life before a loved one’s imminent death, fac-
ing the fact of human evanescence [see also 48,49].
Sharing stories, experiences, and thoughts of a mutual
family life close to death could be seen as approaching
the existential dimensions of life. In doing this, both the
ill person and other family members sometimes had to
adapt to other people’s points of view, feelings, and reac-
tions. Finding oneself as an existential person became
evident in a period that was characterized by significant
changes, concretized by the ill person’s increasing de-
pendency on others [see also 50]. Those living close to
death found themselves in a period of change, which
affected their sense of individual identity and self-image
(me-ness), but also challenged their ways of being a
group; a family with a sense of we-ness. It is important
to emphasize that individual experiences close to death
were complex. The results also show that the ill person
had a need for acknowledgement, and needed to share
their thoughts about existential questions. Family mem-
bers were often engaged in their own grief related to a
different transition. Our informants expressed strong
feelings of being tied down and being trapped. According
to Schumacher and Meleis [3], indicators of successful
transition are subjective wellbeing, role mastery, and the
wellbeing of relationships—indicators that are closely
related to constructing family identity. This could be de-
scribed as a transition (Schumacher & Meleis, [3] which
affects both the ill person and the surviving family
members. In our study, the ill persons perceived that life
was soon to end, meaning a final separation from life and
family members, an insight brought by the closeness to
their own impending death. Schumacher & Meleis [3]
call this type of transition “health/illness-related”. For
the family members, the transition was situational. This
means they were affected by the illness and death of their
family member, but transitions concerning death, grief,
and mourning are also developmental, being a part of life
for all people [51]. No one walks away unaffected. In
order to make the everyday manageable, it is necessary
to change one’s own accustomed patterns of relations
and roles. How this is done will probably be of impor-
tance for how daily life is altered. Professional support
Copyright © 2013 SciRes. OPEN ACCESS
I. Carlander et al. / Open Journal of Nursing 3 (2013) 379-388 385
plays a significant role, which was also confirmed by our
findings. We found that the nurse played a key role in
guiding people through these complex passages in life in
as successful a way as possible [51]. Being in need of
support, whether as a family caregiver or as a patient, did
not take away the need to be seen and respected as a
competent person. This has been described in other stud-
ies as being offered partnership in the care with the
health care professionals [52]. Ward-Griffin and Mc-
Keever [53] describe four types of nurse-family care-
giver relationships: nurse-helper, worker-w or ker, manager-
worker, and nurse-patient. The second type, also de-
scribed as a co-workers’ relationship, is based on ac-
knowledging the expertise of the family members. Sahl-
berg-Blom et al. [54] describe four variations of patient
participation in decisions about care planning during the
terminal phase of life: self-determination, co-determin-
ation, delegation, and non-participation. The studies
mentioned above emphasize the importance of asking to
what degree individuals and family members want to be
self-determined and participate in decisions that impact
directly on their everyday life. Hence, how and by whom
the care is planned may influence the way family mem-
bers live their lives, and thus to some exten t is of impor-
tance for construction of family identity.
In concrete terms, being an extension of the other
meant making the day work practically. For instance,
there needed to be food in the home, so someone had to
go to the grocery store; someone had to take the children
to the day care center and school; and so on. Bo th family
members and the ill person strived to create normality in
an emotionally and physically challenging everyday life.
The well-known everyday life was highly v alued in a life
period characterized by uncertainty. Creating normality
included both doing and being. Some examples of this
included finding ways of preserving habits and things
which defined and promoted wellbeing, as well as taking
time to just be together. One theme that was woven
through all three pa tterns was the idea of creatin g as little
change as possible in daily routines and habits. This
could be interpreted to be one way of holding on to some
concrete activities that constructed family identity,
we-ness. According to Milberg and Strang [55], retaining
everyday life could also represent an aspect of making
the current situation meaningful. Other studies have
shown that the relationship between spouses was
strengthened by caregiving close to death [23,34]. The
family members strove to share experiences with each
other, but they also needed support from the professional
caregivers. In addition, there was also the urge to know
more about the illness and treatments; the Internet was
used for this purpose. Our findings suggest that humor
has an important role when creating family identity,
we-ness, in everyday life close to death. This may not be
surprising; humor is present in most human interactions.
However, few studies illuminate the meaning of humor
in palliative care. As explained in a study by Dean and
Gregory [56], humor builds relationships, is energizing,
and nurtures community; it can also assist in preserving
dignity and acknowledging personhood. Humor could
also make difficult care situations easier [57], although it
cannot alter the reality of terminal illness [58]. It is rea-
sonable to assume that jokes and laughter are a liberating
force that can help to handle difficulties in life, but that
can also preserve both the individual’s and the family’s
identity in an altered everyday life. Linked to this are th e
concepts of “me-ness” (being me) and “we-ness” (being
us) that we have put forward in previous articles [author].
Further research is needed to examine how humor influ-
ences wellbeing. There is also a need to examine when
humor becomes a hindrance to dialogue, or when it is not
in line with the needs of the ill person .
According to Hollman et al. [59], a sense of belonging
to a family and the feeling of being needed have been
found to improve togetherness. Our results indicate that
relations and togetherness can alleviate strains such as
existential loneliness, in line with other research (e.g.
Sand & Strang, [35]. Interestingly, the pattern of “being
together in existential loneliness” showed that the search
for a new belonging was not exclusively directed to-
wards living persons. For example, one of the informants
quoted above derived comfort from and got acknowl-
edgement by feeling “connected” to those of his loved
ones who had already died, and through religious beliefs.
A sense of togetherness was also found in sharing ex-
periences with other people in similar situations—other
family caregivers or others afflicted with life-threatening
illness, and hence dealing with their own finitude. The ill
people and family members in the present study fre-
quently sought information beyond that supplied by pro-
fessional caregivers. The finding s also illuminate that the
way professional caregivers talked about care planning,
death, and dying was important in the everyday life of
dying persons and their family members. The partici-
pants expressed the need to know what is known about
the end of life. The need for communication and
straightforward information is well described in the lit-
erature [60-62], which may raise the question of how to
talk about death and dying, an d whether there is a gap in
knowledge. It was not always the knowledge from the
palliative care professionals that was the most needed or
wished for. The participants appeared to want to share
subjective experiences with other people in a similar
situation, and to find out their way of thinking about
practical, emotional, social, and existential issues. Hence,
it seems important to offer different kinds of encounters
for the sharing of experiences. In addition, professional
caregivers could also serve as facilitators, using dialogue
Copyright © 2013 SciRes. OPEN ACCESS
I. Carlander et al. / Open Journal of Nursing 3 (2013) 379-388
grounded in the family’s earlier ways of living everyday
life to guide the ill person and their family members
through the transition. It seems reasonable to assume that
this would assist dying individuals and their families in
handling the existential challenge of sharing everyday
life close to death at home.
4.1. Methodological Considerations
This study has some limitations. It is important to con-
sider the ethical principles of a secondary analysis [40],
such as the participan ts’ informed co nsent. In the present
study, this was addressed by checking that the aim of the
study was included within the overall aim of the orig inal
studies. Another concern is the relation between the re-
searcher, as an instrument for data collection, and the
quality of the data. Secondary analysis is heavily reliant
on the quality of the original data sets. We judged that
the data were rigorously collected and captured rich sto-
ries. Because of the in-depth interview analysis neces-
sary for a qualitative study, we included 29 per sons (par-
ticipating in 40 interviews) with experience of living
everyday life close to death. However, our purposeful
sampling method was effective in including a variety of
experiences. To enhance trustworthiness, we performed
prolonged engagement via repeated interviews over time,
and also did member checking. We started the analysis
confident that the phenomenon of interest was well rep-
resented and would therefore yield applicable and useful
knowledge. Our research objective was to generate a
richly detailed and interpretive examination of this com-
plex phenomenon, articulated by individuals experienced
in living everyday life close to death. The risk of re-
searcher bias is well known in all qualitative research,
and secondary analysis without doubt holds the possibil-
ity of increasing this bias [63]. Peer review and thick
descriptions were used to ensure methodological sound-
ness. The product of an interpretive description includes
elements of both thematic summary and an integrative
interpretation of the phenomenon under study. This
means that it cannot be generalized, but by providing
rich descriptions it is likely that the knowledge can be
transferred to other persons living their everyday lives
close to death.
Although much has been written about the burdens of
everyday life close to death and the existential needs of
both persons with life-threaten ing illness and their family
members, this study adds knowledge by proposing as-
pects of individual experiences relevant to constructing
group identity in families liv in g close to death . Exp loring
the concept of family identity could contribute to our
understanding of what helps people endure, and even
benefit from, this special time in life. Togetherness can
be seen as a dimension of humanness; a driving force
that is especially important when everyday life is turned
upside down and everything is changed by life-threat-
ening illness. A better understanding of patterns within
constructing family identity could be helpful for pallia-
tive care profession als supporting patients and th eir fam-
ily members in living their everyday lives during the
transition to death. Furthermore, being in transition to
something new raised existential questions, and togeth-
erness and community seemed to alleviate some of the
strains related to everyday life close to death. Family
identity close to death thus incorporated the tension be-
tween searching for community and facing existential
loneliness, revealing some of the challenges of being a
family in which one member is dying.
We wish to thank the study participants for generously sharing their
experiences. The authors received financial support for the research
project from the Erling-Persson Family Foundation and the Signhild
Engkvist Foundation.
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