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556179

research-article2014

JFNXXX10.1177/1074840714556179Journal of Family NursingEkstedt et al.

Article

Health Care
Professionals
Perspectives of
the Experiences of
Family Caregivers
During In-Patient
Cancer Care

Journal of Family Nursing


2014, Vol. 20(4) 462486
The Author(s) 2014
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DOI: 10.1177/1074840714556179
jfn.sagepub.com

Mirjam Ekstedt, RN, PhD1,2, Una Stenberg, MSW1,


Mariann Olsson, MSW, PhD3,4,
and Cornelia M. Ruland, RN, PhD1,5

Abstract
Being a family member of a patient who is being treated in an acute care
setting for cancer often involves a number of challenges. Our study describes
Norwegian cancer care health professionals perceptions of family members
who served as family caregivers (FCs) and their need for support during
the in-hospital cancer treatment of their ill family member. Focus group
discussions were conducted with a multidisciplinary team of 24 experienced
social workers, physicians, and nurses who were closely involved in the
patients in-hospital cancer treatment and care. Drawing on qualitative
hermeneutic analysis, four main themes describe health professionals
perceptions of FCs during the patients in-hospital cancer care: an asset and
1Oslo

University Hospital, Norway


Royal Institute of Technology, Stockholm, Sweden
3Karolinska Institutet, Stockholm, Sweden
4Stockholms Sjukhem, Stockholm, Sweden
5University of Oslo, Norway
2KTH

Corresponding Author:
Mirjam Ekstedt, STH, Royal Institutet of Technology, Alfred Nobels All 10, 141 52 Huddinge,
Sweden.
Email: mirjam.ekstedt@sth.kth.se

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additional burden, infinitely strong and struggling with helplessness, being


an outsider in the center of care, and being in different temporalities. We
conclude that it is a challenge for health care professionals to support the
family and create room for FCs needs in acute cancer care. System changes
are needed in health care, so that the patient/FC dyad is viewed as a unit
of care in a dual process of caregiving, which would enable FCs to be given
space and inclusion in care, with their own needs simultaneously considered
alongside those of the patient.
Keywords
family-focused care, health care professionals perceptions of family, family
caregivers, cancer, in-patient cancer care, Norway

Cancer is a challenge for society, the health care system, the patient andnot
leastthe patients family, particularly family members involved in caregiving. For patients in active treatment for cancer, family caregivers (FCs) are
the primary source of social and emotional support and assume tremendous
responsibility for daily functioning in the family (Milberg, Strang, &
Jakobsson, 2004; Sand, Olsson, & Strang, 2010). Owing to improved diagnostics and treatment, longer life expectancy, and shorter hospital stays,
patients increasingly cope with long-term illness at home. This, in turn,
increases the FCs responsibility and possibly burden, and also makes their
role as a source of support for the patient even more important.
In recent years, increasing attention has been paid to FCs experiences
and needs as care recipients in their own right. Health care services in
many countries are being required to support FCs and involve them as partners in care (World Health Organization [WHO], 2012). When the FC is
well supported, the well-being of the patient may be significantly increased
(Bultz, Speca, Brasher, Geggie, & Page, 2000; Murray et al., 2010).
Cooperation and communication between health care professionals and
family members involved in caring for patients has become increasingly
important (Harding, List, Epiphaniou, & Jones, 2012; Northfield & Nebauer,
2010; Stenberg, Ruland, Olsson, & Ekstedt, 2012). In this study, a FC is
defined as someone who is close to the patient whether that individual(s) is
a spouse, significant other, relative, adult children, or friend and who
actively participates in sharing the patients illness experience on a practical and/or emotional level (Beaver & Witham, 2007, p. 17). For reasons of
simplicity, the term patient has been chosen for the family member who
receives acute, in-hospital treatment for a diagnosis of cancer. The term

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health care professionals has been chosen to include social workers, nurses,
and physicians who work in an acute cancer care setting.

Current Knowledge
Being a FC to a patient during their cancer trajectory is influenced by a number of challenges (Stenberg, Ruland, & Miaskowski, 2010), including the
health problem (Blum & Sherman, 2010), various emotional reactions
(Northfield & Nebauer, 2010), and significant social, financial, and employment implications (Grbich, Parker, & Maddocks, 2001; Teschendorf et al.,
2007). Furthermore, FCs are exposed to considerable burden as a result of the
many responsibilities or activities they are unprepared to handle (Schubart,
Kinzie, & Farace, 2008). Several studies, from the perspective of the FCs,
have described their need for information, emotional support, and the need to
be acknowledged and invited into the treatment process (Carter, BryantLukosius, DiCenso, Blythe, & Neville, 2010; Osse, Vernooij-Dassen, Schade,
& Grol, 2006; Stenberg et al., 2012).
Health care professionals who work in palliative care settings have
described FCs as fatigued and exhausted, with feelings of guilt, and fear of
the diagnosis (Cagle & Wolff, 2009; Stajduhar, Nickel, Martin, & Funk,
2008). In addition, health care professionals describe FCs feelings of ambivalence when dealing with financial issues and decision-making responsibilities and their doubts about the value of them being there for the patients
(Stajduhar et al., 2008).
The philosophy of patient and family-centered care which views families
as integral members of the health care team has, for decades, advocated partnership, information sharing and patients/families participation in decisionmaking and care (Bell, 2013). Although patient and family-centered care is
supported by the WHO (2012) and national laws (e.g., Norwegian Ministry
of Health and Care Services, 2009), patients and FCs are far from internalization as partners in acute hospital care. FCs are still reluctant to attend to their
own needs (Robinson, Pesut, & Bottorff, 2012), calling for devoted health
care professionals to recognize the challenges FCs experience and to establish a good relationship with FCs to insure open and receptive communication (Karlsson, Mattsson, Johansson, & Lidell, 2010).
While there has been considerable research on the needs of FCs in palliative, end-of-life care (Andershed, 2006; Funk et al., 2010; Robinson et al.,
2012; Ward-Griffin, McWilliam, & Oudshoorn, 2012), less attention has
been given to FCs needs during the patients cancer treatment in hospital
care. In addition, few studies have focused on health care professionals
views of the FCs challenges, and their views about their own role and

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abilities to meet the needs of the FCs during patients cancer treatment in
hospital care. This calls for a better understanding of health care professionals views of FCs and the challenge of involving and supporting FCs when
the patient is being treated for cancer. Such an increased understanding will
contribute to better support for FCs and thus better care for the patient.
Therefore, the present study aimed to obtain a deeper understanding of challenges faced by FCs and their needs for support, as described by health care
professionals during the patients in-hospital cancer treatment.

Theoretical Framework
Families function within a social, cultural, economic, and environmental
context. With the goal of deepening the understanding of the FCs needs and
challenges during the treatment phases of the patients cancer trajectory, an
ecological perspective (Bronfenbrenner, Lerner, & Hamilton, 2005) was used
as an overarching framework, exploring these aspects from the perspective of
health care professionals. The primary focus of the ecological perspective to
family caregiving is the dynamic relationship between the patient and FC in
context. The changed and challenging situations FCs experience are related
to the individuals involved in care (e.g., patient, health care professionals, or
other family members), the environments (e.g., hospital ward/unit) and/or
social/cultural contexts (e.g., health care organization, society), and the interaction between person and context. A distinctive and unique feature of the
proposed ecological framework is that it is bifocal (Bronfenbrenner et al.,
2005). A dyad is formed when FCs and patients pay attention to or participate
in one anothers activities. As a result, FCs coordinate their activities with
those of the patients and vice versa. A focus on the patient and FC as a dyad
provides a framework for describing the dual nature of caregiving. In this
study, the ecological perspective framework was used to identify FCs needs
and patterns of interaction that could be used for development of a psychosocial intervention for FCs.

Method
Study Design
This research report is part of a larger interdisciplinary and international collaboration to advance knowledge of the symptoms, problems, burden, and
health-related quality of life of FCs of patients with cancer, and to develop and
test an intervention for FC support (Ruland et al., 2007; Ruland et al., 2013).
A review of the literature was published (Stenberg et al., 2010), and individual

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interviews were conducted to obtain a deeper understanding of the experiences of FCs living with a patient experiencing cancer (Stenberg et al., 2012).
To meet the aim of the study, a hermeneutic approach was used (Ricoeur,
2007), and the study was based on focus group interviews with health care
professionals as described by Krueger and Casey (2000). The open-ended
nature of focus groups makes them useful in exploring attitudes, opinions,
and perceptions (Morgan, 1997). Focus group interviews, as opposed to individual interviews, take advantage of group dynamics and may lead to discussions among members of the group. The study was performed in compliance
with the principles outlined in the Declaration of Helsinki (World Medical
Association, 2008), and was approved by the National Committees for
Research Ethics in Norway (REK) and by the Ethical Board of Oslo
University Hospital.

Participants
To recruit a purposive sample (Corbin & Strauss, 2008) of health care professional participants, an introductory letter was sent to social workers,
nurses, and physicians employed at different cancer care units at a Norwegian
University Hospital. Health care professionals who offered care in the hospital unit had no explicit commitment to support FCs during the patients
in-hospital cancer treatment. Thus, the support offered to FCs depended, to
a large extent, on what FCs requested, and the health care professionals
competence in engaging and including families. We focused on selecting a
multidisciplinary team of experienced professionals who were closely
involved in the patients in-hospital cancer treatment and care, and thus were
able to describe their experiences of FCs in detail from various perspectives.
Of 41 health care professionals who were invited, 26 (63.4%) agreed to participate. The second author (U.S.) contacted them and interviews were
scheduled. Two persons withdrew, and a total of 24 health care professionals
(2 men and 22 women) were interviewed. Four focus group interviews, with
four to seven social workers and additional health care providers in each
group, were conducted between November 2008 and January 2009. The participants in the focus groups were 8 social workers, 16 nurses, and 2 physicians. The 2 physicians (1 man and 1 woman) were interviewed individually
as they were unable to participate in the focus groups. These interviews were
conducted in their offices at the University Hospital, and lasted between 30
and 45 min. At the time of the interview, the age of the participants ranged
from 29 to 61 (average 48.5) years. All were clinical practitioners with an
average of 15 years experience in cancer care, representing a variety of different types of cancers.

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Interview Procedure
The second author (U.S.), a social worker in cancer care and an experienced
focus group moderator, led the group discussions assisted by a co-moderator
with clinical experience (Kvale & Brinkman, 2009). The four focus group
sessions lasted about 90 min, and took place during the participants working
hours in an undisturbed conference room at Oslo University Hospital. The
moderator led the sessions by following a thematic interview guide developed through discussions with experts in cancer treatment, the interprofessional research group, and by integrating the existing literature (Krueger &
Casey, 2000; Kvale & Brinkman, 2009; Stenberg et al., 2010). The co-moderator sat in the periphery of the circle, observing the group process, taking
notes, tape-recorded the interviews, and managed the equipment.
The opening questions were intentionally broad and open-ended to encourage health care professionals to share their own perspectives: Can you tell
me about the challenges FCs encounter, as you see it from the perspective of
a health care provider? The moderator asked probing questions focused on
challenges of day-to-day life, and FCs need for support during the patients
illness such as How are the daily lives of FCs impacted? How do FCs
challenges change over time? What kind of need of information and support do FCs have? and Do FCs find any kind of benefits through caring?
The participants spontaneously described what they had experienced, felt,
and done related to the FCs situation. The safe environment allowed interactions among participants, and enhanced confirmation, reinforcement, and
contradiction of statements (Krueger & Casey, 2000). Further questions were
posed during the interview to elaborate, deepen, and validate the answers, or
guide the participants back to the topic (Kvale & Brinkman, 2009). At the
conclusion of each focus group discussion, the investigators modified the
focus group guide to include any new topics relevant for exploration in subsequent groups. The interviews were tape-recorded and transcribed verbatim.
Transcripts distinguished the statements of different speakers, but did not
identify individual speakers by name.

Analysis
The transcribed interviews were analyzed using a hermeneutic method
according to the principles originally described by Radnitzky (1968) and
later adapted and extended by Kvale and Brinkman (2009) and used in several studies (Milberg et al., 2004; Sand et al., 2010; Stenberg et al., 2012).
These principles are as follows: (a) continuous back-and-forth process
between the parts and the whole (the hermeneutic spiral); (b) interpretation of

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meaning ends when a good gestalt is reached, an inner unity of the text,
free from logical contradictions; (c) testing parts of the interpretations against
the global meaning of the text; (d) autonomy of the text, that is, the text
should also be understood on the basis of its own frame of reference; (e) a
hermeneutical explication of a text concerns knowledge about the theme of
the text; (f) an interpretation of a text is not free from pre-suppositions; and
(g) every interpretation involves innovation and creativity.
The analysis was performed in several steps. First, the transcripts were
read from the beginning to the end to get a general sense and overview of
overall experiences. Next, the text was carefully read to discover units of
meaning with common and distinct qualities. These meaning units were carefully read with a focus on underlying meaning and implicit issues that were
hidden in the text. The reading was guided by the following question generated from the text: How does this health care provider perceive FCs challenges and needs for support? Significant expressions were coded and
compared to find the health care providers central experiences. The analytic
process was mainly carried out by the first author. Themes that were salient
in the interviews were strengthened and validated by the co-authors (M.O.
and U.S.) who acted as co-judges and examined the relevance and applicability of the themes, separately and in conjugation several times, as part of
reflexivity (Malterud, 2001). Finally, the whole text was read through once
again to reconfirm all the themes against the text as a whole and to search for
a new understanding of the whole, which completes the hermeneutic spiral
(Ricoeur, 2007).

Trustworthiness
According to hermeneutics, interpretation without presumptions is impossible. Therefore, it was important to be aware of ones own pre-understanding
to minimize the risk of unconsciously influencing the analysis. The analytic
process took advantage of our different professional backgrounds, one nurse
and two social workers, in that different perspective, divergent interpretations
were offered. According to Ricoeur (2007), understanding is to be found in
discrepancies rather than agreement. The value of discrepancies was that
alternative options were continuously and thoroughly discussed until trustworthiness of the interpretation was reached.

Findings
Four main themes emerged from the analysis describing the health care personnels experiences of FCs during the patients cancer trajectory: an asset

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and additional burden; infinitely strong and struggling with helplessness;


being an outsider in the center of care; and being in different temporalities. These themes formed a whole that sheds light on health care professionals challenges to create room for FCs in-hospital cancer care and to
support the familys adjustment to the role of caregiving.

Being an Asset and an Additional Burden to Health Care


Health care professionals described how FCs eventually became experts on
the patients illness and treatment. The FCs were seen as an asset for the
health care system at the medical visit, for example, when they acted as an
advocate for the patient, reminding the patient what he or she should ask
about, and bringing up topics of concern. They assisted the patient by posing
clarifying questions and acted as a secretary, listening and taking notes about
what is said:
We often rely implicitly and completely on the next of kin. Its always the next
of kin who call me before a consultation and tell me whats really going on.
Because if the patient doesnt say . . . Then I know what to ask about, and
otherwise the next of kin serve as reminders, they sort of give clues to the
patient so the patient tells more, and they ask the patient how it actually was.

Health care personnel were aware that they would have to arrange a great
deal of care services for the patient at discharge if there were no FCs to take
over the caregiving. This was especially true for the elderly, and became particularly evident when a patient did not have any FC:
Its actually built into our method of caring for patients with cancer; we count
on the next of kin always being there and they are part of our planning. Its
when there are no next of kin that we have extra gaps to fill. There are things
we count on next of kin doing, and we have to find a way to replace them if no
next of kin are around.

Health care professionals described that many FCs seemed to be uncomfortable in the unfamiliar hospital environment and needed some help to find
meaningful ways of communicating with the patient. Especially adult children and teens seemed lost, and they hesitated to visit the patient because
they did not know what to say. There were many solitary FCs in need of
support:
Often when you talk one on one to next of kin and ask how are you doing, it
happens so often that many of them start crying and theyre completely in

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despair. I have next of kin who say its the first time anyone ever sat down and
listened to my side of the story. So in my opinion the care we give them does a
lot of good.

FCs usually wanted to add some value for the patient, but often needed
someone to facilitate their involvement in the patients care. This was done
by creating a physical space to be alongside the patient, or by giving information and advice about practical matters that can be addressed. Showing FCs
little symbolic things they could do for the patient seemed to give them peace,
and they could find a way to relax with the patient:
And she felt such a need to do something, and what we can do is ask them to
wash the (patients) feet or something, or put lotion on the (patients) hands,
and she had such a close relationship with her mother and it was so wonderful,
I could see how she relaxed when she was given a chance to do that.

Even though FCs were seen as an indispensable asset for the patients,
health care professionals described ambivalent feelings toward taking care of
FCs. It required time to make FCs comfortable, to listen to them, and to pay
attention to their needs, and the professionals work schedule did not provide
sufficient time for that. In some situations, FCs strong intent to contribute to
the patients well-being became a little too much and was described as an
arduous challenge by health care professionals:
So its a constant struggle to get them not to nag the patient all the time about
food or weight or rest. That they feel they have to nag on the patients behalf
instead of waiting for a nurse to come by with this or that, or that they call and
try to get examinations performed sooner or pester us about a CT we intended
to order anyway at the next opportunity. So they can believe that if they hadnt
intervened, the patient wouldnt have got it, which I dont think is true a lot of
the time.

Some health care professionals admitted that it was an extra burden to


facilitate for FCs and that many would probably avoid it if they could.
However, no one in the focus groups talked about these politically incorrect feelings at their work place.

Infinitely Strong and Struggling With Helplessness


Health care professionals described their difficulties in dealing with FCs
unspoken and conflicting emotions. FCs often behaved as though everything
was fine in front of the patient, but were struggling with helplessness and

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worry under the surface. One professional expressed it as to take care and be
very sad is twice the work. They were so intertwined and connected with
their family member who was the patient that they sometimes found it difficult to distinguish themselves from the other. Some had, for example, difficulty with eating, when the patient had nausea or poor appetite. The health
care professionals experienced how FCs had difficulties just to be, and to take
care of their own needs while their next of kin was receiving cancer treatment, and that they may have needed help to withdraw a little:
When the patients have started the treatment and dont have to wait any longer,
they relax a bit, but the next of kin, they want to know whats going to happen
at the next treatment session, next week, next check-up. Its as if they are
constantly struggling with the process. And I think a lot of them are terribly
afraid. Maybe our role is to take a bit of responsibility off their shoulders, but
they also have to feel secure about giving responsibility to others, or letting
them take it.

Health care professionals observed how FCs often took huge responsibility in being strong and supportive to the patient, but at the same time struggled with contradictory and forbidden emotions and thoughts:
I see that next of kin have to take on many new tasks and different types of
responsibility to keep the family afloat, and be the pillar of strength, and I
sometimes feel that the next of kin feel they have to carry a heavy burden all
alone, that the focus is on the patient, and that they shouldnt put any extra
burden on the patient, so theyre keeping a lot of their own reactions sort of on
the inside.

Professionals identified suppression of anger over the patients inability to


take care of everyday matters as they used to do, or feelings of disgust because
of the transformation the patient underwent during illness or treatment. At the
same time, FCs were ashamed and felt guilt over their undesired emotions,
and some expressed guilt over being healthy while the patient is ill.
Professionals described how they became aware of troubles that FCs
needed support to handle. Many FCs struggled with bad conscience, torn
between different needs and tasks, trying to get everyday life to work. They
were pulled in different directions and regardless of where they are, they
thought they should have been somewhere else. If they left their children at
home to provide support to the sick relative, they felt guilty for not being with
the kids, and if they stayed at home, they felt bad because they were not
standing by the one who is sick:

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But I get a strong impression that they live with constant feelings of guilt about
work, about the person whos sick, and for the home if there are children there.
We often dont see how vulnerable everything is when theyre at home with all
that stuff to handle. And many pull themselves together when they come into
this hospital situation. Because there are lots of details that have to run smoothly
in their everyday lives and everybody is exhausted.

Being an Outsider in the Center of Care


Many FCs needed support to find their role as a FC and to understand how
the health system works. Some were good at getting support from various
resources, whereas others needed help to find social support or to get funding
to cover part of their travel and subsistence costs. Health care professionals
observed that FCs have few rights and possibilities to get support from the
health care system. FCs could not take time off from their responsibilities and
often found themselves alone with their problems: They have no right to
take time off, there are no social insurance benefits for next of kin. Theyre
often all alone in their struggle because they cant talk about their fears with
the other party.
In the interviews with health care professionals, it was revealed that
there is literally no room for FCs in hospital care, neither physically nor
emotionally in the form of time. Health care professionals described how
FCs perceive that the patient is in focus and in some ways has better control, while the FCs stand on the sidelines and are not automatically invited
into shared decision-making about plans for care or treatment: One said he
understood hed been taken along to the hospital because he was next of
kin, but still he didnt feel he was being included. This uneven distribution
of responsibilities and information flow contributed to an imbalance in the
relationship and limited the FCs opportunities to understand and enter into
their role as a FC.

Being in Different Temporalities


The FCs experienced an illness trajectory just like the patient, but the patient
and the FC were in different realities and not always in sync with each other.
The health care professionals perceived that the role as a FC varied depending on gender, the patients age, the severity and stage of disease, and what
kind of relationship the FC and the patient have with each other. There are
many different expressions of grief and there had to be time and space for
different ways of being in the situation:

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Men tend to handle things as they arise, and where grieving is concerned Ive
often seen in couples that dont grieve the way their partner would like them to
grieve, that they grieve in different ways, so the impression is that they arent
interested or that theyre not grieving enough.

Health care professionals described a need for meeting the FCs just in
timenot too early, not too late. The relatives may actually be more
demanding today, knowing precisely what they want from health care, but
this does not necessarily mean that they understand more. It was not just
about having the courage to take in the tough message, but during the initial
period many FCs only remembered fragments of the information they
received. At that stage, it was no use giving too much information, or taking
away the hope that is required at the moment. Thus, it was seen as important
to dig deeper into how the FC had perceived the information given, what they
want and what they need:
They feel they have to pull themselves together, have to keep themselves going
for the sake of the patient and support the patient. The person may not have
shown any emotion, or cried or anything if the spouse or partner or next of kin
was present.

FCs were particularly sensitive to the information the doctor provided. It


was often a tough roller coaster for relatives who were thrown between hope
1 day, despair the next, depending on whether information is given to them
straight or in a roundabout fashion. Health care personnel described how
hope developed and changed over time, and that the most profound questionwhat will happen when death approacheshad no answers. The health
care personnel emphasized that for their own part it was important to remember that they do not have all the answers, but they can be there and listen.
There is something good about FCs being there, in the midst of the process,
instead of staying at home with all the images that are created in the brain:
My impression is that the feelings are more intense, the good feelings are even
better and the bad feelings even more painful. The whole family has to be on
the same train, and they all have to get on at pretty much the same stop, and
nobody should have to jump aboard on the way, or have to jump off.

Health care professionals believed that if FCs could share the patients
journey from hope, until hope is no longer there, there was greater opportunity to become synchronized with each other, and to succeed in creating
openness and a sharing atmosphere. In that case, a new closeness developed
in the family/relationship:

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There are also families that come closer to one another, with the children too,
and theres such closeness in it. But I think especially they come closer to one
another if they can manage to share and you can see how their relationship sort
of grows. And thats really great for us too, we get some fantastic teamwork
then.

If the disease became chronic, the FCs needed to reorient and change
focus several times during the illness trajectory. There was also a risk that the
patient and the FC were in different phases after the treatment is finished.
One was prepared to move forward, while the other had been marked by illness experiences, and was not ready to leave it behind yet. Then, the FC or
the patient required help and support to wait for the other.

The Whole: It Is a Challenge to Create Room for FCs in


Patients Hospital Care and to Support the Familys Adjustment
to the Role of Caregiving
The challenge for health care personnel in their task of supporting FCs in
their role of caregiving was to balance between the patients and the FCs
different needs in different phases of the illness trajectory and to help sustain
hope in both. The challenge in creating room included experience, time,
and commitment to support emotional and practical needs as well as included
the FC as an asset for the patients care during the hospital stay. The FCs
undertook a journey, which in a way was shared with the patients illness
journey, but yet was essentially distinct from the patients journey. In this
trajectory, the patient and FC were sometimes out of step. It took experience
and time on the part of health care professionals to support difficult conversations where one family member wanted to shield the other person from grief,
or when they were unable to share difficult issues. In the center of the patients
care, the FC was an outsider, who struggled between maintaining life as
usual, and the uncertain future the illness provided. By enduring in the midst
of the uncertainty, a greater closeness in the family relationship could possibly emerge. Health care professionals were aware that there were no answers
to existential questions, but that professional caregivers were able to provide
relief by being there, listening, and by creating space for different ways to
mourn losses.

Discussion and Implications


The primary contribution of the ecological perspective in this study is the
examination of the dynamic relationship between the FC and patient in

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context. From the view of family care and systemic theory, it is essential to
perceive the family as a whole entity where members of a family are mutually
dependent: They interact and are interconnected (Bernler, Cajvert, Johnsson,
& Lindgren, 2008). Our study shows that health care professionals are aware
that FCs face multiple demands and that these professionals can identify vulnerable FCs in phases when they are in need of support. Health care professionals can go to great lengths to support the emotional, practical, and
informational needs of FCs, despite a number of challenges. In a recent survey, professional caregivers estimated that they could give support according
to the FCs need to talk and to get various kinds of information while the
patient was being treated in hospital, whereas it was, in most cases, not possible to fulfill the FCs need for practical support concerning caring at home
(Benkel, Wijk, & Molander, 2012). Similarly, health care professionals in our
study perceived that even though they met the FCs needs for crucial conversations, the system did not offer adequate support for FCs essential needs of
an economical or practical nature. Even though health care professionals
were aware that FCs are indispensable resources for the patient, they could
not find the extra time, space, and commitment needed to support them well.
Nevertheless, professional caregivers were consistently aware that all efforts
to meet the FCs needs were time well spent, in that it helped ensure that they
would be an asset for the patient and ultimately for the health care system.
A dilemma is that FCs are simultaneously viewed as an asset and a burden,
with specific needs of their own; their position is neither that of a co-worker
nor that of a client within the system. In concert with other studies, the FCs
have no given place in care, and they are often either ignored or taken for
granted (Lindholm, Makela, Rantanen-Siljamaki, & Nieminen, 2007). They
are expected to be around but it is not obvious that they are invited to participate in decision-making and care planning.
Shared decision-making and partnership are hallmarks of person-centered
care (Ekman et al., 2011), which if conscientiously and systematically applied
may help as a mainstay of care in long-term illness. Given that the total number of days of hospital stay is being systematically reduced, and advanced
health care is increasingly moving into homes, the FCs role in maintaining
continuity of care is becoming ever more important. The need to include FCs
in patient care has been voiced in the health care literature for a very long
time. However, although person-centered care is based on the patients individual needs and expectations, including context, history, and family, the primary focus in this perspective of care is on the patientprovider relationship
(Ekman et al., 2011). As the FCs are not explicitly included in this partnership, they are rarely also invited to participate. By viewing the patient/FC
dyad as a unit of care in a dual process of caregiving, the FCs would,

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according to the ecological model, be given a natural space in patient care


and their own needs would simultaneously be considered. The results from
this study indicate, however, that organizational and economic systems
changes are needed to make such a model of family-focused care feasible in
health care.
However, whether it is the FCs own desire to take an active part in the
care process, or if they find themselves situated as co-workers by the health
care system, family members must be considered (Stajduhar et al., 2008).
The present study indicates that FCs ability to take active part in care fluctuates along the care trajectory, making it particularly important for health care
professionals to tailor individual support for FCs, and to identify FCs who are
overwhelmed by responsibilities. The health care professionals in our study
felt that it was also part of their task to relieve FCs of some responsibility and
encourage them to withdraw a little when the patients condition was stable.
One overall challenge for professional caregivers is to support the FCs within
the framework of the health care system. Thus, health authorities, governments, and managers have to make substantial commitments to facilitate for
health care professionals to include FCs in information, decision-making,
and care planning (Ekman et al., 2011; Northouse, 2012).
Consistent with the findings in other studies (Bernard & Guarnaccia,
2003; Northfield & Nebauer, 2010; Stajduhar et al., 2008), health care professionals perceived that FCs did not view themselves as a legitimate target for
support, focusing instead on the patient. It has been claimed that it may be
quite untenable for health and social care professionals to improve FCs quality of life, as promoted, for example, by the WHO (Hudson & Payne, 2011),
and indeed realistic objectives are needed. However, health care professionals seem to have the potential to make significant changes in the way a FC
handles the situation through relatively small efforts. Such support could take
the form of encouraging FCs to maintain social networks (Haley, 2003) to
request and accept assistance from others (Given & Northouse, 2011), and
not feel guilty at times when they actually may feel joy or other positive emotions (Folkman, 2010). The health care professionals skill at delivering
information about diagnosis and treatment at a suitable level, yet without
tiptoeing, seems to be crucial for how next of kin cope with the FC role
during the initial phase. This is consistent with patients perceptions of difficult communication during the diagnostic period, when the emotional shock
is profound and the information to be processed is complex (Thorne et al.,
2009). Offering a setting where FCs can validate their emotions with similarly affected peers may also alleviate some caregiver burden (Northfield &
Nebauer, 2010). The opportunity for Internet-based communication has
increased tremendously as the Internet has become more accessible and

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user-friendly. An Internet-based application for online forum with peers,


communication with professional caregivers, and seeking information on
symptom management has been shown to provide support for different
patient groups (Grimsbo, Finset, & Ruland, 2011; Ruland et al., 2013; Ruland,
Brynhi, Andersen, & Bryhni, 2008), and in palliative care, FCs experienced
reductions in emotional distress after online communication with clinicians
about symptom management (Chih et al., 2013).
In everyday living, family members are mutually interdependent, taking
on different roles and tasks. They develop their own idiosyncratic patterns of
communication and norms of behavior, and there is a system or pattern that
gives the family unit meaning and equilibrium in coping with the ups and
downs of living. Change in one part of the system will have a corresponding
effect on another part of the system, rather like a see-saw effect (Hudson &
Payne, 2008; Wright & Leahey, 2013). The description health care professionals gave of FCs burden demonstrates that the FCs needs are more complex than just a need for information and involvement in decision-making
(Blum & Sherman, 2010). This study suggests that FCs follow an illness
trajectory that is parallel to the patients but in some areas is substantially
different. This implies that even if the patient/FC dyad is treated as a unit of
care, there are two different sets of realities and challenges for health professionals to support FCs and the patient. Despite the fact that the health care
professionals who participated in the focus groups had a great deal of experience, they were challenged by FCs psychosocial needs.
The FCs struggle with various dilemmas was described as a dual process
in our previous study (Stenberg et al., 2012). The dual process of bereavement (Stroebe & Schut, 1999) suggests that adaptive coping with bereavement includes a pendulum between loss-oriented and restoration-oriented
stressors related to the bereavement. This model can be used as a means for
health care professionals to better understand FCs oscillation between the
sometimes contradictory demands that arise when a family member is diagnosed with cancer. Becoming a FC to a patient with a life-threatening disease
is an intruder that challenges core assumptions about life as we know it
(Tedeschi & Calhoun, 2004) and provokes existential anxiety, guilt, and feelings of meaninglessness and isolation (Tillich, 1952/2000). Loss-oriented
stressors associated with becoming a FC may be related to grief over lost
confidence in life: Confidence may have been fundamentally challenged,
even if the patient will recover. Restoration-oriented stressors focus on the
adjustments of everyday life that must be undertaken. They include mastering new tasks and developing a new identity, realigning from spouse or
son/daughter to FC. The FCs oscillation back and forth between being
infinitely strong and struggling with helplessness was acknowledged by the

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health care professional who noted to take care of someone and at the same
time be very sad must be twice the work. Experienced health care professionals from different disciplines were aware that under the apparently strong
surface, FCs carried a burden of conflicting emotions of guilt, anger, and fear.
However, the individual health professional described meeting the FCs in
their conflicting needs as a challenge, and pointed to a need for different perspectives and competence to better understand and support the FCs. Health
care professionals were challenged by families tendency to avoid talking
about difficult issues in relation to death and uncertainty in illness. It could be
a matter of unresolved conflicts that the patient and the FC were out of step
in their process of coping with illness, or that they were trying to shield each
other from difficult emotions. An alternative explanation may be found in
what is suggested to be part of the process of bereavement (Stroebe & Schut,
1999), that stressors must be both confronted and avoided, and that confrontations must also be dosed if a person is to cope effectively with losses. The
pendulum swinging between the extremes of life and death was described in
persons struggling to come to terms with their own impending death (Sand,
Olsson, & Strang, 2009). The process of becoming a FC might involve a
similar pendulum swinging between closeness and distance. This back-andforth movement may be complicated when the FC and the patient are at different phases of the disease trajectory, or when the FC neglects his or her own
needs in an attempt to protect the significant other. The challenge for the
health care professionals was to balance between the patients and the FCs
needs, and to open up for different ways of grieving. Studies indicate that
emotional disclosure does not necessarily facilitate adjustment to loss
(Stroebe, Schut, & Stroebe, 2005) and that a tacit agreement to avoid emotionally difficult issues may protect against helplessness (Milberg & Strang,
2011) and psychopathological symptoms (Coifman, Bonanno, Ray, & Gross,
2007). Health care professionals have to be aware that FCs acting on restoration-related demands by taking care of practical issues at home while the
patient underwent treatment may provide respite from mourning and brooding. Health care professionals providing support should be sensitive to the
FCs individual patterns of purposeful, conscious avoidance (Milberg &
Strang, 2011). To actively involve FCs in care plans might thus contribute to
an adaptive coping process in some situations, while encouraging withdrawal
from responsibility may be appropriate in other situations.
The FCs pendulum between hope and despair was compared with a roller
coaster and the health care professionals challenge was to meet them just in
time to sustain their hope. Professional caregivers could see how hope
changed and developed over time. FCs profound responsibility for keeping
hope alive, mostly by focusing on the present, has been described earlier

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(Sand et al., 2010). Hope allows people to hold conflicting expectations


simultaneously, which in turn fosters adaptive coping (Folkman, 2010).
Preparing for the worst while maintaining the hope that the patient will
recover frees room for simultaneous problem solving and emotional regulation (Folkman, 2010). Thus, an inner space might be created, which is the
basis for relationships with others, and where transformation can take place
(Crafoord, 1997). Families who dwelt in the midst of uncertainty, and shared
difficult emotions, even though no hope was there grew into greater closeness
in the family relationship. According to the posttraumatic growth model
(Cann et al., 2010; Tedeschi & Calhoun, 2004), life-threatening experiences
challenge and devastate ones assumptions and core beliefs about the world.
The cognitive processes that go hand in hand with rumination, when one
seeks to restore a sense of comprehension and meaning, may contribute to a
revised sense of lifes priorities and to personal growth. In the deepest sense,
each human being is alone in the meeting with existential questions of suffering. Health care professionals emphasize that it is important to remember that
they do not have all the answersbut they can be there and listen.

Study Strengths and Limitations


This study offers the perspective of health care professionals view of FCs of
cancer patients in Norway, a country which is only beginning to be described
in the family nursing literature. The sample consisted of social workers,
nurses, and physicians at a Norwegian University Hospital. The findings of a
qualitative study are bound by the context and we have described this context
for the reader to assess transferability. Credibility was reached by the participants opportunity to challenge and verify one anothers opinions during the
discussion in the focus group. Health care professionals in this qualitative
study were caring for patients with a variety of cancer diagnoses and their
FCs, and components from their experiences and dilemmas may be transferable to other similar contexts. The sample of health care professionals was
multidisciplinary. The aim of the sampling was to cover as many aspects of
the phenomenon as possible, and the breadth of the material strengthens the
study.

Conclusion
This study adds a more comprehensive approach to the understanding of FCs,
not merely as the principal source of support for the patients, and deepens the
understanding of the family as a system and a unit facing cancer. Even though
the family together is viewed as a unit of care, health care professionals face

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a different set of challenges trying to assist FCs who are involved in their own
separate though parallel trajectory of cancer. Health care professionals are
aware of vulnerable FCs in need for support and face challenges when they
attempt to involve FCs in patients hospital care and to support the familys
adjustment to the role of caregiving. A multidisciplinary team of professional
caregivers can support FCs in this trajectory by introducing them into the
health care system, by opening up for different ways to mourn losses, by
inviting them to take active part in caring for the patients, and by facilitating
them to accept support from others. Balancing between the needs of patients
and FCs while sustaining hope in both can be a challenge for professional
caregivers, who must sometimes struggle with their own feelings of inadequacy because of limited resources within health care.
Acknowledgments
We would like to thank the social workers and health care providers who participated
in the study, and the co-moderators of the focus groups: Hanne Camilla Heer (registered nurse), Liv Helgaker (psychiatric nurse), and Hanne Synnve Skedsmo Nilsen
(master of social work).

Authors Note
The study sponsor did not have a role in the study design, data collection and analyses,
or manuscript preparation. The authors had full access to all of the data and accept full
responsibility for the integrity and accuracy of the data.

Declaration of Conflicting Interests


The authors 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: This work was supported by SouthEastern Norway Regional Health Authority Research Fund (Grant 2008088: Improving
Symptom Management for Patients with Cancer and Their Caregivers through Internet
support: A randomized clinical trial, PI C. Ruland), the Center for Shared Decision
Making and Collaborative Care Research, Section for Physiotherapy and Social
Medicine, Department of Clinical Service, Oslo University Hospital, Norway.

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Author Biographies
Mirjam Ekstedt, RN, PhD, is an associate professor, KTH Royal Institute
Technology, School of Technology and Health in Stockholm, Sweden, and also affiliated with the Center for Shared Decision Making and Collaborative Care Research in
Oslo, Norway. Her research examines systems safety in health care organizations
including the human-technology-organization interaction using a collaborative,
mixed-methods approach; patient and family centered care; multidisciplinary intervention; and implementation of e-Health communication tools in health care systems.
Her specific focus is on how continuity and safety in home-care and transitional care
are improved for people with complex care needs. Her recent publications include,
Nurses Experiences of Using an Interactive Tailored Patient Assessment Tool One
Year Past Implementation in International Journal of Medical Informatics (2014,
with E. Brsund, C. Ruland, & M. Ekstedt), Sleep, Physical Activity and BMI in
Six to Ten-Year-Old Children Measured by Accelerometry: A Cross-Sectional Study
in The International Journal of Behavioral Nutrition and Physical Activity (2013,
with M. Ekstedt, G. Nyberg, M. Ingre, O. Ekblom, & C. Marcus), and To Live Close
to a Person With Cancer-Experiences of Family Caregivers in Social Work in Health
Care (2012, with U. Stenberg, C. M. Ruland, M. Olsson, & M. Ekstedt).
Una Stenberg, MSW, is a doctoral student and hospital social worker at Center for
Shared Decision Making and Collaborative Care Research, and Section of
Physiotherapy and Social Medicine, Oslo University Hospital, Norway. Her research
is focused on the family caregivers of cancer patients regarding how the daily life,
feelings, and thoughts of the whole family are affected by illness. Her recent publications include Family Caregivers of Cancer Patients: Perceived Burden and Symptoms
During the Early Phases of Cancer Treatment in Social Work in Health Care (2014,
with U. Stenberg, M. Cvancarova, M. Ekstedt, M. Olsson, & C. Ruland), Living
Close to a Person With Cancer: A Review of the International Literature and
Implications for Social Work Practice in Journal of Gerontological Social Work
(2014, with U. Stenberg, M. Ekstedt, M. Olsson, & C. Ruland), and To Live Close to
a Person With Cancer-Experiences of Family Caregivers in Social Work in Health
Care (2012, with U. Stenberg, C. M. Ruland, M. Olsson, & M. Ekstedt).
Mariann Olsson, MSW, PhD, is an associate professor at Karolinska Institutet and a
senior researcher at Stockholms Sjukhem, Stockholm, Sweden. She teaches Social
Work in Health to graduate social work students and Psychosocial Interventions in
Health Care to graduate interdisciplinary students. Her research interests include family support in end-of-life care as well as in a broader health and social care perspective. Her recent publications include, Family Members Experiences of the Impact of
the LCP in a Palliative Care Unit and a Geriatric Ward in Sweden in International
Journal of Palliative Nursing (2014, with M. L. Ekestrm, M. Olsson, S. Runesdotter,
& C. J. Furst), The Perspectives of Bereaved Family Members on Their Experiences

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Journal of Family Nursing 20(4)

of Support in Palliative Care in International Journal of Palliative Nursing (2013,


with T. Lundberg, M. Olsson, & C. J. Furst), and Adjustment and Social Support at
Workplace Shortly After Breast Cancer Surgery and Its Associations With Sick
Leave in Psycho-Oncology (2013, with M. Nilsson, L.-M. Petersson, A. WennmanLarsen, M. Olsson, M. Vaez, & K. Alexanderson).
Cornelia M. Ruland, RN, PhD, is a professor at the Department of Medicine,
University of Oslo, and Department Head of the Center for Shared Decision Making
and Collaborative Care Research at Oslo University Hospital, Norway. Her program
of research is devoted to developing and testing informatics tools for patientprovider
communication, shared decision-making, illness self-management, and patient centered collaborative care to improve patient care quality and patient outcomes. Recent
publications include, Effects of an Internet Support System to Assist Cancer Patients
in Reducing Symptom Distress: A Randomized Controlled Trial in Cancer Nursing
(2013, with C. M. P. Ruland, T. M. Andersen, A. M. Jeneson, S. P. Moore, G. H. M.
Grimsbo, E. M. Borosund, & M. Ellison) and Effects of a Computer-Supported
Interactive Tailored Patient Assessment Tool on Patient Care, Symptom Distress, and
Patients Need for Symptom Management Support: A Randomized Clinical Trial in
Journal of the American Medical Informatics Association (2010, with C. M. Ruland,
H. H. Holte, J. Roislien, C. Heaven, G. A. Hamilton, J. Kristiansen, . . . M. C. Ellison).

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