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To Live Close to a Person With Cancer—Experiences of Family Caregivers

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The purpose of this study was to obtain a deeper understanding of the experiences of Family Caregivers (FC) living close to a patient with cancer. This article reports on the findings from individual interviews with 15 FCs of patients with cancer. The interview transcripts were analyzed using qualitative hermeneutic analysis. This study revealed that living close to a cancer patient over the course of his or her illness affected many aspects of FCs lives in significant ways. Their experiences can be summarized with two major themes: (1) living in an ever changing life world and (2) balancing between conflicting interests and dilemmas. This study contributed to deeper insights into FC's experiences than previously reported in the literature.
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To Live Close to a Person With
Cancer—Experiences of Family
Caregivers
Una Stenberg MSW
a
b
, Cornelia M. Ruland RN PhD
a
c
, Mariann
Olsson MSW PhD
d
& Mirjam Ekstedt RN PhD
a
e
a
Center for Shared Decision Making and Collaborative Care
Research, Oslo University Hospital, Oslo, Norway
b
Section for Social Medicine, Department of Clinical Service,
Division of Cancer Medicine, Surgery and Transplantation, Oslo
University Hospital, Oslo, Norway
c
Department for Medicine, University of Oslo, Oslo, Norway
d
Division of Social Work, Department of Neurobiology, Care Sciences
and Society, Karolinska Institutet, Stockholm, Sweden
e
Royal Institute of Technology, KTH, School of Technology and
Health, Stockholm, Sweden
Version of record first published: 14 Nov 2012.
To cite this article: Una Stenberg MSW , Cornelia M. Ruland RN PhD , Mariann Olsson MSW PhD
& Mirjam Ekstedt RN PhD (2012): To Live Close to a Person With Cancer—Experiences of Family
Caregivers, Social Work in Health Care, 51:10, 909-926
To link to this article: http://dx.doi.org/10.1080/00981389.2012.714847
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Social Work in Health Care, 51:909–926, 2012
Copyright © Taylor & Francis Group, LLC
ISSN: 0098-1389 print/1541-034X online
DOI: 10.1080/00981389.2012.714847
To Live Close to a Person With
Cancer—Experiences of Family Caregivers
UNA STENBERG, MSW
Center for Shared Decision Making and Collaborative Care Research,
Oslo University Hospital, Oslo, Norway;
Section for Social Medicine, Department of Clinical Service, Division of Cancer
Medicine, Sur gery and Transplantation, Oslo University Hospital, Oslo, Norway
CORNELIA M. RULAND, RN, PhD
Center for Shared Decision Making and Collaborative Care Research,
Oslo University Hospital, Oslo, Norway;
Department for Medicine, University of Oslo, Oslo, Norway
MARIANN OLSSON, MSW, PhD
Division of Social Work, Department of Neurobiology, Care Sciences
and Society, Karolinska Institutet, Stockholm, Sweden
MIRJAM EKSTEDT, RN, PhD
Center for Shared Decision Making and Collaborative Care Research,
Oslo University Hospital, Oslo, Norway;
Royal Institute of Technology, KTH, School of Technology
and Health, Stockholm, Sweden
The purpose of this study was to obtain a deeper understanding of
the experiences of Family Caregivers (FC) living close to a patient
Received March 5, 2012; accepted July 18, 2012.
This work was supported by South-Eastern Norway Regional Health Authority Research
Fund (grant 10920: 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, and Section for Social Medicine,
Oslo University Hospital, Norway. We thank the participants in the study, and the different
local patient associations in Norwegian Cancer Society for recruiting them. Conflicts: There
are no potential conflicts of interest in this article. 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.
Address correspondence to Una Stenberg, MSW, Center for Shared Decision Making
and Collaborative Care Research, Forskningsveien 2b, Oslo University Hospital, Postboks
4950 Nydalen, 0424 Oslo, Norway. E-mail: una.stenberg@rr-research.no
909
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910 U. Stenberg et al.
with cancer. This article reports on the findings from individual
interviews with 15 FCs of patients with cancer. The interview tran-
scripts were analyzed using qualitative hermeneutic analysis. This
study revealed that living close to a cancer patient over the course
of his or her illness affected many aspects of FCs lives in signifi-
cant ways. Their experiences can be summarized with two major
themes: (1) living in an ever changing life world and (2) balancing
between conflicting interests and dilemmas. This study contributed
to deeper insights into FC’s experiences than previously reported in
the literature.
KEYWORDS cancer, family caregiver, experiences, life changes,
qualitative analysis, dilemmas
INTRODUCTION
A cancer diagnosis affects not only the patients, but also family caregivers
(FCs) and close friends. FCs are often the primary source of social and emo-
tional support for patients and take great responsibility for daily functioning
in the family (Milberg & Strang, 2004; Sand, Olsson & Strang, 2010). With a
trend toward shorter hospital stays, patients increasingly cope with long-term
illness at home. This, in turn, increases the caregivers’ burden, but also makes
their role as source of support for the patient even more important. When
the FC is well supported, the well being of the patient may be significantly
enhanced. Consequently, supporting FCs indirectly supports the patient as
well (Bultz, Speca, Brasher, Geggie, & Page, 2000; Murray et al., 2010). In this
study a FC is defined as a family member who “actively participates in shar-
ing the patient’s illness experience on a practical and/or emotional level”
(Beaver & Witham, 2007, p. 17), even though FCs in this study did not
describe the presently or former ill person as a “patient.” In recent years
an increasing attention has been paid to FCs’ situation and needs, and to
their rights. Health care services have been imposed to support FCs (World
Health Organization, 2012). With an increased understanding of the psy-
chosocial impact of caregiving, health care in the future may become more
individualized if FCs are included as an important resource for care to the
patient.
CURRENT KNOWLEDGE
Earlier research has focused on FCs’ burden of caregiving responsibilities or
activities they are not prepared to handle. FCs of cancer patients are deal-
ing with a number of physical health problems, social problems and needs
for information, and emotional problems related to caregiving both during
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To Live Close to a Person With Cancer 911
and after patients treatment for cancer (Stenberg, Ruland, & Miaskowski,
2010). In addition to caring for their l oved one, FCs often handle their
own symptoms of sleeping problems, fatigue, pain, or depression (Blum &
Sherman, 2010; Stenberg et al., 2010). Further, it is acknowledged that FCs
experience varying emotional reactions, such as feelings of fear, uncertainty,
helplessness, powerlessness, and lack of control (Houldin, 2007; Northfield &
Nebauer, 2010; Raveis & Pretter, 2005; Wideheim, Edvardsson, Pahlson, &
Ahlstrom, 2002). Earlier studies have also described FCs’ positive emotions,
experiences of finding meaning through caregiving, greater closeness with
the patient and changed worldviews (Demiralp et al., 2010; Grbich, Parker, &
Maddocks 2001a; Mok, Chan, Chan, & Yeung, 2003; Northfield & Nebauer,
2010). Experiences of significant social, financial and employment implica-
tions, including changes in r oles, expectations and responsibilities have also
been described (Coristine, Crooks, Grunfeld, Stonebridge, & Christie, 2003;
Grbich, Maddocs, & Parker, 2001b; Lethborg, Kissane, & Burns, 2003; Roing,
Hirsch, & Holmstrom, 2008; Teschendorf et al., 2007).
Several qualitative studies have provided some insight into FCs’ expe-
riences, most of these studies included certain aspects of FCs’ experiences,
like quality of life (Ferrell, Ervin, Smith, Marek, & Melancon, 2002) managing
symptoms and suggestions for interventions (Harden et al., 2002), and needs
for support (Kalnins, 2006). A recent study that focused on FCs’ experiences
during their journey of caregiving, found that FCs share much of the illness
experience with the patient, including different emotions or fluctuations of
psychological well-being (Murray et al., 2010). However, the way in which
FCs experience everyday caregiving during the journey of caregiving is still
poorly understood (Northfield, 2010; Blum & Sherman, 2010), and specifi-
cally there are knowledge gaps regarding the acute phase of the caregiving
journey (Kim & Given, 2008; Kuenzler, Hodgkinson, Zindel, Bargetzi, &
Znoj, 2011). To characterize the experiences of FCs is challenging because
characteristics of cancer patients vary widely (Nijboer, Triemstra, Tempelaar,
Sanderman, & Van Den Bos, 1999) and FCs themselves are a highly hetero-
geneous group. The present study aimed to obtain a deeper understanding
of the challenges and experiences of FCs living close to a patient with dif-
ferent cancer diagnoses, in different stages of the cancer trajectory and with
different outcomes of their illness. This study is part of a larger interdisci-
plinary and international collaboration study to advance knowledge of FCs
of cancer patients’ symptoms, problems, burden, and health-related quality
of life, and to use this knowledge to develop and test an intervention for FC
support.
METHOD
To meet the aim of the study a hermeneutic approach was used. Individual
interviews with FCs of patients with cancer were chosen in order to obtain a
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912 U. Stenberg et al.
deeper understanding of the FCs’ everyday life by analyzing their expressed
meaning and implicit issues that sometimes are hidden in the text (Kvale &
Brinkmann, 2009; Mak & Elwyn, 2003). This study was planned and per-
formed in compliance with the principles outlined in the Declaration of
Helsinki (2010), 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 participants who would volunteer to participate in an interview,
leaders of five local patient associations in the Norwegian Cancer Society
were contacted, who dispatched letters about the study to FCs of their group
members. The leaders were infor med about the inclusion criteria; men or
women, age above 18 years who were a FC of a patient with cancer and
familiar with the Norwegian language. Also, a variation in participants’ fam-
ily situation, occupation, patient diagnosis, time since diagnosis, and stage
of illness was desirable, to obtain as much breadth and depth from the inter-
views as possible. Each leader identified two to four FCs in their group who
fulfilled the criteria and who might be interested in getting more information
about the study. The first author contacted them, and interviews were sched-
uled. Of those receiving information about the study, everyone accepted to
participate, and none withdrew their participation after inclusion.
INTERVIEW PROCEDURE
An interview guide was developed, based on the literature (Stenberg et al.,
2010) and discussions in the interprofessional research group. To ensure an
environment as confidence-inspiring as possible, the interviews were con-
ducted in a place according to the FCs’ wishes, at home, or in a meeting room
at the first author’s office. The first author, a social worker experienced in
cancer care, conducted the interviews. The interviews were in dialogue form
and participants were encouraged to describe in their own words concrete
experiences from their whole life situation as FC to a patient with cancer. The
opening question was purposely broad and open-ended to encourage FCs
to share their own perspectives: “Can you tell me about your experiences
and the challenges you have encountered in the time that has passed since
you become a FC?” The interviewer asked probing questions focused on the
challenges of day-to-day life during the patient’s illness, such as: “tell me
about a good and a bad day” or “how did these experiences impact on your
daily life?” During the interviews the FCs spontaneously described what they
had experienced, felt and done related to their situation as a FC of a cancer
patient during the illness trajectory. Further questions were posed during the
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To Live Close to a Person With Cancer 913
interview in order to elaborate and clarify information, explore, deepen and
validate the answers, or guide the FCs back to the topic (Kvale & Brinkmann,
2009). The interviews, which lasted between 45 and 120 minutes, were tape
recorded and transcribed verbatim (MacLean, Meyer, & Estable, 2004).
DATA ANALYSIS
The hermeneutic method of analysis and interpretation has no formally
described method, but we followed the principles, originally described by
Radnitzky (1968), later adapted and extended by Kvale and Brinkmann,
(2009, pp. 233–234) and used in several studies (Milberg & Strang, 2004; Sand
et al., 2010). The analytical process formed a continous back and forth move-
ment. First the transcribed interviews were read from the beginning to the
end to get a general sense and overview of overall experiences. During this
first naive reading the reader allowed the text to say something about reality
without questioning and analyzing. In the next reading, pre-understanding
had to be reconsidered in relation to the text and the text was carefully read
to discover significant expressions and meaning units with common and dis-
tinguished qualities. The text with these meaning units was again carefully
read with a focus on underlying meaning and implicit issues that were hid-
den in the text. The reading was guided by the following questions generated
from the text: “how do this FC experience to live close to a patient with can-
cer?” Significant expressions were coded and compared to find FCs’ central
experiences (Table 1). This resulted in two main themes after which dis-
tinctive threads were sought, resulting in seven sub themes. The first author
mainly carried out the analytic process. The professional pre-understanding
made the text reveal what FC was saying and saw it as valid. Themes and
sub-themes that were salient in the interviews were strengthened and vali-
dated because the co-authors (MO and ME) acted as co-judges by examining
the relevance and applicability of the themes, separately and in conjuga-
tion several times, as part of reflexivity (Malterud, 2001). The co-authors are
TABLE 1 Example of the Analytic Process
Example of quotation/
meaning unit Categories Sub-theme Theme
Obviously it was a scary and
terrifying period, both for my
mother and us. And I’m an
only child and my parents are
divorced too, so it was really
just me. At that time I was
pregnant too, so I was extra
vulnerable.
Loneliness
Vulnerability
Feeling
responsible
Living with significant
uncertainty
Changed responsibility
Changed social life
New insight and
greater closeness
within the family
A changing
life world
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914 U. Stenberg et al.
one social worker and one nurse, both senior researchers experienced in
qualitative analysis. 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.”
FINDINGS
A total of 15 FCs (five men and 10 women) were interviewed
between February and May 2009. These encompassed nine spouses, five
sons/daughters, and one sister. At the time of the interview, participants
were between 35 and 77 years of age, 10 FCs were working and five were
retired. The cancer diagnosis of the patients varied, as did time since diagno-
sis. The findings provide a deeper understanding of the experiences of FCs
living close to a person with cancer and give insight into FCs’ experiences
and challenges during the patient’s illness trajectory. The first major theme
was named “A changing life world.” Living close to a cancer patient affected
several aspects of FCs’ lives in significant ways; when FCs summarized their
experiences during the interview, all changes that had taken place in their
lives became apparent. The second major theme, “balancing between dilem-
mas,” is our interpretation of the meaning attached to their narratives and
represents the poles the FCs needed to live and act in between. The two
main themes were described by seven sub-themes (Table 2), each of which
is outlined below using direct quotations from the text.
A Changing Life World
FCs experienced that their entire lives changed when the patient was diag-
nosed with cancer. They described their experience as a journey parallel to
the patient’s illness, which could stretch over a longer or shorter period of
time. Their day-to-day life was constantly weighted down by uncertainty and
unpredictability, while their responsibilities changed as well as their social
lives and relations. For some, these changes became permanent. The greatest
TABLE 2 Thematic Analysis
Major themes Sub-themes
A changing life
world
Living with significant uncertainty
Changed responsibility
Changed social life
New insight and greater closeness within the family
Balancing between
dilemmas
Between the known and unknown
Between different demands and needs
The experience of feeling helpless and needing to
be competent and capable at the same time
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To Live Close to a Person With Cancer 915
challenge the FCs faced during this process was how to adapt to a changed
and unpredictable new life, which, however, could sometimes lead to an
increased sense of connectedness and greater insight into their own lives.
L
IVING WITH UNCERTAINTY
The first time after the patient had been diagnosed was (often) filled with
feelings of uncertainty, fear of the future, and worries about death. This
made it difficult for FCs to concentrate. They also had problems sleeping at
night due to stress. It was especially hard for them to watch the patient go
from healthy to sick and being in need of help. They experienced cancer
as unpredictable, and were constantly worried about how the illness would
progress. This fear diminished for some when the treatment was finished,
while others lived with a constant fear of that the patient might die, even a
long time after the treatment was finished. It was especially the time before
controls and waiting for test results that were the most unsettling for the FCs.
These feelings were often described as if the fear had been imprinted on
them: “You are always frightened. When you first get hit with the news that
someone close to you has become sick, then it stays with you forever. I can
feel it right now, that it is there.”
AC
HANGED RESPONSIBILITY
FCs would find themselves taking on a large number of responsibilities for
taking care of the patient’s varied needs for care and support when suffering
from different physical and mental symptoms, pain or behavioral changes.
These changes could affect their day-to-day life over a short period, or it
could mean greater permanent changes in responsibility. The FCs experi-
enced that both their own role, and the relations within the family, changed
during the patient’s illness. These changes were frequently found to be per-
manent. In particular, FCs of patients who suffered from many issues after
illness and treatment, noticed how their role in relation to the patient became
increasingly more to be a provider of nursing care.
The FCs wanted to be there for the patient as much as their situation
would let them. They frequently felt that, being the one closest to the patient,
providing help and care was a natural chore that was expected of them.
Some saw this as a chance to give something back to the patient. FCs felt
they had been partly responsible for choosing the right treatment for the
patient. Time spent acquiring information was therefore seen as an important
part of their duty to help the patient.
AC
HANGED SOCIAL LIFE
The patient’s cancer led to significant changes in the FCs’ social lives. When
the patient was undergoing treatment, the social life of the FCs was severely
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916 U. Stenberg et al.
limited since the FC would take the patient to the hospital, take care of other
family members, and take care of the house as well as work. In particular,
FCs of patients suffering from chronic problems and symptoms after treat-
ment were affected by this upheaval in their social life. This might entail that
they could not get out much because the patient needed care, that it could
be hard to leave the patient alone, or that the patient did not want to be
around other people in the same way as before:
I haven’t gotten out since he got so sick. We used to hike a lot, bike,
and do orienteering, and go skiing all winter long. But that’s all past, and
that’s frustrating for me. I go out a few times, just little trips, about an
hour or so, but it’s so boring to walk around alone, and I can’t help but
think of him laying at home. He has his ups and downs, so I have to
bring my phone everywhere I go.
The FCs experienced a sense of loneliness, especially right after the patient
became sick. This could last for a long time, even after the patient had
finished treatment. Being alone gave them an opportunity to vent their emo-
tions, as well as evoked a desire to share their thoughts and feelings with
others. This was something that was described as difficult as the FCs expe-
rienced little sympathy and understanding from friends and family. This was
especially apparent with FCs who encountered emotional reactions after the
acute phase of the illness and treatment was over.
G
REATER CLOSENESS AND NEW INSIGHTS
Some FCs described some positive aspects of their situation, such as
increased intimacy and stability in the family. The emotional bonds to the
patient and others that were closer were strengthened. The sense of a
shared experience of difficult emotions, “fighting a struggle” together with
the patient throughout the illness, led to a strengthening of their relation-
ship, becoming deeper and stronger. The reactions and changes the FCs
had experienced helped them gain a new insights and understanding for
other people’s situation. Some FC reported that they also developed a greater
understanding of their own priorities: “My relationship with my mother has
become much better recently. I’m afraid of losing her, so I’ve made sure I
have more time for her in my life than I used to. It’s natural you know,
because I’ve got two children now, and I’m alone.”
Balancing Between Dilemmas
FCs described caregiving as if they were walking a tightrope, trying to bal-
ance different problems and conflicting needs: between the known and
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To Live Close to a Person With Cancer 917
unknown; between different needs and demands and between feeling
helpless and needing to be competent at the same time.
B
ETWEEN THE KNOWN AND UNKNOWN
Early on in the illness trajectory the FCs experienced the dilemma of being
caught between the known and unknown. In the time directly after the
patient had been diagnosed with cancer, they discovered that their knowl-
edge was not sufficient, and they felt they needed new thorough information.
It was especially in the first meetings with health personnel that they felt this
uncertainty when they were also trying to get new information: “You can’t sit
there asking a thousand questions, because you haven’t got any. You’re in
shock. Both as a patient and as a loved one.” When meeting with health per-
sonnel, the FCs were focused on gaining information and to be involved in
the treatment of the patient, while also feeling weak and vulnerable. During
the treatment(s) of the patient FCs felt the challenge of being the patient’s
closest aid and resource, while also having to handle being in an unknown
place and having to deal with strangers and health personnel’s knowledge,
skills, and attitudes. The role of an FC was described as a lonely and vulner-
able one, placed in a poorly defined boundary between patient and health
care. FCs experienced that the patient had expectations of support from them
throughout the illness while health personnel expected them to contribute,
all this while many felt like they were not being considered or involved in
the treatment of the patient. When the patient was sent home after treatment,
many FCs encountered insecurity, feeling as if they had been left to fend for
themselves with regards to the patient:
At the end of the radiation, he was home then you know, and it was
bad, when he started hallucinating. He was completely gone. Then we
found out that his blood pressure was too low, and I realized it was the
morphine he was allergic to. I had to lock all the doors, he was trying to
get out in the middle of the night and drive around and, no, it was really
awful. I had to call our doctor so I could be told how to manage all this.
BETWEEN DEMANDS AND NEEDS
The FCs described the balancing between different roles and needs in their
daily life after the cancer was diagnosed as challenging. Not only did they
have to consider the patient’s needs and their own reactions, but also the
needs of other family members that needed extra care, support, and infor-
mation. They found that the illness brought with it several new commitments
and duties that needed work to be done, while work and studies still
demanded their attention. Those FCs who also had to take care of small
children or older parents and had a job or studies, felt especially like they
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918 U. Stenberg et al.
were being stretched thin. Some of them had, over time, developed their
own health problems:
I went into a deep, dark depression. I was institutionalised for three
months. ...I’m not saying that my sister and her daughter were the only
strain on me, it wasn’t the only one. But it was a big deal, yeah, and
when you have to give and give and give some more, when you really
haven’t got that much to give, and you just have to keep giving, and can’t
say no, and you’ve never really learned how, as an adult, to take care of
yourself, then it gets difficult.
Balancing their own needs, as well as the needs of the patient was perceived
as difficult. The FCs had lost, in a sense, the person who was possibly their
closest confidant and supporter, as they tried to protect the patient so that he
or she would not worry about the FC’s problems. “At the bedside you have
to be the strong one, so you can give the patient the feeling that you are
informed, well informed even, and saying the right things.” How challeng-
ing the FCs felt having to shield the patient from their own reactions was
dependant on the patient’s health, and how the patient handled their own
situation at any given time. The FCs found it easier to cope with their own
needs when the patients were able to handle the situation in a constructive
way. This was especially apparent where the FC and patient had the expe-
rience of battling through the illness together, or when the patient and FC
had complemented and strengthened each other in how they managed their
new circumstances. FCs who found that they had faced the challenges very
differently from how the patient had faced them, or were frustrated about
how the patient dealt with their situation, felt that their own needs became
hard to balance with those of the patient.
B
EING HELPLESS AND COMPETENT AT THE SAME TIME
FCs felt a sense of helplessness as they were trying to help and support
the patient. The periods where they could not do much else for the patient
except for being there were described as challenging. Witnessing the patient
in pain, without any way to help was also seen as difficult. Some had also
conflicting feelings about when to take over responsibility and when to let
go. The urge to be there for the patient and help was strong, at the same
time the relief from not having to, or the feeling of not being able to help
was also there. Although FCs had been there for the patient as much as they
could, they still struggled with guilt and felt that they had not been there
enough for the patient: “When I look back on it I think that I wasn’t able
to do enough for my wife in that period. ... So I feel like I really let her
down, because she probably could have needed a lot more support than I
gave her.”
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To Live Close to a Person With Cancer 919
DISCUSSION
This study contributed to a deeper understanding of the experiences of FCs
who live close to a patient with cancer. To live close to a patient with cancer
is to live in a world of tensions and dilemmas during a period in which
their whole life changes dramatically. The most challenging aspects were
living with uncertainty, changed responsibilities, and a changed social life.
However, FCs’ experiences included also new insights and greater closeness
within their family. Although the interviews were conducted on one point in
time, they were narratives about a process or a journey. The FCs’ journeys
appeared to be parallel to the illness trajectory of the patient, and could
last for a shorter or longer time. It could lead to new insights and/or closer
relationships, or it could end in feelings of guilt, helplessness, and distress.
Previous empirical research from palliative care has found that certain “key”
time points in the illness tend to be particularly problematic for both FCs
and patients: at diagnosis, at home after initial treatment, at recurrence, and
during the terminal stage (Kalnins, 2006; Murray et al., 2010). This study’s
findings concur with previous research describing FCs’ experiences of ambi-
guity and uncertainty by moving backward and forward in the process, rather
than being able to move on in a linear trajectory (Harrow, Wells, Barbour, &
Cable, 2008; Lethborg et al., 2003).
FCs’ varying emotional reactions showed how they felt lonely at the
same time as they felt a strengthened connectedness and bond with the
patient or other family members. In other studies, different metaphors have
been used to describe the varying and challenging emotions during the jour-
ney of caregiving: “emotional roller coaster” (Grbich et al., 2001a; Harden
et al., 2002), “whirlwind of emotions” (Northfield & Nebauer, 2010), and
“trying to ride the waves” (Oldham, Kristjanson, Ng, White, & Wilkes, 2006).
Even though the emotional reactions could prove to be challenging, the
results show, in accordance with newer research, how FCs can experience an
opportunity for change or personal growth (Demiralp et al., 2010; Houldin,
2007; Murray et al., 2010; Northfield & Nebauer, 2010). At the same time as
FCs felt a sense of helplessness they also experienced how their role as an
FC was important, not just as the patient’s emotional support, but also as
someone who could gather information and knowledge (e.g., about treat-
ment options). Being able to give something back to the patient was seen as
something positive, but at the same time they also could feel guilty because
they did not feel like they were doing enough for the patient. This study
confirmed several general themes that have emerged in previous research
regarding a changed responsibility (Brown & Stetz, 1999; Houldin, 2007;
McCorry, Dempster, Clarke, & Doyle, 2009).
Since FCs found it hard to leave the patient alone, they found themselves
cut off from their normal social lives and became isolated in their home. This
sensation of loneliness and the altered relationships with their social network
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920 U. Stenberg et al.
is something that has been confirmed in other studies as well (Ferrell et al.,
2002; Murray et al., 2010; Oldham et al., 2006; Sand & Strang, 2006; Soothill
et al., 2001).
The pendulum-like movement through a variety of emotions has also
been described similarly by Stroebe and Schut (1999, 2010). This dual process
is like swinging between a problem-solving and the loss-oriented process,
with the motion of the pendulum being important in itself (Carr, 2010;
Stroebe & Schut, 1999). FCs feelings of shock, injustice, sorrow, and fear
shown in this study are related to the loss-oriented part of the process.
Handling the consequences and changes in life can be characterized as a
part of the problem-solving process. At times when the FCs had been con-
fronted with the loss of a social life or the sense of increased responsibility,
they needed to understand the illness and their own caregiving role. At the
same time, many FCs felt that their role was important and meaningful, and
the sense of connectedness and bond in the family was strengthened.
The second major theme, FCs’ experiences of various dilemmas; balanc-
ing between the known and unknown, between demands and needs, and
feeling helpless and needing to be competent at the same time, have cer-
tain similarities to descriptions in earlier studies using metaphors; “walking
a fine line” (Thulesius, Hakansson, & Petersson, 2003), “living on the edge”
(Northfield & Nebauer, 2010). Also, this theme is congruent with the Dual
Process Model; the known everyday life is lost and the FCs are confronted
with the unknown. Their skills are challenged by new demands. Even if the
Dual process model was originally formulated to address coping after loss of
a partner, it is applicable to the losses described by the FC throughout the
illness trajectory as aspects of living close to a patient with cancer.
The dilemma of balancing between a known and unknown situation
is related to the concept of “limit situation” (Jaspers, 1994). In a limit sit-
uation such as impending death, struggle, suffering, and guilt, a person’s
fragility is exposed and feelings of not being “at home” in one’s body
might appear (Ekstedt & Fagerberg, 2005; Rasmussen, Jansson, & Norberg,
2000). “At homeness” has been described as an interchangeable existential
concept referring to experiences of feeling safe and secure, and an experi-
ence of wholeness, connectedness, and a relatedness to oneself and others
(Rasmussen et al., 2000; Rasmussen & Edvardsson, 2007). One can look on
such limit situations as opportunities one is able to make use, of or as oppor-
tunities one can waste (Ghaemi, 2007). This view on FCs living in a limit
situation, during the caregiver journey, and struggling with dilemmas like in
a dual process, provides an opportunity for growth and maturity (feeling of
being at-home), but entails at the same time a risk of being left in desolation
(a feeling of not being at-home).
The way FCs had experienced the cancer diagnosis as a shock, and
how their worries and concerns affected the time right after the diagnosis
can be considered as a limit situation. FCs’ feelings of uncertainty, fear of
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To Live Close to a Person With Cancer 921
the future, and a feeling of not having sufficient knowledge to cope with the
situation were mixed with positive experiences related to fighting a battle
alongside the patient through the illness trajectory. At the same time, FCs
felt lonely and experienced that they were not being involved by social and
health care personnel in the treatment of the patient. The feeling of not being
at-home was reinforced by the experience of being at an unknown location
and having to deal with the knowledge, behavior, and attitudes of unknown
social and health care personnel.
Results show how FCs found it especially hard to balance own needs
and demands in caregiving. FCs were in danger of developing health
problems such as depression and exhaustion. FCs balancing between
demands from others and own needs are also identified in previous
research. According to Blum and Sherman (2010), FCs provide extraordinary
uncompensated care that is physically, emotionally, socially, and financially
demanding, and results in the neglect of their own needs. FCs feel stretched
in different directions (Coristine et al., 2003). FCs with caregiving tasks for
other family members in addition to the patient were worried about the
patient when they were not with him or her, and they were worried about
other family members when they were with the patient. As a result they tried
to do it all/too much, at work, at home, and with the patient. To support the
patient was considered part of an unspoken ethical requirement (Logstrup,
1997). This entailed that FCs stretched their limits to meet the expectations
from themselves, from the patient or health care system and society at large.
Despite this, FCs struggled with conscience and guilt, as they felt they should
provide even more for the patient. This is consistent with the findings of
Carlander, Ternestedt, Sahlberg-Blom, Hellstrom, and Sandberg (2011) who
found that FCs of terminal patients with cancer at home are striving for the
optimal way of living. Patterns in their study are described as “being me”
and “being us” in a family living close to death. The findings identify how
ways of living together were challenging to FCs, and how living close to
death was about how to promote the individual self-image (me-ness) and at
the same time find new ways of being a family (we-ness). FCs roles were,
as in the study of Carlander and colleagues (2011), gradually erased and
replaced with a new role and identity that represented a new and compre-
hensive responsibility for the patient, and adaption and change in social life
in general.
This study is limited to the experiences of a small group of FCs con-
sisting of men and women, younger and older, adult children, spouses, and
sisters of patients with different types of cancer. The findings in a qualita-
tive study are bound by the context and we have described this context in
order for the reader to assess transferability. FCs in this study were caring
for patients with a variety of cancer diagnoses, and therefore, components
from FCs’ experiences and dilemmas might be transferable to other simi-
lar contexts, like FCs of patients with other chronic diseases. At the same
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922 U. Stenberg et al.
time the breadth of material strengthens the study. Both men and women as
FCs of patients with different cancer diagnoses are included. This qualitative
method (hermeneutic) allowed for further breadth and depth of FCs’ expe-
riences, and has identified several dilemmas of FCs’ experiences. The aim of
the sampling was to cover as many aspects of the experiences as possible.
The recruitment of FCs was conducted by different local patient associations
in Norwegian Cancer Society, and may have led us to include FCs who were
able to manage changes and dilemmas. More burdened or more vulnerable
groups may be less likely to volunteer or engage in a patient association.
To enhance trustworthiness of the analysis, interpretations of the material
have been discussed repeatedly with different research fellows and other
doctoral students. These discussions during the analysis process have added
important reflections, interpretations, and patterns within the FCs’ descrip-
tions. In this study the primary focus was on the challenging experiences of
caregiving, although we are well aware of the criticism of conceptualizing
caregiving only as a burdensome experience on the grounds that caregiving
can also be rewarding (Hudson & Payne, 2008; Hudson, Hayman-White,
Aranda, & Kristjanson, 2006; Nijboer et al., 1998).
CONCLUSION
In conclusion, the current research shows that living close to a cancer patient
is to live in a world of tension and dilemmas at a time when the whole of
one’s life is changed. The first major theme was that living close to a can-
cer patient over the course of his or her illness affected many aspects of
FC’s lives in significant ways. Most challenging was living with uncertainty,
changed responsibilities, and social life. In addition, FCs experiences lead
to new insights and greater closeness within their family. The second major
theme was that living close to a cancer patient is a balancing process between
conflicting interests and different dilemmas. FCs experienced a constant need
to balance the known and unknown, handling different demands and needs,
and to manage uncertainty and the experience of feeling helpless and need-
ing to be competent at the same time. The two main themes and sub themes
that were generated from these interviews confirm and expand on previ-
ous literature about FCs’ experiences. This study contributes to a deeper
understanding of how FCs’ emotions and burdens vary over time, back and
forth in the process of caregiving, parallel to the patients illness, which has
not been so clearly reported before. Although research on family caregiving
has expanded dramatically from 2000, few studies have so far explored FCs’
experiences of balancing between different dilemmas or the challenges FCs
encounter. During the caregiver journey, FCs are living in a limiting situation
and are struggling with dilemmas in a dual process. This provides an oppor-
tunity for growth and maturity, but at the same time entails a risk of being
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To Live Close to a Person With Cancer 923
left in desolation. FCs are in need of support to feel safe and secure, and this
makes our findings important for social and health care providers.
IMPLICATIONS FOR PRACTICE
FCs need to be seen and acknowledged as the patient’s most important
supporter. They also need to feel comfortable with showing their varying
emotional reactions, both in the loss-oriented and the problem-solving part
of the process, as well as in their relationship with social and health care
providers. Many FCs may need social and health care providers to help
point out their choices and resources. FCs typically required assistance about
how to obtain health services, contacting other FCs, emotional support, and
being acknowledged and invited into the treatment process of the patient.
Receiving this kind of support can help FCs in improving their sense of hope,
wholeness, and connectedness. There is a need to bridge the gap between
research and practice by understanding FCs situation and to develop tai-
lored interventions that support FCs in their roles (Blum & Sherman, 2010).
According to a review by Candy, Jones, Drake, Leurent, and King (2011) evi-
dence shows that supportive interventions may help reduce the caregiver’s
psychological distress, but there is a need for further research to identify the
benefits, to assess the effects of the interventions and to implement such
interventions in practice. Increased knowledge can help clinicians improve
communication and better tailor information and support for FCs during the
patient’s illness trajectory. An online support service has been shown to
provide support for patients’ need for information and peer support in peri-
ods when they have felt like they were “left in a void” (Grimsbo, Finset, &
Ruland, 2011), and resulted in significantly less global symptom distress
(Ruland et al., 2012). There is reason to believe that a similar Web-based
support system could have a similar benefit for FCs. To help meet the FCs
need for support, our research team is currently developing a Web-based
support system for FCs (PI: C. Ruland, co-author), which integrates the iden-
tified needs for FCs support elicited in this study. This support system is
designed to help FCs manage their own special issues and difficulties related
to being a caregiver, to providing them with information to help the patient
manage their symptoms and problems, and to provide them with peer and
professional support.
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... To be cared for, and to die at home is important to many cancer patients and their family caregivers (hereafter: caregiver) [1]. To be able to fulfil home death, support from caregivers is important [2]. They know the patient well and have the experience of how to help the individual. ...
... Therefore, support to caregivers from healthcare professionals is equally important [8,9]. Caregivers experience physical, psychological, social and financial challenges [2]. Many are not prepared for the demands and challenges they encounter [10]. ...
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... Caregivers may also be conflicted about leaving the person with cancer home alone out of fear that something disastrous will happen. Commonly, this fear results in caregivers' withdrawal from social activities or work activities relevant to their self-worth (Stenberg et al., 2012). In addition, cancer caregivers go through anticipatory grief and bereavement, in which caregivers reported elevated feelings of loneliness when their loved one dies. ...
... In conclusion, there is growing evidence that caregiver loneliness can be addressed in different ways, including support groups, technology, resilience training, community support services such as befriending, and one-on-one or group conversations with a trained mental health professional (Stenberg et al., 2012). Notably, the interventions described above are most effective if they are conducted in conjunction with interventions that target individuals' maladaptive thoughts such as through CBT (Beller and Wagner, 2018). ...
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Background: Relatives of patients with cancer are at risk of experiencing changes to their everyday life, health, and quality of life. Partners of men with breast cancer may face certain challenges regarding their need for information, care, and support. Objective: The purpose was to explore the experiences of the partners of men with breast cancer in relation to care, information, and emotional support and to explore how men with breast cancer impact the partners' everyday life. Method: This was a qualitative study based on individual interviews applying a phenomenological-hermeneutical analysis. Results: Four themes were identified in the 12 female partners' narratives: a wall of ignorance, being seen is not a matter of course, emotional stress affects everyday life, and side effects strain the couples' relationship. Conclusion: The female partners' need for information on male breast cancer (MBC) is not sufficiently met because of lack of and poorly communicated information on the topic. The female partner assumes the role of advocate, actively seeking information when in contact with health professionals. Daily life is negatively affected by a lack of acknowledgement of the impact of MBC on their lives and needs by their social networks or health professionals. Implications for practice: Female partners have individual care, information, and emotional support needs that may differ from those of their male partner with breast cancer. Health professionals must improve communication with patients and relatives as there are lack of knowledge available regarding MBC and lack of evidence-based guidelines.
... The family should be regarded as both a care-receiving and a care-providing unit [82]. Since family members have a major role in the patients' well-being and the improvement of their quality of life, supporting them means continuing the patients' care and achieving better outcomes in terms of recovery [84]. Burdening caregivers with excessive responsibilities entails adverse consequences such as feelings of inadequacy and inability, which will then make them feel trapped in the difficult role of sole care-giver and makes them experience higher levels of mental distress; these consequences affect the caregiver's quality of life and thereby the quality of patient care. ...
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As the third leading cause of death in Iran, cancer has had an accelerated growth in recent years. In most patients, cancer is diagnosed in advanced stages; providing palliative care is therefore a perceived need of health systems for the management of disease symptoms, reducing the rates of hospitalization (especially in ICUs) and improving the quality of life in patients and their families. Meeting this need requires an emphasis on the quality of care and attention to three important aspects of care, namely structure, process and outcome. This section briefly explains the structure of the health care system in Iran and discusses the embodiment of a palliative care system within it and examines the most important processes in the implementation of a palliative care system and the likely effects of these care procedures on the quality of life in cancer patients and their families.
Article
Purpose This study explored how the phenomenon of meals appeared in the interrelationship between adolescents and young adults (AYAs) receiving high-emetogenic chemotherapy, their next of kin and health professionals in the clinical setting. Method Data were collected by 140 hours of participant observation conducted to gain insights into the nature of how meals appeared in the interrelationship between 12 AYAs (age 15-29 years), their next-of-kin and health professionals. The AYAs were patients with oncological and haematological diseases recruited from three university hospital departments. Data analysis was guided by van Manen's hermeneutic-phenomenological approach. Results The essential meaning of the phenomenon may be characterized by the overarching theme; ‘Seeking the joy of meals in the shadow of treatment’ and the following three themes: ‘Meals as a necessary evil’ (AYAs); ‘Meals as a matter of love’ (next-of-kin); and ‘Meals in the shadow of medical treatment’ (health professionals). Conclusions Meals is a multi-facetted and complex phenomenon that has different meanings to AYAs, next-of-kin and health professionals. To the AYAs, meals emerged as a necessary evil in connection with which urges to eat occurred as glimpses of desire. Prominent feelings of powerlessness and food as love were highlighted by the next-of-kin, whereas food and meals appeared secondary to treatment for health professionals, reflecting the traditional biomedical paradigm. The findings revealed that adopting a holistic approach to AYAs concerning meals can have the potential to increase their food intake.
Article
Aim:: The main aim of this study was to investigate family member's experiences of communicating with health professionals (HP) during end-of-life care in acute medical wards and a nursing home. Methods:: A qualitative approach using 19 semi-structured interviews to collect data was used. The text was analysed using a content analysis methodology, extracting content that reflected family member's experiences of end-of-life care in acute medical wards, and a nursing home in Iceland. Results:: Four themes were identified as contributing to favourable communication with HPs in end-of-life care: establishing a relationship; flow of information; environment; acceptance at the time of death. Conclusion:: Findings suggested that the context of communication in end-of-life care is more than just a conversation. It includes health professional's appearances, decision-making and respect. Satisfactory communication is a necessary factor of quality of care and the fundamental aspect of the establishment of a positive interpersonal relationship.
Article
Objective: The primary aim of this qualitative study was to explore myeloma carers/caregivers experience during outpatient-based oral treatment for patients with multiple myeloma (MM). Data sources: Literature review. In-depth, open-ended interviews of seven purposively selected caregivers of MM patients in the United Kingdom. Conclusion: Findings showed that carers were involved in practical and emotional caregiving activities, assisting the patient with managing complex oral combination treatments, and monitoring side effects. Care-giving activities continued after treatment, and experiences were described within the context of the MM journey and fear and uncertainty about the future. Caregivers also experienced a range of emotions, which they often kept hidden from the MM patients and other family members. Difficulties balancing caring responsibilities, particularly for those with jobs, were expressed. Implications for nursing practice: Nurses need to understand the importance of considering carers' involvement when assessing patients, and the need to address caregivers' continuing support and information needs. Problems navigating health and social care processes should be anticipated, and nurses can direct the carers to appropriate resources to meet their needs.
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Partners of breast cancer patients are relied upon for support at a time when their own coping abilities are taxed by the challenge of cancer, yet few studies have investigated psychosocial interventions that include or target the patient's ‘significant other’. Of the 118 consecutive patients approached, 36 patients and their partners participated in a randomized controlled trial of a brief psychoeducational group program for partners only. Psychometric instruments (including the Profile of Mood States (POMS), the Index of Marital Satisfaction (IMS) and DUKE‐UNC Functional Social Support Scale (FSSS)) were administered pre‐test, post‐test and at 3 months follow‐up. The Mental Adjustment to Cancer Scale (MAC) was also completed by patients. Three months after the intervention, partners had less mood disturbance than did controls. Patients whose partners received the intervention reported less mood disturbance, greater confidant support (CS) and greater marital satisfaction. Copyright © 2000 John Wiley & Sons, Ltd.
Article
Support for the family is a key component of palliative care practice and philosophy, with both patient and family construed as the 'unit of care'. However, there is not always formal acknowledgement of the importance of the family carer role, or that of friends, neighbours, and other non-professional, informal carers. Consequently, health and social care professionals find carer support work particularly challenging. Symptom management, personal care, and administering medications are just some of the tasks taken on by this group of non-professionals, and the impact of this role can have negative emotional, physical, financial and social implications on the care-giver. Furthermore, family carers consistently report unmet needs, and there has been a lack of intervention studies aimed at improving carer support. This book provides an evidence-based, practical guide to enable health and social care professionals to assess and respond to family carer needs. It also explores the wider sociological, policy, and research issues related to family carers and palliative care.
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The focus of this four-stage, longitudinal, qualitative, and quantitative study was to explore, from the caregivers perspective, the impact of caring for a person with a diagnosis of terminal cancer, in order to improve the planning and coordination of home-based hospice services in Australia. Caregivers identified five primary-care needs relating to lack of information and ineffective communication with health professionals, inadequate emotional support, the need for assistance with physical care and household tasks, support for caregiver health and social wellbeing, and financial issues. The extent to which current service provision met each of these needs varied. The findings of this study suggest that if palliative care is to be shifted to the home environment, improvement in services concerned with providing support for family caregivers is essential if existing guidelines for palliative care provision are to be met.
Article
The purpose of the study is to describe what it like to live with a highly malignant brain tumor from a family perspective. It is a qualitative study in which 3 families, 3 patients, and 5 next of kin have described their experiences in 15 interviews. The study is prospective, with interviews occurring 2-3 weeks after surgery and 3 and 6 months after the onset of the illness. Inductive content analysis has been employed. The results indicate that when a highly malignant brain tumor is diagnosed, the effect on the family is devastating and there is a state of crisis. Characteristically, there is distancing and a sense of helplessness. The members of the family live from day to day in a state of constant anxiety and fear of losing the patient. The affliction limits the patient’s capacity regarding activities of daily life, which increases the burden of the next of kin. The next of kin attempt to cope with their grief by occupying themselves with practical tasks and activities that they believe are meaningful. The family members have only good words to say about their encounter with healthcare staff and about the information given. Negative information that the family have not asked for can cause a long period of frustration and anxiety, and they believe that their hope has been taken away from them.
Article
Background and aim. Some studies show that the family members willingly take great responsibility in palliative care. However, their motives for doing so have not been much explored and the aim of this study is to investigate that further.Method. Twenty family members of patients enrolled in palliative care were interviewed in depth. The interviews were taped, transcribed and analysed using a qualitative, hermeneutic method.Results. Love, attachment and outlook on life were the main reasons for shouldering responsibility. An increased consciousness about precious values deepened relations within the family and resulted in personal growth and constituted strong motivation. The process of responsibility was bi-directional with benefits as well as costs. The assumed responsibility brought with it the need to balance feelings about the impending death including such feelings as grief, fear and resignation with those associated with life. Examples of the latter were efforts to retain any remaining capacities within the dying person's body and mind, to hold onto daily routines and to maintain hope and dignity. An essential part of the responsibility was to preserve meaning and avoid the sense of meaninglessness.Discussion. The results contribute to an understanding of complex desires, feelings and needs and provide staff with knowledge when supporting families.
Article
BACKGROUND Research regarding informal caregiving showed considerable individual variation in responses to cancer caregiving. The current longitudinal study examined determinants of caregiver outcomes in terms of caregiver experiences at 3 months and caregiver's mental health at 6 months after hospital discharge. It included both negative and positive dimensions of caregiving outcomes.METHODS One hundred forty-eight patients with newly diagnosed colorectal carcinoma and their partners were included. Caregiver experiences were assessed by the Caregiver Reaction Assessment Scale, which contains four negative subscales (disrupted schedule, financial problems, lack of family support, and loss of physical strength) and one positive subscale (self-esteem). The mental health of the caregiver was assessed in terms of depression and quality of life. Possible determinants of the caregiver's experiences and mental health were categorized according to characteristics of the caregiver, the patient, and the care situation. Caregiving experiences were studied as a fourth additional category of possible determinants of the caregiver's mental health.RESULTSEach domain of the caregiving experience was explained by different factors, with total explained variances ranging between 11–46%. Negative caregiver experiences were associated with a low income, living with only the patient, a distressed relationship, a high level of patient dependency, and a high involvement in caregiving tasks. Caregivers with a low level of education and caregivers of patients with a stoma were able to derive more self-esteem from caregiving. Although caregiving may lead to depression, especially in those experiencing loss of physical strength, caregivers may sustain their quality of life by deriving self-esteem from caregiving.CONCLUSIONS It is important that professionals involved in the ongoing care of cancer patients and their families be aware of the increasing demands made on caregivers and the specific problems and uplifts they perceive in caregiving. Professional caregivers are urged to involve informal caregivers with care explicitly and continuously. However, specific attention to those caregivers who live only with the patient, those with a low income, those with a distressed relationship, and those with a high level of patient dependency and care involvement is warranted. Cancer 1999;86:577–88. © 1999 American Cancer Society.
Article
Background: Cancer patients experience many physical and psychosocial problems for which they need support. WebChoice is an Internet-based, interactive health communication application that allows cancer patients to monitor their symptoms and problems, provides individually tailored information and self-management support, e-communication with expert cancer nurses, and an e-forum for group discussion with other patients. Objective: The objective of this study was to examine the effects of WebChoice on symptom distress (primary outcome), depression, self-efficacy, health-related quality of life, and social support (secondary outcomes). Methods: In this 1-year repeated-measures randomized controlled trial, 325 breast and prostate cancer patients were randomized into 1 experimental group with access to WebChoice and 1 control group who received URLs of publicly available cancer Web sites. Results: Group differences on symptom distress were significant only for the global symptom distress index on the Memorial Symptom Assessment Scale (slope estimate, -0.052 [95% confidence interval, -0.101 to -0.004]; t = 4.42; P = .037). There were no significant group differences on secondary outcomes. Additional analyses showed significant within-group improvements in depression in the experimental group only. In the control group, self-efficacy and health-related quality of life deteriorated significantly over time. Conclusion: This randomized controlled trial is one of the first to evaluate effects of an interactive health communication application to support cancer patients in illness management on symptoms. Although only 1 hypothesis was partially supported, the combined results show a clear trend toward better scores in the intervention group on most outcome measures. Implications for practice: If findings can be supported with additional research, WebChoice may become an important tool to support nursing care that can equip cancer patients to better manage their illness.
Article
Patients in the terminal phase of a disease may have complex needs. It is often family and friends who play a central role in providing support, despite health professional input and regardless of whether the patient is at home or elsewhere. Such informal caring may involve considerable physical, psychological, and economic stresses. A range of supportive programmes for caregivers is being developed including psychological support and practical assistance. To assess the effects of supportive interventions that aim to improve the psychological and physical health of informal caregivers of patients in the terminal phase of their illness. We searched the Cochrane Central Register of Controlled Trials (CENTRAL, The Cochrane Library, Issue 2 2010); MEDLINE (1950 to May 2010); EMBASE (1980 to May 2010); PsycINFO (1872 to May 2010); CINAHL (1937 to May 2010); National Health Service Research Register (2000 to November 2008) and Dissertation Abstracts (1716 to May 2010). We searched the reference lists of relevant studies; contacted experts; and handsearched journals. Randomised controlled trials (RCTs) of interventions to support adults who were caring for a friend or relative with a disease in the terminal phase. Interventions could include practical and emotional support and/or the facilitation of coping skills. Interventions could support caregivers indirectly via patient care. Two authors independently screened citations against the selection criteria. Data were extracted by one author and checked by another. This included extraction of any adverse effects. Risk of bias assessment was undertaken by two authors. We contacted trial authors to obtain missing information. Trial data were combined, where appropriate, on the review's primary outcomes. We included eleven RCTs involving 1836 caregiver participants. Nine interventions were delivered directly to the caregiver. Seven of these provided support in the caring role, another involved a family life review, and one grief therapy. None provided practical support. The other two interventions aimed to support caregivers indirectly via patient care. Overall the risk of bias is unclear, as all trials under-reported methods.There is low quality evidence that interventions directly supporting the caregiver significantly reduce psychological distress in the short term (8 trials: standardised mean difference (SMD) -0.15; 95% confidence interval (CI) -0.28 to -0.02). There is also low quality evidence that these interventions in the short term may marginally improve coping skills and quality of life, but neither results were statistically significant (7 trials: SMD -0.05; 95% CI -0.24 to 0.14; 6 trials: SMD 0.08; 95% CI -0.11 to 0.26, respectively). One study assessed physical outcomes, specifically sleep improvement, and found no difference (median effect 0.00). No study measured health service use or adverse outcomes. In one study, however, a subgroup of intervention participants had higher levels of family conflict.Evidence was less clear on the indirect interventions. While both trials in this category found that supporting the patient may reduce psychological distress, none of the four assessments were statistically significant. There were no evaluations of coping with the caring role, quality of life, service use or adverse outcomes. In one trial there was no difference between trial arms in the proportion of caregivers reporting good physical health. There is evidence that supportive interventions may help reduce caregivers' psychological distress. These findings suggest that practitioners should enquire about the concerns of caregivers and should consider that they may benefit from additional support. There is, however, a need for further research to explore the benefits identified, and to assess the interventions' effects on physical health, and potential harms. Trials need to report their methods fully.