Psycho-Oncology

Psycho-Oncology 21: 400–408 (2012)

Published online 23 January 2011 in Wiley Online Library (wileyonlinelibrary.com). DOI: 10.1002/pon.1912

‘The greatest thing in the world is the family’:

the meaning of social support among Black
Caribbean and White British patients living
with advanced cancer
Jonathan Koffman1!, Myfanwy Morgan2, Polly Edmonds1, Peter Speck1 and Irene J. Higginson1
1
King’s College London, Department of Palliative Care, Policy and Rehabilitation, UK
2
King’s College London, Department of Primary Care and Public Health Sciences, UK

* Correspondence to: King’s Abstract

College London, Department
of Palliative Care, Policy and
Rehabilitation, Cicely Saunders
Institute, Bessemer Road,
London SE5 9PJ, UK. E-mail:
jonathan.koffman@kcl.ac.uk
Received: 4 August 2010
Revised: 8 November 2010
Accepted: 15 December 2010
Purpose: Little is known about the perceptions and meanings of social support among black
and minority ethnic groups living with advanced cancer in the UK. The aim of this study was to
explore social support networks and their meaning among Black Caribbean and White British
patients living with advanced cancer.
Method: Semi-structured interviews were conducted with 26 Black Caribbean and 19 White
British cancer patients and analysed using the framework approach.
Results: In all, 25 of 26 Black Caribbean and 18 of 19 White British participants
volunteered views on the presence of social support in their lives. The presence of a spouse or
partners was an indispensable feature within the social support networks in both ethnic groups.
More Black Caribbean than White British participants referred to the presence of social
networks made through their church communities as being a source of practical and emotional
support.
Conclusions: We recommend that when health and social-care professionals perform an
assessment interview with patients from cultural backgrounds different to their own,
opportunities should be made for patients to express information about their social support
networks. This will help them to better understand their place alongside statutory services.
Spouses and partners should be given greater recognition of their contribution in order to
continue with their important role.
Copyright r 2011 John Wiley & Sons, Ltd.
Keywords: cancer; oncology; palliative care; ethnicity; social support

Background Defining ethnicity and culture

Social support is a complex multi-dimensional
phenomenon often confused with terms such as
social networks or social integration [1,2]. A useful
way of describing social support is to view it as the
interactive process whereby help is obtained during
a crisis from a social network, typically families and
friends [3]. Most frequently, social support refers to
the three aspects of social relationships: (i) their
existence, (ii) their structure, and (iii) their func-
tion [4]. This last aspect involves the delivery of
instrumental support to help people with physical
tasks, or emotional support which refers to having
people around to listen to and to be reassured or
comforted in times of need. Research has shown
that social support is linked with improved adjust-
ment to a variety of types of serious and/or chronic
illnesses including cancer [5,6].
Ethnicity and culture have the potential to be
presented as explosive concepts [7]. How these
concepts are defined, and why they are often
conflated with other social metrics is often ignored
within the medical literature. For the purposes of
this article, we understand ethnicity as the shared
origins or social backgrounds and traditions that
are distinctive, maintained between generations,
and lead to a sense of identity and group, and share
a common language and religion [8]. However, this
traditional conceptualization of ethnicity has been
challenged because beliefs about the world are
neither static nor an intrinsic property [9]. For
practical and theoretical reasons, the current
preference is to permit the self-assessment of
ethnicity [8]. Among other factors, culture under-
pins our ethnic identity. This too is a complex

Copyright r 2011 John Wiley & Sons, Ltd.

The greatest thing in the world is the family
social phenomenon where a range of definitions
exist. Culture is a patterned behavioural response
that develops over time as a result of imprinting the
mind through social and religious structures and
intellectual and artistic manifestations [10]. From
this definition, culture can be seen as a ‘recipe’ for
living in the world [11].
Social support and ethnicity
Given increasing social diversity in society, surpris-
ingly few studies have examined the presence and
meanings of social support among different ethnic
groups. The most comprehensive account of this
research area to date is represented in a systematic
review which appraised the place and composition
and contribution of social support among diverse
groups. The studies identified that social support
among minority ethnic groups comprised a more
diverse range of helpers than their white counter-
parts; these sources of supports included extended
family, friends and neighbours, as well as members
of religious organizations. The studies also identi-
fied that the availability of informal social support
was often related to the level of elder dependency.
There were, however, a number of important
limitations in this body of work. First, many of
the studies did not incorporate any conceptualiza-
tion of race, ethnicity, or culture. It is therefore
difficult to understand how the authors understood
these constructs in relation to the populations
studied. Second, many of the studies had methodo-
logical weaknesses which included lack of informa-
tion on sampling methods, and inconsistent use of
measures that limited the understanding of effects
of caregiving [12]. More recent research among
different ethnic groups has highlighted the issues of
subjective loneliness, the presence of social support
and health outcomes [13], and the need to examine
the presence of social support and social capital in
understanding the issues of health inequity [14].
In the UK, 7.9% of the population are recorded
as belonging to black and minority ethnic (BME)
groups [15]. Although ethnic minorities have
traditionally included large numbers of recent
migrants to the UK with a relatively young-age
structure, increasing numbers of people from
ethnic minorities are now in older age groups with
this being particularly marked among the Black
Caribbean population of whom 10.6% are aged
65 years and over [16]. They are now more likely to
experience advanced disease. To date, however, few
studies have examined the presence and meanings
of social support among BME communities during
this stage of their lives [17,18]. A greater under-
standing of the different roles and meanings of
social support have important implications for
effective end-of-life care to people with advanced
disease and their families. This recommendation
was recently endorsed in the UK Department of
Copyright r 2011 John Wiley & Sons, Ltd.
401
Health’s ‘End of Life Care Strategy: Equality
Impact Assessment’ which states that awareness
and education in multicultural health should play a
large role in helping embrace society’s diversity and
changing needs [19].
Methods
This qualitative study focused on both Black
Caribbean and White British people with advanced
cancer, with this comparative aspect overcoming the
danger of implying that the beliefs and experiences
of a minority ethnic group are ‘exotic’ [20] and by
definition different when studied alongside the
majority population. Moreover, there are few
qualitative studies of social support among White
British patients with advanced cancer which would
help to understand the areas of common ground
between different groups.
Setting and participants
The study took place in three south London
boroughs characterized by high levels of social
deprivation and one of the highest concentrations
(11.4%) of Black Caribbean people in the UK. We
attempted to recruit a diverse participant group with
respect to age, cancer site, and location of care within
each ethnic group. Our inclusion criteria were Black
Caribbean and White British people (ethnicity was
self-verified) among patients with advanced cancer.
Participants were recruited via three in-patient and
community-based palliative care teams, and from
oncology out-patient and lung clinics. At each clinical
meeting, new and current patients on the caseload
were reviewed and discussed. Black Caribbean or
White British patients with metastatic disease were
highlighted by health-care professionals and J. K.
discussed with the teams whether they considered that
these patients were aware of their clinical diagnosis
and prognosis, and if they were capable of providing
informed consent [21]. Ethical approval was obtained
from two local research ethics committees.
The interviews
Thirty Black Caribbean and 22 White British
cancer patients were approached to participate in
the study. Of these, four Black Caribbean and three
White British patients declined to be interviewed.
The main reasons for this included, not wanting to
be disturbed or to discuss their cancer. After
obtaining informed consent, semi-structured inter-
views were conducted with 26 Black Caribbean and
19 White British participants. Twenty-nine of these
interviews were carried out in patients’ homes
which gave greater access to patients’ personal
worlds ungoverned by the rules of hospital life.
This included the participants’ time frame, their
Psycho-Oncology 21: 400–408 (2012)
DOI: 10.1002/pon
402 J. Koffman et al.

pace of living, as well as placing the interviews into were similar to their White British counterparts
context. For example, ornaments, pictures, books and included those who had worked as mechanics,
and iconic references to their deity, as well as cleaners, bricklayers, decorators, clerical staff, or
photographs of relations and friends, and photo- housewives. Participants were diagnosed with a
graphs of the patient as they once were all provided range of cancers. The duration of disease was
important sources of reference and valuable clues known for 31 participants. This ranged from
to patients’ identities. The remaining 16 interviews 1 month for a breast cancer patient to 24 years
were conducted among participants treated and for a patient with leukaemia. Table 1 summarizes
cared for in hospital on an in-patient basis. In some the main characteristics of the participants. The
instances, we believed this would present chal- main differences between the two samples were that
lenges. For example, it was sometimes impossible Black Caribbeans were slightly younger and more
to find a more private venue for the interview to of them were being cared for on an in-patient basis
take place, particularly for those patients located in than White British participants.
large hospital wards. Often, the only barrier that
separated them from other patients and staff was The presence of supportive networks
the linen curtain. Given their physical frailty,
moving them to a more private room, if it were The interviews identified the majority of participants,
available, would have been impractical. Despite irrespective of their ethnic group, as being in regular
this concern, participants in hospital settings contact with the members of their close family, many
frequently provided rich accounts of their cancer of whom afforded them with a range of social support
experience. All interviews were audio recorded and during their illness. Some studies of social networks
lasted on average 40 min (range, 20–60 min). have attempted to quantify the actual size of parti-
cipants’ social networks using defined criteria [23].
Although this was not the primary objective of this
Analysis
study, the interviews permitted enumeration of the
Interviews were transcribed verbatim and the frame- number of social support ‘connections’ that are
work analysis method was then used to inductively reported by the participants during their illness. These
organize the data and identify emerging themes [22]. sources comprised participants’ spouses or partners,
This matrix-based approach involved developing a close family, friends and neighbours, friends made
thematic framework through the independent re- through church-based congregations and communities,
peated reading of interview transcripts. All data were and other group affiliations (Table 2). Two main
indexed by J. K. and relevant sections of text were themes emerge from the qualitative analysis: (i) the
summarized within the framework, which facilitated centrality of family and (ii) beyond kith and kin.
exploration of the relationship between themes within
and across cases. To address the issues of rigour and The centrality of family
trustworthiness in the analysis, a selection of interview
transcripts were also analysed by M. M. and I. J. H. Twenty-four Black Caribbean and 15 White British
and then discussed with J. K. Where coding differed, participants described their family as being a
areas were reconsidered until consensus was achieved.
We also paid attention to non-confirmatory cases Table 1. Characteristics of study participants
where emerging themes contradicted more common Black Caribbean White British
ideas. Participants’ ethnic identities are preceded by (n 5 26) (n 5 19)
‘BC’ (for Black Caribbean) and ‘WB’ (for White
Gender
British). In an attempt to preserve anonymity, names
Male 17 10
have been changed throughout. We have made some Female 9 9
use of numerical and verbal counting as this can help
to clarify patterns emerging from the data while Median age 68 years 77 years
(range) (35–82 years) (34–88 years)
recognizing that the main emphasis is to identify
meanings and conceptual categories. Cancer site
Breast 2 4
GI 6 4
Results GU 11 4
Haematological 2 3
Characteristics of participants Lung 4 3
Site unknown 1 1
Of the 26 Black Caribbean participants who agreed
Duration of disease 3 months–10 years 1 month–24 years
to be interviewed, nearly all were first generation (n 5 29)
migrants to the UK who arrived in 1950s and
1960s, with just four being second-generation Location of interview
Hospital 11 5
‘younger’ participants under the age of 45 years.
Home 15 14
The jobs they held prior to retirement or illness

Copyright r 2011 John Wiley & Sons, Ltd. Psycho-Oncology 21: 400–408 (2012)
DOI: 10.1002/pon
The greatest thing in the world is the family
Table 2. Reported sources and size of social support
networks
Black
Caribbean
(n 5 26) (n 5 19)
Sources of social support
No support reported 1 1
Husband/wife/partner 7 5
Other family members 24
Close friends and neighbours 12
Church-based communities 11
Other group affiliations 1 2
Number of sources of social support
No support reported 1 1
1 source 6 12
2–3 sources 19
4–5 sources — 1
central component within their supportive network
and often highlighted that their spouse or partner
and children were the most important persons in
their lives. Participants reported that care from
spouses assumed increasing importance in their
lives as their frailty increased. Many referred to
instances where they benefited from the intimate
and privileged knowledge their partners possessed,
for example how to make them comfortable, how
to interpret signs of distress, and how to anticipate
and react according to their every need. This
support was viewed as a ‘natural’ part of their
long-standing affective relationships. Edna, a Black
Caribbean woman with a haematological cancer,
focused on the unconditional assistance she re-
ceived from her husband with her activities of
daily living, for example washing and dressing.
She reiterated that he was prepared to do anything
for her. This included performing intimate tasks
of a supportive character that, for their generation,
may have been viewed as going beyond the
normal reciprocities between gender relationships.
Edna said:
Nothing’s really changed my life, because my
husband is there for me. Whatever I want, he cooks,
and he does the shopping. He put me in the bath.
Yeah, if I go and have a bath he’ll bath me. Help me
put my clothes on. He just don’t want me to do
anything, he say, ‘You’re not well, I’m here to look
after you.’ (BC25, 80 years)
Male participants from both ethnic groups
reported receiving endless support and care from
their wives. In all examples, the interviews observed
that the instrumental support afforded to husbands
was embedded in love and a wish to honour long-
held vows. Although some male participants high-
lighted general examples of the provision of
instrumental support that enabled them to main-
tain a reasonable quality of life as their cancer
progressed, Audley, a Black Caribbean man with
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403
lung cancer, was more specific, qualifying his praise
in relation to his wife’s unconditional support
White during his frequent episodes of cancer-related pain:
British
When the pain takes mey The greatest thing (in my
life), is the wife. She is a great wife. She hold me in
her arms like a baby. And she rub me back and
everything. Maybe if I didn’t have a wife like this I
15
would give up long ago. (BC11, 70 years)
5
4
Martin, an older White British man with
prostate cancer, reported that his family kinship
network was extensive. Moreover, on the day his
interview was conducted several of his daughters
and all their children were visiting him and his
5 wife. He found it impossible to quantify the
extent of their individual contribution, but their
presence and the ensuing chaos were very impor-
tant to him.
JK to Martin: What’s helped you cope with all of this?
Martin: My family. The greatest thing in the world is
the family, I think. Better than all the money. They
come round all the time like, you know. And they don’t
want to leave. And the grandchildren, like, they’re
y..it’s chaos with them here, but I put up with it! It’s
great fun watching them. (WB35, 78 years)
The presence rather than the participants’
quantification of support was echoed by two Black
Caribbean participants. This was typified by
Franklyn, a Black Caribbean man with prostate
cancer who explained that the immediacy and
feelings of closeness to his family were enough for
him, which both affirmed and validated his
situation when in need. He said:
JK to Franklyn: What about your family? How do
they help you?
Franklyn: I think by their very presence.
JK to Franklyn: Just them being present?
Franklyn: By their very presencey..I feel good. And
we can sit down and we can talk and we can
communicate together. (BC07, 72 years)
In some cases, the closeness of relationships
between participants and their relatives or friends
who were not geographically proximal increased as
a result of illness. A number of Black Caribbean
participants reported that they were now in touch
with relatives who had either remained in the
Caribbean or immigrated to the USA. John
illustrates this situation; despite the fact that his
sister is now living in Jamaica, he reported that her
planned trip to visit him during his illness high-
lighted the strength of their relationship even at a
great distance:
John: My sister going to come from Jamaica to visit
me.
JK to John: And what does that mean to you?
Psycho-Oncology 21: 400–408 (2012)
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404
John: Yeah well it mean a lot. yI haven’t seen her a
long time, you know because it’s family. When I was
strong I could visit her. I wanted to see her until all
these things happened. (BC08, 59 years)
Beyond kith and kin
We observed in both ethnic groups that social
support networks also extended to neighbours,
friends, and the wider community, for example
church and religious organizations. Although these
relationships departed from the conventional
boundaries of ‘family’ defined by marriage and
blood, the roles and responsibilities of these groups
were still highly valued in times of crisis. Friends as
a component of participants’ social networks
traversed two domains; the first centred on the
importance of geographical proximity and the
second on the deeply rooted relationships developed
over many years. In the first category, a small
number of participants highlighted that their
supportive friendships had grown out of good
neighbourliness. Leonard, a White British man with
prostate cancer, referred to a young woman named
Liz who lived in the apartment below him and his
wife. Coincidentally, Liz was also a clinical nurse
specialist in palliative care. Leonard considered Liz
to be indispensable; there was little she was not
prepared to do for both of them. He remarked:
We’ve got Liz living in the bottom flat. And she is
a great help. She’s an absolute angel, she is. (WB27,
75 years)
An important finding relevant to the social
support provided by friends was the notion of a
more contemporary interpretation of community,
where geographical proximity was not necessarily
required to produce favourable outcomes. Instead,
relationships relied greatly on the strength of
relationship, trust, and previous mutual support
built up over many years in good and bad times.
This sentiment was typified by Reginald, an older
White British man with a haematological cancer.
According to his account, ‘hard times’ were
strongly associated with ‘good friends’. Reginald
reported that he had been inundated with tele-
phone calls from friends, inquiring about his
situation and offering support:
I’ve got so many friends who are always on the phone
to me. It’s from all over the country that I’ve got
support. (WB29, 77 years)
The incorporation of church-based communities
as an extension to supportive networks was a more
common theme among Black Caribbean than
White British participants which potentially offered
them more opportunities for practical and emo-
tional help and assistance. This category of support
extended across religious leaders and members of
Copyright r 2011 John Wiley & Sons, Ltd.
J. Koffman et al.
their communities. Ministers were valued by parti-
cipants not only because they discussed religious or
spiritual issues relevant to their members, but also
because they provided company. For example,
Joseph, a Black Caribbean, referred to how his
church leader helped to reduce his sense of loneli-
ness since he had become housebound. This was in
addition to fulfilling the important religious duty of
providing communion. He said:
Well it’s easier to cope, because you have someone
around you, and they are a servant of God, come and
say a word of prayer with you and give you
communion. (BC10, 68 years)
A very small number of White British parti-
cipants also reported that they benefited from the
support provided by their religious leaders. For
example, Ron described how Richard, his church
minister, had been central in providing help which
involved escorting him to hospital appointments as
well as assisting him at home with his washing up
and other household chores:
Sometimes he comes round and sees I’m all right like.
He used to come up to the hospital with me. y when,
when I first started going up there he said, ‘I’ll come
up there with you, Ron’. He asks me er every time I
go in, ‘How did you get on, Ron? How are you, Ron?
How do you feel?’ y If he sees me doing a bit of
washing up, ‘Oh, I don’t want you to do too much,
you know, you sit down, you relax,’ y he says,
‘Don’t do too much, you know, Ron, just take it
easy.’ (WB40, 70 years)
For Black Caribbean participants, church-based
communities often comprised a rich tapestry of
friends who often represented a convoy of support
that accompanied them throughout their cancer
experience. Support involved the delivery of
practical and emotional assistance that took the
form of talk about God, prayer, and companion-
ship. Milton, a Black Caribbean man, explained
that his friends from his Jehovah’s Witness
community made frequent visits to his hospital
bedsides where conversation often focused on the
place of God within all their lives. But he added
that their physical company was equally valued,
without which his life was empty:
It encourage you, because you talk about God and all
that. And then you got the company as well, you see.
I have the company as well, and when I don’t have
any company I feel terrible. I love to have company.
(BC12, 69 years)
However, Petula, the Black Caribbean woman
with stomach cancer, suggested that people
who visited her from her church congregation
were friends first and foremost. Her discussions
focused on the issues other than God that were
Psycho-Oncology 21: 400–408 (2012)
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The greatest thing in the world is the family
intentionally designed to distract her from her
illness.
Petula: My friends are very supportive, there’s you
know, are people I can talk to and I get on the phone
to, have a natter with. And they don’t pretend to
know what it’s like ‘cos obviously you know, they
can’t unless they’ve been through it. They don’t sort
of pretend to know what it’s like, they’re just there
for me.
JK to Petula: What do you want to talk to your
friends about?
Petula: Generally anything, just a bit of gossip ory
JK to Petula: Gossip?
Petula: Yeah (laughs) What’s going on. Normal
things. Mm, yeah, I try not to concentrate on the
illness too much. (BC17, 57 years)
Although friends made through church commu-
nities did not conform to the typical notion of a
conventional family, a number of Black Caribbean
participants, nevertheless, referred to them as
second families. Others have referred to the
relationships of this nature as being ‘pseudo-kin’
or ‘fictive kin’. These individuals, although not
biologically related, were often considered to
replicate many of the privileges and responsibilities
usually assigned to family relatives [24,25]. This
finding was particularly true for those participants
who, through circumstance or geography, did not
always have access to their own immediate family
during the crisis of their illness. Sherwin illustrates
this situation, reporting that his congregation was
central in providing him with simple yet invaluable
practical help. He said:
They always (my friends) want me to come down to
have dinner with them. Or they will phone up and
find out if I’m feeling hungry. And I say, ‘Yes’, and
they will bring some food to eat and all that. (BC02,
67 years)
Finally, a small number of participants reported
that their social support networks included affilia-
tions other than church-based congregations or
communities who provided much valued support.
Two participants, one Black Caribbean, another
White British, highlighted the social contacts they
had made through the day centres at their local
hospices. June, a Black Caribbean woman with a
GI cancer, stated that she looked forward to going
to the hospice. For her, it represented more than a
centre of excellence to manage cancer-related
symptoms; it was also a rich source of new friends,
many of whom were experiencing similar issues
to her:
yand I always go to the hospice—xxxxx hospice
on the High Road. I think it’s very good. yyou
meet people to talk to—they talk to you.....and you
feel good. (BC01, 68 years)
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405
Discussion
Methodological reflections
This is the first qualitative study to explore the
presence and meanings of social support among
Black Caribbean and White British participants
with advanced cancer living in the UK. However,
the findings from this study should be viewed
within the context of the following methodological
considerations which are reported in detail elsewhere
[21,26]. In brief, they include the ‘racialized
differences’ between the research participant and
the interviewer which can potentially affect the
veracity of what research participants are prepared
to report. However, true ethnic matching is difficult
since it addresses only one possible marker of
identity and is further complicated by suggestions
that we are all subject to ‘social hybridity’ [27], a
composite of many influences. Second, the cross-
sectional design of the study did not permit
exploration of the changes in social support
structures, or meanings over time, or to what
extent this influenced how participants lived with
their advanced cancer. It has been suggested that
prospective longitudinal recruitment is possible if a
good initial relationship between interviewer and
participant is developed [28] although the previous
research has shown that this is often difficult
because progressive disease leads to significant
participant attrition [29].
The contribution and social patterning
of social support
Previous cancer research has been limited in its
ability to provide a detailed understanding of the
contribution of social support among BME com-
munities living with advanced disease [18]. This
qualitative study, however, has now taken this
important area of research one step further. It
explores the composition of social support net-
works and the contribution of its constituent
members across two ethnic groups living with
advanced cancer. Data from the qualitative inter-
views observed important similarities and differ-
ences, some of which may be socially patterned.
First, this study identified that the presence of a
social support network in all its forms was able to
mediate some of the stresses associated with cancer
and its progression. Second, this study observed
that one of the most notable influences of ethnicity
and culture was on the size and composition of
social support networks, frequently offering Black
Caribbean more opportunities for assistance than
White British participants. Related to this finding,
our study challenges Carstensen’s socio-emotional
selectivity theory that proposes that older adults
for practical reasons may engage in ‘pruning’ their
social networks while still attempting to maintain
Psycho-Oncology 21: 400–408 (2012)
DOI: 10.1002/pon
406
maximum support as they enter new stages of their
illness or experience increasing frailty [30]. Although
we did not specifically ask participants to what
extent the size of their networks had changed as a
result of their illness, we, nevertheless, observed
multiple sources of support were evident, even into
the very late stages of their cancer. This was more
apparent for those who identified themselves as
being Black Caribbean.
Third, many participants from both ethnic
groups spoke about the support derived from their
spouse or partner. This component of support was
often associated with ‘expert’ carers where partici-
pants benefited from the intimate and privileged
knowledge their partners possessed to help them.
This involved making them comfortable, how to
interpret signs of distress, and also being able to
anticipate their every need. This has been viewed in
the literature as a ‘natural’ part of an affective
relationship [31–33], built up over very long
periods of time and frequently underpinned by a
foundation of reciprocity, marital obligation and
love. Indeed, without their support it would be
reasonable to assume that many participants would
have been unable to manage physically or emo-
tionally on a day-to-day basis, particularly as their
cancer progressed to more advanced stages.
Finally, this study provides a deeper under-
standing of creative interpretations of ‘family’,
particularly those made through church-based
communities in the delivery of social support
during times of crisis. In this study, it was this
common cultural bond that was central in shaping
the importance of this component of support in the
lives of Black Caribbean people living with
advanced cancer. Although the previous UK-based
research among people living with advanced
disease identified this aspect of support [31], this
qualitative study explores the aspect of social
support in more detail, illustrating the ways in
which church membership appeared to comprise
both spiritual and secular components. The latter
enabled the purchase of a social network that
represented both practical and psychosocial
resources that could be called upon [32].
The findings from this study are therefore
important because they challenge the commonly
held understanding of the composition of social
kinship networks or affinities bound by more
formal ties. The conceptualization of ‘family’
expands in meaning to include fictive kinship
rather than being entirely displaced. This finding
appears, in part, to be a function of migrant
communities who, in the immediate and medium
term, are required to seek out new opportunities to
support each other. Although it may be a result of
cultural ties, it may also be due to environment and
lack of proximity to available family. Recent
research that has examined the presence of social
support among British expatriates now living in
Copyright r 2011 John Wiley & Sons, Ltd.
J. Koffman et al.
Spain [33] and in Malta [34] has also identified
similar themes. Other influences have also been
implicated; in the USA, the extension of kinship
networks has been observed among African
Americans as a structural response to poverty,
high levels of unemployment, and segregation [25].
According to Smart [35], this incorporation of
support from the wider community ‘does not
prioritize relationships with biological kin or marital
bonds’. Instead, it provides a ‘more open conceptual
space’ to consider the significance of a whole range
of relationships that may be useful in times of need.
These include what have been referred to a
‘creative affinity’ which would be inclusive of the
kind of networks described above [36]. Collectively,
the observations in this study suggest that the pool
of support providers available principally to first-
generation Black Caribbeans is fairly large and
diverse. The full strength and importance of
relationships which falls under the ‘umbrella’ term
of friendships may not be fully recognized in
clinical encounters.
Conclusions
The findings from this study identify three distinct
but overlapping agendas central to the patient and
family-centred experience during advanced cancer.
First, from the patients’ perspective, the data suggest
that culture is more indelible in its ability to influence
health experiences than some previous research
indicates [37]. Although equivalent socioeconomic
status may make the resources necessary to access
health services similar, we observed that culture has
potential to shape other essential resources that
enable people to cope with their illness. Black
Caribbean social networks differed from those of
White British participants in the area of fictive family
ties, many of which were made through church-based
congregations. These extended kinship networks were
typically characterized by a sense of reciprocal
obligation with members providing practical and
emotional support for the duration of their cancer.
We therefore recommend that when health and
social-care professionals perform an assessment on
patients who do not share the same cultural back-
ground as their own adequate time is allowed to elicit
important information that goes beyond clinical
considerations. From this narrative a more complete
picture of the patient can be developed to recognize
and understand different types or styles of support
networks that may aid them during their illness.
Second, supporting people with advanced cancer
not only assumes responsibility for the patient but
also for those who provide informal care, typically
spouses, partners, close relatives, and in some
instances friends. Evidence suggests that family
members often occupy a unique position; not only
do they provide practical and emotional care, but
Psycho-Oncology 21: 400–408 (2012)
DOI: 10.1002/pon
The greatest thing in the world is the family
they also potentially need support in order to
continue in their role. Indeed, it has been argued
that it is sometimes unclear who is ‘the patient’
[38], particularly as carers often do not consider
that they fit the definition of those roles [39], in
addition to being unaware of their rights to the
assessment or relevant services. How best to meet
their support needs can be challenging. We there-
fore recommend that impeccable assessment of
patient-centred concerns should be extended to
caregivers in order to systematically identify their
needs and resolve problems. Their capacity to
continue to care may then be enhanced.
Finally, as social diversity becomes increasingly
common in the clinical encounter, we recommend
that more research should be conducted into the
presence and contribution of social support net-
works. This will contribute to a better understanding
of the complex interface between the culture and the
support cancer patients and their families require at
a time when they are potentially vulnerable as a
result of their changing circumstances.
Ethical approval
The Research Ethics Committee, King’s College
Hospital NHS Trust (LREC Protocol Number
01-204) and Guy’s and St. Thomas’ Research Ethics
Committee (EC 00/018) approved this study.
Acknowledgements
The study was funded by Guy’s and St. Thomas’ Charity.
The invaluable contribution of patients and staff at King’s
College NHS Trust, Guy’s and St. Thomas’ NHS Trust is
gratefully acknowledged. We are indebted to all the patients
who offered their time to this study.
Contributors
I. J. H. with M. M., J. K., and P. E. won funding for
this study. J. K. collected the data supervised by I. J. H. and
M. M. J. K. with I. J. H., M. M., P. E., and P. S. analysed
and interpreted the data. J. K. drafted the manuscript. All
authors contributed to important intellectual revisions and
approved the version to be published. J. K. is the guarantor.
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