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Bringing our Dying Home: How caring for someone at end of life builds social
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DOI: 10.5172/hesr.2012.21.4.373

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 Copyright © eContent Management Pty Ltd. Health Sociology Review (2012) 21(4): 373–382.

Bringing our dying home: How caring for someone at end of life builds
social capital and develops compassionate communities

DEBBIE HORSFALL, KERRIE NOONAN AND ROSEMARY LEONARD

School of Social Sciences and Psychology, University of Western Sydney, Kingswood, NSW, Australia

Abstract: In this article we discuss the ‘bringing our dying home’ research project which contributes to an understand-
ing of caring at end of life (EOL) as potentially increasing social networks and community capacity. The main aims of the
research were to illuminate the quality and effect of informal caring networks that are established, or strengthened, as a
result of caring for a person dying at home and to understand how being involved in such a caring network impacts family,
friends and the wider community. Using photo voice and network mapping in focus groups and interviews we collected
94 visual and oral narratives of caring and support. We found: people who engaged in acts of resistance to the Western
expert-based approach to EOL care; that carers successfully mobilised and negotiated complex webs of relationships; and,
that embodied learning about caring contributed to the development of social capital and compassionate communities.

Keywords: caring networks, social capital, community capacity building, qualitative research

T his article presents the findings of a qualita-

tive study conducted in NSW Australia in
2009–2010, which focused on the informal car-
ing networks of people who die at home. We
collected narratives regarding the nature, quality
and effect of social networks that are established,
or strengthened, as a result of a person dying at
home. Ninety-four people participated provid-
ing us with rich visual and oral data regarding the
function and effects of informal caring networks.
Here we provide a conceptual background to
this research before briefly discussing the themes
which arose. We then focus on the themes which
directly explicate community capacity build-
ing. This research contributes significantly to the
growing body of research and practice which
refocuses end-of-life (EOL) care from an indi-
vidualised, private and medicalised approach to
a communal and social approach (Rosenberg &
Yates, 2010; Street, 2007). Emerging from this
research is an in-depth understanding of the role
and nature of informal care networks in EOL care
at home and how such networks build social cap-
ital and the community’s capacity for compassion.
BACKGROUND
Despite the overwhelmingly limited view of car-
ing in the literature (see Foreman, Hunt, Luke,
& Roder, 2006; Palliative Care Australia [PCA],
2004; Zapart, Kenny, Hall, Servis, & Wiley,
2007), and the dominant experience of the
terminally ill dying in institutional care, the vast
majority of people continue to express a desire
to live and die at home when they have a termi-
nal illness (PCA, 2010). There is though a large
discrepancy between this preference and actual
practice with the majority of the 140,000 people
dying each year in Australia continuing to die in
institutions (PCA, 2010). The concept of a good
death appears to have been superseded by the
concept of a managed death, one that requires
professional support and knowledge (Howarth,
2007) and takes place in a hospital or, more
rarely, a hospice, resulting in the modern death
becoming ‘cellular, private, curtained, individu-
alised and obscured’ (Buchan, Gibson, & Ellison,
2011, p. 4). This increase in the medicalisation
of death and dying has profoundly changed peo-
ple’s experiences of death in society, influenced
societal attitudes and the provision of EOL care.
Dying is now firmly located within the domain
of medical science and its perceived experts. As a
consequence, community knowledge about EOL
care has declined, thus further increasing reliance
on healthcare and medical systems for EOL care
(Gnomes & Higginson, 2006; Kellehear, 2005).
In the past 10 years research has described
the individual experiences and needs of carers
and caring at home at EOL (Donnelly, Michael,
& Donnelly, 2006; O’Brien & Jack, 2010;
Thomas, Hudson, Oldham, Kelly, & Trauer,
2010; Weibull, Olsen, & Neergaard, 2008).

Volume 21, Issue 4, December 2012 HSR 373

HSR Debbie Horsfall, Kerrie Noonan and Rosemary Leonard
Donnelly et al. (2006) and Thomas et al. (2010)
in particular have emphasised the importance of
a broader refocus from the individual to com-
munity capacity building and community devel-
opment for EOL. We agree with this emphasis
and would argue that there is significant value
in further understanding the input and caring
of the sometimes extensive network of people
supporting the primary caregiver. However, it is
important to carefully analyse the way that net-
works are formed and the types of support they
can provide in order to avoid a simplistic notion
of community as a universal panacea.
Although the financial and human costs of car-
ing are well documented (e.g., ABS, 2008; Access
Economics, 2005), it is also recognised that car-
ing provides personal rewards as well as burdens
(Zapart et al., 2007) and that support networks for
carers can have a crucial role in effecting positive
outcomes (Horsfall, Noonan, & Leonard, 2011).
What is less evident is that caring networks may
also have a positive effect for communities. For
example, it has been argued that community
capacity building at EOL can contribute to mod-
els of care that provide greater community self-
sufficiency and sustainability within the context
of our rapidly ageing society (Rumbold, 2010).
As such, we sought to develop understanding
about the functioning of caring networks, for the
principal carers, members of the caring networks
and also for the wider community.
Social capital and community
development
The research project discussed here offers a new
perspective in exploring social capital, community
development and the relationship between the
two concepts within the EOL context. Although
social capital is a contested concept, there is evi-
dence that social capital is capable of producing
a variety of positive outcomes beyond economic
advantage, such as improved health and well
being (Halpern, 2005; Horsfall, Leonard, Evans,
& Armitage, 2010). The term social capital has
been used widely and rather loosely, but we use
Putnam’s (1993) definition: Those features of
social organisation, such as trust norms and net-
works, can improve the efficiency of society by
374 HSR Volume 21, Issue 4, December 2012
facilitating coordinated actions. Further we adopt
the micro position (see Lin, Cook, & Burt, 2001)
which focuses on specific networks and the bene-
fits that accrue to the people within them. Because
our research aimed to identify the changes in the
size, strength and nature of networks, of people
involved in caring for a terminally ill person, we
adopt the micro position. We examined whether
caring networks expand or increase in density and
whether they are perceived to give benefits to the
members. However, attitudes were not excluded.
Human relationships are not purely instrumental
and concepts such as trust, norms and shared val-
ues may underpin social capital networks.
Social capital, however, is not sufficient to
guarantee community development and capacity
building (Mayer & Rankin, 2002). If a commu-
nity is to develop its capacity for compassionate
actions and to support the caring of those at EOL
it will need knowledge and experience, a sense
of empowerment and supportive social structures
(Kenny, 1994), and as noted above, these have
been lost due to the medicalisation of dying and
death. Kellehear (2005) notes that genuine com-
munity development and community capacity
building enhance the ability for knowledge to
be developed and stay present within the com-
munity, because people have had the chance to
become aware of their own abilities, knowledge
and skills. He argues this process allows commu-
nities to utilise available support systems, prob-
lem solve, make decisions, and communicate and
act more effectively. Community development
approaches depend on community participation,
which refers to the individuals, networks of peo-
ple, communities of friends and neighbours who
together participate in the EOL care of a fel-
low citizen with a terminal illness. Community
development models compared to the medi-
cal and health services models have a distinctly
different approach to EOL care. They ‘are not
new services. They are community members act-
ing toward each other in new and constructive
ways to improve their own capacity for end-of-
life care’ (Kellehear, 2005, p. 100).
A significant contribution of this research is to
explicate that process. This is timely in Australia
as policy direction for healthcare providers and
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 Caring at end of life builds social capital & community capacity
palliative care services move towards implement-
ing the National Strategic Plan which asks for a
public health approach to palliative care (PCA,
2010). Although this approach is well described
(Kellehear, 2005; Rosenberg, 2011; Rumbold,
2010) there is a growing demand for empirical
research that will guide the translating of these
principles into practice and, in particular, how
community capacity can be built through par-
ticipating in informal care networks.
METHODOLOGY AND METHODS
The research was conducted over a 2-year period
(2009–2010) and was funded by the University of
Western Sydney (UWS), with HOME Hospice
and Cancer Council NSW as the industry part-
ners. Ethics approval was granted by the UWS
Human Ethics Committee. HOME Hospice1
provided in-kind support to the research of
4 hours a week through its programme man-
ager, who is also a clinical psychologist and an
experienced grief counsellor. The programme
manager was a co-researcher, providing organ-
isational support to the project and a link to
mentors and other HOME Hospice staff.
Research design
We used a creative qualitative approach employ-
ing the techniques of photo voice (Ollerton,
2011; Ollerton & Kelshaw, 2011) and network
mapping combined with group and individual
interviewing. The underlying epistemology was
social-constructivist and critical because it not
only gave authority to the voices of the partici-
pants and sought to understand the way they
constructed their caring, but also had a criti-
cal agenda of raising awareness of the need for
1
HOME Hospice was founded 30 years ago and uses
a community-development approach to deliver a
community mentoring program for carers who want
to care for a terminally ill person at home (HOME
Hospice, 2008). The organisation is not-for-profit and
is supported by Social Ventures Australia and Cancer
Council NSW. It is based in Sydney. In its three decades
as a voluntary organisation, HOME Hospice supported
approximately 200 carers; in 2008, when it transitioned
to become an organisation with paid staff, it was able to
support 70 carers across New South Wales each year.
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HSR
social change. However, it went beyond rais-
ing awareness of an issue by aiming to depict an
alternative to the dominant story of caring; in
Hooks’ (2003, p. xvi) words, it was about ‘illu-
minating the space of the possible’.
Caring for someone at the end of their life,
either as a primary carer or a member of the car-
ing network is an emotionally charged and com-
plex experience. As such we used methods that
enabled the research participants to choose their
level of participation. We also needed to be partic-
ularly sensitive when asking people to talk about
emotional issues which could leave them feeling
vulnerable and exposed. Methods needed to be
employed which could enable the participants
to remain in control, as much as possible, and
to hopefully flourish as a result of the research-
ing process (Horsfall & Titchen, 2009). Creative,
qualitative research methods are increasingly being
employed in such situations (Welsby & Horsfall,
2011) to provide conversational spaces for people
to speak if and how they want about deeply felt
issues enabling researchers to understand what
matters and is important to participants, and why.
PARTICIPANTS
Four types of participants took part in this study.
Firstly primary carers and their support networks
who had a relationship with HOME Hospice via
a community mentor; HOME Hospice mentors;
and primary carers and their networks who had
no relationship with HOME Hospice. Primary
carers could be currently caring for someone
at EOL at home, or have previously cared for
them. In total 94 people participated with ages
ranging from 7–90 representing 17 caring net-
works. The number of people attending the
focus groups ranged from 2–17. Recruitment
took place through three recruitment strategies:
Via HOME Hospice and the mentors; through
two research workshops conducted with carers
and mentors, and through local newspapers.
PROCEDURES
Participants were given cameras 2 weeks prior
to focus groups/interviews and asked to record
the significant care and support activities they
engaged in. The visual data (photos) were
HSR 375
HSR Debbie Horsfall, Kerrie Noonan and Rosemary Leonard
discussed and analysed by participants in a series
of in-depth interviews/focus groups. The focus
groups/interviews also included a network map-
ping activity where participants drew maps of
relationships pre and post care, indicating via
coloured pens the strength and intensity of
relationships. We found both of these methods
extremely useful in enabling a wide variety of
people to speak about emotional issues. The first
level of analysis took place in the focus groups/
interviews where participants were asked to give
meaning to their photographs and the network
maps. This was in order to gain the stories of par-
ticipants and to understand what was important
to them, in terms of caring, the generation of
social capital and the development of communi-
ties at this time. The second level of analysis was
conducted by the research team. This involved a
dual approach: enabling themes to emerge from
the data and purposively looking for answers
to our research questions. We interrogated the
data with the following questions: What are the
key ideas, concepts and themes? What did peo-
ple think was important? What was the overall
story? This was an emergent data driven process.
At the same time we conducted a theory driven
analysis; how did the data answer our research
questions? What were the omissions, things not
said, that we expected due to our knowledge of
the current theory and literature; and what was
said that we did not expect?
FINDINGS AND DISCUSSION
Four themes emerged from the verbal and visual
data: ‘it takes a community’; ‘resisting isolation and
staying connected’; ‘the ordinary becomes the extraor-
dinary’; and ‘developing death literacy’. The themes
demonstrate a rich and complex description of
both the everyday tasks of caring and how care-
givers manage the informal and formal networks
in order to continue to care at home. Each
theme is discussed below.
Theme 1: It takes a community
Without exception participants believed that it
takes a community of people working together
to enable someone to experience dying and
death at home:
376 HSR Volume 21, Issue 4, December 2012
There were things that all of you did and all of you
gave … just crucial in that process of [him] dying the
way he wanted to die. (FG 8)
These communities, or caring networks,
comprised an extraordinary web of complex
relationships which are continuously negoti-
ated during the process of caring. Participants
had a sophisticated understanding of the web
of relationships which comprise a caring net-
work and they were able to mobilise, negoti-
ate and maintain many of these relationships at
an emotionally and physically charged time in
their lives.
The terms ‘community’ or ‘networks of car-
ers/support networks’ can run the risk of being so
broad as to become bland and meaningless. These
terms, while problematised in the academic lit-
erature (Gibson, 2011), had meaning for partici-
pants who were clear and articulate about what a
network/community was and who was included:
So community can come from friends’ family neigh-
bours but it can also come from people you don’t know
very well … and it’s different for every family and I’m
yet to experience anyone who doesn’t have anybody.
(M3)
They were also very clear about its impor-
tance in the context of caring:
it’s central to everything that we’ve been doing. (FG 7)
From the perspective of our participants ‘care
networks’ unsurprisingly comprised: family;
friends; work colleagues; neighbours; community
and service groups; and professionals. What did
surprise us were the inclusion of pets and the
importance of global and virtual networks.
Participants clearly differentiated between
what we now call core and outer networks.
Both the carers and the people comprising the
care network made this distinction. The ability
to see and be seen as belonging to a different
part of the network and what this entails, dem-
onstrated the complexity of the networks, how
they comprise themselves, how they act and
how they are used by the carer/s. The core and
the outer networks could not function without
each other demonstrating a sophisticated set of
relationships.
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 Caring at end of life builds social capital & community capacity
Theme 2: Resisting isolation and staying
connected: Enablers of caring networks
People resisted the potential isolation and social
exclusion often associated with caring by work-
ing hard to stay connected with each other. The
people doing this work included the carer, mem-
bers of the caring network and the dying person
themselves. Central to staying connected was
clear and controllable communication, often using
technology to good effect. Additionally we found
that humour and remaining light-hearted enabled
people to stay engaged in the process of caring:
There was lots of laughter and lots of story-telling. It
was very noisy; it was like being in the middle of a
hen-house. (FG 7)
While often it was family members, the pri-
mary carer and/or people in the caring network
who worked at enabling and maintaining connec-
tions it would be a mistake to assume that the per-
son being cared for was a passive beneficiary. We
were surprised at the extent to which the dying
person took control and did the work of keeping
social connections alive, directly or indirectly:
I ask her to give some respite when Mum and Dad are
out and she’s only down the road … I try and think
how they can help me without me wearing them out
… I try and organise a win/win situation. (FG 3)
Theme 3: The ordinary becomes the
extraordinary
At the outset of this research we believed it
important to operationalise caring. There is lit-
erature which tells us what primary carers do
(Zapart et al., 2007) but we were particularly
interested in what the caring networks did. If
people are to help, then it is useful to know
what people find helpful. Initially it was diffi-
cult to get the caring network to talk about what
they did to help, with comments such as:
I did nothing or Julie (carer) was extraordinary. (FG 1)
Often it took the carer to begin to discuss the
tasks they had found helpful and/or the tasks of the
caring network became apparent in the discussion
of the photographs. Eventually we elicited nar-
ratives of caring in which the tasks people did to
support the dying person, the primary carer and
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HSR
families emerged. Overall the narratives showed
that the tasks of caring were as diverse as the num-
ber of people in the research. There were also
some commonalities. Food, for example, cropped
up in every discussion. Penguins in only one! It
was clear though that providing what was actually
needed, not what people assumed was needed, was
the key to successful support:
She didn’t need massage or meditation lessons she
needed firewood. (M3)
We also found that the main motivation for
the tasks people engaged in was to keep life as
normal as possible for the primary carer and
immediate family:
Practical stuff mainly, such as sitting with someone
talking to them, cooking, cleaning, mowing the lawns
doing the running around taking the children, making
phone calls … sitting with them so the carer can get
out and have a coffee. (M2)
Theme 4: Developing ‘death literacy’
All participants spoke of the transformative effect
of being involved in a caring network at the end
of someone’s life. Transformations occurred in
people’s skills and knowledge about death and
dying; about the tasks of caring for people and
about being a good friend. Attitudes to death,
in particular dying at home were changed. In
speaking of transformations, people told stories
about what it felt like to be involved in caring
for someone at EOL. These descriptions trans-
form the literature on caring, which is for the
most part full of stories of loss, burden and stress.
The transformative effect on individuals from
caring networks highlights what people learnt
and what effect this learning had. The transfor-
mative effects on the caring networks demon-
strate the collective changes in the network.
We have named the combined nature of
these transformations, ‘death literacy’. This is an
extension of the health literacy framework that
acknowledges that poor knowledge of health
has a negative impact on well being. We found
that being involved in caring for a person who is
dying extends the knowledge, skills and personal
resources of people who participate in caring
networks. These experiences have improved the
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HSR Debbie Horsfall, Kerrie Noonan and Rosemary Leonard
death literacy of the community because people
tend to share this knowledge with each other.
As this is precisely what develops a community’s
capacity for care and compassion. We discuss
each of these in some detail below.
Transforming the literature through
alternative stories of care
There is this joy that is within this household despite grey
hollows. (FG 3)
Talking about feelings could be idealised and
perhaps even sentimentalised. We did not find
this. The quote above shows what we found:
people talked about their feelings in a way
which captured complexity; there was joy and
grey hollows. No participant said it was easy.
But they did speak about the deeply profound
nature of their experiences. When participants
spoke of their feelings they spoke of privilege,
joy, love and that they felt incredibly honoured
(FG 1). Another participant spoke of it this way:
There’s something that the space was alive with love,
light, mystery … I really enjoyed that. (FG 8)
Honour, joy and even enjoyment are alterna-
tive, or resistance, narratives to those usually heard
in research about caring for a dying person. The
following quote shows that this participant was
aware that this was not the usual way to speak:
It felt special. I don’t know how you can think that
somebody being so sick was special – but it was very
special. (FG 2)
These feelings led to the overall experience
being one of intimacy which people were grate-
ful for:
I’m so grateful for having that time I cared for my Dad.
(M5)
While love would be an emotion you would
expect from direct and close family members the
caring network also spoke of love, loving the
experience, or a quality of love in the home:
The love was there … it was like – pure, beautiful,
elevated space or something … So it was about being
in that space with him, which I loved. (FG 8)
This quality of love appears to be an out-
come of the day-to-day tasks of caring in a
378 HSR Volume 21, Issue 4, December 2012
compassionate and helpful way. And this was
seen as beneficial for the caring network. They
appreciated the opportunity to be allowed to
provide care and support. Again this was not in
any romanticised way. Often the tasks involved
were difficult, sometimes pushing people to the
edges of their competence:
It was a bit nerve wracking … what do you do to help?
What do I do? Tell me what to do? (FG 1)
However, there was a strong sense of personal
fulfilment that came from rising to the challenge:
I felt really honoured and privileged … the person
that’s giving actually gets a lot out of it. (FG 5)
The research literature about EOL emphasises
the burdens and challenges associated with car-
ing. This research brought to life stories of grati-
tude, love, privilege and intimacy as people come
together to care for someone. The challenges and
hardship associated with caring were also dis-
cussed; however, these were mediated by support
from family and friends and the wider network.
Transformative effects on individuals:
Developing knowledge and skills
I came into it not knowing you could care for somebody
at home but she was dying and not dying fast enough
for the hospital system and they kept sending her home
and taking her back in and then sending her home again
because they needed the bed. And it was very distressing
and without any knowledge I decided that we could do
better and brought her home … I managed to care for
Mum until she died at home which was a great experi-
ence for everybody her family and me and it was our first
experience but a great one. (M3)
People in the networks consistently reported
that they did not know you could die at home or:
what options were available. I didn’t realise you could
get a nurse to come in. I didn’t know there was HOME
Hospice. (FG 1)
They didn’t know how to do the physical
tasks of caring or what to expect as the person
neared the end of their life. The quote above
captures both the distress this lack of knowledge
can cause as well as the satisfaction felt when this
was overcome and the carers were able to ‘man-
age’. The above quote also shows a recurrent
theme in the data; that the hospital system was
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 Caring at end of life builds social capital & community capacity
at best unsupportive and at worst obstructive of
people’s desires to care for a loved one at home.
Resisting the ‘system’ and fear of not knowing
took great courage and:
enormous determination not to be sidetracked. (FG 8)
And this is where both the core and outer
networks came into their own. They helped
with the multiple tasks of caring. Those with
prior knowledge shared their knowledge:
You kind of gleaned bits from everyone who came in –
you’d learn something else about what could be done
and carers quickly learnt who to ask for what sort of
help and information. (FG 8)
The learning that took place was ‘on the job’,
experiential, requiring the active support of oth-
ers in the caring network and whilst certainly chal-
lenging, people reported an overwhelming sense
of achievement and satisfaction:
I’ve grown a lot or learned a lot – all the stuff I know
now that I had no idea about (FG 8); There’s a selfish
act in caring … you’re learning more about what it is
to live. (FG 9)
What is particularly hopeful in these stories
is the evidence that people do have the abil-
ity to step outside of the institutionalisation of
dying. The people in this research have shown
that even with no prior knowledge or special
set of skills, they are more than able to care for
someone at the end of their life, at home. Carers
and their networks demonstrated time and again
that they could ask for information and that they
could learn complex physical and emotional car-
ing skills. And they remind us again, that it takes
a community of people to achieve this.
Changes in attitudes to death and dying?
Even Mum did not think she was allowed to die at home
she thought she had to go to the hospital to die and yet
she was an elderly person who probably saw people die at
home when she was young. (M3)
We wanted to know if and how being part
of a caring network impacted people’s attitudes
about death and dying. By far the most com-
mon response to our question ‘have your atti-
tudes to death and dying changed as a result of
your experiences?’ was that participants now
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HSR
knew that you could die at home. Prior to
being involved in a caring network a number of
participants had:
always thought hospital was the only place you could
die. (FG 2)
As the quote at the beginning of this section
shows, this belief could also be held by people
who were at the end of their life. The partici-
pant reflecting on this above draws attention to
the historical nature of this belief stating that in
her mother’s lifetime people have moved away
from dying at home, into hospitals. The alter-
native stories of people in the caring networks
show that on the whole the experience demysti-
fied death, locating it within the social sphere
and the experience of living.
An extension of demystifying death and dying
is the ability to talk about these experiences.
However, a strong theme in the data was the
belief that on the whole people do not like to
have these sorts of conversations:
Some people won’t say the word, ‘death’ … People
don’t talk about dying. (FG 5)
Being able to talk about these experiences, and
finding the right language may also help in future
experiences. An experience is just that, unless
reflection on that experience takes place, trans-
forming it into learning and possibilities for future
actions (Boud, Keogh, & Walker, 1985). People
did report that the caring experience encouraged
them to reflect on their previous experiences
which they thought was a positive thing:
I took home with me my responses and talked about
it with my husband … It forces you to deal with your
own experiences and talk about that as well, which I
think is a good thing. (FG 1)
While some found the caring experience very
confronting (FG 1) for others:
it’s changed my idea of how I’d like to end my life. (FG 2)
Caring increases people’s knowledge and
changes their feelings towards the process of
dying; this can be talked about as a change in
attitudes to death and dying. Overall the caring
experience appears to have enabled people to
reflect deeply on previous deaths they may have
HSR 379
HSR Debbie Horsfall, Kerrie Noonan and Rosemary Leonard
witnessed or participated in as well as providing
possibilities for them in planning where they
would like to end their life, and how. This cer-
tainly demonstrates a change in people’s knowl-
edge and feelings about dying, particularly place
of death possibilities.
RIPPLING OUT: DEVELOPING A COMMUNITY’S
CAPACITY TO CARE
It is undoubtedly useful for people to develop
their skills and knowledge about death and
dying and while this is powerful for individuals,
in terms of contributing to the wider commu-
nity, or developing a community’s capacity to
care, this personal development needs to ripple
out into the broader community in material
ways. A person using their previous experiences
to support others as part of a caring network is
one example of rippling out. All but one of our
focus groups included a community member
who had at least one previous intimate experi-
ence of death and dying. Being part of a research
project which makes private experiences public
and open to debate, scrutiny and learning, via
written reports, conference papers, and journal
articles plus – perhaps – impacting policy deci-
sions of partner organisations is another example.
We also found evidence of people express-
ing a strong desire to:
help everyone and anyone to draw support and infor-
mation from Louise’s and my experiences. (C1)
Other people mentioned rippling out strat-
egies such as sharing of information, providing
feedback to their health professionals, visiting and
advocating in hospitals and even writing a book.
One person in particular has become a much
sought after advocate in her local area, working
to support others to care for people at home:
I’m very proud to see her as an advocate for other peo-
ple and using her experience to be an enabling thing in
community for others. (FG 5)
While for other people their experience has
influenced study and career decisions:
I’m just currently finishing Cert 4 in Aged Care and the
main module of that is palliative care and once I finish
that that’s the field I’d like to follow through. (FG 9)
380 HSR Volume 21, Issue 4, December 2012
In another example an allied health
professional found that her experiences of being
part of an informal caring network has impacted
her work:
The stuff that you taught me I want you to know that
I’ve built myself up a lot in caring for my old people
at work. (FG 9)
High levels of social capital exist when there are
strong networks with numerous interconnections
between members. Other frequent themes in the
social capital literature (Leonard & Onyx, 2004),
are high levels of trust and reciprocity, strong social
norms, and social agency. So, if caring is to con-
tribute to social capital, it would need to be organ-
ised in such a way that it can assist in the creation of
wider or stronger networks. Ideally, it would also
build trust, reciprocity, adherence to social norms,
and facilitate social agency (Johansson, Leonard, &
Noonan, 2010). All of the caring networks rep-
resented in this research became both wider and
stronger as a result of caring for someone at the end
of their life, at home. These changes appear to have
been maintained over time:
We’ve actually continued the friendship … In fact she
and her husband and son are still very close friends and
we do see each other socially and keep in touch. (C1)
In addition to the networks growing wider,
the quality and nature of the relationships within
the networks changed, illustrating an increase in
trust and reciprocity. People commented that
there were more, stronger connections (FG 1), that
they had become closer, it’s more intimate (FG 3)
and that the intensity of relationships has changed
(FG 1). The change in size of the network also
had a feeling quality to it:
it just looks like everyone loved me more. (FG 9)
Changes in relationship outside of the imme-
diate family of the carer could be said to be
another example of the rippling out effect of the
work of caring networks. Again people spoke of
becoming closer and talking to each other about:
our work and other things we probably wouldn’t have
talked about before. (FG 2)
As relationships were strengthened friend-
ships grew:
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 Caring at end of life builds social capital & community capacity
It’s lovely to see it grow – friendships that have grown.
We’re getting to know people more. (FG 3)
Without exception the networks in this
research either maintained themselves, or grew,
as a result of caring at EOL. This overwhelm-
ingly positive response was to be expected. Our
design called for participants who had success-
fully cared for people at home and who had a
network of people helping them.
If a community is to develop its capacity to sup-
port the caring of those at EOL it needs knowledge
and experience, a sense of empowerment and sup-
portive social structures (Mayer & Rankin, 2002),
and as noted above, these have been lost due to the
medicalisation of death. Kellehear (2005) argues
that genuine community development and com-
munity capacity building can enhance the ability for
knowledge to be developed and stay present within
the community. This then enables communities to
utilise support systems, problem solve, make deci-
sions, and communicate and act more effectively.
This research begins to demonstrate how commu-
nities actually do this at EOL. Mobilising, using
and developing caring, or compassionate, informal
networks through active engagement in tasks pro-
motes a model of change which moves away from
the more usual health promotion approach which
is to ‘educate the community’ so that they can
participate. Rather this model of change supports
networks of people to participate in the day-to-day
tasks of caring for people.
CONCLUSION
Caring does not need to be a drain on social
capital, as is usually suggested in the literature,
nor does it need to be an isolating experience
for either the carer or the person being cared
for. Rather, caring can contribute to social capi-
tal with carers and the cared for being part of a
vibrant and growing network of relationships.
Being part of a caring network for someone at
the end of their life must be one of the toughest
situations to manage in terms of growing social
capital but people manage it. When caring gen-
erates social capital, it no longer just addresses
a private need but potentially contributes to a
public good, a resource that can be used by the
network or community members to address
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HSR
other community needs. It also models both the
practice of caring and the caring society.
In order to make sure that these networks
are sustainable and that people who provide
unpaid caring are not exploited and isolated
informal carers, and networks, need support-
ing. Carers need permission and practical hands
on help to gather caring networks together and
to negotiate the type of help they need. In the
research discussed here, over half of the partici-
pants had contact with HOME Hospice, so we
both expected and found a strong caring net-
work for many of these people. Organisations
which provide paid care at EOL could take on
an active role in promoting death literacy and
facilitating and supporting informal caring net-
works from a community development perspec-
tive. This position is already part of academic
and palliative care policy debate (Abel, Bowra,
Walter, & Howarth, 2011; Rosenberg, 2011).
Remaining conceptually and practically focused
on community development and social justice
will help organisations to engage and participate
with/in the community, to educate themselves
about community needs and desires, to see lay
people as possessing agency, knowledge, skills
and abilities from which professionals can learn
rather than just the other way round.
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Received 19 January 2012 Accepted 10 September 2012
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