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“We are all in this together”: Building capacity for a community-centred approach to caring, dying and grieving in Australia



Background, aims and objectives: Compassionate Communities is emerging as an international strategy for implementing the public health palliative care approach to end-of-life. It is a community-centred approach which places people and their naturally occurring networks at the centre of care, death and grief, thus extending the concept of person-centred care to network-centred care. In this article describe the first steps in the development of a Compassionate Community in the South West of Western Australia (2018). The aim of this initiative was to create opportunities for conversations around death, dying and loss; identify naturally occurring community connectors and hubs within the community and to foster a Compassionate Communities model of end-of-life care for practical and social support.Methods: To facilitate a ‘positive’ conversation, a format of a Mini Death Festival was undertaken to engage the broader community and to launch the South West Compassionate Communities Network. Attendees were invited to participate in a brief on-line survey describing their experiences with the event.Results: Over 100 people attended and 43 people registered on the day to be part of the Network. Response rate for the on-line survey was 63%. Feedback was overwhelmingly positive. The qualitative analysis generated 6 themes describing the benefits that participants reported, from cherishing the feeling of being connected, to building relationships through conversations, to learning and creative engagement through to feeling in a position to take action.Conclusions: The death festival enabled the South West Compassionate Communities Network to identify and develop an extended network of people who see themselves as part of a shared community of interest and who have an understanding of each other’s skills and talents. These individuals are vital assets in furthering the Compassionate Communities work and potential resources the Network can actively partner with to co-design the way forward. This is one example of an emergent evidence-base for how Compassionate Communities can be operationalised in the Australian context.
© Annals of Palliative Medicine. All rights reserved. Ann Palliat Med 2018;7(Suppl 2)
Original Article
Developing compassionate communities in Australia through
collective caregiving: a qualitative study exploring network-
centred care and the role of the end of life sector
Debbie Horsfall
School of Social Sciences and Psychology, Western Sydney University, Sydney, Australia
Correspondence to: Debbie Horsfall. School of Social Sciences and Psychology, Western Sydney University, Sydney, Australia.
Background: The new public health palliative care movement calls for a move away from an individualised
model of caregiving to a whole of community approach which will increase expectations on community
carers. In order to avoid carer isolation, exploitation and potential burnout there is then a very real need to
understand environments and relationships which support collective community caregiving. In this research
we explored in-home caring networks to understand if and how network centred care supports carers of the
dying while developing a whole of community approach.
Methods: Over a 6-year period the research team spoke to 301 caregivers, service providers and community
members via interviews and focus groups in regional, rural and urban Australia.
Results: People are already caring for their dying at home and doing it well provided they are
comprehensively supported by networks of care. Being part of a caring network provided people with a sense
of achievement and developed their death literacy which owed into a myriad of other community activities.
While caring networks are essential they are not widely supported by service providers. At worst, services
are obstructive of peoples stated preferences for place of death and caring and often adopt a paternalistic
approach. Place of care, in this case the home, was supportive of maintaining networks and peoples’
Conclusions: Operationalising public health approaches to palliative care requires moving to a place-based
network centred model of care comprising formal and informal carers. Service systems need re-orienting to
place caring networks as central to the caregiving process. This can be achieved by putting systems in place
which initiate and maintain such networks and enable service providers to work with informal networks as
equal and respectful partners.
Keywords: Informal networks; end of life care; public health; palliative care; social networks; caring at home;
social capital; community development
Submitted Feb 27, 2018. Accepted for publication Mar 13, 2018.
doi: 10.21037/apm.2018.03.14
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Caring and support and community can be difficult to bring
together at times of need. The services in our community and
extended support networks are essential so that both the person
being cared for and the carers are supported (ON 12).
New public health approaches to end of life (EOL)
care are encapsulated in the compassionate communities
and cities movement (1) where caring for one another
at times of need, loss and/or crisis becomes the task and
responsibility of everyone (2). Such a move towards social
and collective responsibility requires a recalibration of
health and social services and communities. For health
and social services, the challenge is to work with people in
respectful partnerships which promote collective wellbeing;
Annals of Palliative Medicine, Vol 7, Suppl 2 April 2018
© Annals of Palliative Medicine. All rights reserved. Ann Palliat Med 2018;7(Suppl 2)
for community members it means taking responsibility to
care for each other in times of need.
Most of the research in EOL care focusses on non-
professional caring as a burden (3-6). Such research tends to
have a narrow focus on the primary carer, usually a family
member, with the emotional, physical and psychological
costs of such care being well documented (7-10). This
reflects a medicalised and individualized orientation
where the carer is at risk of harm, needing to be relieved
of the burdens associated with such care (11), as such it
is problematic to expect community members to take on
this burden as informal carers. However, caring at EOL
can also be rewarding providing meaning, purpose and
a sense of belonging, thus having a positive impact on
carers wellbeing, quality of life and social relations (12-14).
Furthermore, carers do not always want to be relieved of
their caring role preferring to be supported to continue
caring in non-institutionalised environments (15).
Understanding these complex lived experiences is
becoming increasingly urgent as policy developments
towards deinstitutionalising dying and death (16) will
increase the role of community EOL care. Adequate
support is required to develop a whole of community
approach to avoid potential exploitation of informal carers,
often women who dominate the unpaid caring eld (17-21).
A caring network approach can be protective of primary
carers wellbeing in addition to developing compassionate
communities by building a network’s death literacy (22,23).
A care network is a functional subset (24) of a person’s
social support network which emerges to provide specific
help because of a particular need—in this case dying. They
comprise a complex web of supportive relationships which
surround the dying person and their primary carer (24-28).
There is increasing evidence that carers with active
networks experience decreased social isolation and fatigue,
improved social support and increased condence in asking
for help with the result that a successful home death is
achieved (28-30).
If dying, caring and death are to be understood and
responded to as social events (22) where isolation, anxiety
and fear are seen as social problems which can only be
fully addressed by a whole of community approach (2,31)
then we need to understand the communities experience
of caring together from their point of view. In the present
research a networked approach to care was explored with
new public health perspectives of palliative care and social
capital (32,33) the main conceptual frameworks particularly
the micro position of social capital, which focusses on social
networks and relationships (34).
The Caring at End of Life research project, comprised a
pilot [2009–2011] in New South Wales (NSW) Australia,
and the main project [2012–2015] in NSW and the
Australian Capital Territory (ACT). Both were partnership
research primarily between Western Sydney University
(WSU) and the Cancer Council of NSW (CCNSW). The
pilot was jointly funded by CCNSW and WSU and the
main project funded by the Australian Research Council
(ARC) and CCNSW. Project partners included WSU,
CCNSW, the Commonwealth Scientific and Industrial
Research Organisation (CSIRO), Australian Catholic
University/Calvary Health Care ACT, and Queensland
University of Technology. Institutional ethics approvals
were obtained prior to commencement.
Specically, the aims were to understand:
The lived experiences of people who successfully
provided in-home care for someone who was dying;
How caring networks are initiated and maintained
and what enables and supports these networks;
The nature, function and effects of in-home caring
The relationship, if any, between formal and
informal caring networks;
Differences in regional, rural and urban locations.
The research was qualitative, in-depth and strengths
based comprising interviews and focus groups with carers,
caring networks, community members and service providers
involving 301 participants in urban, regional and rural areas.
Providing robust opportunities for carers and community
members to tell us about their lived experiences (11) of
successful in-home caring was central. In this move away
from a problem centred approach the design was informed
by Appreciative Inquiry which seeks to uncover, analyse and
document what works in a given situation, with a view to
sharing this knowledge to effect systems change (35-37).
Photo voice was chosen as the main method with
informal carers to respectfully and sensitively elicit their
experiences of caring, not dying and death. This was a
significant challenge as narratives of dying and death are
powerful and usually accompanied by feelings of loss and
grief. In such situations photo voice enables participants
to tell visual stories providing a form of detachment that
facilitates critical reflection on lived experience (38-40).
Additionally, third generation network mapping (41) was
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used. The network mapping method, which places peoples
lived experiences as central, was used to reveal the extent
and dynamics of networks, the relationships within them,
and to capture how these changed, or not, over the course
of the caring journey (27).
Carers and caring networks focus groups and interviews
Participants were recruited, through an opt in approach, by
CCNSW network communications, and regional and state-
based newspaper and radio interviews with the researchers,
advertisements and editorials. Respondents were invited
to participate if they, as a primary carer, had cared for a
person with a terminal illness in their home. At this point
they also self-selected either a focus group comprising their
own caring network or a 1:1 interview approach. Carers
choosing the focus group were supported by a research
assistant (RA) to recruit their self-identied caring network
for focus group participation. Subsequently a third group
of opt in participants, an outer network (e.g., teacher,
friends of friends, local shop keepers), were interviewed 1:1
via phone having been identified from the previous focus
groups and interviews. Only people who self-identified as
having successfully cared for someone at home participated,
people who had predominantly negative home-caring
experiences may have chosen not to take part.
All participants, with the exception of the outer
network, were given a disposable camera 2 weeks prior
to their focus group or interview to take photographs of
significant people, activities or events from their time of
caring. Cameras were returned to the RA and the processed
photos were informally displayed at the interviews or focus
groups where participants discussed the visual data (their
own photos) guided by a series of questions. In the second
half of the interview or focus group participants were
invited to collectively draw two network maps showing
the size and density of their caring network before they
began caring for a dying person at home (map 1) and in the
second map to draw their networks at time of interview of
focus group (map 2) (27). Participants then discussed any
perceived changes in the two network maps. Focus groups
and interviews were semi-structured, held in a place of the
primary carer’s choosing, usually the home, audio-recorded
and transcribed. Focus groups took approximately 3 hours
and interviews approximately 1 hour. Outer network
participants were interviewed 1:1 about their experience of
the caring situation, the role they played and the effects if
any this network made to their knowledge about death and
dying with participants drawing their network maps at the
end of the interview.
From both the pilot and main projects there were
23 focus groups, 34 primary carer interviews and 17 outer
network interviews representing 56 caring networks.
Detailed demographic data was only collected for the main
project: 9 primary carers were men and 30 were women;
women cared as spouses/partners, sisters, daughters and
friends and men were primary carers only for their spouse.
Age range of primary carers was 42–80 s, with most being in
their 60 s, with other focus group participants in the main
project comprising 50 women, 21 men, 1 girl, and 4 boys,
from 9–80 years of age. The period of in-home care ranged
from 4 weeks to 25 years with the majority being between
3 months and 1 year with 33 people dying at home and 6 in
Service provider focus groups
For focus groups with EOL sector service providers the
research team worked closely with the research partners,
particularly Cancer Council NSW and Calvary Centre for
Palliative Care Research, to recruit participants. Letters
and emails were distributed widely to health services,
community organizations, peak bodies, and volunteers with
participants opting in via an online booking site. Eighty-
eight participants (82 women and 6 men) took part in one
of 10 focus groups held across NSW and the ACT. They
were asked to discuss their experience with informal care
networks, their perception of the nature, role and benets
of such networks, and their current and/or potential
role in assisting carers to establish and/or maintain care
networks. Focus groups lasted 2 hours, were held in central
community locations, were audio recorded and transcribed.
Participants came from a range of EOL services including
palliative care nursing/medical (n=32), volunteers (n=15),
volunteer coordinators (n=8), disease-specic organizations
(n=12), pastoral care (n=6), carer services (n=8), social
workers (n=4), support groups, and other (n=3).
Data analysis
Transcripts were thematically analysed using both an
inductive and deductive method (42,43) andNVivo10™
software was used to manage the large dataset and facilitate
an interpretive and data-driven analysis. Transcripts were
firstly collectively coded by the research team to identify
elements key to effective EOL caring at home. Each
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researcher then worked with core concepts independently.
At the end of this stage each individual’s analysis was
correlated between researchers, searching for rigour,
validity and meaning. Emergent ndings were further tested
at national and international conferences in the palliative
care sector over the nal analysis period.
For the network maps the first level of analysis took
place in the focus groups and interviews to understand
and determine the important aspects for participants. The
second level of analysis was a qualitative analysis of the
discussions, as detailed above, and the quantitative analysis
of the maps where the hand drawn network maps were
transcribed into an adjacency matrix. UCInet and NetDraw
software were used to analyse the extent and density of the
network and any signicant changes over time (27).
In the results and discussion below, people’s names have
been changed, verbatim data is included in italics with
(FG 9) indicating data from a caring network focus group;
(CI 2) indicating data from a carer interview and (ON3)
indicating data from an outer network interview. PS
indicates data from the pilot study and SP indicates data
from a service provider focus group.
The importance of networks of care
I’d do it again for Mum. It improved my relationship with my
brother. It gave me insight into Alzheimer’s. It allowed me to
come in contact with people I would never have come in contact
with. I feel very blessed in that I’ve had that opportunity (CI 10).
The caring networks in this research were competent,
capable and essential. They undertook a variety of caring
tasks from bringing food, walking the dog, modifying the
home environment, and mowing the lawn to assisting with
personal and medical care and helping the carer navigate
the complexities of the health system. This support was
specic to each situation and was what was needed, not what
was assumed: she didn’t need massage or meditation she needed
firewood (CI 3 PS). The size of the caring networks varied
considerably with the smallest having 3 people and the
median being 15 with a common feature of containing at
least one person who had prior experience of death, usually
a hospital death. Service providers when mentioned, were
seen as essential, but not central, to the everyday caring of
someone at home.
Carers did speak about challenges and struggles and the
sheer hard work of sustaining their caring role, often over
years. The main struggles included access to information
and advice; the costs of caring at home often compounded
by a reduced income; the emotional impact of their own
and others’ expectations; anxiety; and the physical demands
of caring. Significantly, some of the greatest challenges
carers reported were with hospitals, GPs, and other formal
medical services (44): the pain we had in having to fight for
these things along the line… its ten times worse because you’re
into the bureaucracy type stuff (CI 9).
Having a functioning caring network mitigated feelings
of burden as the networks assisted in negotiating the health
system and identifying relevant services and in-home help.
There was evidence that having a supportive network
alleviated feelings of anxiety: I was kind of scared that I wouldn’t
be up to the task, and I thought ‘well everybody thinks I am, so
perhaps I am’ (FG 7) in addition to being available to help at
all times of the night and day: I gave Mary a call at six o’clock
in the morning and said, ‘Mary! You know you said you might
be able to help with Ray…’ they came round in ve minutes (FG
9). Networks also helped financially giving gift cards (FG
8) fundraising (SPFG 5) or collectively giving money: for
Bernie’s funeral quite a few of them turned up and they gave me a
card and inside the card—they had a collection—was $350 cheque
(CI 4). The data showed numerous other examples of
problem solving by the networks in addition to people just
showing up at the end of the day for happy hour around the
bed with a glass of champagne or a cup of tea.
Collective caring at EOL also had a communal effect. All
of the networks increased in size with relationships, or ties,
between members strengthening over the period of caring
(27,30). For example, Jane, who cared for her husband for
2 years had a self-identified caring network of five people
when caring commenced. At the time of the focus group
this had grown to 17. As carers developed knowledge about
network members trust and reciprocity increased changing
the nature and quality of the relationships. For members
of the network, other than primary carers, relationships
transformed demonstrating increased cohesion: these sorts of
things do broaden your community and your support (FG 1 PS).
These changes built a sense of community and feelings of
trust and reciprocity as people felt they could rely on their
community in times of need: I suppose the main thing is that
it’s obviously the building blocks of community. That people pull
together when they need to… it made me think I want to stay
(CI 15) demonstrating that collective caring at EOL can
contribute to, and build, social capital. Furthermore, when
these caring networks worked well they were enduring: this
network has been maintained even a year later. So in fact this is
S46 Horsfall. Compassionate communities and collective caregiving
© Annals of Palliative Medicine. All rights reserved. Ann Palliat Med 2018;7(Suppl 2)
an enduring network (CI 17).
In all of the networks it was the primary carer who
was the bridge between members of the network and
professional EOL services. This is significant as while
caring networks work against social isolation and potential
carer burnout, as the network increases in size the burden
of coordinating can increase. While there were examples
of other people taking up bridging activities as the network
grew it was still the primary carer who did the majority of
this work.
There were no discernible differences in the data
between caring networks in rural, regional or urban
areas despite the data being re-interrogated in search of
differences. Another surprise was that while the primary
carer was usually, but not always, a close relative it was
friends of the primary carer or dying person (or both) who
were central and consistent. In terms of how networks arise
there were no discernible patterns with each network being
born of local and relationship specicities. For example, in
one location (FG 1) the corner shop owners learnt that a
community member was being cared for at home so they
put a notice up in the shop to inform people and devised a
roster of support. In another example the dying person was
a member of a local spiritual group and it was this group
which primarily rallied around the carer supplemented by
family members (FG 5).
Both primary carers and members of caring networks
spoke about their caring journeys as ones of collective
achievement expressing their experiences triumphantly:
I tell everyone because I just had no idea that that’s what went
on at home. So I’d never seen anything like this before and
I tell everyone. Just amazes me (FG 3). This differs from
much of the burden focussed literature and can partially
be explained by the collective nature of the caring effort.
People collectively learnt what they needed during the
caring process, supported each other to overcome their
fears and felt proud of their achievement in addition to
nding meaning in the death of the person they cared for:
it wasn’t just a death. It was a good death. It was a loving death,
surrounded by love and kindness and gratitude for this wonderful
man (FG 8).
As a result, people increased their death literacy (23)
rippling out into the community as they became advocates
within the health system or supporting others to provide
in-home care. In one of the few examples where a palliative
nurse was included as a core network member (FG 5) the
experience changed his perception of the benets of caring
at home and the competency of informal caring networks.
As a result, he is now actively supportive of a caring
networks approach.
The importance of place
Place, in this case the home, facilitated the maintenance
of caring networks. Home, like community, is contested
in the literature (45-48) with good reason as home can be
a place of abuse and exclusion, people can be isolated at
home and when people are dying the home may be full of
the paraphernalia of care (18), rendering them less home-
like. The findings do not present home as an idealised or
romantic ideal, they do however show how home facilitated
the coming together and maintenance of caring networks.
Network members developed and strengthened their
relationships with each other through renovating, gardening,
cooking and eating together, celebrating important
occasions and collaboratively planning to meet the dying
person’s and carers needs: it was just kind of a hub for me
(FG 7). People spoke of sitting with friends and/or family,
having a cup of tea or a chat under the window (CI 12)
or around the kitchen table. This gathering together
meant they could also identify and take care of everyone’s
practical and wellbeing needs. While the focus was on
the dying person and the carer the network also sustained
itself and this was enabled by sharing space, tasks and
rituals such as meals and celebrations. Additionally, the
home accommodated intergenerational caring networks:
it was the ability to just have the little ones and they could just
wander up and down (CI 18). With no visiting hours and
flexible, familiar and comfortable spaces caring at home
made it possible for visits to be organised around member’s
responsibilities. Routines could be accommodated, created
and negotiated as a set of social and familial relations:
everybody knew that if they wanted to visit…they could just come
in…so everybody could do what they wanted, when they wanted
(FG1). Home as a place of care enabled the complex needs
of the dying person to be met while connections with family
and friends were maintained.
The importance of nature and pets
Social isolation is well-documented in the literature (49)
with in-home carers being especially susceptible. However,
an effective caring network works against this, indeed,
it is possible that people’s networks can grow during the
caring journey. The data in this research also enlarges
understandings of connections that are important
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to people challenging who and what are considered
essential components of a caring network. While social
connectedness is known to be essential for emotional
and psychological wellbeing (50,51) nature and the non-
human may be as vital to our wellbeing (52-54). This was
reected in the data where participants spoke at length of
the importance of nature and the non-human with carers
taking solace in a view from the window or walking in the
local bushlands: being able to go outside where it feels peaceful
and calm—it’s just about being able to have spaces that feel really
nurturing outside (CI 6). Being at home provided easy access
to these supportive places which also provided respite from
caring: I had a courtyard…It was a great outlet for me because it
was just straight outside the door at the back…it was wonderful
(CI 26).
Animals were also important members of the caring
network providing comfort and support to the dying person
and the caring network: I felt the experience at home here was
a lot better because…the dog was involved (FG 5). If the pet
was with the dying person then the primary carer could
get on with other tasks knowing that the dying person
was in good company: I’d say Sophie was Phil’s best friend I
think regardless of all the humans around the place (FG 11).
Pets also welcomed network members to the home and
provided a way of easing into the caring environment.
Carers spoke strongly about these members of the caring
network with many animals attending focus groups and
The relationship between formal and informal networks
Service provider participants had extensive knowledge of
informal networks and the multiple benets they provided,
however, overall they did not believe it was their role
to help establish or maintain caring networks despite
them recognising their complementary relationship: if
we’re told that the church group is helping with meals and
transport we don’t ever talk to the church group (FG 3 PS).
These participants spoke at length about barriers to
working with informal networks with the most persistent
being complex institutional rules and regulations which
worked against strengthening relationships (28,44). These
regulatory systems included risk management, privacy, and
confidentiality which constrained service providers from
working directly with informal networks:
We’ll get people on the periphery who contact us and say, ‘Joe
Bloggs at number 6 Smart Street really needs some help. Can you
please do something and we’re stuck in a situation where we have
to say, ‘I’m terribly sorry. If Joe Bloggs hasn’t committed to this
referral and he hasn’t consented to this referral, we’re not able to
do anything’ (SPFG. 8).
Service providers were also concerned about the lack of
caring skills in informal networks, believing this could be
addressed by screening and training. They also questioned
community capacity believing that dispersed families and
work demands meant people were unavailable to care.
These combined concerns meant services are not inclined
to support peoples’ choice to die at home. While these
are very real concerns, and demonstrate a lack of trust
in non-professional support, they were not borne out in
the data [or other research (55)] from the carers and the
networks where there were numerous examples of family
temporarily moving back to help, of networks providing
nancial assistance and of employers providing exible work
arrangements including extended leave, for example.
From the informal networks point of view health
services and systems, including palliative care, were
often experienced as cumbersome, paternalistic and
depersonalizing bureaucracies. While carers reported that
their negotiations with such systems were often when they
experienced the greatest sense of struggle they also showed
insight into why this might be so:
The social worker told me that it was 85% don’t make it back
home and I said, ‘Watch me’. John and I were both in tears. She
said, ‘No. It’s not going to happen’. I said, ‘Well what would you
like to see happen to him?’ She said, ‘Well, we’ll put him in. If
he takes too long to die in the hospice, we’ll put him in a home’.
I think they’re trying to save you. I understand where they’re
coming from. They know it’s difcult and it is, it is (FG 8).
The data from carers, caring networks, service providers
and community members demonstrated that when the
network works well the outcomes were transformational
for all concerned. However, successfully integrated
networks were rare (44) often due to differing cultures
and expectations. Competent, appropriate and timely
professional support was welcomed by informal carers.
However, when formal network members showed they cared
through listening, acting with integrity and dedication,
providing equipment that worked and demonstrating
warmth through a smile or a kind word these were highly
valued: he was very gentle and loving and caring and very
professional (CI 15). Such people were seen as going above
and beyond their duty. As one palliative care specialist said,
this is not rocket science (SPFG 7), however, the seemingly
simple requires a re-negotiation of the usual relations of
power present in such encounters and this is never an easy
S48 Horsfall. Compassionate communities and collective caregiving
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task requiring the sharing of power and authority.
When services recognised the value and competency of
the caring networks and facilitated communication between
informal and formal carers, they were seen as helpful, and
central to the tasks of caring: the nurse in charge—arranged
with the chemist she’d ring up the chemist and say ‘we’ve got
to have this’ (CI 23). In doing so service providers reoriented
their values and behaviours to see themselves as part of a
team of carers who were equal, who each had an important
part to play.
Perhaps one of the distinguishing features of caring
for the dying at home is that it involves complex and
demanding care tasks (56) within an atmosphere of
heightened emotions and lack of knowledge as a result of
institutionalisation (23,56,57). As such what is required are
competent and compassionate care networks comprising
both formal and informal carers to share the caring work.
Much of the work are tasks of everyday living: dropping
children off to school; making sure there is enough food
for visitors who ow in and out of the home and having the
right medications at hand when needed, for example. Such
tasks require life experience and the ability and willingness
to help (2). This stance towards caring recognises the
multiple interdependencies we have on each other where
caring about and caring for one another is underpinned by
a set of ethical moral practices (58,59) which improve the
wellbeing of us all. In the research reported here it was clear
that when a caring network functioned well and carers were
comprehensively supported everybody benefited and the
effects owed into the community.
However, in order to provide people who are dying, their
carers and caring networks with the right support at the
right time and in the right place the systemic paternalism
inherent in many of the interactions between dying people,
their caring networks, and systems of professional support
require recognition, challenge and change. Services need
to re-orient their systems to closing the gap between the
two cultures currently embedded in formal and informal
caring networks. This can be achieved by: a re-evaluation of
organizational values; a recognition of the primacy of caring
networks; and, finally removing the inherent paternalism
in health care provision, including palliative care (44). The
realisation of these three principles is located firmly in
the new public health framework (60) and is a civics
approach (61) where we are all responsible for each other in
a networked ethic of care.
The findings also show that place matters and can be
actively supportive of caring networks. While home can be
problematic for some this is not an excuse to dismiss the
stated preferences of dying people and their carers (20,62)
or to ignore the potentiality of in-home caring to facilitate
caring networks and carer wellbeing (12). In operationalising
new public health approaches to EOL care a central concern
has to be promoting and sustaining the wellbeing of informal
carers of the dying and place is part of that.
This network centred place based approach requires a
reconceptualization of caring away from individuals to
networks and activities of collective caring. This means that
the EOL sector must develop communication pathways with
informal caring networks and provide resources to develop
and implement strategies for working with them, not
instead of them (44). An obvious starting point is to relieve
the primary carer of the potential burden of initiating and
coordinating the network of care. It also means treating
seriously peoples stated preferences for places of dying and
of providing care. It means moving from a predominantly
individualised care model to a network, community centric,
model of care which when done well can indeed be good for
I would like to thank all the research participants who so
courageously and generously shared their experiences and
their stories in the hope of making a difference. Thanks also
to the expertise and sustained commitment of the caring
at end of life research team, Kerrie Noonan, Rosemary
Leonard and John Rosenberg.
Funding: This research was funded by a Western Sydney
University Partnership Grant (partner, Cancer Council of
NSW) and an Australian Research Council Linkage grant:
Conicts of Interest: The author has no conicts of interest to
Ethical Statement: Institutional ethics approvals were
obtained prior to commencement (NO. H9255).
Annals of Palliative Medicine, Vol 7, Suppl 2 April 2018
© Annals of Palliative Medicine. All rights reserved. Ann Palliat Med 2018;7(Suppl 2)
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Cite this article as: Horsfall D. Developing compassionate
communities in Australia through collective caregiving: a
qualitative study exploring network-centred care and the role of
the end of life sector. Ann Palliat Med 2018;7(Suppl 2):S42-S51.
doi: 10.21037/apm.2018.03.14
... Much of this support is provided by people already involved in the everyday lives of those recently bereaved (Aoun et al., 2019). The Compassionate Communities movement emphasizes the importance of building and sharing knowledge, skills and good practices among family, friends, neighbors, teachers and other actors in the community to support bereaved people, as opposed to viewing bereavement as an individual event placed exclusively in clinical and institutional forms of care (Aoun, 2022;Hilbers et al., 2018, Kellehear, 2013Rumbold & Aoun, 2014) and has identified the informal social network of people experiencing significant loss as the primary source of support. ...
The COVID-19 outbreak has further highlighted the need to strengthen support networks to sustain grieving people. However, we know very little about the experience of those who, because of their emotional connection with the bereaved person or of their social function, find themselves supporting people in grief. The current study aimed to analyze the experience of grievers' informal support providers (relatives and friends, teachers, religious leaders, funeral providers, pharmacists, volunteers, and social service workers). 162 in-depth interviews were collected (meanage = 42.3, SD = 14.9; women = 63.6%). Findings highlight two different ways of talking about one's experience and two different ways of offering support. Such dissimilarities do not relate to the period in which support was offered (before or during the pandemic). The results will be discussed in order to highlight emerging training needs to support bereaved people in their difficult transition.
... 25 By encouraging improved community literacy about death and grief, hallmarked by early conversations around death, dying, and loss, we can foster resilient and engaged communities who can contribute positively to the dying process. 1,26,27 This approach is being increasingly adopted around the world by palliative care and other This support is delivered by community volunteers (connectors) whose existing assets include EOL experiences and capacities, and their training includes skills in mobilising and developing caring networks. 15 The core idea is to build a system of EOL care that connects health services with community services, and formal care with informal care. ...
... The development of a measure of death literacy was triggered by the need to demonstrate the effects of the growing number of initiatives in public health palliative care (Abel et al., 2013) including community development programs labeled Compassionate Communities (Barry & Patel, 2013;Hilbers et al., 2018;Wegleitner, 2016). Sallnow et al. (2016) noted that, despite growing interest in public health approaches to palliative care, there is limited research demonstrating their impact. ...
Performing end-of-life care can be a catalyst for developing a capacity called death literacy. This study aimed to develop a comprehensive and useable measure of death literacy that has the potential to assess interventions with individuals, communities, and societies. Using a mixed methods approach, a Death Literacy Index was developed from personal narratives and input from practitioners and experts. Refined on a sample of 1330 Australians using exploratory and confirmatory factor analysis and structural equation modeling, a 29-item Death Literacy Index was found to be reliable and demonstrated construct validity. Further studies are needed to test predictive validity.
... 29 Importantly, vulnerable groups were a focus, such as for African American communities, 43 Indigenous and First Nations people in Canada, 26,44 and a programme for prisoners in Poland. 45 Arts initiatives were also common, such as a 'Mini Death Fest' in Australia 46,47 and the Döbra intergenerational arts programme in Sweden. 30,48 Caregiver focused initiatives were also present, such as the HELP framework in Australia, 11,49 along with hospice-volunteering initiatives, such as the N-CARE (navigation: connecting, accessing, resourcing, engaging) hospice outreach model to provide early palliative support in rural communities in Canada. ...
Background Public health palliative care interventions are increasingly implemented, with growing recognition of the importance of building evidence to support their utility in end-of-life care. Previous efforts have focused on community outcomes. Aim To examine the impact of public health palliative care on patterns of health service use at the end of life (primary) and explore which outcomes are being measured within this field of research (secondary). Design Systematic review of studies reporting qualitative and quantitative data, analysed with a narrative synthesis method. Data sources A systematic review conducted and reported according to the Preferred Reporting Items for Systematic Reviews and Meta Analyses guideline was undertaken using six electronic databases (MEDLINE, CINAHL, EMBASE, PsycINFO, INFORMIT and COCHRANE) up to February 2020. Results Searches yielded 2622 unique titles screened for eligibility, resulting in 35 studies measuring outcomes from a public health palliative care approach. Five (14%) studies assessed health system outcomes, and three reported some mixed evidence of impact, including reduced hospital emergency admissions, hospital bed days, hospital costs and increased home deaths. Most studies (86%) instead reported on conceptual (49%), knowledge (40%), programme participation (37%) and/or individual health outcomes (29%). Conclusion The impact of public health palliative care is an evolving area of empirical inquiry with currently only limited evidence that it improves healthcare utilisation outcomes at the end of life, and limited focus on measurement of these outcomes. Further empirical studies are needed to support the reorientation of health services, which remains an important component in realising ‘whole of system change’ to bring about quality end-of-life care for all.
... The issues identified by the non-cancer group in all domains of needs warrant more attention for development of more tailored and coordinated models of care, including the support from the non-government sector. This may also involve partnerships with the community to boost the support of the informal networks for example, through a Compassionate Communities Model of end-of-life care, 29 which harnesses the informal resources inherent in communities. 30 ...
Full-text available
Background Parents of children with life-limiting illnesses experience considerable burden and distress, yet few interventions have targeted their well-being. Objectives Evaluate the use and feasibility of the Paediatric Carer Support Needs Assessment Tool (pCSNAT) in assessing and addressing parents’ needs caring for cancer and non-cancer conditions. Carer well-being outcomes were also tested. Methods A non-randomised prospective intervention pilot study. Twenty-eight parents (out of 42 approached) and 5 health professionals working in paediatric palliative care services in Western Australia (2018–2019) completed the pilot study. Results Two-thirds of eligible parents completed the study. The highest support needs included having time for yourself; practical help in the home; knowing what to expect in the future; financial, legal or work issues; and knowing who to contact if you are concerned. Almost all needs were considerably more pronounced for the non-cancer group. The pCSNAT seemed feasible and outcomes demonstrated a tendency to improve. Conclusion Using the pCSNAT provided a concise and comprehensive ‘one stop shop’ for health professionals to evaluate difficulties encountered by parents. The disadvantages reported by the non-cancer group warrant increased attention. Paediatric palliative care should adopt routine assessment of parents’ support needs to anticipate early and tailored supports including partnerships with the community.
... There is a growing body of evidence showing that carers and dying people with active community networks and structural social and legal supports (via workplaces, schools etc.) experience decreased social isolation and fatigue, improved social support and increased confidence in asking for help (Horsfall et al., 2013;Sallnow et al., 2016;Hilbers et. al., 2018;Abel & Clarke, 2020). If dying, caring and death are to be understood and responded to as social events (Brown & Walter, 2014) where isolation, anxiety and fear are seen as social problems (which can only be fully addressed by a whole of community approach) then we need to understand how the theory and aspirations of Compassionate Commun ...
Technical Report
Full-text available
strategies for implementing public health palliative care. There is also a growing body of evidence documenting how these concepts can be operationalised, and what happens when they are (Paul & Sallnow, 2013; Barry & Patel, 2013; Wegleitner et al., 2015; Abel et al., 2016; Abel et al., 2018). In this report we present research findings of a nation-wide Compassionate Communities project in Australia over an 18-month period of time, from June 2018 to November 2020. In 2018, The GroundSwell Project initiated two funded projects with a focus on community development and community-centred care at end of life: Blue Mountains Compassionate Communities and the National Compassionate Communities Practice Forum (NCCF)1 . These projects encompassed nine diverse geographical communities across Australia and drew heavily on developments in the UK and Europe, in particular the Pathfinders Project and Health Connections Mendip (Abel & Clarke, 2020; Eyres, 2016). The overall aim of the Australian projects was to build upon this international work and tailor it to the Australian context. The hope was that by supporting these nine communities knowledge, stories and ideas about how to do Compassionate Communities in Australia would become contagious, enabling more communities to embark upon their own Compassionate Community work. Researchers from the Caring at End of Life Research Team at Western Sydney University initiated and supported a practice-based research group comprising selfselected representatives (called GoundBreakers), from the 8 NCCF communities, and the lead of the Blue Mountains project. This group functioned as an action learning/ research group. Together we reflected upon strategies, barriers and opportunities as well as critical moments in operationalising Compassionate Communities nationally. Additionally, the two GroundSwell community leads2, also authors of this report, were interviewed separately across the life of the project. Compassionate Communities work is relatively new. It is work which seeks to transform how and where we care for each other in times of need. It challenges the dominant medicalised model of caring at end of life. As such, the work, especially at this early stage, is bound to be a site of struggle and a place where people encounter resistance/s to their efforts. What we have captured here, are what Jim Ife (2009) might call multiple wisdoms from below: moments across time where the people leading this development on the ground reported on their struggles and successful strategies for change. Overall, we found that these people had clear understandings of, and commitment to, Compassionate Communities and principles of community development. They drew upon this throughout. Their knowledge and commitment were strengths. They believed that change was possible and this belief led to practices of hope, predominantly hope that doing caring, dying, death and grieving differently is possible. What we offer in this report is evidence that this hope is realisable as all of the Compassionate Communities took multiple and diverse actions to build their communities and support each other better in times of need at end of life. Furthermore, they developed collective strategies to overcome resistance. We found that the current dominant forms of evidence and models of leadership remain organisational-centric, which is a strong barrier to the documentation, and hence sharing, of this work. If we are serious about this movement, this research suggests that the leaders of this movement at all levels need to strongly advocate for community and civic-centric evidence, leadership, and knowledge exchange.
... Community initiatives, like compassionate community projects, enhance the natural supporters of grief through improving perceptions of and attitudes towards death, dying and bereavement, and harnessing the informal resources inherent in communities. [35][36][37] What is interesting is that, despite the different recruitment methodologies in the two studies and by consequence the different age distribution of the bereaved and their relationship to the deceased, the impact of the perceived insufficiency of support on health deterioration is very similar, just slightly higher in Ireland where the cohort with very recent bereavement in the last 6 months was included in the analysis (39% of total). The majority of the bereaved in Ireland were other relative and friend (total 63%) and the age is stratified to have equal proportions in each age group and hence only 29% were 55 years and over. ...
Full-text available
Background There is a dearth of national and international data on the impact of social support on physical, mental, and financial outcomes following bereavement. Methods We draw from two large, population-based studies of bereaved people in Australia and Ireland to compare bereaved people’s experience of support. The Australian study used a postal survey targeting clients of six funeral providers and the Irish study used telephone interviews with a random sample of the population. Results Across both studies, the vast majority of bereaved people reported relying on informal supporters, particularly family and friends. While sources of professional help were the least used, they had the highest proportions of perceived unhelpfulness. A substantial proportion, 20% to 30% of bereaved people, reported worsening of their physical and mental health and about 30% did not feel their needs were met. Those who did not receive enough support reported the highest deterioration in wellbeing. Discussion The compassionate communities approach, which harnesses the informal resources inherent in communities, needs to be strengthened by identifying a range of useful practice models that will address the support gaps. Ireland has taken the lead in developing a policy framework providing guidance on level of service provision, associated staff competencies, and training needs.
... The Irish INSPIRE (INvestigating Social and PractIcal suppoRts at the End of life) study of the Good Neighbour Partnership developed a robust methodology but was not completed. 10 In Australia, individuals, families and communities are already involved in caring for people who are unwell or dying or grieving, [11][12][13] but there is a scarcity of evaluations of Australian community-led initiatives of practical and social support resulting in improved social connectedness. This proposed study presents an opportunity in the Australian context to develop, implement and evaluate a volunteer-led intervention in partnership with the palliative care service within the West Australian Country Health Service (WACHS). ...
Full-text available
Background There is an international drive towards increasing provision of community-led models of social and practical support for people living with advanced illness. Aim This feasibility project aims to develop, implement and evaluate a model of community volunteers, identified as Compassionate Communities Connectors, to support people living with advanced life limiting illnesses/palliative care needs. The aims also include the development and evaluation of a training programme for volunteers and assessment of the feasibility, acceptability and preliminary effectiveness of this model of care. Methods The approach seeks to map and mobilise people’s personal networks of care through the Connectors enlisting Caring Helpers (community volunteers). Up to 10 Connectors will be trained to work with at least 30 families selected by the palliative care service as requiring support. The primary outcome is the effect of the intervention on social connectedness. Secondary outcomes are the intervention’s effect on unplanned hospital utilisation, caregiver support needs, advance care plans and satisfaction with intervention for patients/carers, volunteers and service providers. Conclusion It is expected that this intervention will enhance patient, carer and family social, psychological and practical support and reduce the need for dying people to be admitted to a hospital.
... The concept of death literacy is a relatively recent addition to this movement. Death literacy is "a set of knowledge and skills that make it possible to gain access to understand and act upon end-of-life and death care options" (Noonan, Horsfall, Leonard, & Rosenberg, 2016, p. 32 (Hilbers, Rankin-Smith, Horsfall, & Aoun, 2018), community cemeteries (e.g., G€ arten der Bestattung in Bergisch Gladbach), Shutatsu (end-of-life activities; Tanaka, Takahashi, & Kawashima, 2019), and Death Cafes, death doulas, and FUN-erals (funerals for the living), all making contributions to the positive death movement (Leland, 2018); bereavement care is lacking in the new agenda . ...
The compassionate communities movement challenges the notion that death and dying should be housed within clinical and institutional contexts, and works to normalize conversations about death and dying by promoting death literacy and dialogue in public spaces. Community-based practices and conversations about grief remain marginal in this agenda. We aimed to theorize how grief could be better conceptualized and operationalized within the compassionate communities movement. We develop the concept of Grief Literacy and present vignettes to illustrate a grief literate society. Grief literacy augments the concept of death literacy, thereby further enhancing the potential of the compassionate communities approach.
... This involves improving grief literacy, so that people who are willing to help can get it right in terms of amount, timing, function and structure, raising the need for community grief education and a grief literacy index. While productive relationships are emerging, more research is needed to develop, implement and evaluate a range of useful practice models that connect formal health and social care services with local communities and build upon local helping networks to bolster the evidence of the Compassionate Communities approach to bereavement care [39]. The evidence must be based on an equity-based evidence framework which addresses quality gains that are relevant for palliative care and these include relief of symptom distress, dignity, family support, healthy bereavement, psychological well-being and equity of access to services [3]. ...
The negative consequences of bereavement and the disruption of social relationships put the impact of bereavement squarely into a public health perspective. Adopting and strengthening a Compassionate Communities approach is necessary, not only for end-of-life care for dying people but also for providing bereavement support. Many palliative care services continue to adopt an unhelpful standardised approach in offering bereavement support. So, who provides support to the bereaved? Who needs support and to what extent? Importantly, who is perceived by bereaved people to have offered them support and was it helpful? Based on reported experiences of the bereaved in a national Australian survey, the majority of this support is provided in informal and other community settings by a range of people already involved in the everyday lives of those recently bereaved. A public health approach to bereavement care is needed to support ‘everyday assets’ in the community without over-reach from professional services. Findings provided empirical evidence for building a community’s capacity to provide the type of social and practical support advocated by the Compassionate Communities approach. This body of work, innovative in content, conceptual model and recruitment approach, challenged the existing bereavement support structure and provision and has influenced practice and policy.
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Aims: To determine who provides bereavement support in the community, what sources are perceived to be the most or least helpful and for what reason, and to identify the empirical elements for optimal support in developing any future compassionate communities approach in palliative care. Design: A population-based cross-sectional investigation of bereavement experiences. Sources of support (informal, community and professional) were categorised according to the Public Health Model of Bereavement Support; most helpful reasons were categorised using the Social Provisions Scale, and least helpful were analysed using inductive content analysis. Setting and participants: Bereaved people were recruited from databases of funeral providers in Australia via an anonymous postal survey (2013-2014). Results: In total, 678 bereaved people responded to the survey. The most frequently used sources of support were in the informal category such as family, friends and funeral providers. While the professional category sources were the least used, they had the highest proportions of perceived unhelpfulness whereas the lowest proportions of unhelpfulness were in the informal category. The functional types of helpful support were Attachment, Reliable Alliance, Social Integration and Guidance. The five themes for least helpful support were: Insensitivity, Absence of Anticipated Support, Poor Advice, Lack of Empathy and Systemic Hindrance. Conclusion: A public health approach, as exemplified by compassionate communities policies and practices, should be adopted to support the majority of bereaved people as much of this support is already provided in informal and other community settings by a range of people already involved in the everyday lives of those recently bereaved. This study has provided further support for the need to strengthen the compassionate communities approach, not only for end of life care for dying patients but also along the continuum of bereavement support.
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Background: The new public health palliative care movement calls for a move away from an individualised model of caregiving to a whole of community approach which will increase expectations on community carers. In order to avoid carer isolation, exploitation and potential burnout there is then a very real need to understand environments and relationships which support collective community caregiving. In this research we explored in-home caring networks to understand if and how network centred care supports carers of the dying while developing a whole of community approach. Methods: Over a 6-year period the research team spoke to 301 caregivers, service providers and community members via interviews and focus groups in regional, rural and urban Australia. Results: People are already caring for their dying at home and doing it well provided they are comprehensively supported by networks of care. Being part of a caring network provided people with a sense of achievement and developed their death literacy which flowed into a myriad of other community activities. While caring networks are essential they are not widely supported by service providers. At worst, services are obstructive of peoples stated preferences for place of death and caring and often adopt a paternalistic approach. Place of care, in this case the home, was supportive of maintaining networks and peoples' wellbeing. Conclusions: Operationalising public health approaches to palliative care requires moving to a place-based network centred model of care comprising formal and informal carers. Service systems need re-orienting to place caring networks as central to the caregiving process. This can be achieved by putting systems in place which initiate and maintain such networks and enable service providers to work with informal networks as equal and respectful partners.
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Background: Contemporary end of life care policies propose increasing community capacity by developing sustainable skills, policies, structures, and resources to support members of a community in caring for each other at the end of life. Public health approaches to palliative care provide strategies to bring this about. Practical implementation can however be ineffective, principally due to failures to grasp the systemic nature of public health interventions, or to ensure that programs are managed and owned by community members, not the professionals who may have introduced them. This article outlines a comprehensive community development project that identifies local end of life needs and meets them through the efficient use of community resources. Methods: The project is the product of a three-phase enquiry. The first phase, carried out in a local community, examined carers' experiences of home-based dying, the networks that supported them during care, and broader community networks with the potential to extend care. Data were collected through in-depth research interviews, focus groups and consultation with a community research reference group. Findings were key issues to be targeted by a local community development strategy. In the second phase, these local findings were compared with other practice accounts to identify themes common to many contexts. A public health palliative care framework was then used to produce an evidence-informed community development model for end of life care. The third phase involves implementing and evaluating this model in different Australian contexts. Results: A major theme emerging in phase one of the enquiry was the reluctance of carers to ask for, or even accept, offers of help from family, friends and community networks despite their evident need for support while providing end of life care at home. Others' willingness to provide support was thus hindered by uncertainty about what to offer, and concern about infringing on people's privacy. To develop community capacity for providing end of life care, these social norms need to change. Phase two brought public health strategies to bear on the themes identified in phase one to develop the Healthy End of Life Project (HELP), a strengths-based sustainable community development project. This provides evidence-based and research-informed resources that equip communities to work cooperatively with carers, family, friends and neighbors in support of residents wishing to receive end-of-life care in their home or a community setting. Services may initiate use of the framework, and will share their expertise on health and death matters, but communities are the experts to lead implementation in their local area. The third part of the article outlines current initiatives to implement and evaluate HELP in several Australian contexts. Conclusions: The substantive outcome of this enquiry is the 'Healthy End of Life Project (HELP); offering and providing, asking and accepting help'.
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Background Standards for bereavement care propose that support should be matched to risk and need. However, studies in many countries demonstrate that palliative care services continue to adopt a generic approach in offering support to bereaved families. Objective To identify patterns of bereavement support in palliative care services based upon the experience of bereaved people from a population based survey and in relation to clinical practice guidelines. Design An anonymous postal survey collected information from clients of six funeral providers in four Australian states (2014–15), 6 to 24 months after the death of their family member or friend, with 1,139 responding. Responses from 506 bereaved relatives of people who had terminal illnesses were analysed. Of these, 298 had used palliative care services and 208 had not. Results More people with cancer (64%) had received palliative care in comparison to other illnesses such as heart disease, dementia and organ failure (4–10%). The support for family caregivers before and after their relative’s death was not considered optimal. Only 39.4% of the bereaved reported being specifically asked about their emotional/ psychological distress pre-bereavement, and just half of the bereaved perceived they had enough support from palliative care services. Half of the bereaved had a follow up contact from the service at 3–6 weeks, and a quarter had a follow-up at 6 months. Their qualitative feedback underlined the limited helpfulness of the blanket approach to bereavement support, which was often described as “not personal” or “generic”, or “just standard practice”. Conclusions Timeliness and consistency of relationship is crucial to building rapport and trust in the service’s ability to help at post-bereavement as well as a focus on the specific rather than the generic needs of the bereaved. In light of these limitations, palliative care services might do better investing their efforts principally in assessing and supporting family caregivers during the pre-bereavement period and developing community capacity and referral pathways for bereavement care. Our findings suggest that bereavement support in Australian palliative care services has only a tenuous relationship with guidelines and assessment tools, a conclusion also drawn in studies from other countries, emphasizing the international implications of our study.
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Most people indicate their preference to die at home; however, in the developed world, most die in hospital. Dying at home requires complex factors to be in place in health services and informal networks of care to successfully provide support. This study examines the ways health systems, services, and individual health care professionals influence care at home at the end of life. Three principles guide the reorientation of health services and enable their transition from hindrance to help: re-evaluation of organisational values, recognition of the primacy of caring networks, and realignment of the inherent paternalism in health care provision.
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Abstract Background: Despite evidence that connecting people to relevant wellbeing-related resources brings therapeutic benefit, there is limited understanding, in the context of mental health recovery, of the potential value and contribution of pet ownership to personal support networks for self-management. This study aimed to explore the role of pets in the support and management activities in the personal networks of people with long-term mental health problems. Methods: Semi-structured interviews centred on ‘ego’ network mapping were conducted in two locations (in the North West and in the South of England) with 54 participants with a diagnosis of a long-term mental health problem. Interviews explored the day-to-day experience of living with a mental illness, informed by the notion of illness work undertaken by social network members within personal networks. Narratives were elicited that explored the relationship, value, utility and meaning of pets in the context of the provision of social support and management provided by other network members. Interviews were recorded, then transcribed verbatim before being analysed using a framework analysis. Results: The majority of pets were placed in the central, most valued circle of support within the network diagrams. Pets were implicated in relational work through the provision of secure and intimate relationships not available elsewhere. Pets constituted a valuable source of illness work in managing feelings through distraction from symptoms and upsetting experiences, and provided a form of encouragement for activity. Pets were of enhanced salience where relationships with other network members were limited or difficult. Despite these benefits, pets were unanimously neither considered nor incorporated into individual mental health care plans. Conclusions: Drawing on a conceptual framework built on Corbin and Strauss’s notion of illness ‘work’ and notions of a personal workforce of support undertaken within whole networks of individuals, this study contributes to our understanding of the role of pets in the daily management of long-term mental health problems. Pets should be considered a main rather than a marginal source of support in the management of long-term mental health problems, and this has implications for the planning and delivery of mental health services.
Background: Reducing emergency admissions to hospital has been a cornerstone of healthcare policy. Little evidence exists to show that systematic interventions across a population have achieved this aim. The authors report the impact of a complex intervention over a 44-month period in Frome, Somerset, on unplanned admissions to hospital. Aim: To evaluate a population health complex intervention of an enhanced model of primary care and compassionate communities on population health improvement and reduction of emergency admissions to hospital. Design and setting: A cohort retrospective study of a complex intervention on all emergency admissions in Frome Medical Practice, Somerset, compared with the remainder of Somerset, from April 2013 to December 2017. Method: Patients were identified using broad criteria, including anyone giving cause for concern. Patient-centred goal setting and care planning combined with a compassionate community social approach was implemented broadly across the population of Frome. Results: There was a progressive reduction, by 7.9 cases per quarter (95% confidence interval [CI] = 2.8 to 13.1, P = 0.006), in unplanned hospital admissions across the whole population of Frome during the study period from April 2013 to December 2017, a decrease of 14.0%. At the same time, there was a 28.5% increase in admissions per quarter within Somerset, with a rise in the number of unplanned admissions of 236 per quarter (95% CI = 152 to 320, P<0.001). Conclusion: The complex intervention in Frome was associated with highly significant reductions in unplanned admissions to hospital, with a decrease in healthcare costs across the whole population of Frome.
Background: Community-managed mental health organisations are important vehicles for “place-based” recovery-oriented services in regional areas. However, the community-based sector is not well described in data collections and more research is needed to identify the specific contributions that such services can make to recovery. This situation has become more acute in Australia with the restructure of mental health services under the new National Disabilities Insurance Scheme (NDIS). Aims: The project aimed to understand more about what is effective in the service system; what impacts living in a regional location might have on a person’s lived and service system experience and what people find helpful and supportive in their recovery journeys. Method: A one-year qualitative study utilising photovoice and written narrative with group workshops, individual interviews and a capstone exhibition experience. Results: Research findings were consistent with recovery principles but also revealed elements not commonly emphasised in the recovery literature. Four main themes were distilled: belonging and being connected; survival, resilience and hope; living a contributing life and compassionate service provision. Conclusion: The effectiveness of recovery-oriented service delivery needs to be secured under the individualised funding structure of the new NDIS and expanded for the specific needs of people living in regional communities.
Although the burden of caring is well described, the value of home as a potential place of wellbeing and support for informal caring networks when providing end-of-life care is not well recognised. Interviews and focus groups with 127 primary carers and members of informal care networks revealed their collaborative stories about caring for a dying person at home. Four themes emerged from the data: home as a place of comfort and belonging; places of social connection and collaborative caring; places of connection to nature and the non-human; places of achievement and triumph. When support is available, nurturing carer wellbeing may be best achieved at home.