2012 bringing our dying home
TRANSCRIPT
-
7/31/2019 2012 Bringing Our Dying Home
1/68
1
Creating community at end o lie
Bringing OurDying Home
Assoc Pro Debbie Horsall, Kerrie Noonan
and Assoc Pro Rosemary Leonard
May 2012
-
7/31/2019 2012 Bringing Our Dying Home
2/68
Bringing Our Dying Home
Creating community at end o lie
First published May 2011. Tis edition May 2012.
D. Horsall, R. Leonard, K. Noonan and Cancer Council NSW.
ISBN 978-1-921619-65-6
Authors: Assoc Pro Debbie Horsall, Kerrie Noonan and Assoc Pro Rosemary LeonardEditing and Design: Cancer Council NSW
Printer: SOS Print + Media Group
-
7/31/2019 2012 Bringing Our Dying Home
3/68
-
7/31/2019 2012 Bringing Our Dying Home
4/68
2
Foreword
Not so long ago, nearly everyone died at home surrounded by amily and loved ones.
Somehow, over the last century, hospitals took over as the place to die. When asked nowwhere they want to die, most people say they want to be at home. Te reality is that most
die in hospital. Intrinsically, we all think that a good death means slipping away, passing
over peaceully, not surrounded by ashing lights and hooked up to tubes.
Over the past 20 years, much has been made o giving patients choice and decision-making
around care and treatment. Unortunately, that level o decision making oten doesnt
extend to where they are.
Tis study goes a short way to trying to understand what the benets are o dying at home,
to the individual, to the amily and to their community. Trough this work, and uture
research, we can help people make decisions and choices that they otherwise might not eel
empowered to make.
Gillian Batt
Director
Cancer Inormation and Support Services
Cancer Council NSW
Introduction
In May 2011, the rst edition oBringing Our Dying Homewas launched by acclaimed
social innovator Charles Leadbeater at the Dying or Change orum in Sydney. Tis event
was attended by 70 people, all with an interest in innovative approaches to end o lie and
palliative care in Australia, and provided a wonderul setting or the launch o this report.
Since then, we have published and presented our key ndings both locally and
internationally and have received eedback rom caregivers, palliative care health
proessionals and academics. We are proud o the positive eedback we have received and the
interest in the creative and participatory methods that bring to lie the stories o caring via
photo voice and participatory network mapping. (See Appendix 4 or a list o Publications
and Conerence Papers.)
Tere is no doubt that caring at the end o lie is both challenging and rewarding or individuals
and community members, and this project has brought to lie the many positive and
inspirational stories and experiences about what it takes to care at end o lie. Tis challenges
-
7/31/2019 2012 Bringing Our Dying Home
5/68
the more usual stories about caring available in the research literature and demonstrates the
way knowledge about death and dying is shared and harnessed by the community. It has alsosparked interest rom other research teams internationally, who are looking or methods that
help to demonstrate the community building o Public Health approaches to Palliative Care.
LieCircle certainly knows this they are dedicated to helping Australians live and die well.
Teir programs are reconnecting the threads o community by helping people support each
other through serious illness and at lies end. When this research began in 2008, LieCircle,
then called HOME Hospice, was looking to build an evidence base about their work in
the community. Tey were an integral part o the work contained in this report. Readers
will notice that in this second edition, some reerences to HOME Hospice remain when
the context relates to HOME Hospices role in this research project. When discussing the
ongoing work o the organisation, we use the current name, LieCircle.
Ongoing support rom Cancer Council NSW and in particular rom Gillian Batt, the Director
o the Cancer Inormation and Support Services division, has been invaluable. Cancer Council
NSW is now our Australian Research Council Linkage partner or a 3-year project that extends
the work you read here. Tis partnership has enabled us to connect with service providers,
carers and their communities throughout NSW and the AC.
Yours Sincerely,
Associate Proessor Debbie Horsall
School o Social Sciences and Psychology
University o Western Sydney
Kerrie Noonan
Senior Researcher
School o Social Sciences and Psychology
University o Western Sydney
Associate Proessor Rosemary Leonard
Senior Research Scientist CSIRO &
School o Social Sciences and Psychology
University o Western Sydney
3
-
7/31/2019 2012 Bringing Our Dying Home
6/68
Acknowledgements
Firstly we would like to extend our warmand appreciative thanks to all the participants
in this research. Tey opened their hearts
and oten their homes to tell us about their
experiences and stories o caring. Tis was
not always an easy task or the storytellers, or
or the researchers. alking about intimate,
emotional and important issues takes time
and requires courage. We thank you all or
taking the time and or having the courage to
talk to us. We hope that we have done your
stories justice in this report.
Niki Read was our extremely capable
research assistant or the rst 18 months o
this project. We thank her or her tenacity,
her attention to detail, her humour and her
sheer hard work in getting this project o
the ground. We also appreciated her skill
and warm, inclusive sense o humanity
as she talked with potential participants,
community members, and organisations in
the area. We missed her when she let.
o the mentors, sta and management
involved in HOME Hospice (now called
LieCircle) during the lie o this project, we
thank you or your assistance throughout,
your involvement as participants, and your
eedback. A desire to research and document
the work being done by the then named
HOME Hospice inspired this research; we
hope you are similarly inspired when reading
about the work you have done.
Te research was unded through a
partnership grant with the University o
Western Sydney and Cancer Council NSW.
We were ortunate indeed to have Gillian
Batt as our industry partner rom Cancer
Council NSW as part o our research team.
We appreciated Gillians extensive experience
4
-
7/31/2019 2012 Bringing Our Dying Home
7/68
in the area. She provided expert and valuable
advice, timely eedback and excellent strategic
suggestions, and was always encouraging andpositive about the research.
Te Social Justice and Social Change
research group o the University o Western
Sydney auspiced the project and we are
thankul or the support and guidance o
Dr Peri OShea and Dr Janette Welsby
in the planning, implementation and
administration o the research. I ever we did
not know the answer to a question, they did!
Also, thanks to Bronny Carroll, our
antastic transcriber, and Andy Horsall
or prooreading, editorial comments and
suggestions or uture directions.
Finally, we would like to thank Cancer
Council NSWs Publishing Unit or the
editing and designing o this report.
Reerencing guide
Horsall, D, Noonan, K and Leonard, R
(2012) Bringing Our Dying Home: CreatingCommunity at End o Lie. Research Report,
2nd ed. University o Western Sydney.
ISBN: 978-1-921619-65-6
Te research was unded by the University o
Western Sydney and Cancer Council NSW.
Tis is the second edition o the report, which
was originally published in May 2011. Te
report can also be downloaded rom the
Caring at end o lieresearch website:
http://caringatendoie.wordpress.com/
Warning about images
Te researchers warn Aboriginal and orres Strait
Islander people that this report contains images
o some people who are now deceased. We do
not wish to upset or cause distress to any living
relatives and community members.
5
-
7/31/2019 2012 Bringing Our Dying Home
8/68
6
Contents
Foreword 2Introduction 2
Acknowledgements 4
Bringing Our Dying Home: Te project at a glance 8
Overall ndings 9
Key ndings and research themes 10
Teme 1. It takes a community: Each and every one o you had this little part to play 10
Teme 2. Resisting isolation and staying connected: Enablers o caring networks 11
Teme 3. Te ordinary becomes the extraordinary: Everyone doing a
little bit makes a broad and strong net 11
Teme 4. Its a process o transormation: developing death literacy 11
Note on style 11
Background to Bringing Our Dying Home 12
owards an alternative: Community responses to dying 12
Building social capital 14
Te mentoring program 14
Methodology and methods 15
Objectives o the research 15Our research questions 15
Research design 16
Recruitment and participants 16
Participant Group 1: Primary carers and their support networks who had a relationship
with HOME Hospice 16
Participant Group 2: Individual interviews with community mentors and carers 17
Participant Group 3: Workshop participants 17
Participant Group 4: Primary carers and their support networks who had no relationship
with HOME Hospice 17
Methods and analysis 18
Focus group procedure 19
Interview procedure 19
Ethical considerations 20
Data analysis 20
Findings and discussion 20
Teme 1: It takes a community: Each and every one o you hadthis little part to play 21
Teres a strength in numbers 21You were absolutely crucial: Core and outer networks 24
-
7/31/2019 2012 Bringing Our Dying Home
9/68
7
Teme 2: Resisting isolation and staying connected: Enablers o caring networks 26Its worth making the eort 26
Agency o the dying person 28
Clear and controllable communication 29
Being light-hearted 30
Weve been there beore: Previous experiences 31
Determined to cope without getting help: Barriers to orming care networks 33
Teme 3: Te ordinary becomes the extraordinary: Everyone doing a little
bit makes a broad and strong net 33
What the networks did: Te tasks o caring 34
Lie, in a sense, just continued on: Keeping things normal 37
Teme 4: Its a process o transormation: developing death literacy 38
It was a joy and a privilege: ransorming the literature through alternative stories o care 38
ransormative eects on individuals: developing knowledge and skills 40
Changes in attitudes to death and dying? 42
Rippling out: Developing a communitys capacity to care 43
All these new people: Ive just got to know them 44
Stronger, closer, deeper, warmer 46Changes in amily relationships 47
Outside o amily 47
Negative eects on the relationships 48
Conclusion and uture directions 49
Key ndings 49
Teme 1: It takes a community: Each and every one o you had this little part to play 49
Teme 2: Resisting isolation and staying connected: Enablers o caring networks 49
Teme 3: Te ordinary becomes the extraordinary: Everyone doing a little bit makes
a broad and strong net 49
Teme 4: Its a process o transormation: Developing death literacy 49
Looking orward: Its about the community caring 50
Epilogue 51
Reerences 52
Appendix 1: Focus group schedule 56
Appendix 2: Interview schedule individual carers and mentors 57Appendix 3: Inormation sheets and consent orms examples 58
Appendix 4: Publications and Conerence Papers 64
Notes 65
-
7/31/2019 2012 Bringing Our Dying Home
10/68
8
Overwhelmingly peoples desire is to
experience dying and/or death at home,
suggesting an urgent need to examine
community-based approaches to end-o-lie
care. Tis study does just that as we shit the
attention rom the needs o the terminally
ill person and carer to the wider, inormal
caring community. Tis report documents
the Bringing Our Dying Home: Creating
community at end o lieresearch project, a
two-year qualitative project undertaken by
the Social Justice Social Change Research
Group (UWS) in conjunction with the then
named HOME Hospice (now LieCircle) and
Cancer Council NSW.
Historically, end-o-lie (EOL) research aboutcaring has emphasised burden, stress and
dependency, however caring at EOL also has
the potential to increase social networks and
contribute to social capital and community
capacity. We were interested in the quality
and eect o networks that are established, or
strengthened, as a result o caring or a person
who has chosen to die at home. We wanted to
understand, rom the point o view o carers
and their caring networks, how being involved
in caring or someone can positively impact
amily, riends and the wider community.
Using photo voice and network mapping
in ocus groups (n=9), interviews (n=8) and
workshops (n=2), we collected 94 visual and
oral narratives o caring and support. Te age
range was seven to 90, and groups comprised
two to 17 people. Specically we asked:
How communities come together as
inormal networks o carers
Bringing Our DyingHome: Te project ata glance
Home-based care at end o
lie oers the opportunity to
reconceptualise dying as the
business o individuals, communities
and societies, including, but not
constrained to, the provision o
palliative care.(Rosenberg 2011, p. 27)
-
7/31/2019 2012 Bringing Our Dying Home
11/68
9
What is the orm and nature o these
networks?
What did people do to care?
What are the eects on the inormal
network, or community, in caring or
their dying people at home?
Overall fndings
While most people in Western countries
continue to say that they would preer
to die at home there continues to be a
large discrepancy between this preerence
and actual practice. Most people die in
institutionalised care usually a hospital
resulting in the modern death becoming
cellular, private, curtained, individualised
and obscured (Buchan, Gibson & Ellison
2011, p. 4). Tis type o death can meanthat people die badly in places not o
our choosing, with services that are oten
impersonal, in systems that are unyielding,
struggling to nd meaning in death because
we are cut o rom the relationships which
count most to us (Leadbeater & Garber
2010, p. 18).
Tat most people do not experience dying
and/or death in places o their choosing is an
astonishing act; a act that, collectively, we
are either ignorant o or just silent about. It
is a act that speaks to our ailings as a society
at a time o lie that occurs or each and every
one o us. Clearly research, policy and service
provision in Australia are ailing to meet the
needs and desires o the majority o people.
Te reasons or this ailure are beyond the
scope o this report but our ndings lead usto ask the ollowing questions:
What i we reocused our research, policy
and service provision initiatives at EOL to
a social, community-participation approach
that enabled people to choose where they
wish to experience dying and death, and
then worked to enable that to happen?
What i we provided evidence about
how people already care or each other and
members o their community, and we
made public their knowledge about what
to do and how to do it?
A clear nding in our research was that
people oten thought they were not
allowed to die at home. What i it weregeneral knowledge that you were allowed?
What i we had a national conversation
about EOL and place o death within
the ramework o social justice? It is unjust
that the majority o people want to die at
home, yet this choice is not supported.
It is time that the kinds o death we the
living are prepared to tolerate, imagine or
realise (Buchan, Gibson and Ellison
2011, p. 4) became a topic o public
debate and scrutiny. Te March 2011
edition o Cultural Studies Reviewand
the 2011 HOME Hospice conerence
Live, alk, Dieare initiatives that have
begun this debate in an Australian context.
What i the Home Death Movement (o
which there is undoubtedly a global one),named itsel as such and claimed a place at
the decision-making table?
-
7/31/2019 2012 Bringing Our Dying Home
12/68
10
In the research reported here, we ound that
people can and do care or their dying at
home with the help o inormal networkso community members. And they do it
well. Tis is not to say that it is easy: its
not. However, people overwhelmingly elt
privileged and honoured to be involved
in a caring network at EOL. Participants
successully mobilised and negotiated
complex webs o relationships and engaged
in acts o resistance to the Western, expert-
based approach to EOL care. Te knowledge
and skills they developed as a result o the
experiential, embodied learning about caring
at EOL contributed to the development o
social capital and community capacity or the
people in this study. Peoples relationships,
on the whole, increased and intensied, and
these changes were maintained over time.
Te inormal caring networks and relationships
underwent transormation as a person wassupported to die at home. Tis transormation
occurred as social relations and networks were
mobilised to support and help with caregiving,
and as people developed their death literacy.
However, to ensure that these inormal caring
networks are sustainable and the people
who provide unpaid caring are not exploited
and isolated, inormal carers and networks
need supporting. Carers need permission
and practical hands-on help to gather caring
networks together and to negotiate the type
o help they need. LieCircle (previously
HOME Hospice) already provides community
mentoring that does just this. Some religious,
spiritual and intentional communities also seem
to play this role. Organisations and services that
provide paid care at EOL also need to take on
a more active role in promoting death literacy
and acilitating and supporting inormal caringnetworks rom a community development or
health promotion perspective.
Tis research contributes signicantly to the
growing body o research and practice that
reocuses EOL care rom an individualised,private and medicalised approach to a
communal and social approach, emphasising
relationships and community participation
and, strengthening community capacity (Street,
2007; Stijernsward, 2005; Kumar, 2005;
Rumbold, 2009; Rosenberg & Yates, 2010,
2007). Emerging rom this research is an in-
depth understanding o the role and nature o
inormal care networks in EOL care at home.
Te challenge now, as Leadbeater and Garber
state, is to create social networks that:
Help people to achieve what is most
important to them at the end o lie. Tat will
require the creation o a network o health
and social supports so that people can die at
and closer to home, with the support o their
amily and riends, as well as proessionals.
(2010, p.18)
Key ndings andresearch themes
Theme 1.It takes a community:Each and every one o you had
this little part to play(FG 8)
Without exception, participants in this study
believed that it takes a community o people
working together to enable someone to
experience dying and death at home. Tese
communities, or caring networks, comprise
an extraordinary set o complex relationships
that are continuously negotiated during the
process o caring. Both primary carers and
members o the network conceptualised
these networks as comprising core and outernetworks that played dierent but vital and
complementary support roles.
-
7/31/2019 2012 Bringing Our Dying Home
13/68
11
Theme 2. Resisting isolation and
staying connected: Enablers o
caring networksPeople resisted the potential isolation and
social exclusion oten associated with caring
by working hard to stay connected with each
other. Te people doing this work included
the carer, members o the caring network
and the dying person themselves. Central to
staying connected was clear and controllable
communication, oten using technology
to good eect. In all but one o the ocus
groups there were people who had previous
experience o being with a dying person and
they were motivated to use their knowledge
and experience to help support others.
Additionally we ound that humour and
remaining light-hearted enabled people to
stay engaged in the process o caring.
Theme 3. The ordinary becomesthe extraordinary: Everyone doing
a little bit makes a broad and
strong net (FG 3)
Here we ound an overwhelming diversity o
caring tasks people engaged in. It was clear
that providing what was actually needed, not
what people assumed was needed, was the key
to successul support. We also ound that the
main motivation or the tasks people engaged
in was to keep lie as normal as possible or
the primary carer and immediate amily.
Theme 4. Its a process o
transormation: Developing death
literacy (FG 3)
Being part o a caring network was, without
exception, transormational at individual and
collective levels. People developed knowledgeand skills about caring and about the process
o dying that empowered them and that
many then took into other networks and
communities. We ound evidence that social
capital was increased as a result o caring
and that the communitys capacity to care
improved. We ound, overall, that peoples
and communities death literacy developed as
a result o their experiences.
In reality these themes are not as discrete as
we have made them here, with many overlaps
and interconnections.
Note on style
Te style o writing in this research reportmay dier rom some readers expectations.
Tis is intentional on our part. In our writing
up o the research we aimed or accessibility
in our writing style. In the pursuit o
democracy and the sharing o knowledge we
believe that the results o research should be
as accessible to as many people as possible.
You will see that excerpts rom the transcribed
data and photographs are woven throughout,
as we wanted to keep the voices o the
participants central. In order to protect
peoples privacy, all data excerpts are identied
by a number assigned by us (e.g. FG 8 or
M 3). All names have been changed. We have
not edited or changed peoples actual words.
You may notice that some pictures are captioned
and others are not. Captioned photographs weretitled by research participants. See page 20 or
more inormation.
-
7/31/2019 2012 Bringing Our Dying Home
14/68
12
Background to
BringingOur Dying Home
In Australia about 140,000 people die each
year and 75 per cent o these deaths are
expected (Palliative Care Australia, 2004).
Most people, thereore, need some orm
o end-o-lie (EOL) care, with up to 90
per cent o people with a terminal illness
spending most o the nal year o lie at home
(PCA, 2004). Inormal caregivers are central
and essential to this EOL care (PCA, 2010;
Tomas et al, 2010). Te average length o
community-based palliative care is 119 days,
o which 117 days o care is provided by
amily, riends, neighbours and community
members (Rumbold, 2009).
About 2.3 million people in Australia providelong-term care to loved ones. It is estimated
that unpaid carers contribute $20 billion to the
Australian economy (Palliative Care Australia,
2004). In 2004 Palliative Care Australia
released a report titled Te Hardest Ting We
Have Ever Done: Te Social Impact o Caring
or erminally Ill People in Australia. It noted
that although 70 per cent o people die in
institutions, up to 90 per cent o people with
a terminal illness spend most o the nal
year o their lie at home (Rumbold, 2010).
Given this, the report outlined many issues
or carers, such as adverse physical, social
and psychological eects o caring such as
stress, sleep disruption, atigue, amily and
social isolation. Tis decit or problem-
based approach to research dominates the
research landscape. Te ew studies that
have described the positive aspects o caringor a loved one with a terminal illness have
noted an increase in personal satisaction and
commitment, and caring as an expression
o love and increased intimacy (Aranda &
Hayman-White, 2001; PCA, 2004).
Despite the overwhelmingly limited view
o caring in the literature (see Foreman,
Hunt, Luke & Roder, 2006; Hudson, 2003;
McWhinney, Bass & Orr, 2005; Palliative
Care Australia, 2005; ang, 2003; Zapart,
Kenny, Hall, Servis & Wiley, 2007) and the
dominant experience o the terminally ill
dying in institutional care, the vast majority
o people continue to express a desire to live
at home and die at home when they have
a terminal illness (Hudson, 2003). Despite
this, the majority o people in Australia die
in institutions (abour et al, 2007). Te
most common reasons people are admitted
to hospital are carer breakdown and
symptom control. Te concept o a good
death appears to have been superseded
by the concept o a managed death thatrequires proessional support and knowledge
(Kellehear, 2005) and takes place in a hospital
or, more rarely, hospice.
Towards an alternative:
Community responses to dying
wo distinct approaches to community
responses to EOL are: 1) community-based
programs, and 2) community development
programs (Kumar, 2005). Community
care or community-based programs reer to
medical and health services provided to people
within their homes or community clinics as
compared to the hospital setting. Community
development approaches depend on community
participation, which reers to the individuals,
networks o people, communities o riends
and neighbours who, together, participate inthe end-o-lie care o a ellow citizen with a
terminal illness. Presently the medical model
-
7/31/2019 2012 Bringing Our Dying Home
15/68
13
and the health service approach to palliative care
dominate the community response to EOL care.
Tere is, as a result, an abundance o researchdescribing both carer and patient risk actors
and the optimal kind o services required to
support caregivers and people with a terminal
illness they care or at home (see Foreman,
Hunt, Luke, & Roder, 2006; Hudson, 2003;
McWhinney, Bass & Orr, 2005; Palliative Care
Australia, 2004; ang, 2003; Zapart, Kenny,
Hall, Servis & Wiley, 2007).
Te interaction between the community
experience o death and dying, attitudes
towards death and an aging population has
sparked discussion about the sustainability
o the current top heavy models o EOL
care. Tere is growing acknowledgement
about the lack o grassroots approaches
to EOL care, raising concerns about the
sustainability o current models o care and
the proessionalisation o carer and patientsupport. Additionally, a growing number
o recent reviews o home death research
have noted that uture policies and clinical
practice need to ocus on empowering
amily members and providing community
education about EOL care (Gomes &
Higginson, 2008; ang, 2003).
Community development has been dened
as any set o initiatives that develops the
social resources o the community to enhance
quality o lie (Kellehear, 2005). Community
development models compared to the medical
and health services models have a distinctly
dierent approach to end-o lie care.
Community approaches to end o lie care
are not newservices. Tey are community
members acting towards each other in new
and constructive ways to improve their owncapacity or end-o-lie care. Any proessional
rationalisation o these changes into simpler
orms o direct services provision is a
regressive and important threat to community
empowerment (Kellehear, 2005 p. 100).
In the Australian context, we are not aware o
any documented programs with a community
development approach that ocus on EOL
care to enable people to die at home. Tedominant model o volunteering in palliative
care is the co-ordinated team o palliative care
volunteers who provide a range o services
or the terminally ill and their carers. Tey
provide services such as transport, respite and
emotional support, and while these services
certainly support carers, they exist to support
the provision o ormal palliative care services.
In contrast, community development
approaches invite active participation and
exist to enable ordinary people to work
towards the common goal o enabling their
loved ones to remain at home.
It is through this working together that
greater understanding is built and the
individuals within a community are drawn
together. One o the goals o the community
development approach is to help individualsand communities develop sustainable ways to
care or their dying by building social capital.
The love
shared
between
mother and
son
-
7/31/2019 2012 Bringing Our Dying Home
16/68
14
Building social capital
Because the term social capital has been
used widely and rather loosely, we need toexplain how it is dened and used in this
research. Following Putnam (1993), social
capital is oten dened as those eatures o
social organisation, such as trust, norms and
networks, that can improve the efciency o
society by acilitating coordinated actions.
However, other theorists, including Coleman
(1988) and Putnam (2000), see social capital as
a resource (oten the primary resource) that is
open to all groups and communities. Certainly,
there is evidence that social capital is capable
o producing a variety o positive outcomes
beyond economic advantage, such as improved
health and wellbeing (Halpern, 2005).
While many studies o social capital take a
macro or economic development view where
the emphasis is on the unctioning o whole
societies (e.g. Putnam, 2000; Woolcott
& Narayan, 2001), the micro position aspresented by Lin, Cook and Burt (2001),
ocuses on specic networks and the benets
that accrue to the people within them.
Whereas the macro and developmental
approaches take a normative position thatsocial capital is a social good, and oten use
methods involving attitudinal surveys, in the
micro approach the outcomes are a matter o
empirical investigation and attitudinal data
is usually rejected as too subjective (Adam &
Roncevic, 2003).
Because the present research aims to identiy
the changes in the size, strength and nature
o networks o people involved in caring
or a terminally ill person, it adopts the
micro position. We examine whether caring
networks expand or increase in density and
whether they are perceived to give benets
to the members. However, attitudes are
not excluded. Human relationships are not
purely instrumental and concepts such as
trust, norms and shared values may underpin
social capital networks. Rather than ignoringthese key concepts, this research encourages
participants to talk about their personal
eelings and attitudes arising rom their
experiences within the network.
The Mentoring ProgramTe original HOME Hospice Mentoring
Program is an example o a community
development approach to EOL care in the
Australian context. Te program, now run
by LieCircle, has been in operation or over
30 years or carers who want to care or a
terminally ill person at home. Te HOME
Hospice model is about education and
learning, building community, developing
and strengthening the bonds between people
such as amily, riends and neighbours
[and] is about building the capacity o thecommunity to care (HOME Hospice,
2008). Mentors, once invited by a carer, act
Dianne
wanted a
gravestone
with hands
in prayer so
they gave
her photos to
choose rom
-
7/31/2019 2012 Bringing Our Dying Home
17/68
15
as a guide and support person. Tis approach
generates social capital through community-
building as the mentor assists the carer inmobilising their personal community. Te
mentor helps the carer to organise this
network o riends, amily and neighbours,
as well as providing education and a context
or this personal community to be involved
in the care o a person dying at home.
Te programs ocus is thereore on the
inormal volunteers that exist, waiting to be
mobilised, in the carers personal community.
On average these personal communities
comprise 14 people and can be as large as 35
people (HOME Hospice, 2008).
At the time o the research, HOME Hospice
was partnered with Cancer Council NSW.
As LieCircle, this partnership continues. It
has a clearly dened program o support or
carers looking ater someone with a terminal
illness that complements other essential
services being used by the carer and their
loved one, including volunteer services. As a
community development program, HOME
Hospice embraces the work o Proessor Allan
Kellehear (2007), who acknowledges that the
establishment o networks and development
o trusting and caring relations are importantgoals o community development programs
at EOL.
HOME Hospice aims to generate social
capital through community-building and
mobilising the carers personal community.Tis community capacity-building approach
to EOL care is a unique model within
the Australian context and served as the
initial ocus or this study, which aimed to
understand how a person dying at home can
strengthen, build or transorm social capital
within the local community. In this research
our understanding was developed using a
social network analysis approach (Carpentier
& Ducharme, 2007), which is a relatively new
eld o research in the literature on caring.
Methodology andmethodsObjectives o the research o understand how being involved in
caring or someone dying at home impacts
on amily, riends and the wider community.
o collect narratives o caring networks
regarding the quality and eect o social
networks that are established, or strengthened,
as a result o a person dying at home.
o contribute to knowledge about a
development approach to EOL care.
Our research questions
How do relationships and social networks
change as a result o being involved in
caring or someone in their home?
What is the nature o these relationships?
How does being involved in a caringnetwork aect peoples attitudes towards
dying at home?
In July 2011, HOME Hospice and
the organisation Lie Goes On
merged to become LieCircle. In this
edition o Bringing Our Dying Home,
we mainly reer to the organisationas HOME Hospice as this was its
name at the time o the research.
In current contexts, we reer to the
organisation as LieCircle.
community
-
7/31/2019 2012 Bringing Our Dying Home
18/68
16
Research design
o answer these questions we used a
creative qualitative approach employingthe techniques o photo voice and network
mapping, combined with group and
individual interviewing. Te research was
designed to be as inclusive as possible.
We held the view that caring or someone
at the end o their lie, either as a primary
carer or a member o the caring network,
is an emotionally charged and complex
experience. As such we used methods that
enabled the research participants to choose
their level o participation when speaking o
their experiences. As researchers we needed to
be particularly sensitive when asking people
to talk about emotional issues that could
leave them eeling vulnerable and exposed.
Methods needed to be employed that could
enable participants to remain in control, as
much as possible, and to hopeully ourish asa result o the researching process (see Horsall
& itchen, 2010).
Creative, qualitative research methods are
increasingly being employed in such situations
(Horsall & Welsby, 2007; Davidson, 2004)
to provide conversational spaces or people
to speak i and how they want about deeply
elt issues, enabling researchers to understand
what matters and is important to participants,
and why. Creative methods can also enable
people to notice what has become amiliar and
everyday, to get beneath the surace o things,
and articulate the amiliar (Halen-Faber &
Diamond, 2002). Tis is important as social
relations are oten invisible, not talked about,
or are seen as an unremarkable part o peoples
everyday lives. Te methods o photo voice
and participatory network mapping enabledus to careully and sensitively document these
subjective experiences in this research.
Recruitment and participants
Four types o participants took part in
this study. Firstly, primary carers and theirsupport networks who had a relationship with
HOME Hospice via a community mentor
(n= 48); two carers opted to be interviewed
without their networks; HOME Hospice
mentors (n=6) and primary carers and their
networks who had no relationship with
HOME Hospice (n=29). Primary carers
could be currently caring or someone at
EOL at home, or have previously cared or
them. In total 94 people participated with
ages ranging rom seven to 90, representing
17 caring networks. Te number o people
attending the ocus groups ranged rom
two to 17. Recruitment took place through
three recruitment strategies: via HOME
Hospice and the mentors; through two
research workshops conducted with carers
and mentors (n= 11), which was both a
recruitment and sampling strategy, andthrough local newspapers.
Participant Group 1: Primary
carers and their support networks
who had a relationship with
HOME Hospice
Recruitment took place through the HOME
Hospice network, via advertising in the
newsletter and website and people opting
in to the project as part o the HOME
Hospice general inormation to carers
package. In order to opt in, people contacted
HOME Hospice about the research project.
I, on this contact, they were prepared to be
involved in the research, their permission
was sought to orward their contact details
to the researcher(s). Opting in was entirely
voluntary and without coercion. Participantsin this group were rom the Greater Sydney
region only. Tis recruitment strategy
-
7/31/2019 2012 Bringing Our Dying Home
19/68
-
7/31/2019 2012 Bringing Our Dying Home
20/68
18
Methods and analysis
Participants were given cameras two weeks
beore ocus group meetings and asked to
record the signicant care and support
activities they engaged in. Te visual data
(photos) was then discussed and analysed by
participants in a series o in-depth interviews
or ocus groups. Te ocus groups and
interviews also included a network mapping
activity in which participants were asked to
draw maps o relationships pre and post-care,
indicating via coloured textas the strength
and intensity o relationships. Tese maps
were initially analysed by participants in theinterviews/ocus groups. Te research team
conducted a thematic analysis o the recorded
data. Tis involved a dual approach: enabling
themes to emerge and purposively looking or
answers to our questions.
Participatory network mapping is a visual
activity that literally asks the participants to
map their networks and record changes to the
relationships pre and post-caring. Making the
map as a collective exercise is dierent rom
the procedure usually employed by network
theorists (Knox, Savage & Harvey, 2006),
which utilises individual questionnaires in
which participants list names and identiy
relationship strength through a Likert scale
or similar method, and the inormation iscollated and analysed by the researchers with
no participant input. Network mapping has
-
7/31/2019 2012 Bringing Our Dying Home
21/68
19
not been used in the context o EOL caring.
Nevertheless, the advantage o the group
approach to network mapping in this research
was that participants saw the results and gaveinterpretive eedback about the nature o the
networks and any changes they saw occurring
in size, density and strength o relationship.
Hence the participants provided a rst level
o analysis o the maps during the ocus
groups and interviews.
Focus group procedure
Te ocus groups and interviews oten took
place in peoples homes, usually those o the
primary carers, around a table and usually
with ood. Tey lasted between two to ve
hours and were tape-recorded with peoples
permission. As a research team we were
continuously deeply moved and amazed that
people opened their homes and their hearts to
us during this process. Te conversations were
oten lled with equal measure o laughterand tears as people spoke about some o the
most intimate moments o their lives.
Te ocus groups/interviews began with
people looking at the photos that had been
taken. Participants were then asked to
select one or two photos that particularly
stood out or them, and to give the photo/s
a title. Te discussion began with people
explaining their photos and the title (or
caption) they had given them. Tis then
led to in-depth discussion o signicant
caring activities and the role o the caring
networks (see appendix 1 or schedule o
questions). Te second activity was network
mapping in which two large pieces o
butchers paper were used to draw maps o
networks and relationships pre- and post-
caring. Tis mapping was acilitated bydrawing two network maps on butchers
paper: one representing the network beore
caring, the other ater caring. People wrote
their names (or had their names written)
on the paper, then dierent coloured pens
were used to connect people together: redor a strong connection, blue or medium
and yellow or light. We were worried at the
outset that people might eel conronted
with having to describe a relationship as
yellow, or that dierentiating between
the types o relationships might be difcult.
However, this was not so (apart rom one
o our youngest participants who made all
her lines red). People got it quickly, and
this activity was usually one o high energy,
much talking and laughter and discussion.
When complete, the researcher held up
the two maps and asked people what they
noticed: how were they dierent and what
did this mean to them? Tis activity was
usually very quick and chaotic as people
covered the pieces o butchers paper. While
in most cases participants drew the maps,
the researchers drew the maps i requested ori people were hesitant.
Interview procedure
Interviews were semi-structured, and lasted or
about one hour in the home o the participant.
We asked mentors to describe their experiences
o caring and o mentoring. One mentor chose
to respond to us in writing via email. We
also interviewed two carers (one current, one
past) about their experiences o caring. Both
carers had initially responded to participating
in the research project and requested
individual interviews rather than ocus groups.
All interviews were audio recorded with
participants permission. In the interviews the
photo voice method was not used, but people
were asked to draw network maps. I they
did not wish to do this, they were asked toorally describe changes in the networks. (See
Appendix 2 or interview schedule).
-
7/31/2019 2012 Bringing Our Dying Home
22/68
20
Ethical
considerationsTere were several important ethical
considerations in this project. First, it was
important that participants understood
the project rationale and what the research
team intended to do with the photographs
and other inormation collected. Second,
it was important to get peoples consent
to be involved. All participants signed an
inormation sheet/consent orm at the
beginning o ocus groups/interviews or
workshops that provided details about the
project, the use o photography and what
would be done with data collected. (See
Appendix 3 or samples o inormation sheets
and consent orms). For those participants
who were under 18 they and a parent or
guardian signed on their behal. When
looking through photographs, people werealso asked to remove any that they did not
want to be used urther in research. Tese
were destroyed. All the photographs in this
report and in other publications are used with
the permission o participants. Te project
received UWS ethics clearance prior to
commencement.
Data analysisTe rst level o analysis took place in the
ocus groups/interviews in which participants
were asked to give meaning to their
photographs and the network maps. Tis was
in order to gain the stories o participants and
to understand what was important to them,
in terms o caring, the generation o social
capital and the development o communitiesat this time.
With participants consent, interviews were
audio recorded and later transcribed. Te
research team then conducted a concurrent,two-pronged thematic analysis. We analysed
the data to see what emerged: what were
the key ideas, concepts and themes that
people spoke about? What did they think
was important? What were they were telling
us? What was the overall story? Tis 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 o the current theory and
literature, and what was said that we did not
expect? Tis combined process was lengthy
due to the in-depth nature o the data.
Findings anddiscussion
Four themes emerged rom the verbal and
visual data: It takes a community, Resisting
isolation and staying connected, Te ordinary
becomes the extraordinary, and Its a process
o transormation. Tese are discussed in
the ollowing pages along with a number o
sub-themes. Te themes are illustrated with
data quotes and photos rom participants.
Te photos with captions are ones chosen by
participants during the ocus groups. Tose
without captions have been chosen by us as
representative o a theme, or point, we are
showing. Te themes demonstrate a rich and
complex description o both the everyday
tasks o caring and how caregivers manage
the inormal and ormal networks in order
to continue to care at home. All o this has acumulative eect in which caring networks
are transormed through relationships,
-
7/31/2019 2012 Bringing Our Dying Home
23/68
21
knowledge sharing and the eeling that people
are supporting each other in something
extraordinary.
Theme 1: It takes a community:
Each and every one o you had
this little part to play(FG 8)
Te terms community or networks o
carers/support networks can run the risk
o being so broad as to become bland and
meaningless (Kellehear, 2005). Tese terms,
while debated in the academic literature, had
meaning or participants who were clear and
articulate about what a network/community
was and who was included. Tey were also
very clear about its importance in the context
o caring: its central to everything that weve
been doing(FG 7). Here we spend some time
describing what is meant by care networksrom the perspectives o the people we spoke
to. Unsurprisingly, perhaps, this description
comprised: amily, riends, work colleagues,
neighbours, community and service groups,
and proessionals. What did surprise us was the
inclusion o pets, the importance o global and
virtual networks, and the seemingly complex
nature o relationships that people mobilised
and negotiated.
Theres a strength innumbers (FG 2)Family members such as siblings, spouses,
children and parents were central to all o the
networks we spoke to, with immediate amily
attending ocus groups: there was my sister,
Lesley, me, my kids ... they used to come over
and try and spend time with Nan (FG 4).
For one group the immediate amilywas
the support network: the network o care and
support was the amily (FG 6), and or another
caring brought the immediate and extended
amily closer together:
I think it was a coming together. A
coming together o the amily not just
the immediate amily but the extended
amily aunts, uncles ... whatever our
dierences may have been, during
this time we all came together and didwhatever we could not only or each
other, or Mum and or Dad. (FG 4)
Every
Wednesday
So community can come rom
riends, amily, neighbours, but it
can also come rom people you
dont know very well ... and its
dierent or every amily and Im yetto experience anyone who doesnt
have anybody. (M 3)
-
7/31/2019 2012 Bringing Our Dying Home
24/68
22
Friends were dierentiated as either riends
o the primary carer: my riends didnt really
know Mum very well but they all came and
did a chore to help me (M3), riends o the
dying person: she obviously had lots o people
around her who loved her very much and who
were willing to use that window o opportunity
that they had to spend time with her and to
do things or her because this is where she
wanted to be (FG 9), or riends o amily,
particularly school riends o the children
o the primary carer.
Work colleagues were central to the care
network: it would have been very hard i both
eds and my work (places) were not as good
as they were (FG 2), and were oten relied
upon by the carer who needed to trust: that
they would rise to the occasion and do that and
o course they did and its just wondrous and
so good (FG 7).Work colleagues were also
dierentiated between those o the primary
carer and the dying person. Tis is well
illustrated in the ollowing quote:
Interestingly, a close review o the data showsthat neighbours were not talked about a great
deal. Perhaps this is because being part o a
caring network at such an intimate time o
lie means they were perceived more as riends
rather than neighbours? Neighbours were
mentioned as people who: might have popped
in and said, Gday (FG 4), providing minimal
care and contact, through to neighbours: who
lived two doors down, would walk down the
street every morning and pick up the Daily and
put it in their letterbox or them (FG 7).
Community organisations such as churches
or spiritual groups were able to mobilise and
organise support or the carers amilies: Beryl
and her (church) group we came home one
day and there were big containers o pumpkin
soup that these young teenagers had made (FG
2). People spoke o their church sending outemail alerts or prayer, or at weekly services
providing the congregation with updates and
reports regarding what the amily needed:
in the church group there was a lovely girl who
used to come every Friday, and there was an
older priest there who gave her permission to
bring communion (M4). Service clubs played
a similar role: so twice a week the service clubs
would look ater him and send someone to take
him out or a couple o hours so that was good,
and I did use the community care volunteers
to ring him every morning at 8 oclock whether
I had to laugh at the two dierent reactions rom the workplace. (People rom)
my work went out and bought masses o rozen ood, sot drink, wine, un stu
to eat like chocolates and things that they thought the kids would like. They also
bought meals that they thought the kids could cook lots o pasta and pasta
sauces. They arrived on the doorstep which is that photo o ... our receptionist
with all our rozen ood. Teds oce arrived with a $700 bottle o Grange and abunch o fowers, which was also lovely but it was a dierent reaction. (FG 2)
-
7/31/2019 2012 Bringing Our Dying Home
25/68
23
I was there or not so it was a routine (M 3).
For one ocus group the local shopkeepers
also played an important role in the caring
network: there are particular shopkeepers or the
aged in that area who actually look ater them.
Who really do (FG 7).
While we did not specically ask about
proessional support rom palliative care
teams or the health proession more generally,
in two o the nine ocus groups healthproessionals were present: Im one o the
palliative care nurses (FG 9), illustrating their
central role in the support network as ar as
the carer was concerned. Te proessional
support rom GPs who oten: came to the
house every day (M 1),was seen by one carer
as someone: who was going to give me a
hand like an insurance policy or something
(FG 8). Palliative care and community nurses
in particular received special mention:
I remember the nurses coming to our
home to help my mother and they were
antastic. They got involved with the
amily nothing was too much. They
were so helpul to my mother my
mother was 48 when my ather passed
away. It was a very hard time or her,
nancially as well, What are we goingto do. Three kids and all the rest
o it but the nurses said, Look, well
take care o this, well help you with
that. They just helped her in whatever
emotional way they could as well as in
other ways. Nothing was too much or
them and i they had to stay longer they
would. (FG 5)
Possibly there was a great deal more to be
said about the helpulness o proessional
support, but not much more was said. Tis
is probably because this type o support wasnot within the scope o the study and we did
not ask direct questions about proessional
support. However, it can be seen rom the
above quotes that this level o support and
care was vital in providing a saety net or the
carers, a sense that there were people with
specialised, practical skills who were available
to help as needed: well I guess just knowing
that Mum had pain relie and that we had some
proessional help (FG 9).
While pets were not a universal theme across
all groups, they were spoken about at three
ocus groups as central to the caring o the
dying person, and were seen as vital or the
amily and close riends who visited the
house. In three o the groups animals were
present throughout the ocus group. Indeed
or one o the groups, the amily dog couldbe heard contributing at poignant moments.
When pets were spoken o it was with such
LEFT: Walking
the dog and
talking
RIGHT: Lie
goes on or
the rest o the
amily
-
7/31/2019 2012 Bringing Our Dying Home
26/68
24
intensity and regularity that we have included
them here as part o the caring network. Tey
were seen as good listeners, allowing peoplewho were caring to connect, or grieve, or just
be, perhaps providing much needed space
rom the intensity o the caring relationships.
There was always the sharing o the
pets and the discussion o the pets. It
was always a way to connect with you
and connect with the kids. When other
people would come in the pet would be
shown to the other person and it sort o
brought people together. It was such an
emotionally charged time and we were
all constantly holding on to our tears
and having the pets was a nice thing
breaks the ice cushions the blow a
little bit. (FG 1)
Pets also provided care and comort to the
dying person as well as members o the amily
and caring network: Te cat used to sleep with
ed up in the bedroom when ed would lay
down during the day (FG 2).
You were absolutely crucial (FG 8):
Core and outer networks
What was interesting to us as we readthe data was peoples clear dierentiation
between what we now call the core and
outer networks. Both the carers and the
people comprising the care network made
this distinction. Te ability to see and be
seen as belonging to a dierent part o thenetwork and what this entails, demonstrated
the complexity o the networks, how they
comprise themselves, how they act and how
they are used by the carer/s. Te core and the
outer networks could not unction without
each other, demonstrating a sophisticated set
o relationships. Below a member o a care
network describes the nature and roles o the
core and outer networks:
I thought that you were the core
team, the inner, the absolutely-there
ones and your dedication, love,
determination, practical pair doing
the hard work. Then theres the next
layer who are encouraging, arming,
being a sounding-board, doing some
o the work, providing ood, refecting,
driving, shopping, that kind o thing.Then there are these people who can
be strangers ... that come in [with] the
Diagram showing the various layers o
support. Drawn by participant during a
ocus group
Sometimes like that cat, having an
animal (like our dog) ... you can goout and have time with that animal,
pat it or grieve or talk to it, whatever,
what youre eeling and eel like
youre not being questioned or
thinking the way you do. Theres no
speaking back, it is just there to let
out what youre thinking. (FG 1)
-
7/31/2019 2012 Bringing Our Dying Home
27/68
25
medical inormation and assessment,
the practical equipment and know-
how and the respite i the second layer
are not available or are tired. Theycan be called on. And the spiritual
care and inspiration. Maybe there are
other circles: these people hold all that
and these people hold them and then
theres the person in the middle being
held. (FG 8)
Te core group was seen as: amazing(FG
2), and it was generally agreed that: having
someone pass away at home would be a lot
harder without that core group around you
(FG 2). However, both the core and outer
networks were vital, providing important
but dierent types o emotional and physical
support. Te carer in particular used the core
and outer networks dierently:
Yes, well I wanted to keep a public
ace. I wanted to keep like, Im doingOK. Then thered be other people, like
maybe Shelia and Carol, who Im not
doing OK. Then when Jenny would
come it would be, Now I can breathe.
Now I can step back. Now I can go andhave that time to recharge. (FG 9)
Core members were usually immediate
amily daughters, spouses, children o the
dying person, and/or long-term riends. Te
network members oten consciously decided
what level o support they could give, and
where they then tted within the network, as
shown below:
Yes, I decided that I would be a
sounding board or Deb. Any time
she rang, wed talk so I tried to be in
contact and talk but I did eel conficted
about not doing some o the physical
caring and I knew that that was needed
... it elt like being a second tier
support role to play. (FG 8)
Te core and outer networks then were
not haphazard groupings o people; they
were deliberate and conscious both in how
they comprised themselves and how they
were used.
When the emotional need or us got
greater, we stopped depending on
our peripheral social circle as much
as we probably didnt want to make
ourselves as vulnerable. (FG 6)
As one person youd never be
able to get through singly. I would
be in the corner crying and that
would have been the end o it but
with all the support that I got so
its important to know this and thattheres a network out there. (FG 5).
-
7/31/2019 2012 Bringing Our Dying Home
28/68
26
We were interested in how participants
dened their own caring networks based on
their actual experiences o being part o one.
It became clear to us that participants had a
sophisticated understanding o the complex
web o relationships that comprises a caring
network, and that they were able to mobilise,
negotiate and maintain many o these
relationships at an emotionally and physically
charged time in their lives.
Theme 2: Resisting isolation and
staying connected: Enablers ocaring networks
I think thats beautiul because its a
photo that says were not keeping her
to ourselves. Were not isolating were
sharing. Were bringing in riends,
were having a moment. This is a
celebration o the lie that is and that is
going to be. (FG 9).
Much o the literature on caring talks
about the potential or social isolation and
disconnection, especially or the primarycarer (PCA, 2004; Hudson, 2003). People
in this research were aware that isolation
could be damaging or themselves, or their
amily members and riends and the dying
person: when people go into palliative care in
the home in the last months it must be very,
very tough on the ones that lose outside contact
because then theyve only got themselves to think
o and their pain and loss o leaving the amily
(FG 4). Tey were equally clear that no-one
could do this particular work o caring by
themselves, that the network was crucial to
enabling the person to die at home: I didnt
want to have this group without acknowledging
that I really relied on you. Tere were things
that all o you did and all o you gave and was
just crucial in that process o [him] dying the
way he wanted to die (FG 8); and enabling
the primary carer/s to keep caring: whenyoure it you just get more and more exhausted
and youve just got to keep giving when theres
nothing more to give (FG 3). Te previous
section clearly showed that people in this
study, on the whole, resisted being isolated, or
trying to care alone. Instead they were active
participants in a complex web o relationships
that, in our words, comprised a caring
network.
So how did these caring networks come
to exist? Did they just happen, or was
there work involved? I so, who did the
work? What enabled caring networks to be
connected?
Its worth making the eort
People spoke abouttheir desire to keepconnected either or themselves as carers,
or or the dying person or both. A strong
Theres a strength in numbers
and knowing that youve got good
people around you who dont care
what you say, dont care what you
look like, dont care how things are,
but will always be there or you and
not just say theyll be there or you.
They do things sometimes without
you even noticing and dont expectto be appreciated. (FG 2)
-
7/31/2019 2012 Bringing Our Dying Home
29/68
27
theme in interviews and ocus groups was the
belie that community and social connections
were vital to peoples wellbeing, and thatthey are desirable or the dying person and
the carers. Te dialogue below illustrates that
connections oten needed to be worked at:
Remaining connected was an active task thattook: hours and hours o phone calls(FG 7)
rom members o the amily and was built
into the dying persons care plan. In the above
example it was important or this amily
that the person being cared or continuedto be an active and present member o
their community or as long as possible:
taking Mum to places taking her because she
couldnt get there hersel (FG 9). On occasion,
physical changes to the house enabled this to
continue: this ramp helped Deanne get out and
about(FG 4). Te above quote also shows
how inormal caring networks can make
strategic use o services, linking inormal
and ormal caring networks.When getting
out and about was no longer possible due
to increasing railty (physical or emotional),
then the amily and/or members o the caring
network took the community into the home.
In the example directly below, people rom
the caring network came into the home to
support the carer, with a ow-on positive
eect or the person being cared or.
I called it Joy or a couple o reasons.
One was that a group o us school
mum riends had come ... because she
[carer] couldnt come and have coee.
We had a routine Friday or whatever
day so we had come and I did some
scone making lessons which was
hilarious because I cant cook anyway.
So that was part o it and the other part
was Clares (dying person) response to
Sara: One o our tasks has been
to maintain connections with the
outside world ... which didnt
happen very oten i we didnt
provide that opportunity or provokethat opportunity ...
Kerrie: You made the extra eort to
build these connections.
Sara: Yeah ...
Dawn: One o the things that was
built into Dads package was that
the person who came in on one day
o the week would take Dad with
him to go and get the Friday shand the ruit and some milk or bread
or whatever ... so that was putting
the connection between Dad and
his carer with each o those ...
Sara: Dad and his community and
keeping him engaged with the
outside world.
Kerrie: Keeping your Dad engaged
what dierence did that make to
you as carers?
Dawn: It gives you things to talk
about. Who did you see?, Oh
you must have seen Rob, or I
saw Chris today and ... Its a way
o communicating and maintaining
those connections. (FG 7)
-
7/31/2019 2012 Bringing Our Dying Home
30/68
-
7/31/2019 2012 Bringing Our Dying Home
31/68
29
without me wearing them out ... I try
and organise a win/win situation. (FG 3)
Clear and controllable
communicationClear and open communication, especially
rom the primary carer/s and/or the dying
person was spoken about as enabling
people in the caring network to provide
support. Members o the network believed
it important to be kept inormed: we never
elt shut out ... by being kept inormed we elt
like the doors were open or us to be in contact
(FG 2). Being kept inormed enabled them
to eel included, and thus able to stay in
contact and provide support. Members o the
care network also ound it easier to provide
support when they trusted the carer/s and/or
person being cared or to ask or help when
needed: we like to know that you will call us i
you do need us. It puts my mind at rest knowingthat any one o you will give a shout i you need
help. I dont have to keep phoning (FG 3).
Equally, they appreciated being told that help
was not needed:
Its also good too that Mark will say
no, i he needs to go to sleep. Its
good or people to oer (to come
round, do this) and, i hes tired, hell
say, No. Come in an hour or ring me
later. People neednt be araid to have
an idea to just mention it. It might
not be convenient (or example) today
because theres an appointment or
something, but we can jot it down (or
later). (FG 3)
Te use o technology is clearly linked to
open communication. By this we meanlandline phones, mobile phones and
computers. Computers enabled community
to come into the home, with email messages
oten being received rom around the
country and the world. It was clear thatemails and texting were new and very useul
orms o communication or the carer and
the care network. Tey could be a useul
and appreciated means o staying in touch
with the person being cared or, especially
as people became more rail and unable to
physically see too many people. Emails were
a particular expression o the community
coming into the home, to continue to
be with the dying person. Tese types o
communication also gave the carer control
over when to speak to people, and how, and
enabled them to speak to more than one
person at once.
Written messages provided a powerul level
o support and meant that communication
channels could be kept open in a quick and
efcient way:
Email
messages
rom overseas
were so
important
You might not think that sending me
that text message is important, but it
is really important. Communication
is such an easy thing to do but such
an easy thing to overlook. That
quick text message is so important
Ive still got them in my phone. I
dont know why I orgot to take aphoto o that. (FG 2)
-
7/31/2019 2012 Bringing Our Dying Home
32/68
30
One person did resist getting a mobile
during the time o caring as they eared being
overwhelmed by phone calls, showing that
communication can become another difcult
task to be managed.
Te landline telephone was also seen as a vital
link to networks and amily, and provided a
much-appreciated means o support:
Can I talk about the phone? I know
Liam and Debra had a pick-up phone
landline phone and Deanne was
laying down and couldnt come to
the phone. So then they organised a
cordless phone and that allowed Liam
to take it to her and/or one o the girlsvisiting. It was a lot easier ... I think it
was signicant that people were ringing
and checking how she was, how you
were. Mum loved ringing her sisters as
well and that still continued. You canprobably conrm that Aunty? Having
chats with Mum on the phone. (FG 4)
echnology enabled networks to stay
inormed and in touch, enabled people to
give and receive support rom anywhere, at
any time, reminding us that caring networks
do not need to always be physically present to
be doing the work o caring:
Being light-hearted (FG 3)
Tis sub-theme captures a less tangible
enabler o establishing and maintaining a
caring network. While there is no doubt
that caring or someone at EOL is hard work
emotionally, physically and spiritually a
sense o un, or play, was apparent in many o
the stories:
I tried to take a picture o the
computer screen o the email
messages because Teds cousin,
Brenda, in England and his brothers
and a lot o riends overseas and
in Australia used to email Ted. He
would get a lot o strength rom those
emails. Some were long, some small
that was very important or himbecause towards the end he didnt
want to talk to people except or the
chosen ew. It was too hard too
much energy but he loved getting
the text messages and emails. (FG 2)
There was laughter too. You and
Pete made everybody laugh, asusual. (FG 2)
-
7/31/2019 2012 Bringing Our Dying Home
33/68
31
Have you ever seen Death at a
Funeral or something like this? It
was just like that. Completely arcicalmoments. Im laughing at them thinking
you cant help but laugh. This is an
amazingly blurry time but there were
just some hilarious moments. (FG 8)
And with the laughter sometimes,
theres an aspect o black humour,
isnt there? ... Stuart lost the ability
to be able to communicate with the
right words, but he didnt know that.
It was OK when it was us wasnt it?
This poor plumber came and these air-
conditioning guys and hes telling themexactly what he wanted and you could
see that he really knew what he wanted
but the words were totally wrong. Now
you should be able to laugh at that.
A lot o people would think we were
being very irreverent laughing ... but
we couldnt help ourselves. You have
to see the unny side ... it was like a
release valve. (FG 5)
Humour being able to see the unny side
seemed to enable people to be themselves,
stay connected and provide care and support.
Even though, as the last quote shows, this
may be considered inappropriate by some,
this aspect provided a release valve or people
and provided a dierent quality to the
caring relationship. In many ways this is an
alternative story o caring. Stories o caringare oten ocused on the difcult and dark
times, o which there were many or our
participants. And while people oten shed
tears in the ocus groups and interviews, there
were as many examples o laughter as peopletold these alternative stories.
Weve been there beore (FG 5):
Previous experiences
I had a reasonable amount o
experience with dying people because
Id nursed my mother at home until
she died, or six months previously to
that. So I had gone through that whole
experience o having someone close
to me die at home and that was a very
good experience. (FG 8).
In many ways this sub-theme also ts with
the transormational eects o being with
someone who is dying. People used their
previous experiences to support others in the
work o caring, either directly in doing the
hands-on tasks, or as an advocate in resisting
the health system when necessary. Teir
literacy about death the skills, attitudes and
knowledge they gained, whether rom positive
or negative experiences appeared to provide
them with the ability and motivation to be
central members o urther caring networks,
enabling: maybe a bigger support because o
the related experiences (FG 4). Members o
eight o the nine ocus groups had previous
experience with the death o someone close to
them. Tis may have been in a hospital: myhusband was in a nursing home (FG 1), or at
home: both my parents died at home (FG 9).
There was lots o laughter and lots
o storytelling. It was very noisy; it
was like being in the middle o a
henhouse. (FG 7)
When someone is dying you have just
got to be there or people. You cant go
in there with ideas; you just go along
and sort o eel your way. (FG 5)
-
7/31/2019 2012 Bringing Our Dying Home
34/68
32
Te then HOME Hospice (now LieCircle)
mentors we interviewed were mentors
because o the personal experiences that theyused as the oundation to support other carers
via their work or HOME Hospice. Five out
o the nine ocus groups, plus the two carers
we interviewed, had used a HOME Hospice
mentor or support to a greater or lesser
degree.
One group elt that they were well supported
already through their existing networks, so
did not make ull use o the mentor:
Another group talked about how HOME
Hospice enabled the carer to support her
mother to die at home:
I was at a riends place and I was
reading an ad in a local paper about
caring or the dying at home. I ound
it and cut it out. Clare was still at
home then and I thought it might be
something or her to look at later on.
Im glad I did that because it led to
things down the path that I would never
have imagined. I never had a lot o
support when my husbandwas sick. (FG 1)
In many ways it seems that the role HOME
Hospice played was as a saety net: people
knew they existed, that an organisationwas there that actively supported dying at
home, and this gave carers and the networks
permission and condence to undertake the
caring tasks: I think people get rightened and
dont realise they have that option. I knew I did
because Id spoken to HOME Hospice (FG 2).
One carer especially appreciated the strength
they developed rom just knowing that
HOME Hospice was there, combined with
the physical presence o the mentor:
HOME Hospice also provided inormationpeople ound useul to use at home, in their
own time:
We had loads o networks. I think
thats why we didnt use our HOME
Hospice mentor very much because
we had this very strong inner core
group more amily than anything
else and then we had the outer core
group. They werent really outer
they were still very close the mumsrom school, parents like that.
Then we had the Internet:
cyberspace calls.(FG 2)
In act, when HOME Hospice came
on the scene and I understood
their philosophy and rationale it
was also a great comort because
their avowed purpose was to assist
people to continue having the
support and encouraging others, i
you like, to support us like riendsand amily to come in and be
part o the amily. That just gave
me a great deal o heart, and as
things did get harder and harder
I just ound it this might seem
paradoxical or strange but in one
sense it was easier coping at home
because I had help where it was
needed, but there was a lot o timewithin that 24-hour day, even though
we had carers coming in at various
times, there were still many, many
hours consecutively where I was
able to cope, I elt at the time and
Ive not changed my opinion very
eectively. (C1)
-
7/31/2019 2012 Bringing Our Dying Home
35/68
33
Determined to cope without
getting help: Barriers to orming
care networks
Despite the almost universal recognition
among participants that staying connected
was essential or carers and the dying person,we did identiy a number o barriers to caring
networks being established or being able to
unction. Some people were determined to
cope, earing the judgement o others i they
asked or help. An experienced mentor said:
What I noticed was the universal reluctance to
ask or help ... perceptions o what that might
mean in negative terms about ... their ability
to care suciently (M5). Tis could lead
to people wanting todo: it all himsel and
he ound it really hard (M4). In one group
people had been oered help but the amily
resisted:people coming into the house when
your husbands not well (FG 6). Tis could be
compounded by carers narratives o privacy:
were private people. We dont believe in running
over there and going in the house and then
run over here and come into this one. We say,
Gday, and thats it (FG 4), or being proud:people are there but its that accepting o their
help or eeling proud or not eeling proud Im
ne, Im ne(FG 4). Or it could be that
people who want to help dont know what to
do, or how to oer support:people dont knowhow to deal with you when you are dealing with
a situation like this. Friends dont know how to
support you or what to say (FG 6).Where the
people being cared or at home were elderly,
their riends and neighbours were oten also
elderly, which could mean that they: were
supportive but ... not in good health, but they
were morally supportive but couldnt physically
help out(M3). One or any combination o
these reasons led to one o our ocus group
participants asking: so what do you do ...
you pull back, but then that leads to a sense o
isolation as well(FG 6).
We have included this small section here as
it is important to recognise potential barriers
to being connected and receiving help while
caring or someone. It is a small section as
this was not a strong theme. Te majority oparticipants were part o a caring network
and did ask or, give and/or receive support.
Tis was to be expected as the design o our
research was such that we purposeully sought
to speak to people who had been part o a
network o support.
Theme 3: The ordinary becomes
the extraordinary: Everyone doing
a little bit makes a broad and
strong net (FG 3)
There are some things that you can
give away. You can give away a task ...
No matter how much support you have,
some things you are compelled to do
or yoursel and thats where the load
comes. So being able to give awaysome things reduces that. Cos i youre
trying to carry everything ...(FG 1)
Then I looked or help and ound
HOME Hospice at that time my GP
recommended that I might be ableto get their help. So I had support
and the old books that came with
that to read about preparing or
dying and how to care or someone.
Armed with those I managed to care
or Mum until she died at home,
which was a great experience or
everybody: her amily and me,
and it was our rst experience, but agreat one. (M3)
-
7/31/2019 2012 Bringing Our Dying Home
36/68
34
Practical stu mainly, such as sitting
with someone talking to them, cooking,
cleaning, mowing the lawns, doing therunning around, taking the children,
making phone calls, which is huge I
think, to stop the carer rom having
to constantly reiterate ... What else?
Taking them to and rom hospital,
sitting with them so the carer can get
out and have a coee. Whatever it be
anything. (M2)
At the outset o this research we believed it
important to operationalise caring. Tere is
literature that tells us what primary carers
do (see Zapart et al, 2007) but we were
particularly interested in what the caring
networks did. What did riends, amily,
neighbours and work colleagues actually do?
We believe this is important inormation. I
people are to help, then it is useul to know
what people nd helpul. I people are toresist being isolated as they care or someone,
then what are the tasks people do to help
them resist this?
Initially it was difcult to get the caring
network to talk about what they did to
help, with comments such as I did nothing
orJulie (carer) was extraordinary (FG 1).
We wondered i this hesitation was due to a
deep respect and admiration or the primary
carer; a desire not to diminish the work the
carer had done, or a eeling that what other
individuals had contributed was insignicant
compared to the overall work o the carer.
Oten it took the carer to begin to discuss the
tasks they had ound helpul and/or the tasks
o the caring network became apparent in the
discussion o the photographs. Eventually we
elicited narratives o caring in which the taskspeople did to support the dying person, the
primary carer and amilies, emerged. Overall
the narratives showed that the tasks o caring
were as diverse as the number o people in the
research. Tis cannot be overemphasised, withpeople saying: everyone dies diferently and has
diferent needs (M3), and: its no good telling
them to meditate when a good bottle o wine
is what they need (M3). We ound that while
there was a wide diversity o tasks, there were
also some commonalities. Food, or example,
cropped up in every discussion. Penguins in
only one!
What the networks did: The tasks
o caring
While we wish to provide a sense o the
breadth o tasks people engaged in, we want
to avoid presenting lists that could be slightly
tedious. However we, and the participants,
believed that the concrete things people did
to help provide important inormation or
carers and caring networks. So, with a desireto be both interesting and useul, we have
chosen to present this section in the
ollowing ways:
Te photographs illustrate tasks that people
chose to talk about. We have not been able
to include all