Bringing Our Dying Home: Creating Community at end-of-life

8/6/2019 Bringing Our Dying Home: Creating Community at end-of-life

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Creating community at end o lie

Bringing ourDying Home

Dr Debbie Horsall, Kerrie Noonan and Assoc Pro Rosemary Leonard

May 2011


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AcknowledgementsFirstly we would like to extend our warm

and 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 totalk to us. We hope that we have done your

stories justice in this report.

Nike 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 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 already

being done by HOME Hospice inspired thisresearch; 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 Gill

Batt as our industry partner rom Cancer

Council NSW as part o our research team.

We appreciated Gills extensive experience in

the area. She provided expert and valuable

advice, timely eedback and excellent strategic

suggestions, and was always encouraging and

positive 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 andadministration o the research. I ever we

did not know the answer to a question,

they did! Also, thanks to Andy Horsall

or prooreading, editorial comments and

suggestions or uture directions.

Finally, we would like to thank the talented

CCNSW Publications eam or the editing

and design o this report.

Referencing guide

Horsall, D, Noonan, K and Leonard, R

(2011) Bringing Our Dying Home: Creating

Community at End o Lie. Research Report,

University o Western Sydney.

Te research was unded by the University o

Western Sydney and Cancer Council NSW.

ISBN: 978-0-646-55666-6

Te researchers warn Aboriginal and orresStrait Islander people that this publication may

contain images o people who are deceased. We

do not wish to upset or cause distress to living

relatives and community members.

Tis report can also be downloaded rom the

Cancer Council NSW website

www.cancercouncil.com.au.

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Contents

Acknowledgements 2

Bringing our Dying Home: Te project at a glance 6

Overall ndings 7

Key ndings and research themes 8

Teme 1. It takes a community: Each and every one o you had this little part to play 8

Teme 2. Resisting isolation and staying connected: Enablers o caring networks 9

Teme 3. Te ordinary becomes the extraordinary: Everyone doing a

little bit makes a broad and strong net 9

Teme 4. Its a process o transormation: developing death literacy 9

Note on style 9

Background to Bringing our Dying Home 10

owards an alternative: Community responses to dying 10

Building social capital 12

Te mentoring program 12

Methodology and methods 13

Objectives o the research 13

Our research questions 13

Research design 13

Recruitment and participants 14

Participant Group 1: Primary carers and their support networks who had a relationship

with HOME Hospice 14

Participant Group 2: Individual interviews with community mentors and carers 15

Participant Group 3: Workshop participants 15

Participant Group 4: Primary carers and their support networks who had no relationship

with HOME Hospice 16

Methods and analysis 16Focus group procedure 17

Interview procedure 17

Ethical considerations 18

Data analysis 18

Findings and discussion 18

Teme 1: It takes a community: Each and every one o you had

this little part to play 19

Teres a strength in numbers 19

You were absolutely crucial: Core and outer networks 22

Teme 2: Resisting isolation and staying connected: Enablers o caring networks 24

Its worth making the eort 24

Agency o the dying person 26

Clear and controllable communication 27

Being light-hearted 28

Weve been there beore: Previous experiences 29

Determined to cope without getting help: Barriers to orming care networks 31

Teme 3: Te ordinary becomes the extraordinary: Everyone doing a little

bit makes a broad and strong net 31 What the networks did: Te tasks o caring 32

Lie, in a sense, just continued on: Keeping things normal 35

Teme 4: Its a process o transormation: developing death literacy 36

It was a joy and a privilege: ransorming the literature through alternative stories o care 36

ransormat ive eects on individuals : developing knowledge and skills 38

Changes in attitudes to death and dying? 40

Rippling out: Developing a communitys capacity to care 41

All these new people: Ive just got to know them 42

Stronger, closer, deeper, warmer 44

Changes in amily relationships 45

Outside o amily 45

Negative eects on the relationships 46

Conclusion and uture directions 47

Key ndings 47

Teme 1: It takes a community: Each and every one o you had this little part to play 47

Teme 2: Resisting isolation and staying connected: Enablers o caring networks 47Teme 3: Te ordinary becomes the extraordinary: Everyone doing a little bit makes

a broad and strong net 47

Teme 4: Its a process o transormation: Developing death literacy 47

Looking orward: Its about the community caring 48

Epilogue 49

Reerences 50

Appendix 1: Focus group schedule 54

Appendix 2: Interview schedule individual carers and mentors 55

Appendix 3: Inormation sheets and consent orms examples 56

Toughts 62


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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: Creatingcommunity at end o l ie research project,

a two-year qualitative project undertaken by

the Social Justice Social Change Research

Group (UWS) in conjunction with HOME

Hospice and Cancer Council NSW.

Historically, end-o-lie (EOL) research about

caring 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 involvedin 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 96 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

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 ndings

While most people in Western countriescontinue 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 mean

that 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 oor 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 us to 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 were

general 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 Ellison2011, p. 4) became a topic o public

debate and scrutiny. Te latest edition o

Cultural Studies Review(March 2011)

and the 2011 HOME Hospice

conerence, Live, alk, Die, are two current

initiatives beginning this debate in the

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?

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)


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In the research reported here we ound that

people can and do care or their dying at

home with the help o inormal networks

o community members. And they do it

well. Tis is not to say that it is easy: its not.

However, people overwhelming 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 theydeveloped 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 was

supported 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 permissionand practical hands-on help to gather caring

networks together and to negotiate the type

o help they need. 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 caring

networks 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, 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:

Key ndings andresearch themes

Theme 1.It takes a community:Each and every one of 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 outer

networks that played dierent but vital and

complementary support roles.

Theme 2. Resisting isolation and

staying connected: Enablers of

caring networks

People 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 tostaying 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 becomes

the 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, notwhat 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 of

transformation: 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. 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. All names have

been changed. We have not edited or changedpeoples actual words.

Note on style

Te style o writing in this report may

dier rom some readers expectations o a

research report. 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.

Help people to achieve what is

most important to them at the end

o lie. That 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)


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terminal illness. Presently the medical model

and the health service approach to palliative care

dominate the community response to EOL care.

Tere is, as a result, an abundance o research

describing 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 patient

support. 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 (Gnomes &

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 new services. Tey are community

members acting towards each other in new

and constructive ways to improve their own

capacity 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. Te dominant 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 oormal 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 individuals

and communities develop sustainable ways to

care or their dying by building social capital.

Background toBringingour 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 illnessspending 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

provide long-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 caring

or 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 illdying in institutional care, the vast majority

o people continue to express a desire to l ive

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 that

requires 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 communityresponses 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 in

the end-o-lie care o a ellow citizen with a

The love

shared

between

mother and

son


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support person. Tis approach generates

social capital through community-building

as the mentor assists the carer in mobilising

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 thesepersonal communities comprise 14 people

and can be as large as 35 people (HOME

Hospice, 2008). HOME Hospice has

partnered with the Cancer Council o NSW

and has a clearly dened program o support

or carers who are caring or 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 important goals o

community development programs at EOL.

HOME Hospice aims to generate social

capital through community-building andmobilising 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 andmethods

Objectives of the researcho 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, orstrengthened, as a result o a person dying

at home.

o contribute to knowledge about a

community 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 caring

network aect peoples attitudes towards

dying at home?

Research design

o answer the above questions we used a

creative qualitative approach employing

the 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

Building social capital

Because the term social capital has been

used widely and rather loosely, we need to

explain 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 eciency 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 as

presented 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 that

social 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 natureo 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 ignoring

these key concepts, this research encourages

participants to talk about their personal

eelings and attitudes arising rom their

experiences within the network.

The Mentoring ProgramTe HOME Hospice Mentoring Program is

an example o a community developmentapproach to EOL care in the Australian

context. Te HOME Hospice program has

been in operation or 28 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 the community to

care (HOME Hospice, 2008). Mentors,

once invited by a carer, act as a guide and

Dianne

wanted a

gravestone

with hands

in prayer so

they gave

her photos to

choose from


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Participant Group 2: Individual

interviews with mentors and

carers

Te HOME Hospice mentor has the personal

experience o caring or a loved one and

providing mentoring support to caregiversand the personal communities o people

living with a terminal illness at home.

Inormation about the project was sent out

to all o the mentors associated with HOME

Hospice, inviting them to participate in the

research project. Six mentors responded.

All six were rom the Greater Western area

o Sydney. Interviews lasted about one hour

and were audio-recorded and conducted in

places chosen by the mentors. One mentor

chose to write her responses to

our questions.

Participant Group 3: Workshop

participants

Trough HOME Hospice and Cancer

Council NSW networks two workshops were

conducted by HOME Hospice, one each in

Western Sydney and the Northern Beaches.Te purpose o the workshops was twoold:

rstly they enabled local HOME Hospice

mentors to get to know the researchers, and

second they were able to experience rst-hand

a modied version o the photo voice and

ocus group method. Te workshop invited

participants to take photos to represent

their experiences o caring and these photos

were used in a group brainstorm exercise

that helped elicit knowledge rom the group

about the supports, services and caregivers

needs when caring at EOL. Working within

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

fourish as a 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 enabled

us 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 their

support 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 96 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, and

through local newspapers. Tese strategies aredescribed below.

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

the HOME Hospice organisation 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 withoutcoercion. Participants in this group were

rom the Greater Sydney region only. Tis

recruitment strategy involved attending

HOME Hospice sta meetings, establishing

relationships with current mentors, and

employing a research assistant who was

a volunteer community mentor. Four

o the resulting ocus groups were with

primary carers and their networks, and were

organised primarily with the carer. Te th

was instigated and organised by a young

person who had motor neuron disease.


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16 17

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 thatpeople opened their homes and their hearts to

us during this process. Te conversations were

oten lled with equal measure o laughter

and 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 they had

given. 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 drawmaps o networks and relationships pre and

post-caring. Tis mapping was acilitated

by drawing 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: red

or 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 dicult.

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 thepieces o butchers paper. While in most cases

participants drew the maps, the researchers

drew the maps i requested or i 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

experiences o caring and their experiences

as a mentor. One mentor chose to respond

to us in writing via email, rather than in a

ace-to-ace interview. We also interviewed

two carers (one current, one past) about their

experiences o caring. Both these carers had

initially responded to participating in the

research project and requested individual

interviews rather than ocus groups. Allinterviews 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 to

orally describe changes in the networks. (See

appendix 2 or interview schedule).

a community development ramework,

it provided an overall impression o what

the networks look like and what it takes to

mobilise ormal and inormal networks.

Participant Group 4: Primary

carers and their support networks

who had no relationship with

HOME Hospice

In July 2010 the Cancer Council o NSW

provided additional unding or us to widenour participant sample. Tis was in response

to the diculties we had experienced in

recruitment or group 1 and the act that

we were interested in discovering how

people who were not associated with

HOME Hospice mobilised care networks.

Recruitment or this group took place

through the local media in the Sydney

metropolitan and Greater West region. Te

University o Western Sydney media unit

sent out press releases about the project to all

local newspapers in these areas. A telephone

number and email address were provided so

that people could contact us i they wished,

again an opt in process. Tis proved to be

a successul recruitment strategy, with 42

people contacting us over a six-week period.

While many o these people ell outside the

scope o the research (the person they hadcared or had died more than three years ago,

they were not able to bring together their

support network or a ocus group, and/or

they wished to complain about local services),

we did secure our ocus groups in this

period. Tree o these groups were in NSW

and one in the AC.

Methods and analysis

Participants were given cameras two weeks

beore ocus group meetings and asked to re-

cord 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 mapso relationships pre and post-care, indicating

via coloured textas the strength and intensity

o relationships. Tese maps were initially

analysed by participants in the interviews/

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 identiyrelationship strength through a Likert scale

or similar method, and the inormation is

collated and analysed by the researchers with

no participant input. Network mapping has

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 gave

interpretive 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


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18 19

knowledge sharing and the eeling that people

are supporting each other in something extra-

ordinary.

Theme 1: It takes a community:

Each and every one of you had

this little part to play(FG 8)

Te terms community or networks o

carers/support networks can run the risko 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 networks

rom 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 in

numbers (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 andsupport 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 did

whatever we could not only or each

other, or Mum and or Dad. (FG 4)

Ethicalconsiderations

Tere 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 aninormation 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 were

also 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 by

members o the research team and 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 communities

at 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 ourresearch 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 withdata quotes and photos rom participants.

Te photos with titles are ones chosen by

participants during the ocus groups. Tose

without titles 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 a

cumulative eect in which caring networks

are transormed through relationships,

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 yet

to experience anyone who doesnt

have anybody. (M3)


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20 21

I was there or not so it was a routine (M3).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 health

proessionals 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 (M1),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 inparticular 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 going

to 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 was

not 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 someproessional 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 could

be heard contributing at poignant moments.

When pets were spoken o it was with such

Friends were dierentiated as either riends

o the primary carer: my riends didnt reallyknow 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 alsodierentiated 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 shows

that 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 thestreet 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 c ame 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 out

email alerts or prayer, or at weekly ser vices

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 takehim 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

LEFT: Walking

the dog and

talking

RIGHT: Life

goes on for

the rest of the

family

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 a

bunch o fowers, which was also lovely but it was a dierent reaction. (FG 2)


13/35

22 23

intensity and regularity that we have included

them here as part o the caring network. Tey

were seen as good listeners, allowing people

who 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 beshown 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 read

the 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 the

network 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

medical inormation and assessment,

the practical equipment and know-

how and the respite i the second layer

are not available or are tired. They

can 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: havingsomeone 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 doing

OK. 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 and

have 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; theywere 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 that

theres a network out there. (FG 5).

Diagram showing the various layers of

support. Drawn by participant during a

focus group

Sometimes like that cat, having an

animal (like our dog) ... you can go

out 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)


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24 25

theme in interviews and ocus groups was the

belie that community and social connections

were vital to peoples wellbeing, and that

they 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 that

took: 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 continued

to 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 fow-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

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 of

caring 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 primary

carer (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: when

youre 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 effort

People spoke abouttheir desire to keep

connected 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 expect

to be appreciated. (FG 2)

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 sh

and 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)


15/35


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28 29

Have you ever seen Death at a

Funeral or something like this? It

was just like that. Completely arcical

moments. 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 them

exactly 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 caring

are oten ocused on the dicult 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 people

told these alternative stories.

Weve been there before (FG 5):

Previous experiences

I had a reasonable amount o

experience with dying people because

Id nursed my mother at home untilshe 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. Teirliteracy 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: my

husband was in a nursing home (FG 1), or at

home: both my parents died at home (FG 9).

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 dicult

task to be managed.

Te landline telephone was also seen as a vitallink 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 girls

visiting. 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 can

probably 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 him

because 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, as

usual. (FG 2)

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)


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30 31

Te HOME Hospice mentors we inter viewed

were mentors because o the personal

experiences that they used 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 wasreading 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 husband

was 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 organisation

was 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 HOME

Hospice was there, combined with thephysical presence o the mentor:

HOME Hospice also provided inormation

people ound useul to use at home, in their

own time:

Determined to cope without

getting help: Barriers to forming

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 leadto 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 know

how 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 othese 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 o

participants 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 becomesthe 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 away

some 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 able

to 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)

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 mums

rom 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 riends

and 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)


18/35

32

Practical stu mainly, such as sitting

with someone talking to them, cooking,

cleaning, mowing the lawns, doing the

running 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 to

resist being isolated as they care or someone,

then what are the tasks people do to help

them resist this?

Initially it was dicult 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 adeep 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 tasks

people 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, with

people 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

of 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 desire

to 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 o them, but we have included

those that cropped up the most oten or

discussion.

We have included quotes where people

refect upon these tasks or quotes that

encapsulate the commonalities or dierences

in the ocus groups and interviews.

We then go on to discuss the theme o

lie goes on, which people spoke about in

relation to why they provided support, and

what they were hoping to achieve.

33

She didnt need massage

or meditation lessons, she

needed rewood. (M3)

With the jug Mum used

to love a cup o tea thats

why ... wed get the jug on

and make a cuppa. (FG 4)

Like, the postie brought us themail ... hed just hop o his bike

and come to the door because

the door was open so that was

the mail one. Then my sister-in-

law would come down and do

the washing, the vacuuming,

eed the cats ... Games

playing board games. (FG 5)

I drove him to therapy because they told him he shouldnt drive ater chemo. A couple o times

I took him there and drove him back ... I did a lot o driving with them while Mum was with Dad.

Took on a bit o responsibility driving the car around. Thats why I chose the keys. (FG 2)

Their amilies were amazing. I Sharon ever needed taking

anywhere or brought back I never had to think about lits

there were people who would magically appear to erry her

around without me having to ask.(FG 2)


19/35

3534

Well, obviously whenMark spends Tuesday and

Wednesday with us, it gives

Grace and Barry time to go

dancing in the evening or just

have a rest, do whatever they

have to do. (FG 3)

Id just like to thank our builder up

here too. Hes not only a wonderulriend but has put wheels on the

billiard table, a door down the back,

built the veranda. (FG 2)

Yeah. Well, I came to be with

him ... but in terms o what I

can do, I can be with that sort

o process with the person

and just be totally present with

whats happening. (FG 8)

Practical stu mainly, such as sitting with someone

talking to them, cooking cleaning, mowing the lawns,

doing the running around, taking the children, making

phone calls, which is huge I think, to stop the carer

rom having to constantly reiterate ... Taking them to

and rom hospital, sitting with them so the carer can

get out and have a coee. ... Anything. (M2)

Life, in a sense, just continued on

(C1): Keeping things normal

Even though the work o caring could be

hard, or there has been a shitty result today

(FG 2), the caring network most oten saw

their role as striving to keep lie as normal

as possible, or business as usual with a ew

modications (FG 3), or carers and

amilies. Te ollowing dialogue illustrates

this well:

Tis striving or normality in the most

extraordinary circumstances was also seen as

important or the dying person: I think she

wanted to eel normal as well(FG 9).

She still had contact with the real

world because she would want to know

what we were having or dinner, what

went on in the kitchen. Were her boys

being ed and who was bringing what,so ... it gave her normality. She could

still be the mother o the house. (M3)

One person even elt that this normality

contributed to the person living longer than

expected:

Pat: Gina has more activities per

square inch than any child Ive

ever known.

Arthur: Thats the heart o the

amily too. Youve got to give

Jude time as well and youve got

to keep Ginas normal lie still

unctioning.

Pat:All those lovely people who

used to take Stuart to woodwork

classes, bowling.

Liz: It was marvellous that things

were really good.

Arthur: Just keeping the ball

rolling. We did the cricket because

Stuart was a big cricket an and

all the rest o it. We helped Gina

with homework numerous

assignments and dierent

challenges ... and cooking, groceryshopping, things like that. Wed

just go and buy bags o groceries

and bring it down. (FG 5)

Stuart lived a lot longer than

everyone expected and I think

thats because o that normality and

riends dropping in. (FG 5)


20/35

36 37

act that Id give almost anything or

Stuart to still be here and hes not, but

still it has been a joy. (FG 5)

It would be tempting to think that talking

about eelings could be idealised and perhaps

even sentimentalised. We did not nd this.

Te quotes above show what we ound:people were able to talk about their eelings

in a way that captured the positives and

negatives; there was a joy and grey hollow.

No participant said it was easy. But they did

speak about the deeply proound nature o

their experiences. When participants spoke o

their eelings in being with the dying person

they said they elt: incredibly

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Bringing Our Dying Home: Creating Community at end-of-life

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