Bringing Our Dying Home

Creating community at end of life

Assoc Prof Debbie Horsfall, Kerrie Noonan and Assoc Prof Rosemary Leonard May 2012
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Bringing Our Dying Home Creating community at end of life First published May 2011. This edition May 2012. D. Horsfall, R. Leonard, K. Noonan and Cancer Council NSW. ISBN 978-1-921619-65-6 Authors: Assoc Prof Debbie Horsfall, Kerrie Noonan and Assoc Prof Rosemary Leonard Editing and Design: Cancer Council NSW Printer: SOS Print + Media Group

Bringing Our Dying Home

Creating community at end of life

Assoc Prof Debbie Horsfall, Kerrie Noonan and Assoc Prof Rosemary Leonard May 2012

Foreword
Not so long ago, nearly everyone died at home surrounded by family and loved ones. Somehow, over the last century, hospitals took over as the place to die. When asked now where they want to die, most people say they want to be at home. The reality is that most die in hospital. Intrinsically, we all think that a good death means slipping away, passing over peacefully, not surrounded by flashing lights and hooked up to tubes. Over the past 20 years, much has been made of giving patients choice and decision-making around care and treatment. Unfortunately, that level of decision making often doesnt extend to where they are. This study goes a short way to trying to understand what the benefits are of dying at home, to the individual, to the family and to their community. Through this work, and future research, we can help people make decisions and choices that they otherwise might not feel empowered to make. Gillian Batt Director Cancer Information and Support Services Cancer Council NSW

Introduction
In May 2011, the first edition of Bringing Our Dying Home was launched by acclaimed social innovator Charles Leadbeater at the Dying for Change forum in Sydney. This event was attended by 70 people, all with an interest in innovative approaches to end of life and palliative care in Australia, and provided a wonderful setting for the launch of this report. Since then, we have published and presented our key findings both locally and internationally and have received feedback from caregivers, palliative care health professionals and academics. We are proud of the positive feedback we have received and the interest in the creative and participatory methods that bring to life the stories of caring via photo voice and participatory network mapping. (See Appendix 4 for a list of Publications and Conference Papers.) There is no doubt that caring at the end of life is both challenging and rewarding for individuals and community members, and this project has brought to life the many positive and inspirational stories and experiences about what it takes to care at end of life. This challenges

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 also sparked interest from other research teams internationally, who are looking for methods that help to demonstrate the community building of Public Health approaches to Palliative Care. LifeCircle certainly knows this they are dedicated to helping Australians live and die well. Their programs are reconnecting the threads of community by helping people support each other through serious illness and at lifes end. When this research began in 2008, LifeCircle, then called HOME Hospice, was looking to build an evidence base about their work in the community. They were an integral part of the work contained in this report. Readers will notice that in this second edition, some references to HOME Hospice remain when the context relates to HOME Hospices role in this research project. When discussing the ongoing work of the organisation, we use the current name, LifeCircle. Ongoing support from Cancer Council NSW and in particular from Gillian Batt, the Director of the Cancer Information and Support Services division, has been invaluable. Cancer Council NSW is now our Australian Research Council Linkage partner for a 3-year project that extends the work you read here. This partnership has enabled us to connect with service providers, carers and their communities throughout NSW and the ACT.

Yours Sincerely, Associate Professor Debbie Horsfall School of Social Sciences and Psychology University of Western Sydney

Kerrie Noonan Senior Researcher School of Social Sciences and Psychology University of Western Sydney

Associate Professor Rosemary Leonard Senior Research Scientist CSIRO & School of Social Sciences and Psychology University of Western Sydney

Acknowledgements
Firstly we would like to extend our warm and appreciative thanks to all the participants in this research. They opened their hearts and often their homes to tell us about their experiences and stories of caring. This was not always an easy task for the storytellers, or for the researchers. Talking about intimate, emotional and important issues takes time and requires courage. We thank you all for taking the time and for 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 for the first 18 months of this project. We thank her for her tenacity, her attention to detail, her humour and her sheer hard work in getting this project off the ground. We also appreciated her skill and warm, inclusive sense of humanity

as she talked with potential participants, community members, and organisations in the area. We missed her when she left. To the mentors, staff and management involved in HOME Hospice (now called LifeCircle) during the life of this project, we thank you for your assistance throughout, your involvement as participants, and your feedback. 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. The research was funded through a partnership grant with the University of Western Sydney and Cancer Council NSW. We were fortunate indeed to have Gillian Batt as our industry partner from Cancer Council NSW as part of our research team. We appreciated Gillians extensive experience

in the area. She provided expert and valuable advice, timely feedback and excellent strategic suggestions, and was always encouraging and positive about the research. The Social Justice and Social Change research group of the University of Western Sydney auspiced the project and we are thankful for the support and guidance of Dr Peri OShea and Dr Janette Welsby in the planning, implementation and administration of the research. If ever we did not know the answer to a question, they did! Also, thanks to Bronny Carroll, our fantastic transcriber, and Andy Horsfall for proofreading, editorial comments and suggestions for future directions. Finally, we would like to thank Cancer Council NSWs Publishing Unit for the editing and designing of this report.

Referencing guide
Horsfall, D, Noonan, K and Leonard, R (2012) Bringing Our Dying Home: Creating Community at End of Life. Research Report, 2nd ed. University of Western Sydney. ISBN: 978-1-921619-65-6 The research was funded by the University of Western Sydney and Cancer Council NSW. This is the second edition of the report, which was originally published in May 2011. The report can also be downloaded from the Caring at end of life research website: http://caringatendoflife.wordpress.com/

Warning about images

The researchers warn Aboriginal and Torres Strait Islander people that this report contains images of some people who are now deceased.We do not wish to upset or cause distress to any living relatives and community members.

Contents
Foreword Introduction Acknowledgements Bringing Our Dying Home: The project at a glance Overall findings Key findings and research themes Theme 1. It takes a community: Each and every one of you had this little part to play Theme 2. Resisting isolation and staying connected: Enablers of caring networks Theme 3. The ordinary becomes the extraordinary: Everyone doing a little bit makes a broad and strong net Theme 4. Its a process of transformation: developing death literacy Note on style Background to Bringing Our Dying Home Towards an alternative: Community responses to dying Building social capital The mentoring program Methodology and methods Objectives of the research Our research questions Research design Recruitment and participants Participant Group 1: Primary carers and their support networks who had a relationship with HOME Hospice Participant Group 2: Individual interviews with community mentors and carers Participant Group 3: Workshop participants Participant Group 4: Primary carers and their support networks who had no relationship with HOME Hospice Methods and analysis Focus group procedure Interview procedure Ethical considerations Data analysis Findings and discussion Theme 1: It takes a community: Each and every one of you had this little part to play Theres a strength in numbers You were absolutely crucial: Core and outer networks 2 2 4 8 9 10 10 11 11 11 11 12 12 14 14 15 15 15 16 16 16 17 17 17 18 19 19 20 20 20

21 21 24

Theme 2: Resisting isolation and staying connected: Enablers of caring networks Its worth making the effort Agency of the dying person Clear and controllable communication Being light-hearted Weve been there before: Previous experiences Determined to cope without getting help: Barriers to forming care networks Theme 3: The ordinary becomes the extraordinary: Everyone doing a little bit makes a broad and strong net What the networks did: The tasks of caring Life, in a sense, just continued on: Keeping things normal Theme 4: Its a process of transformation: developing death literacy It was a joy and a privilege: Transforming the literature through alternative stories of care Transformative effects on individuals: developing knowledge and skills Changes in attitudes to death and dying? Rippling out: Developing a communitys capacity to care All these new people: Ive just got to know them Stronger, closer, deeper, warmer Changes in family relationships Outside of family Negative effects on the relationships Conclusion and future directions Key findings Theme 1: It takes a community: Each and every one of you had this little part to play Theme 2: Resisting isolation and staying connected: Enablers of caring networks Theme 3: The ordinary becomes the extraordinary: Everyone doing a little bit makes a broad and strong net Theme 4: Its a process of transformation: Developing death literacy Looking forward: Its about the community caring Epilogue References Appendix 1: Focus group schedule Appendix 2: Interview schedule individual carers and mentors Appendix 3: Information sheets and consent forms examples Appendix 4: Publications and Conference Papers Notes

26 26 28 29 30 31 33

33 34 37 38 38 40 42 43 44 46 47 47 48 49 49 49 49 49 49 50 51 52 56 57 58 64 65

Bringing Our Dying Home: The project at a glance

Overwhelmingly peoples desire is to experience dying and/or death at home, suggesting an urgent need to examine community-based approaches to end-of-life care. This study does just that as we shift the attention from the needs of the terminally ill person and carer to the wider, informal caring community. This report documents the Bringing Our Dying Home: Creating community at end of life research project, a two-year qualitative project undertaken by Home-based care at end of life offers the opportunity to reconceptualise dying as the business of individuals, communities and societies, including, but not constrained to, the provision of palliative care. (Rosenberg 2011, p. 27) 8

the Social Justice Social Change Research Group (UWS) in conjunction with the then named HOME Hospice (now LifeCircle) and Cancer Council NSW. Historically, end-of-life (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 effect of networks that are established, or strengthened, as a result of caring for a person who has chosen to die at home. We wanted to understand, from the point of view of carers and their caring networks, how being involved in caring for someone can positively impact family, friends and the wider community. Using photo voice and network mapping in focus groups (n=9), interviews (n=8) and workshops (n=2), we collected 94 visual and oral narratives of caring and support. The age range was seven to 90, and groups comprised two to 17 people. Specifically we asked:

How communities come together as informal networks of carers

What is the form and nature of these networks? What did people do to care? What are the effects on the informal network, or community, in caring for their dying people at home?

Overall findings
While most people in Western countries continue to say that they would prefer to die at home there continues to be a large discrepancy between this preference 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). This type of death can mean that people die badly in places not of our choosing, with services that are often impersonal, in systems that are unyielding, struggling to find meaning in death because we are cut off from the relationships which count most to us (Leadbeater & Garber 2010, p. 18). That most people do not experience dying and/or death in places of their choosing is an astonishing fact; a fact that, collectively, we are either ignorant of or just silent about. It is a fact that speaks to our failings as a society at a time of life that occurs for each and every one of us. Clearly research, policy and service provision in Australia are failing to meet the needs and desires of the majority of people. The reasons for this failure are beyond the scope of this report but our findings lead us to ask the following questions:

What if we refocused 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 if we provided evidence about how people already care for each other and members of their community, and we made public their knowledge about what to do and how to do it? A clear finding in our research was that people often thought they were not allowed to die at home. What if it were general knowledge that you were allowed? What if we had a national conversation about EOL and place of death within the framework of social justice? It is unjust that the majority of people want to die at home, yet this choice is not supported. It is time that the kinds of death we the living are prepared to tolerate, imagine or realise (Buchan, Gibson and Ellison 2011, p. 4) became a topic of public debate and scrutiny. The March 2011 edition of Cultural Studies Review and the 2011 HOME Hospice conference Live, Talk, Die are initiatives that have begun this debate in an Australian context. What if the Home Death Movement (of which there is undoubtedly a global one), named itself as such and claimed a place at the decision-making table? 9

In the research reported here, we found that people can and do care for their dying at home with the help of informal networks of community members. And they do it well. This is not to say that it is easy: its not. However, people overwhelmingly felt privileged and honoured to be involved in a caring network at EOL. Participants successfully mobilised and negotiated complex webs of relationships and engaged in acts of resistance to the Western, expertbased approach to EOL care. The knowledge and skills they developed as a result of the experiential, embodied learning about caring at EOL contributed to the development of social capital and community capacity for the people in this study. Peoples relationships, on the whole, increased and intensified, and these changes were maintained over time. The informal caring networks and relationships underwent transformation as a person was supported to die at home. This transformation 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 informal caring networks are sustainable and the people who provide unpaid caring are not exploited and isolated, informal carers and networks need supporting. Carers need permission and practical hands-on help to gather caring networks together and to negotiate the type of help they need. LifeCircle (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 facilitating and supporting informal caring networks from a community development or health promotion perspective. 10

This research contributes significantly to the growing body of research and practice that refocuses EOL care from 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 from this research is an indepth understanding of the role and nature of informal care networks in EOL care at home. The 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 of life. That will require the creation of a network of health and social supports so that people can die at and closer to home, with the support of their family and friends, as well as professionals. (2010, p.18)

Key findings and research 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 of people working together to enable someone to experience dying and death at home. These communities, or caring networks, comprise an extraordinary set of complex relationships that are continuously negotiated during the process of caring. Both primary carers and members of the network conceptualised these networks as comprising core and outer networks that played different 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 often associated with caring by working hard to stay connected with each other. The people doing this work included the carer, members of the caring network and the dying person themselves. Central to staying connected was clear and controllable communication, often using technology to good effect. In all but one of the focus groups there were people who had previous experience of being with a dying person and they were motivated to use their knowledge and experience to help support others. Additionally we found that humour and remaining light-hearted enabled people to stay engaged in the process of caring.

many then took into other networks and communities. We found evidence that social capital was increased as a result of caring and that the communitys capacity to care improved. We found, overall, that peoples and communities death literacy developed as a result of their experiences. In reality these themes are not as discrete as we have made them here, with many overlaps and interconnections.

Note on style Theme 3. The ordinary becomes the extraordinary: Everyone doing a little bit makes a broad and strong net (FG 3)
Here we found an overwhelming diversity of caring tasks people engaged in. It was clear that providing what was actually needed, not what people assumed was needed, was the key to successful support. We also found that the main motivation for the tasks people engaged in was to keep life as normal as possible for the primary carer and immediate family. The style of writing in this research report may differ from some readers expectations. This is intentional on our part. In our writing up of the research we aimed for accessibility in our writing style. In the pursuit of democracy and the sharing of knowledge we believe that the results of research should be as accessible to as many people as possible. You will see that excerpts from the transcribed data and photographs are woven throughout, as we wanted to keep the voices of the participants central. In order to protect peoples privacy, all data excerpts are identified 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 were titled by research participants. See page 20 for more information. 11

Theme 4. Its a process of transformation: Developing death literacy (FG 3)

Being part of a caring network was, without exception, transformational at individual and collective levels. People developed knowledge and skills about caring and about the process of dying that empowered them and that

Background to Bringing Our Dying Home

In Australia about 140,000 people die each year and 75 per cent of these deaths are expected (Palliative Care Australia, 2004). Most people, therefore, need some form of end-of-life (EOL) care, with up to 90 per cent of people with a terminal illness spending most of the final year of life at home (PCA, 2004). Informal caregivers are central and essential to this EOL care (PCA, 2010; Thomas et al, 2010). The average length of community-based palliative care is 119 days, of which 117 days of care is provided by family, friends, 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 The Hardest Thing We Have Ever Done: The Social Impact of Caring for Terminally Ill People in Australia. It noted that although 70 per cent of people die in institutions, up to 90 per cent of people with a terminal illness spend most of the final year of their life at home (Rumbold, 2010). Given this, the report outlined many issues for carers, such as adverse physical, social and psychological effects of caring such as stress, sleep disruption, fatigue, family and social isolation. This deficit or problembased approach to research dominates the research landscape. The few studies that have described the positive aspects of caring for a loved one with a terminal illness have noted an increase in personal satisfaction and 12

commitment, and caring as an expression of love and increased intimacy (Aranda & Hayman-White, 2001; PCA, 2004). Despite the overwhelmingly limited view of caring in the literature (see Foreman, Hunt, Luke & Roder, 2006; Hudson, 2003; McWhinney, Bass & Orr, 2005; Palliative Care Australia, 2005; Tang, 2003; Zapart, Kenny, Hall, Servis & Wiley, 2007) and the dominant experience of the terminally ill dying in institutional care, the vast majority of people continue to express a desire to live at home and die at home when they have a terminal illness (Hudson, 2003). Despite this, the majority of people in Australia die in institutions (Tabour et al, 2007). The most common reasons people are admitted to hospital are carer breakdown and symptom control. The concept of a good death appears to have been superseded by the concept of a managed death that requires professional support and knowledge (Kellehear, 2005) and takes place in a hospital or, more rarely, hospice.

Towards an alternative: Community responses to dying

Two 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 refer 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 refers to the individuals, networks of people, communities of friends and neighbours who, together, participate in the end-of-life care of a fellow citizen with a terminal illness. Presently the medical model

and the health service approach to palliative care dominate the community response to EOL care. There is, as a result, an abundance of research describing both carer and patient risk factors and the optimal kind of services required to support caregivers and people with a terminal illness they care for at home (see Foreman, Hunt, Luke, & Roder, 2006; Hudson, 2003; McWhinney, Bass & Orr, 2005; Palliative Care Australia, 2004; Tang, 2003; Zapart, Kenny, Hall, Servis & Wiley, 2007). The interaction between the community experience of death and dying, attitudes towards death and an aging population has sparked discussion about the sustainability of the current top heavy models of EOL care. There is growing acknowledgement about the lack of grassroots approaches to EOL care, raising concerns about the sustainability of current models of care and the professionalisation of carer and patient support. Additionally, a growing number of recent reviews of home death research have noted that future policies and clinical practice need to focus on empowering family members and providing community education about EOL care (Gomes & Higginson, 2008; Tang, 2003). Community development has been defined as any set of initiatives that develops the social resources of the community to enhance quality of life (Kellehear, 2005). Community development models compared to the medical and health services models have a distinctly different approach to end-of life care. Community approaches to end of life care are not new services. They are community members acting towards each other in new and constructive ways to improve their own capacity for end-of-life care. Any professional rationalisation of these changes into simpler

forms of direct services provision is a regressive and important threat to community empowerment (Kellehear, 2005 p. 100). In the Australian context, we are not aware of any documented programs with a community development approach that focus on EOL care to enable people to die at home. The dominant model of volunteering in palliative care is the co-ordinated team of palliative care volunteers who provide a range of services for the terminally ill and their carers. They provide services such as transport, respite and emotional support, and while these services certainly support carers, they exist to support the provision of formal palliative care services. In contrast, community development approaches invite active participation and exist to enable ordinary people to work towards the common goal of 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 of the goals of the community development approach is to help individuals and communities develop sustainable ways to care for their dying by building social capital.

The love shared between mother and son

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Building social capital

Because the term social capital has been used widely and rather loosely, we need to explain how it is defined and used in this research. Following Putnam (1993), social capital is often defined as those features of

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 often use methods involving attitudinal surveys, in the micro approach the outcomes are a matter of empirical investigation and attitudinal data is usually rejected as too subjective (Adam & Roncevic, 2003). Because the present research aims to identify the changes in the size, strength and nature of networks of people involved in caring for 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 benefits 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 feelings and attitudes arising from their experiences within the network.

Dianne wanted a gravestone with hands in prayer so they gave her photos to choose from

social organisation, such as trust, norms and networks, that can improve the efficiency of society by facilitating coordinated actions. However, other theorists, including Coleman (1988) and Putnam (2000), see social capital as a resource (often the primary resource) that is open to all groups and communities. Certainly, there is evidence that social capital is capable of producing a variety of positive outcomes beyond economic advantage, such as improved health and wellbeing (Halpern, 2005). While many studies of social capital take a macro or economic development view where the emphasis is on the functioning of whole societies (e.g. Putnam, 2000; Woolcott & Narayan, 2001), the micro position as presented by Lin, Cook and Burt (2001), focuses on specific networks and the benefits

The Mentoring Program

The original HOME Hospice Mentoring Program is an example of a community development approach to EOL care in the Australian context. The program, now run by LifeCircle, has been in operation for over 30 years for carers who want to care for a terminally ill person at home. The HOME Hospice model is about education and learning, building community, developing and strengthening the bonds between people such as family, friends and neighbours [and] is about building the capacity of the community to care (HOME Hospice, 2008). Mentors, once invited by a carer, act

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as a guide and support person. This approach generates social capital through communitybuilding as the mentor assists the carer in mobilising their personal community. The mentor helps the carer to organise this network of friends, family and neighbours, as well as providing education and a context for this personal community to be involved in the care of a person dying at home. The programs focus is therefore on the informal 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). In July 2011, HOME Hospice and the organisation Life Goes On merged to become LifeCircle. In this edition of Bringing Our Dying Home, we mainly refer to the organisation as HOME Hospice as this was its name at the time of the research. In current contexts, we refer to the organisation as LifeCircle.

HOME Hospice aims to generate social capital through community-building and mobilising the carers personal community. This community capacity-building approach to EOL care is a unique model within the Australian context and served as the initial focus for this study, which aimed to understand how a person dying at home can strengthen, build or transform 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 field of research in the literature on caring.

Methodology and methods

Objectives of the research
To

understand how being involved in caring for someone dying at home impacts on family, friends and the wider community.

To

At the time of the research, HOME Hospice was partnered with Cancer Council NSW. As LifeCircle, this partnership continues. It has a clearly defined program of support for carers looking after 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 of Professor Allan Kellehear (2007), who acknowledges that the establishment of networks and development of trusting and caring relations are important goals of community development programs at EOL.

collect narratives of caring networks regarding the quality and effect of social networks that are established, or strengthened, as a result of a person dying at home. contribute to knowledge about a community development approach to EOL care.

To

Our research questions

How do relationships and social networks change as a result of being involved in caring for someone in their home? What is the nature of these relationships? How does being involved in a caring network affect peoples attitudes towards dying at home? 15

Research design
To answer these questions we used a creative qualitative approach employing the techniques of photo voice and network mapping, combined with group and individual interviewing. The research was designed to be as inclusive as possible. We held the view that caring for someone at the end of their life, either as a primary carer or a member of the caring network, is an emotionally charged and complex experience. As such we used methods that enabled the research participants to choose their level of participation when speaking of their experiences. As researchers we needed to be particularly sensitive when asking people to talk about emotional issues that could leave them feeling vulnerable and exposed. Methods needed to be employed that could enable participants to remain in control, as much as possible, and to hopefully flourish as a result of the researching process (see Horsfall & Titchen, 2010). Creative, qualitative research methods are increasingly being employed in such situations (Horsfall & Welsby, 2007; Davidson, 2004) to provide conversational spaces for people to speak if and how they want about deeply felt issues, enabling researchers to understand what matters and is important to participants, and why. Creative methods can also enable people to notice what has become familiar and everyday, to get beneath the surface of things, and articulate the familiar (Halen-Faber & Diamond, 2002). This is important as social relations are often invisible, not talked about, or are seen as an unremarkable part of peoples everyday lives. The methods of photo voice and participatory network mapping enabled us to carefully and sensitively document these subjective experiences in this research. 16

Recruitment and participants

Four types of participants took part in this study. Firstly, primary carers and their support networks who had a relationship with HOME Hospice via a community mentor (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 for someone at EOL at home, or have previously cared for them. In total 94 people participated with ages ranging from seven to 90, representing 17 caring networks. The number of people attending the focus groups ranged from 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.

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 of the HOME Hospice general information to carers package. In order to opt in, people contacted HOME Hospice about the research project. If, on this contact, they were prepared to be involved in the research, their permission was sought to forward their contact details to the researcher(s). Opting in was entirely voluntary and without coercion. Participants in this group were from the Greater Sydney region only. This recruitment strategy

involved attending HOME Hospice staff meetings, establishing relationships with current mentors, and employing a research assistant who was a volunteer community mentor. Four of the resulting focus groups were with primary carers and their networks, and were organised primarily with the carer. The fifth was instigated and organised by a young person with motor neurone disease.

their experiences of caring, and these photos were used in a group brainstorm exercise that helped elicit knowledge from the group about the supports, services and caregivers needs when caring at EOL. Working within a community development framework, it provided an overall impression of what the networks look like and what it takes to mobilise formal and informal networks.

Participant Group 2: Individual interviews with mentors and carers

The HOME Hospice mentor has the personal experience of caring for a loved one and providing mentoring support to caregivers and the personal communities of people living with a terminal illness at home. Information about the project was sent out to all mentors associated with HOME Hospice, inviting them to participate in the research. Six mentors responded. All were from the Greater Western area of 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 4: Primary carers and their support networks who had no relationship with HOME Hospice
In July 2010 Cancer Council NSW provided additional funding for us to widen our participant sample. This was in response to the difficulties we had experienced in recruitment for Group 1 and the fact that we were interested in discovering how people who were not associated with HOME Hospice mobilised care networks. Recruitment for this group took place through the local media in the Sydney metropolitan and Greater West region. The University of 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 if they wished, again an opt in process. This proved to be a successful recruitment strategy, with 42 people contacting us over a six-week period. While many of these people fell outside the scope of the research (the person they had cared for had died more than three years ago, they were not able to bring together their support network for a focus group, and/or they wished to complain about local services), we did secure four focus groups in this period. Three of these groups were in NSW and one in the ACT. 17

Participant Group 3: Workshop participants

Through HOME Hospice and Cancer Council NSW networks, two workshops were conducted by HOME Hospice, one each in Western Sydney and the Northern Beaches. The purpose of the workshops was twofold: firstly they enabled local HOME Hospice mentors to get to know the researchers, and secondly they were able to experience firsthand a modified version of the photo voice and focus group method. The workshop invited participants to take photos to represent

Methods and analysis

Participants were given cameras two weeks before focus group meetings and asked to record the significant care and support activities they engaged in. The visual data (photos) was then discussed and analysed by participants in a series of in-depth interviews or focus groups. The focus groups and interviews also included a network mapping activity in which participants were asked to draw maps of relationships pre and post-care, indicating via coloured textas the strength and intensity of relationships. These maps were initially analysed by participants in the interviews/focus groups. The research team conducted a thematic analysis of the recorded 18

data. This involved a dual approach: enabling themes to emerge and purposively looking for 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 different from the procedure usually employed by network theorists (Knox, Savage & Harvey, 2006), which utilises individual questionnaires in which participants list names and identify relationship strength through a Likert scale or similar method, and the information is collated and analysed by the researchers with no participant input. Network mapping has

not been used in the context of EOL caring. Nevertheless, the advantage of the group approach to network mapping in this research was that participants saw the results and gave interpretive feedback about the nature of the networks and any changes they saw occurring in size, density and strength of relationship. Hence the participants provided a first level of analysis of the maps during the focus groups and interviews.

Focus group procedure

The focus groups and interviews often took place in peoples homes, usually those of the primary carers, around a table and usually with food. They lasted between two to five 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. The conversations were often filled with equal measure of laughter and tears as people spoke about some of the most intimate moments of their lives. The focus 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 for them, and to give the photo/s a title. The discussion began with people explaining their photos and the title (or caption) they had given them. This then led to in-depth discussion of significant caring activities and the role of the caring networks (see appendix 1 for schedule of questions). The second activity was network mapping in which two large pieces of butchers paper were used to draw maps of networks and relationships pre- and postcaring. This mapping was facilitated by drawing two network maps on butchers paper: one representing the network before

caring, the other after caring. People wrote their names (or had their names written) on the paper, then different coloured pens were used to connect people together: red for a strong connection, blue for medium and yellow for light. We were worried at the outset that people might feel confronted with having to describe a relationship as yellow, or that differentiating between the types of relationships might be difficult. However, this was not so (apart from one of our youngest participants who made all her lines red). People got it quickly, and this activity was usually one of 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 different and what did this mean to them? This activity was usually very quick and chaotic as people covered the pieces of butchers paper. While in most cases participants drew the maps, the researchers drew the maps if requested or if people were hesitant.

Interview procedure
Interviews were semi-structured, and lasted for about one hour in the home of the participant. We asked mentors to describe their experiences of caring and of mentoring. One mentor chose to respond to us in writing via email. We also interviewed two carers (one current, one past) about their experiences of caring. Both carers had initially responded to participating in the research project and requested individual interviews rather than focus 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. If they did not wish to do this, they were asked to orally describe changes in the networks. (See Appendix 2 for interview schedule). 19

Ethical considerations
There 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 information collected. Second, it was important to get peoples consent to be involved. All participants signed an information sheet/consent form at the beginning of focus groups/interviews or workshops that provided details about the project, the use of photography and what would be done with data collected. (See Appendix 3 for samples of information sheets and consent forms). For those participants who were under 18 they and a parent or guardian signed on their behalf. When looking through photographs, people were also asked to remove any that they did not want to be used further in research. These were destroyed. All the photographs in this report and in other publications are used with the permission of participants. The project received UWS ethics clearance prior to commencement.

With participants consent, interviews were audio recorded and later transcribed. The 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? This was an emergent, data-driven process. At the same time we conducted a theory-driven analysis: how did the data answer our research questions? What were the omissions, things not said that we expected due to our knowledge of the current theory and literature, and what was said that we did not expect? This combined process was lengthy due to the in-depth nature of the data.

Findings and discussion

Four themes emerged from the verbal and visual data: It takes a community, Resisting isolation and staying connected, The ordinary becomes the extraordinary, and Its a process of transformation. These are discussed in the following pages along with a number of sub-themes. The themes are illustrated with data quotes and photos from participants. The photos with captions are ones chosen by participants during the focus groups. Those without captions have been chosen by us as representative of a theme, or point, we are showing. The themes demonstrate a rich and complex description of both the everyday tasks of caring and how caregivers manage the informal and formal networks in order to continue to care at home. All of this has a cumulative effect in which caring networks are transformed through relationships,

Data analysis
The first level of analysis took place in the focus groups/interviews in which participants were asked to give meaning to their photographs and the network maps. This was in order to gain the stories of participants and to understand what was important to them, in terms of caring, the generation of social capital and the development of communities at this time. 20

knowledge sharing and the feeling that people are supporting each other in something extraordinary. So community can come from friends, family, neighbours, but it can also come from people you dont know very well ... and its different for every family and Im yet to experience anyone who doesnt have anybody. (M 3)

comprised: family, friends, work colleagues, neighbours, community and service groups, and professionals. What did surprise us was the inclusion of pets, the importance of global and virtual networks, and the seemingly complex nature of relationships that people mobilised and negotiated.

Every Wednesday

Theres a strength in numbers (FG 2)

Family members such as siblings, spouses, children and parents were central to all of the networks we spoke to, with immediate family attending focus 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 family was the support network: the network of care and support was the family (FG 6), and for another caring brought the immediate and extended family closer together: I think it was a coming together. A coming together of the family not just the immediate family but the extended family aunts, uncles ... whatever our differences may have been, during this time we all came together and did whatever we could not only for each other, for Mum and for Dad. (FG 4) 21

Theme 1: It takes a community: Each and every one of you had this little part to play (FG 8)
The terms community or networks of carers/support networks can run the risk of being so broad as to become bland and meaningless (Kellehear, 2005). These terms, while debated in the academic literature, had meaning for participants who were clear and articulate about what a network/community was and who was included. They were also very clear about its importance in the context of caring: its central to everything that weve been doing (FG 7). Here we spend some time describing what is meant by care networks from the perspectives of the people we spoke to. Unsurprisingly, perhaps, this description

Friends were differentiated as either friends of the primary carer: my friends didnt really know Mum very well but they all came and did a chore to help me (M3), friends of the dying person: she obviously had lots of people around her who loved her very much and who were willing to use that window of opportunity that they had to spend time with her and to do things for her because this is where she wanted to be (FG 9), or friends of family, particularly school friends of the children of the primary carer. Work colleagues were central to the care network: it would have been very hard if both Teds and my work (places) were not as good as they were (FG 2), and were often relied upon by the carer who needed to trust: that they would rise to the occasion and do that and of course they did and its just wondrous and so good (FG 7). Work colleagues were also differentiated between those of the primary carer and the dying person. This is well illustrated in the following quote:

Interestingly, a close review of the data shows that neighbours were not talked about a great deal. Perhaps this is because being part of a caring network at such an intimate time of life means they were perceived more as friends 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 for them (FG 7). Community organisations such as churches or spiritual groups were able to mobilise and organise support for the carers families: Beryl and her (church) group we came home one day and there were big containers of pumpkin soup that these young teenagers had made (FG 2). People spoke of their church sending out email alerts for prayer, or at weekly services providing the congregation with updates and reports regarding what the family 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 after him and send someone to take him out for a couple of 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 different reactions from the workplace. (People from) my work went out and bought masses of frozen food, soft drink, wine, fun stuff 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 of pasta and pasta sauces. They arrived on the doorstep which is that photo of ... our receptionist with all our frozen food. Teds office arrived with a $700 bottle of Grange and a bunch of flowers, which was also lovely but it was a different reaction. (FG 2) 22

LEFT: Walking the dog and talking RIGHT: Life goes on for the rest of the family

I was there or not so it was a routine (M 3). For one focus group the local shopkeepers also played an important role in the caring network: there are particular shopkeepers for the aged in that area who actually look after them. Who really do (FG 7). While we did not specifically ask about professional support from palliative care teams or the health profession more generally, in two of the nine focus groups health professionals were present: Im one of the palliative care nurses (FG 9), illustrating their central role in the support network as far as the carer was concerned. The professional support from GPs who often: 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 fantastic. They got involved with the family nothing was too much. They were so helpful to my mother my mother was 48 when my father passed away. It was a very hard time for her, financially as well, What are we going to do. Three kids and all the rest of it but the nurses said, Look, well

take care of 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 for them and if they had to stay longer they would. (FG 5) Possibly there was a great deal more to be said about the helpfulness of professional support, but not much more was said. This is probably because this type of support was not within the scope of the study and we did not ask direct questions about professional support. However, it can be seen from the above quotes that this level of support and care was vital in providing a safety net for 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 relief and that we had some professional help (FG 9). While pets were not a universal theme across all groups, they were spoken about at three focus groups as central to the caring of the dying person, and were seen as vital for the family and close friends who visited the house. In three of the groups animals were present throughout the focus group. Indeed for one of the groups, the family dog could be heard contributing at poignant moments. When pets were spoken of it was with such 23

intensity and regularity that we have included them here as part of the caring network. They were seen as good listeners, allowing people who were caring to connect, or grieve, or just be, perhaps providing much needed space from the intensity of the caring relationships. There was always the sharing of the pets and the discussion of 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 of 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) 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 feeling and feel like youre not being questioned for thinking the way you do. Theres no speaking back, it is just there to let out what youre thinking. (FG 1) Pets also provided care and comfort to the dying person as well as members of the family and caring network: The cat used to sleep with Ted up in the bedroom when Ted would lay down during the day (FG 2).

Diagram showing the various layers of support. Drawn by participant during a focus group

outer networks. Both the carers and the people comprising the care network made this distinction. The ability to see and be seen as belonging to a different part of the network and what this entails, demonstrated the complexity of the networks, how they comprise themselves, how they act and how they are used by the carer/s. The core and the outer networks could not function without each other, demonstrating a sophisticated set of relationships. Below a member of a care network describes the nature and roles of 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, affirming, being a sounding-board, doing some of the work, providing food, reflecting, driving, shopping, that kind of thing. Then there are these people who can be strangers ... that come in [with] the

You were absolutely crucial (FG 8): Core and outer networks
What was interesting to us as we read the data was peoples clear differentiation between what we now call the core and 24

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 family daughters, spouses, children of the dying person, and/or long-term friends. The network members often consciously decided what level of support they could give, and where they then fitted within the network, as shown below: Yes, I decided that I would be a sounding board for Deb. Any time she rang, wed talk so I tried to be in contact and talk but I did feel conflicted about not doing some of the physical caring and I knew that that was needed ... it felt like being a second tier support role to play. (FG 8) When the emotional need for 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)

medical information and assessment, the practical equipment and knowhow and the respite if 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) The 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 different types of emotional and physical support. The carer in particular used the core and outer networks differently: Yes, well I wanted to keep a public face. I wanted to keep like, Im doing OK. Then thered be other people, like maybe Shelia and Carol, who Im not

The core and outer networks then were not haphazard groupings of people; they were deliberate and conscious both in how they comprised themselves and how they were used. 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 of it but with all the support that I got so its important to know this and that theres a network out there. (FG 5). 25

We were interested in how participants defined their own caring networks based on their actual experiences of being part of one. It became clear to us that participants had a sophisticated understanding of the complex web of relationships that comprises a caring network, and that they were able to mobilise, negotiate and maintain many of 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 beautiful because its a photo that says were not keeping her to ourselves. Were not isolating were sharing. Were bringing in friends, were having a moment. This is a celebration of the life that is and that is going to be. (FG 9). 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 for you and not just say theyll be there for you. They do things sometimes without you even noticing and dont expect to be appreciated. (FG 2) 26

Much of the literature on caring talks about the potential for social isolation and disconnection, especially for the primary carer (PCA, 2004; Hudson, 2003). People in this research were aware that isolation could be damaging for themselves, or their family members and friends 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 of and their pain and loss of leaving the family (FG 4). They were equally clear that no-one could do this particular work of 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. There were things that all of you did and all of you gave and was just crucial in that process of [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). The 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 of 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? If so, who did the work? What enabled caring networks to be connected?

Its worth making the effort

People spoke about their desire to keep connected either for themselves as carers, or for the dying person or both. A strong

theme in interviews and focus groups was the belief that community and social connections were vital to peoples wellbeing, and that they are desirable for the dying person and the carers. The dialogue below illustrates that connections often needed to be worked at: Sara: One of our tasks has been to maintain connections with the outside world ... which didnt happen very often if we didnt provide that opportunity or provoke that opportunity ... Kerrie: You made the extra effort to build these connections. Sara: Yeah ... Dawn: One of the things that was built into Dads package was that the person who came in on one day of the week would take Dad with him to go and get the Friday fish and the fruit and some milk or bread or whatever ... so that was putting the connection between Dad and his carer with each of those ... Sara: Dad and his community and keeping him engaged with the outside world. Kerrie: Keeping your Dad engaged what difference 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 of communicating and maintaining those connections. (FG 7)

into the dying persons care plan. In the above example it was important for this family that the person being cared for continued to be an active and present member of their community for as long as possible: taking Mum to places taking her because she couldnt get there herself (FG 9). On occasion, physical changes to the house enabled this to continue: this ramp helped Deanne get out and about (FG 4). The above quote also shows how informal caring networks can make strategic use of services, linking informal and formal caring networks. When getting out and about was no longer possible due to increasing frailty (physical or emotional), then the family and/or members of the caring network took the community into the home. In the example directly below, people from the caring network came into the home to support the carer, with a flow-on positive effect for the person being cared for. called it Joy for a couple of reasons. One was that a group of us school mum friends had come ... because she [carer] couldnt come and have coffee. 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 of it and the other part was Clares (dying person) response to
I

Remaining connected was an active task that took: hours and hours of phone calls (FG 7) from members of the family and was built 27

Dad waves to the camera, while Mum has a rest

the smell of that and they looked really good and yet when it came to giving her one she didnt want it but the whole excitement and joy of that. (FG 1). In other examples groups of people came to be with the dying person: everybody came out here (FG 3). Sometimes the social connections of the carer enabled them to organise a group of people to come into the home to provide entertainment for the dying person: We play a lot of music and Deidre used to come up and wed play music at the pub. Deidre used to come for several weeks and sort of sit and listen and then one night she said to me, How could I get some of these people to come to my house and play this music for Mum? A group of us did come down, and we had a great time, and I think she had a great time too. (FG 9)

Agency of the dying person

While in the examples above it was family members, the primary carer and/or people in the caring network who worked at enabling and maintaining connections, it would be a mistake to assume that the person being cared for was a passive beneficiary of social connections. We were surprised at the extent to which the dying person took control and did the work of keeping social connections alive, directly or indirectly: Ive got friends with young kids. I know their time is really stretched. For example, Petra can work on her laptop in my lounge room and so I ask her to give some respite when Mum and Dad are out and shes only down the road. There are some people I dont organise. Jan and Greg gave me the emergency button; I did not ask them for it. I try and think how they can help me

We had happy hour at six oclock at her bed and she never drank, ever, but she was happy to know that I had a glass of wine. So it was my husbands job to call in home from work with a bottle of wine and everyone knew that that was the good time to come. So they would all walk in, get a glass of wine and come and sit by the bed and Mum used to wake up and make sure my glass was full and then go back to sleep again. She loved the fact that I was being nurtured and looked after because I was caring for her. (M3) 28

without me wearing them out ... I try and organise a win/win situation. (FG 3)

Clear and controllable communication

Clear and open communication, especially from the primary carer/s and/or the dying person was spoken about as enabling people in the caring network to provide support. Members of the network believed it important to be kept informed: we never felt shut out ... by being kept informed we felt like the doors were open for us to be in contact (FG 2). Being kept informed enabled them to feel included, and thus able to stay in contact and provide support. Members of the care network also found it easier to provide support when they trusted the carer/s and/or person being cared for to ask for help when needed: we like to know that you will call us if you do need us. It puts my mind at rest knowing that any one of you will give a shout if 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, if he needs to go to sleep. Its good for people to offer (to come round, do this) and, if hes tired, hell say, No. Come in an hour or ring me later. People neednt be afraid to have an idea to just mention it. It might not be convenient (for example) today because theres an appointment or something, but we can jot it down (for later). (FG 3) The use of technology is clearly linked to open communication. By this we mean landline phones, mobile phones and computers. Computers enabled community

to come into the home, with email messages often being received from around the country and the world. It was clear that emails and texting were new and very useful forms of communication for the carer and the care network. They could be a useful and appreciated means of staying in touch with the person being cared for, especially as people became more frail and unable to physically see too many people. Emails were a particular expression of the community coming into the home, to continue to be with the dying person. These types of 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 powerful level of support and meant that communication channels could be kept open in a quick and efficient way: 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 forgot to take a photo of that. (FG 2)

Email messages from overseas were so important

29

and checking how she was, how you were. Mum loved ringing her sisters as well and that still continued. You can probably confirm that Aunty? Having chats with Mum on the phone. (FG 4) Technology enabled networks to stay informed and in touch, enabled people to give and receive support from anywhere, at any time, reminding us that caring networks do not need to always be physically present to be doing the work of caring: I tried to take a picture of the computer screen of the email messages because Teds cousin, Brenda, in England and his brothers and a lot of friends overseas and in Australia used to email Ted. He would get a lot of strength from those emails. Some were long, some small that was very important for him because towards the end he didnt want to talk to people except for the chosen few. It was too hard too much energy but he loved getting the text messages and emails. (FG 2)

One person did resist getting a mobile during the time of caring as they feared being overwhelmed by phone calls, showing that communication can become another difficult task to be managed. The landline telephone was also seen as a vital link to networks and family, and provided a much-appreciated means of 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 of the girls visiting. It was a lot easier ... I think it was significant that people were ringing 30

Being light-hearted (FG 3)

This sub-theme captures a less tangible enabler of establishing and maintaining a caring network. While there is no doubt that caring for someone at EOL is hard work emotionally, physically and spiritually a sense of fun, or play, was apparent in many of the stories: There was laughter too. You and Pete made everybody laugh, as usual. (FG 2)

Have you ever seen Death at a Funeral or something like this? It was just like that. Completely farcical 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) There was lots of laughter and lots of storytelling. It was very noisy; it was like being in the middle of a henhouse. (FG 7) And with the laughter sometimes, theres an aspect of 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 airconditioning 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 of people would think we were being very irreverent laughing ... but we couldnt help ourselves. You have to see the funny side ... it was like a release valve. (FG 5) Humour being able to see the funny 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 for people and provided a different quality to the caring relationship. In many ways this is an alternative story of caring. Stories of caring are often focused on the difficult and dark times, of which there were many for our

participants. And while people often shed tears in the focus groups and interviews, there were as many examples of laughter as people told these alternative stories.

Weve been there before (FG 5): Previous experiences

I had a reasonable amount of experience with dying people because Id nursed my mother at home until she died, for six months previously to that. So I had gone through that whole experience of having someone close to me die at home and that was a very good experience. (FG 8). When someone is dying you have just got to be there for people. You cant go in there with ideas; you just go along and sort of feel your way. (FG 5)

In many ways this sub-theme also fits with the transformational effects of being with someone who is dying. People used their previous experiences to support others in the work of caring, either directly in doing the hands-on tasks, or as an advocate in resisting the health system when necessary. Their literacy about death the skills, attitudes and knowledge they gained, whether from positive or negative experiences appeared to provide them with the ability and motivation to be central members of further caring networks, enabling: maybe a bigger support because of the related experiences (FG 4). Members of eight of the nine focus groups had previous experience with the death of someone close to them. This 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). 31

The then HOME Hospice (now LifeCircle) mentors we interviewed were mentors because of the personal experiences that they used as the foundation to support other carers via their work for HOME Hospice. Five out of the nine focus groups, plus the two carers we interviewed, had used a HOME Hospice mentor for support to a greater or lesser degree. One group felt that they were well supported already through their existing networks, so did not make full use of the mentor: We had loads of networks. I think thats why we didnt use our HOME Hospice mentor very much because we had this very strong inner core group more family than anything else and then we had the outer core group. They werent really outer they were still very close the mums from school, parents like that. Then we had the Internet: cyberspace calls.(FG 2) Another group talked about how HOME Hospice enabled the carer to support her mother to die at home: I was at a friends place and I was reading an ad in a local paper about caring for the dying at home. I found it and cut it out. Clare was still at home then and I thought it might be something for 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 of support when my husband was sick. (FG 1)

In many ways it seems that the role HOME Hospice played was as a safety 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 confidence to undertake the caring tasks: I think people get frightened 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 from just knowing that HOME Hospice was there, combined with the physical presence of the mentor: In fact, when HOME Hospice came on the scene and I understood their philosophy and rationale it was also a great comfort because their avowed purpose was to assist people to continue having the support and encouraging others, if you like, to support us like friends and family to come in and be part of the family. That just gave me a great deal of heart, and as things did get harder and harder I just found 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 of time within 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 felt at the time and Ive not changed my opinion very effectively. (C1) HOME Hospice also provided information people found useful to use at home, in their own time:

32

Then I looked for help and found 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 for dying and how to care for someone. Armed with those I managed to care for Mum until she died at home, which was a great experience for everybody: her family and me, and it was our first experience, but a great one. (M3)

Determined to cope without getting help: Barriers to forming care networks

Despite the almost universal recognition among participants that staying connected was essential for carers and the dying person, we did identify a number of barriers to caring networks being established or being able to function. Some people were determined to cope, fearing the judgement of others if they asked for help. An experienced mentor said: What I noticed was the universal reluctance to ask for help ... perceptions of what that might mean in negative terms about ... their ability to care sufficiently (M5). This could lead to people wanting to do: it all himself and he found it really hard (M4). In one group people had been offered help but the family resisted: people coming into the house when your husbands not well (FG 6). This could be compounded by carers narratives of 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 of their help or feeling proud or not feeling proud Im

fine, Im fine (FG 4). Or it could be that people who want to help dont know what to do, or how to offer 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 for at home were elderly, their friends and neighbours were often 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 of these reasons led to one of our focus group participants asking: so what do you do ... you pull back, but then that leads to a sense of 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 for someone. It is a small section as this was not a strong theme. The majority of participants were part of a caring network and did ask for, give and/or receive support. This was to be expected as the design of our research was such that we purposefully sought to speak to people who had been part of a network of 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 for yourself and thats where the load comes. So being able to give away some things reduces that. Cos if youre trying to carry everything ...(FG 1) 33

Practical stuff mainly, such as sitting with someone talking to them, cooking, cleaning, mowing the lawns, doing the running around, taking the children, making phone calls, which is huge I think, to stop the carer from having to constantly reiterate ... What else? Taking them to and from hospital, sitting with them so the carer can get out and have a coffee. Whatever it be anything. (M2) At the outset of this research we believed it important to operationalise caring. There 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 friends, family, neighbours and work colleagues actually do? We believe this is important information. If people are to help, then it is useful to know what people find helpful. If people are to resist being isolated as they care for someone, then what are the tasks people do to help them resist this? Initially it was difficult to get the caring network to talk about what they did to help, with comments such as I did nothing or Julie (carer) was extraordinary (FG 1). We wondered if this hesitation was due to a deep respect and admiration for the primary carer; a desire not to diminish the work the carer had done, or a feeling that what other individuals had contributed was insignificant compared to the overall work of the carer. Often it took the carer to begin to discuss the tasks they had found helpful and/or the tasks of the caring network became apparent in the discussion of the photographs. Eventually we elicited narratives of caring in which the tasks people did to support the dying person, the primary carer and families, emerged. Overall 34

the narratives showed that the tasks of caring were as diverse as the number of people in the research. This cannot be overemphasised, with people saying: everyone dies differently and has different needs (M3), and: its no good telling them to meditate when a good bottle of wine is what they need (M3). We found that while there was a wide diversity of tasks, there were also some commonalities. Food, for 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 of the breadth of 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 information for carers and caring networks. So, with a desire to be both interesting and useful, we have chosen to present this section in the following ways: The photographs illustrate tasks that people chose to talk about. We have not been able to include all of them, but we have included those that came up the most often for discussion.

We have included quotes where people reflect upon these tasks or quotes that encapsulate the commonalities or differences in the focus groups and interviews.

We then go on to discuss the theme of life goes on, which people spoke about in relation to why they provided support, and what they were hoping to achieve.

Their families were amazing. If Sharon ever needed taking anywhere or brought back I never had to think about lifts there were people who would magically appear to ferry her around without me having to ask.(FG 2)

With the jug Mum used to love a cup of tea thats why ... wed get the jug on and make a cuppa. (FG 4)

I drove him to therapy because they told him he shouldnt drive after chemo. A couple of times I took him there and drove him back ... I did a lot of driving with them while Mum was with Dad. Took on a bit of responsibility driving the car around. Thats why I chose the keys. (FG 2) Like, the postie brought us the mail ... hed just hop off his bike and come to the door because the door was open so that was the mail one. Then my sister-inlaw would come down and do the washing, the vacuuming, feed the cats ... Games playing board games. (FG 5) She didnt need massage or meditation lessons, she needed firewood. (M3) 35

Practical stuff mainly, such as sitting with someone talking to them, cooking cleaning, mowing the lawns, doing the running around, taking the children, making phone calls, which is huge I think, to stop the carer from having to constantly reiterate ... Taking them to and from hospital, sitting with them so the carer can get out and have a coffee. ... Anything. (M2)

Id just like to thank our builder up here too. Hes not only a wonderful friend but has put wheels on the billiard table, a door down the back, built the veranda. (FG 2)

Well, obviously when Mark 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) Yeah. Well, I came to be with him ... but in terms of what I can do, I can be with that sort of process with the person and just be totally present with whats happening. (FG 8)

36

Life, in a sense, just continued on (C1): Keeping things normal

Even though the work of caring could be hard, or there has been a shitty result today (FG 2), the caring network most often saw their role as striving to keep life as normal as possible, or business as usual with a few modifications (FG 3), for carers and families. The following dialogue illustrates this well: Pat: Gina has more activities per square inch than any child Ive ever known. Arthur: Thats the heart of the family too. Youve got to give Jude time as well and youve got to keep Ginas normal life still functioning. 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 fan and all the rest of it. We helped Gina with homework numerous assignments and different challenges ... and cooking, grocery shopping, things like that. Wed just go and buy bags of groceries and bring it down. (FG 5) This striving for normality in the most extraordinary circumstances was also seen as important for the dying person: I think she wanted to feel normal as well (FG 9).

She still had contact with the real world because she would want to know what we were having for dinner, what went on in the kitchen. Were her boys being fed and who was bringing what, so ... it gave her normality. She could still be the mother of the house.(M3) One person even felt that this normality contributed to the person living longer than expected: Stuart lived a lot longer than everyone expected and I think thats because of that normality and friends dropping in. (FG 5) 37

In fact the literature would back this up, suggesting that staying socially connected, just being in the presence of friends, contributes to wellbeing and longevity (Zunzunegui et al, 2005; Maier & Klumb, 2005). People certainly did not want to be felt sorry for: they didnt treat me any differently which was good. Just being able to go out and have a normal night out not feeling sorry for me they treated me the same and that was good (FG 2).

Theme 4: Its a process of transformation (FG 3): Developing death literacy

I feel the superficial differences which may have mattered at some stage or been an obstruction to the closeness that we all like to share, just dissolving, and its a process thats going on an interior process that affects us all in different ways. I think thats what were talking about a process of transformation. (FG 3) Without exception all participants spoke of the transformative effect of being involved in a caring network at the end of someones life. Transformations occurred in peoples skills and knowledge about death and dying; about the tasks of caring for people and about being a good friend. Attitudes to death, in particular dying at home, were changed. In fact a great deal of experiential learning took place at an embodied and emotional level. This learning, we believe, is what led to the transformative process described in the quote above. In speaking of transformations, we also noticed that people told a great many stories 38

about what it felt like to be involved in caring for someone at EOL. We include these descriptions of feelings here as they transform the literature on caring, which is for the most part full of stories of loss, burden and stress (Bee, Barnes & Luker, 2008; Stenberg, Ruland & Miaskowski, 2010). We then discuss the transformative effects on individuals and highlight what enabled learning to take place; what people did learn and what effect this learning has had. In the final section we discuss the transformative effects on the caring networks. Here we focus on the collective changes in the network and relationships within the network, which also changed through the process of caring. We have named the collective nature of these transformations death literacy. This is an extension of the health literacy framework (Speros, 2005) that acknowledges that poor knowledge of health has a negative impact on wellbeing. Our research has found that being involved in caring for a person who is dying extends the knowledge of people who participate in caring networks. People described increased knowledge and skills and personal resources, from gaining knowledge about the care of people who are dying through to practical knowledge such as now knowing that it is possible to die at home; the experience has improved the death literacy of the community because people tend to share this knowledge with each other.

It was a joy and a privilege (FG5): Transforming the literature through alternative stories of care
It was a privilege to walk with Jude and Stuart in this and a joy despite the fact that Id give almost anything for

Stuart to still be here and hes not, but still it has been a joy. (FG 5) There is this joy that is within this household despite grey hollows. (FG 3)

the overall experience being one of intimacy, for which people were grateful: Im so grateful for having that time I cared for my Dad (M5). While love would be an emotion you would expect from direct and close family, members of the caring network also spoke of love, loving the experience, or a quality of love in the home: The love was there and I dont know if I did or he did but it was like pure, beautiful, elevated space or something where the worlds meet. The other world, the mystery, the unknown, whatever you call it, heavenly realms something. Theres more than we see. So it was about being in that space with him, which I loved. (FG 8) This quality was apparent to visitors and health professionals: And the other thing that used to happen was, that doctor, and I think even the palliative care people who came in there were a few people whod come in and talk about that quality of love. There was an energy here that belonged with the dying and its one of the reasons why Ive invited you because you were caring for Peter up in his room (I havent changed those curtains yet, theyre really, really old curtains), but there was this golden glow in that room. There were different things going on that arent here now that theres not a dying person here. It was that quality of calm and love, which is why when some people came in and they didnt have that quality; it was just hard to have them here. So that the qualities that we have and that we bring in when we are visiting people 39

It would be tempting to think that talking about feelings could be idealised and perhaps even sentimentalised. We did not find this. The quotes above show what we found: people were able to talk about their feelings 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 profound nature of their experiences. When participants spoke of their feelings in being with the dying person they said they felt: incredibly honoured ... honoured that she would let me into that space to sit with her (FG 1). For this person it was an honour to just be allowed to sit with the dying person. Another participant spoke of it this way: theres something that the space was alive with ... love, light, mystery, something ... and so I really enjoyed that (FG 8). For other people the nature of the care people were receiving from friends and family was overwhelming: he was dying and it was happening in a really beautiful way in terms of his care and everything (FG 8); I think overwhelming in as much as the love and support that everyone showed the whole family (FG 9). Honour, joy and even enjoyment are not the sort of narratives we usually hear in research about caring for a dying person. In fact the following quote shows that this participant was aware that this was not the usual way to speak: Its a terrible word, but it felt special. I dont know how you can think that somebody being so sick was special but it was very special (FG 2). These feelings led to

are just so crucial. Like I said, I dont know how you ask a dying person, What do you want to happen around you?. (FG 8) In many ways this quality of love appears to be an outcome of the day-to-day tasks of caring, of connecting with people in a compassionate and helpful way. And, as is shown in the stories above, this was seen as beneficial for the caring network. They appreciated the opportunity to be allowed to provide care and support. Again this was not in any romanticised way. Often the tasks involved were difficult and nerve wracking for people sometimes pushing them to the edges of their competence: it was a bit nerve wracking ... what do you do to help? What do I do? Tell me what to do? (FG 1). However, the sense of personal fulfilment that came from rising to the challenge was undeniable as the following shows: I feel absolute gratitude to be able to participate in those experiences. I felt really honoured and privileged ... the person thats giving actually gets a lot out of it. (FG 5) I was giving Joan, who had had a percutaneous endoscopic gastrostomy, which is known as a PEG tube inserted in her stomach because she was unable to eat. She was nil-bymouth and in fact everything daily nourishment prescribed by the dietician including all her medication had to be given to Joan via the PEG tube the gastrostomy. That, I regarded in many ways, as one of the greatest privileges of my life, that I could administer that, do it effectively in accordance with what medical needs there were. (C1) 40

The research literature about EOL tends to emphasise the burden and challenges associated with caring. This research has brought to life stories of gratitude, love, privilege and intimacy as people come together to care for someone. The challenges and hardship associated with caring were also discussed, however there was a sense that these were mediated by support from family and friends and the wider network.

Transformative effects on individuals: Developing knowledge and skills

I came into it not knowing you could care for somebody at home but she was dying and not dying fast enough for the hospital system and they kept sending her home and taking her back in and then sending her home again because they needed the bed. And it was very distressing and, without any knowledge, I decided that we could do better and brought her home ... I managed to care for Mum until she died at home which was a great experience for everybody: her family and me, and it was our first experience but a great one. (M3) While all but one of the focus groups had members who had previous experiences with people at the end of their lives, for all of the primary carers this was their first experience of caring for someone dying at home. People reported that they did not know you could die at home or: what options were available. I didnt realise you could get a nurse to come in. I didnt know there was HOME Hospice (FG 1); they didnt know how to do the

physical tasks of caring or what to expect as the person neared the end of their life. The quote above captures both the distress this lack of knowledge can cause as well as the satisfaction felt when this lack of knowledge was overcome and the person was able to manage. The above quote also shows a recurrent theme in the data; that the hospital system was at best unsupportive and at worst obstructive of peoples desires to care for a loved one at home. You were absolutely ... totally determined that he was going to get the best possible and whatever it took you were going to see it through and you were not going to be bullied by any doctor or system or anybody who said something wasnt possible. (FG 8) Resisting the system and fear of not knowing took great courage and: enormous determination not to be sidetracked (FG 8). And this is where both the core and outer networks came into their own. They helped with the multiple tasks of caring as we have seen; those with prior knowledge shared their knowledge: you kind of gleaned bits from everyone who came in youd learn something else about what could be done (FG 8), and carers quickly learnt who to ask for what sort of help and information. The learning that took place was on the job, experiential, requiring the active support of others in the caring network, and while certainly challenging, people reported an overwhelming sense of achievement and satisfaction:

I also think we too were fortunate. Ive grown a lot or learned a lot all the stuff I know now that I had no idea about. Makes a really big difference. (FG 8) Theres a selfish act in caring for someone because something in yourself grows and youre learning more about what it is to live when youre caring. (FG 9) Not to be afraid of being on the journey with people you love. The physical things that happen arent pretty but you can get through it and come out with more memories, more joy, more shared times, and those are precious. You need the support of others to make it happen. (FG 2) What is particularly hopeful in these stories is the evidence that people do have the ability to do it their way, and step outside the institutionalisation of dying. The 94 people in this research have shown that even with no prior knowledge or special set of skills, they are more than able to care for someone at the end of their life, at home. They demonstrated time and again that they could ask for information and that they could learn complex physical and emotional caring skills. And they remind us, again, that it takes a community of people to achieve this. These new skills and knowledge are clearly developed as a part of participating in care, and/or caring for the carer. The quote below is from a person who was part of a core network. They had previous experience of family members dying in hospital and this experience motivated them to be involved in caring for someone at home: 41

Cos you could ask anybody in the street, What do you think about ... how do you feel about dying what would happen if someone died tomorrow, what would your part be in it? Shed probably say, Well I wouldnt know cos Ive never done it. Do you see what I mean, but they probably know hundreds of people around them who have died but theyve never participated in it. (FG 5) Clearly it is in the acts of participation, or doing the work of caring, where knowledge and skills are developed by all in the caring networks.

involved in a caring network, a number of participants stated that: Id always thought hospital was the only place you could die (FG 2). As the quote at the beginning of this section shows, this belief could also be held by people who were at the end of their lives. The mentor reflecting on this, above, draws attention to the historical nature of this belief, stating that in her mothers lifetime people have moved away from dying at home, into dying in hospitals a belief backed up by the literature. This is indeed what has happened in Australia (Kellehear, 2007). The alternative stories of people who cared for someone at the end of their life, at home, shows that on the whole the experience demystified death, and located it within the experience of living: Pat: It also demystifies death because often in a hospital theyll shove people out as death approaches. Arthur: Especially children. Brook: The information is not out there because people just shut away from death. Nobody wants to talk about it. Nobody knows what to do if it just happens there and then. Pat: Yes, but thats because it has not been part of normal life you see.
(FG 5)

Changes in attitudes to death and dying?

Even Mum did not think she was allowed to die at home, she thought she had to go to the hospital to die and yet she was an elderly person who probably saw people die at home when she was young. (M3) This sub-theme is directly related to one of our research questions. We wanted to know if and how being part of a caring network impacted on peoples attitudes about death and dying. While we did ask this question of people directly, it was not a strong theme. That is, while people answered the question, there was limited discussion about the topic. By far the most common response to our question, Have your attitudes to death and dying changed as a result of your experiences?, was that people now knew that you could die at home. Prior to being 42

My children were with me and my husband when he died. We were all there and when I said, Dads gone now, they said, No, he hasnt, he hasnt cos he looks just the same. But he had you see and they were surprised because they didnt know what they expected but they didnt

expect it to be so normal and his death was actually easy it wasnt a sort of gasping-for-breath, horrible, painful experience. (FG 5) An extension of demystifying death and dying is the ability to talk about these experiences. In this research 94 people did just that! However, a strong theme in the data was the belief that, on the whole, people do not like to have these sorts of conversations, as exemplified below: Some people wont say the word, death. When did your husband pass?, someone said to me. I said, Institute or Chartered? Why use a euphemism? To me, Max died on Saturday lunchtime, not Max passed on, moved to the next life, or whatever. People dont talk about dying. (FG 5) Being able to talk about these experiences, and finding the right language, may also help in future experiences. An experience is just that, unless reflection on that experience takes place, transforming it into learning and possibilities for future actions. People did report that the experience encouraged them to reflect on their previous experiences as well as planning for their own dying, which they thought was a positive thing. I took home with me my responses and talked about it with my husband and that then started us talking about when Father died. It forces you to deal with your own experiences and talk about that as well, which I think is a good thing. (FG 1)

It has made me think about things you can put into place. What youd like to happen. (FG 2) Of course being part of an interview, or focus group, also provides the opportunity for people to reflect upon what they have been through and what this means to them. While some found the whole experience very confronting and would not want to go through this (FG 1), for others: Its changed my idea of how Id like to end my life (FG 2). Caring does appear to increase peoples knowledge and change their feelings toward the act of caring at EOL and toward the process of dying; this can be talked about as a change in attitudes to death and dying. Overall, the experience appears to have made people reflect deeply on previous deaths they may have witnessed or participated in, as well as providing possibilities for them in the planning of where they would like to end their life and how. This certainly demonstrates a change in peoples knowledge and feelings about dying, particularly place of death possibilities.

Rippling out: Developing a communitys capacity to care

While it is undoubtedly useful for people to develop their own skills and knowledge about death and dying, there is a danger that this development stays at the personal growth stage. While this would be powerful for the people who have undergone this experience, in terms of contributing to the wider community, or developing a communitys capacity to care, this personal development needs to ripple out into the broader community in material ways. We have already written, in this report, about people using their previous experiences to support others as part of a caring network. This is one example of rippling out. 43

Being part of a research project that makes private experiences public and open to debate, scrutiny and learning, via written reports, conference papers, and journal articles plus perhaps impacting on policy decisions of partner organisations, is another such example of rippling out. We found evidence in this research of people expressing a strong desire to: help everyone and anyone to draw support and information from Lornas and my experiences (C1). The HOME Hospice community mentoring program relies upon this desire to recruit and maintain mentors. Other people who may not see themselves as being directly involved in care networks mentioned rippling out strategies, such as sharing of information, providing feedback to their health professionals, visiting hospitals and even writing a book: Id now like to write a book. I now know if thats happening to someone else I might have a bit of a think about what these people need, how do they want to do it and if they want to do it the way we did it. (FG 8)

being part of an informal caring network has impacted on her work with others: the stuff that you taught me I want you to know that Ive built myself up a lot in caring for my old people at work (FG 9). If a community is to develop its capacity to support the caring of those at EOL, it needs knowledge and experience, a sense of empowerment and supportive social structures (Kenny, 1994; Mayer & Rankin, 2002), and, as noted above, these have been lost due to the medicalisation of death. Kellehear (2005) notes that genuine community development and community capacity-building can enhance the ability for knowledge to be developed and stay present within the community, because people have had the chance to become aware of their own abilities, knowledge and skills. He argues that this process allows communities to utilise available support systems, problem-solve, make decisions, and communicate and act more effectively. This research begins to demonstrate how communities actually do this at EOL, and is, we believe, a significant contribution to our understanding of and knowledge about developing communities at EOL.

One person in particular has become a much sought-after advocate in her local area, working to support others to care for people at home: Im very proud to see her as an advocate for other people and using her experience to be an enabling thing in community for others (FG 5). While for other people their experience has influenced study and career decisions: Im just currently finishing Cert 4 in Aged Care and the main module of that is palliative care and once I finish that, thats the field Id like to follow through (FG 9). And in another example, an allied health professional has found that her experience of 44

All these new people: Ive just got to know them (FG 2)
Without exception the caring networks changed as a result of the process of caring. These changes took place in the intensity and quality of relationships as well as the number of relationships people had. After reading the previous sections, it is probably not surprising that peoples relationships with each other changed as result of being in a caring network, and that these changes appear to be maintained over time. Our

BEFORE CARING

AFTER CARING

BEFORE CARING

AFTER CARING AFTER CARING

interviews and focus groups took place at least one year after the death of the person being cared for, except for one group where the person was currently being cared for by family and friends at home. To begin with we want to talk about the increase in the size of the networks as a result of caring. Here we are drawing upon social capital literature, which emphasises that communities are made up of a series of interconnected networks (Crowe, 2007; Leonard & Onyx, 2003). Petra: I tell you what there are 10,000 songs, 10,000 stories Blake: Oh and 10,000 poems Petra: There is. Look at the connections there are millions of stories! (FG 9)

What we were interested in was mapping these networks as they were before and after caring. We were interested in the participants interpretations at this stage, not ours. Above we have included examples of the actual maps drawn in two of the focus groups. Then we include some of meanings that people made of these maps. It was immediately clear that the networks all increased in size as a result of caring for someone at the end of their life, at home. The networks just got bigger. When talking about this change in size people spoke about increased number of friends and the communities they were now part of, highlighting changes in individual and collective relationships: 45

These sorts of things do broaden your community and your support. (FG 1) Weve made these great friends. (FG 3) It has introduced her to people who are part of her life who might not have been. (FG 5)

asking me how I am, how Rose is. And she said they obviously talk to each other and talk to the town because everyone goes through the community centre and people actually stopped in the street and spoke to her again. (M3) In one group the primary carer stated that the size of the network had stayed the same, despite the network maps showing the contrary: I think from my point of view it has stayed much the same. That is a credit to Liam. I think Liam has been the anchor pin in this situation and it is a credit to him that my relationship and those of Deannes brothers and sisters have stayed the same. (FG 4) As can be seen from the quote, though, the person felt that this was a positive thing; perhaps they had been expecting the relationships to deteriorate as a result of the person dying?

These changes appear to have been maintained over time: Well the community has got together. Friendship. Its not just weve done a good deed and now its the end of that. Weve actually continued the friendship afterwards ... In fact she and her husband and son are still very close friends and we do see each other socially and keep in touch. (C1)

Stronger, closer, deeper, warmer

Bringing family together in a normal setting

The impact of this on one person in particular was poignant: She felt no longer alone any more. Even though she was miles out of town she felt that someone was at the end of the phone. And the next thing she said was that in town people no longer crossed the road to avoid her because she said for three years people avoided her not knowing what to say. But she said now I am talking to the ladies in the community centre, people are

Theres a lot more red now. There is probably only a handful of people Ive become a lot closer to. Jacky is definitely one of them. I didnt know her very well three-and-a-half years ago but were a lot closer. We meet up a lot I know her kids. We talk about a lot of other things, whereas our connection was Beth and Ted before. We talk about our work and other things we probably wouldnt have talked about before. (FG 2)

46

In addition to the networks growing in size as a result of caring, the quality and nature of the relationships within the networks changed. Again this was clearly apparent to people as they compared the before-caring and after-caring network maps. People immediately commented that there were: more, stronger connections (FG 1). Overall people felt that they became closer: its more intimate. More intimate relationships (FG 3), and that the: intensity of relationships has changed (FG 1), evidenced by them seeing each other more often than they did, and talking about more personal issues than before caring. This change in size of the network also had a feeling quality to it: it just looks like everyone loved me more (FG 9). Interestingly, when discussing the maps in focus groups and interviews, the talk shifted from core and outer networks to changes in the nature of relationships within the families of the primary carers, and outside these families.

overall theme is one of caring bringing the: family ... even closer (FG 4). Even though people may already have had strong, familiar relationships prior to caring, their shared experiences seem to have brought them closer together: weve always relied on each other but this really cemented it (FG 6). In one group people stated that their relationships had not changed, they were strong before and they remained strong after caring: my relationships with my sisters since has remained the same, neither being strengthened or damaged by the experience, but its strong (FG 5).

Outside of family
Changes in relationships outside the immediate family of the carer could be said to be another example of the rippling-out effect of the work of caring networks. Again people spoke of becoming closer and talking to each other about: our work and other things we probably wouldnt have talked about before (FG 2). As relationships were strengthened, friendships grew: Its lovely to see it grow friendships that have grown. Were getting to know people more (FG 3). The strong theme here was that being part of a caring network resulted in people knowing more people and 47

Changes in family relationships

Within the family, while there were stories of difficult times and disagreements, the

having more friends, and this could have a cumulative effect as this quote from a carer shows: After Joan died, George and I continued our friendship and likewise George with Leon he kept in touch. He was a strong family man with grandchildren ... to my great delight and joy, and also to Leons, he moved over into an area just near us ... only half a kilometre away. That sealed, cemented the friendship even more and we used to meet for meals. He introduced me to friends in his new area and likewise I used to go with him to meetings and earlier this year we went to a couple of games of the Sydney Swans at the Sydney Cricket Ground. (C1) This carer remained close friends with someone they had not known previous to caring. They were now part of a new family network with partners, children and grandchildren, and they had become active in the community together, going to meetings and enjoying outings to the cricket. The following quote also shows how relationships continue to flourish and can be across generations: My relationship to the community network after the death is I have a strong one with the carer, which will probably continue, and with the husband and the kids theyre pretty strong ... As for the dying persons friends, I now know them (M1)

Negative effects on the relationships

While overwhelmingly the data showed that the networks grew in size and in intensity of relationships, there were some stories of loss of relationships as a result of being part of a caring network. Again this was not a strong theme, but we include it in order to capture the complexity of relationships involved. People did speak of tensions between siblings and family members regarding the type and place of care provided: wasnt always easy though. I experienced with you some very negative stuff from other family members. Stuarts brother, sister, mum they didnt want Stuart to go home. (FG 5) My sisters and I had very different ideas of how we might approach these different things so naturally, being sisters, we would sometimes argue about this and debated how we might better support my Mum, but also how we might meet some of our own needs. So there was tension there sometimes. (M1) While these two quotes speak of tensions, it is not clear if these resulted in changes to the relationships as such, or were just part of the day-to-day negotiations involved in caring for someone at the end of their life. Other comments were clearer and certainly show drastic changes to relationships: I had a girl I thought was a close friend ... rather than being a good support she alienated me. She wasnt there. I was quite surprised. (FG 4)
It

48

I sent her [the neighbour] home ... she still hates me because of that. Thoughtless, random crap. (FG 6)

Theme 2. Resisting isolation and staying connected: Enablers of caring networks

People resisted the potential isolation and social exclusion often associated with caring by working hard to stay connected with each other. The people doing this work included the carer, members of the caring network and the dying person themselves. Central to staying connected was clear and controllable communications, often using technology to good effect. In all but one of the focus groups there were people who had previous experience of being with a dying person and they were motivated to use this experience to help support others. Additionally we found that humour and remaining light-hearted enabled people to stay engaged in the process of caring.

Relationships changed. People who were closer werent as close afterwards ... there is a group that became less close afterwards. Old friends stepped away because I was no longer a married woman with a partner. I was a widow. (FG 7)

I lost my job (FG 6).

Conclusion and future directions

Key findings
Our key findings were organised into the themes shown below.

Theme 3. The ordinary becomes the extraordinary: Everyone doing a little bit makes a broad and strong net (FG 3)
Here we found an overwhelming diversity of caring tasks people engaged in. It was clear that providing what was actually needed, not what people assumed was needed, was the key to successful support. We also found that the main motivation for the task people engaged in was to keep life as normal as possible for the primary carer and immediate family.

Theme 1. It takes a community: Each and every one of you had this little part to play (FG 1)
Without exception participants in this study believed that it takes a community of people working together to enable someone to die at home. These communities, or caring networks, comprise an extraordinary set of complex relationships that are continuously negotiated during the process of caring. Both primary carers and members of the network conceptualised these networks as comprising core and outer networks that played different, but vital and complementary, support roles.

Theme 4. Its a process of transformation: Developing death literacy (FG 3)

For the people in this research the result of being part of caring networks was, without exception, transformational at individual and collective levels. People developed knowledge and skills about caring and about the process of dying that empowered them and which

49

Hands on

many then took into other networks and communities. We found evidence that social capital was increased as a result of caring, that the communitys capacity to care improved, and that peoples and communities death literacy developed as a result of their experiences.

manage it. When caring generates social capital, it no longer just addresses a private need, but potentially contributes to a public good, a resource that can be used by the network or community members to address other community needs. It also models both the practice of caring and the caring society. Health and welfare services need to recognise the unique needs of people at EOL (e.g. Leadbeater & Garber, 2010). Ultimately, we aim towards Kellehears (2005) notion of the Compassionate City. Establishing, supporting and negotiating informal support networks is vital for the long-term sustainability of the growing home death movement in Australia. A patterned observation across all participants in this research was that they either had connections with HOME Hospice or they were part of an established community: most often this was a religious/spiritual community; for one group it was an intentional community. We also found that people who already have developed their death literacy through previous experiences play an important role in developing networks and supporting each other. However, there is also clear evidence in the literature that unpaid caring work in the home can be a barrier to community participation and can be a cause for social isolation (Ahmed & Jones, 2008; Leonard & Johansson, 2008). When considering the role of informal networks as a source of long-term care, it is important to ask whether these networks have the resources to sustain the high levels of care required by people, and their families, at EOL. In order to make sure that these networks are sustainable and that people who provide unpaid caring are not exploited and isolated, informal carers, and networks,

Looking forward: Its about the community caring (FG7)

Overall, we found convincing evidence that people can and do die at home, and that this can be done well as people are supported by a caring community of friends, neighbours, family, work colleagues and community members. We found that informal caring networks established during this time grow in the number and intensity of relationships, in effect increasing peoples friendships and sense of community connection. This demonstrates that caring, as part of an informal network, can develop the communitys capacity to care, ultimately leading to an increase in a communitys death literacy. Caring does not need to be a drain on social capital, as is usually suggested in the literature, nor does it need to be an isolating experience for either the carer or the person being cared for. Rather, caring can contribute to social capital with carers and the cared-for being part of a vibrant and growing network of relationships. Being part of a caring network for someone at the end of their life must be one of the toughest situations to manage in terms of growing social capital, but people 50

need supporting. Carers need permission and practical hands-on help to gather caring networks together and to negotiate the type of help they need. LifeCircle already provides community mentoring, which does just this. Some religious, spiritual and intentional communities also play this role. We would also like to see organisations that provide paid care at EOL take on an active role in promoting death literacy and facilitating and supporting informal caring networks from a community development or health promotion perspective.

walls are grey. Beth: Big king-sized beds and you all sit on it. Mitch: Its the comfort of your own home and everything. Not other people like nurses walking around. More personal. Beth: We werent interrupted. The animals were there ... Mitch: We werent told to turn the music down. Beth: It was a six-hour vigil from three in the morning. (FG 2) You all pitch in with shovels and take turns to fill the grave in. The kids sat around the edge and dangled their feet in the grave. I remember Lyn jumping up on top of the grave. Thats right I jumped on the grave! The girl dancing on her Fathers grave. I ran into Greg on the way in this morning. I was telling him where I was coming and he said his memory of that funeral is of you with that shovel (laughter). (FG 8) 51

Epilogue
During the process of our research many people told stories of being with their dying. We want to end by thanking people for telling us these stories. We wish to honour and remember the people who were cared for. Beth: So being at home meant that you could just come across the hall. You couldnt do that in a hospital, could you? Mitch: It is different being in his room instead of being in a hospital where the

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Horsfall, D. & Titchen A. (2010) Disrupting Edges Opening Spaces: Pursuing Democracy and Human Flourishing through Creative Methodologies. International Journal of Social Research Methodology, 12 (2) 147160. Horsfall, D. & Welsby, J. (2007) If Someone Actually Asked Us, Youd Find We Have a Lot to Say: Arts-based Inquiry with Women who have an Intellectual Disability. In Higgs J., Titchen A., Horsfall D. & Armstrong H. (Eds.), Being Critical and Creative in Qualitative Research (pp. 260-271). Sydney: Hampden Press. Howarth, G. (2006) Death and Dying: A Sociological Introduction. Cambridge: Polity Press. Hudson, P. (2003) Home-Based Support for Palliative Care Families: Challenges and Recommendations. MJA, 179, S35- S37.

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Leonard, R. & Johansson, S. (2008) Policy and Practices Relating to the Active Engagement of Older People in the Community: A Comparison of Sweden and Australia. International Journal of Social Welfare 17, 37-45 Lin, N., Cook, K. & Burt, R. (2001) Social Capital: Theory and Research. NY: Aldine. McWhinney, I., Bass, M. & Orr, V. (1995) Factors Associated with Location of Death (home or hospital) of Patients Referred to a Palliative Care Team. CMAJ, 152 (3), 361-7. Palliative Care Australia (2004) The Hardest Thing We Have Ever Done - The Social Impact of Caring for Terminally Ill People in Australia 2004: Full Report of the National Inquiry into the Social Impact of Caring for Terminally Ill People. http://www.palliativecare. org.au/Portals/46/reports/ CaringReport.pdf Palliative Care Australia (2010) Health System Reform and Care at the End of Life: A Guidance Document. Palliative Care Australia. http://www. palliativecare.org.au/Portals/46/ Policy/Health%20system%20 reform%20-%20guidance%20 document%20-%20web%20 version.pdf

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Appendix 1: Focus group schedule

1. Photos: People invited to view and informally discuss photo display over light refreshments. 2. People choose one photo that is significant for them and give it a title. 3. Group discussion of photos (these questions to be used as prompts and guides): What is your overall impression of the photos? What stood out to you/interested you? Do you think there are any connections/ similarities between some of the photos? Did any surprise you? Are there any that are different to the rest? What do you think the photos say overall? What do they say about community and social networks? What do they tell us about this experience and how we help each other? Are there themes or an overall message? Would you like to show us the photo you chose and talk about the title you gave it? 4. Network mapping: The aim of the network mapping exercise is to identify how support networks have changed as a result of participation in supporting the carer/caring for a loved one at home. Network mapping explores the amount of people involved in the caring and the number and density of ties within the network. Procedure A. Brief the participants Describe the two different maps that will be created; before and after, identifying where the line between before and after may be. 56

Before: at the time they became a part of the support network After: at the time of the focus group Discuss the use of coloured textas and measure of relationship in this context. Describe the mapping process, discuss the examples and the possible messiness or chaos of the process. Identify any housekeeping issues. The colours used will represent: ---------------- more of a relationship -----------------medium-level relationship ----------------- less of a relationship The coloured lines represent the relationship, which in this context is measured by: - Length of time knowing the person and/or - Intensity of the exchanges between one and other and/or - Type and variety of shared experiences. B. Network mapping BEFORE caring Ask each person in attendance to clearly write their first name on the page. Now ask each person in turn to draw a line to each other with an arrow indicating the direction of the relationship, using a coloured texta to indicate the measure of the relationship before the caring began. There may be no lines to some people as they were unknown to each other before, there may be more lines to the carer at this stage. Bringing the map to life. Now ask everyone to stand up, have a look at the map and give feedback. AFTER caring Ask each person in attendance to clearly write their first name on a fresh sheet of paper. Ask each person to draw a line to the other people they know and now know, again using

the colour of the texta to indicate the measure of the relationship after being involved in the care network. People may wish to add a person to the network that is not at the focus group, and then everyone is invited to draw on the measure of their relationship to these people as well. There may be a lot more lines on this map then on the previous one. Bringing the map to life. Now ask everyone to stand up, have a look at the map and give feedback. 5. Network analysis The following will be used as prompts and guides for the analysis.: What do you notice about your two pictures? Do you think your relationships have changed? If so, how? In what ways? Do you feel any differently about this community now? If so, in what ways? Do you think being part of this support network has had any impact on your relationships? If so, in what ways? Materials required - Two large sheets of paper (larger than butchers paper, spare in case of spillage etc) - Several sets of three coloured pens - Example maps and sheet of instructions - Voice recording equipment and omnidirectional microphone (still running from photo discussion) - Spare batteries - Laptop - Photos both hard copies and digital copies - Participant information sheets - Consent forms

Appendix 2: Interview schedule individual carers and mentors

Carers
The purpose of this interview is for me to understand more about your involvement in supporting people who are caring for someone who is dying at home.

Can we start by hearing your story about the first time you became involved in supporting a carer (or being a carer if appropriate)

Further questions:

Can you give me more details about your support activities? Who else was involved? What activities did they do? Often we remember things in images. Can you describe any key images from your caring activities? Who else did you have contact with as a result of the caring activities? If we were to draw a diagram starting with the people you knew before? Can you tell me something about your feelings at the time in terms of your connections to other people? What about now? Do you still have contact? How are the relationships? So afterwards you became involved in HOME Hospice. How was that? 57

Mentors
Now can you tell me about your experience of being a mentor What is that story?

Further questions:

Often we remember things in images. Can you describe any key images from your caring activities? Can you tell me something about your feelings at the time in terms of your connections to other people? What about now? Do you still have contact? How are the relationships?

What was the familys community like when you began with them? Who were the people that made up the support network in the beginning? What do you do to mobilise community? Can you give me more details about your support activities? What do other people do to support the caregiver? Who else was involved? What activities did they do? What did you notice about the relationships during the caring experience? Were relationships changed in any way, strengthened or lessened? Were there more or less people in the support network when the loved one died? Who came into the support network during the time of caring? Who else did you have contact with as a result of the caring activities? Did the caregiver or anyone in their support network say anything about the support network and the things they did for each other while caring for the dying person? Did your relationship with the caregiver/ support network change during the caring experience?

Appendix 3: Information sheets and participant consent forms examples

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Bringing our dying Home: creating community at end of life Research information
Stage 1. Photovoice taking photos of our caring experiences 1. You will be given disposable cameras, instructions and consent forms about the project for you and your support network. The cameras are for you and your support network to photograph what you think were significant tasks, events, people or experiences as you supported someone at the end of their life. 2. Over a period of 2 weeks, think about these caring tasks, events, people or experiences and take photos of them or something that represents that. 3. Make a list of the people in your care network and invite them to take photos of the things they did. It is important they have a read of the information, so give people the letter of invitation to support networks. 4. Make a date for the discussion group (about 3 weeks from receiving cameras; it can be in your home, day, evening or weekend) 5. Return the cameras for developing in time for the discussion group. You and your support network may already have some photos taken at the time of caring which we encourage you to include in the research if you would like to. What/who is the support network? The support network will be those people you identify, and can be any person who has provided support to you and/or your loved one. Support networks can be social or from your community and can include friends, neighbours, family, work colleagues or people that help out now and then. The type of things support networks may have done to assist you include: picking the children up from school; popping in for a chat; mowing the lawn; doing the shopping; providing some time out for the carer; ringing people up to see how they were going; organising projects and tasks that needed to be done. The research team can assist you in identifying who your support network was made up of and in coordinating them for the research. What if I dont want to do it, or change my mind? It is entirely up to you whether or not you participate in this research. If you do decide to be part of this research you may change your mind and withdraw from the research at any time during the project. You can talk to other people about this project if you wish and provide people with the contact details below if they would like further information.

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58

Participant Consent form - Carer Participant Consent form - Carer community at end of life Project title: Bringing our dying home: creating
I,[print name]______________________________________consent to participate in the Project title: Bringing our dying home: creating community at end of life research project titled Bringing our dying home: creating community at end of life. I,[print name]______________________________________consent to participate in the I acknowledge that: research project titled Bringing our dying home: creating community at end of life. I have read that: I acknowledgethe participant information sheet [or where appropriate, have had read to me] and have been given the opportunity to discuss the information and my read the participant information sheet [or where I haveinvolvement in the project with the researcher/s. appropriate, have had

read to me] and have been given the opportunity to discuss the information and The procedures required for the project and the time involved have been my involvement in the project with the researcher/s. explained to me, and any questions I have about the project have been answered to my satisfaction. The procedures required for the project and the time involved have been

explained to me, and any questions I have about the project have been answered to I consent to having disposable cameras in my home for myself and my support my satisfaction. network to use and to being part of a group discussion meeting. At this meeting we will be to having disposable cameras in my support myself drawing network I consent talking about the photos taken by my home fornetwork,and my support maps and talking about the nature group discussion relationships. I meeting we network to use and to being part of a and quality of the meeting. At thisunderstand that talking about the photos taped. I my support network, drawing network will be the meeting will be audiotaken by understand that some of the photos taken by and talking about the may be used by the the relationships. I publications. mapsmy network or myself, nature and quality of researchers in their understand I also meeting will be audio taped. I understand a person of persons permission that theunderstand that if a photo clearly identifies that somethatthe photos taken bywill be sought by the researchers beforethe researchers in their publications. I the my network or myself, may be used by that photo is used. I understand that researchers will not use any clearly identifies a person that persons permission also understand that if a photo photos which contain people who are not part of the support network. I researchers before that photos used. understand that the will be sought by the also understand that thephoto is will be Ithe property of the support network. researchers will not use any photos which contain people who are not part of the support network. I also understand that the photos will be the property of the I understand that support network. my involvement is confidential and that the information gained during the study may be published but no information about me will be used in any way that reveals my identity. I understand that my involvement is confidential and that the information gained during the study may be published but no information about me will be used in any I that reveals my can withdraw from the study at any time. wayunderstand that Iidentity. I understand that I can withdraw from the study at any time.

Signed:__________________________________________________________ Name:___________________________________________________________ Signed:__________________________________________________________ Date:____________________________________________________________ Name:___________________________________________________________ Date:____________________________________________________________

Participant Consent form - Carer Participant Consent Form

Project title: Bringing our dying home: creating community at end of life I,[print name]______________________________________consent to participate in the I,[print name)_____________________________ consent to participate in the research research project titled Bringing our dying home: creating community at end of life.
project titled Bringing our dying home: creating community at end of life. I acknowledge that:

read to me] and have been given the opportunity to discuss the information and I have read the participant information sheet [or where appropriate, have had my involvement in the project with the researcher/s. read to me] and have been given the opportunity to discuss the information and my involvement in the project with the and the time involved have been The procedures required for the project researcher/s. explained to me, and any questions I have about the project have been answered The procedures required for the project and the time involved have been to my satisfaction. explained to me, and any questions I have about the project have been answered to Imy satisfaction. disposable cameras in my home for myself and my support consent to having network to use and to being part of a group discussion meeting. At this meeting we I consenttalking about the photos takenby my supportand/or membersnetworkcarers carers network, drawing of my will be to having my photo taken by support and talking consent to the researchersof the relationships. I understand maps network. I about the nature and quality using specific photographs which identify me, as long as my carer has Iagreed to the use of this photo. The that the meeting will be audio taped. understand that some of the photos taken researchers have clearly explained how andresearchers in their publications. I such by my network or myself, may be used by the why they may wish to use any photo in their research publications. identifies a person that persons permission also understand that if a photo clearly will be sought by the researchers before that photo is used. I understand that the researchers will I can withdraw from the study people who are not part of the I understand that not use any photos which contain at any time, without affecting my support network. I also understand that the photos will be the in the future. relationship with HOME Hospice or the researcher/s now or property of the support network. I understand that my involvement is confidential and that the information gained during the study may be published but no information about me will be used in any way that reveals my identity. I understand that I can withdraw from the study at any time.

I acknowledge that: I have read the participant information sheet [or where appropriate, have had

Locked Bag 1797 Penrith South DC NSW 1797 Australia Human Research Ethics Committee Office of Research Services Building K1, Penrith Campus Tel +61 2 4736 2835 Fax +61 2 4736 2905

Signed: Name:

Signed:__________________________________________________________ Date: Name:___________________________________________________________ Date:____________________________________________________________

www.uws.edu.au/researchservices

Participant Consent form - Carer Participant Consent Form

Project title: Bringing our dying home: creating community at end of life I,[print name]______________________________________consent to participate in the I,[print name] _______________________________________, consent to at end of life.in research project titled Bringing our dying home: creating community participate the research I acknowledge that: project titled Bringing our dying home: creating community at end of life. I have read the participant information sheet [or where appropriate, have had I acknowledgeand have been given the opportunity to discuss the information and read to me] that: my involvement in the project with the researcher/s. I have read the participant information sheet [or where appropriate, have had read to procedureshave been given the opportunity to discuss thebeen The me] and required for the project and the time involved have information and my explained to me, the project with the researcher/s.project have been answered involvement in and any questions I have about the to my satisfaction. The procedures required for the project and the time involved have been explained toto having disposable cameras in my home forprojectand my support I consent me, and any questions I have about the myself have been answered to my satisfaction. network to use and to being part of a group discussion meeting. At this meeting we will be talking about the photos taken by my support network, drawing network maps to talking about the nature specific photograph which I understand I consentandthe researchers using aand quality of the relationships.identifies me. I that the the photograph and the I understand that clearly explained how have seen meeting will be audio taped.researchers havesome of the photos taken and by my wish to or myself, may be used by the researchers in their publications. I why they network use it in their research publication. also understand that if a photo clearly identifies a person that persons permission will be sought by the withdraw from the study at any time, without affecting I understand that I canresearchers before that photo is used. I understand that the my researchers will not use any photos which contain people or in the future. relationship with HOME Hospice or the researcher/s now who are not part of the support network. I also understand that the photos will be the property of the support network. I understand that my involvement is confidential and that the information gained during the study may be published but no information about me will be used in any way that reveals my identity. I understand that I can withdraw from the study at any time.

Locked Bag 1797 Penrith South DC NSW 1797 Australia Human Research Ethics Committee Office of Research Services Building K1, Penrith Campus Tel +61 2 4736 2835 Fax +61 2 4736 2905

Signed: Name:

Signed:__________________________________________________________ Date: Name:___________________________________________________________ Date:____________________________________________________________

www.uws.edu.au/researchservices

Appendix 4: Publications and conference papers from this project

Publications:
Horsfall, D., Noonan, K. & Leonard, R., (in press) Bringing our dying home: How caring for someone at end of life builds social capital and develops compassionate communities. Heath Sociology Review

Leonard R., Horsfall D. & Noonan K. (2010) Models of Caring from India and Australia and Their Relationship to Social Capital. Nepalese Journal of Public Policy and Governance, Vol. xxvi, No.3, June, pp.15-25.

Conference papers:
Horsfall, D., Rosenberg, J., Leonard, R. & Noonan K. (2012) Working together? How formal palliative support networks contribute to the development of caring networks for people dying at home. Death Down Under. Dunedin, NZ. June 28-29. Horsfall D., Noonan, K. & Leonard R, (2011). Bringing Our Dying Home: Creating Community at End of Life? Death Down Under. Sydney University. June 2011. Leonard, R., Johansson, S. & Horsfall, D. (2012) Bonding and bridging Social Capital between formal and informal carers in Sweden and Australia. International Society for Third Sector Research (ISTR), Siena, Italy, July 10-13. Leonard R., Horsfall D. & Noonan K. (2011) Using social network analysis to identify changes in social networks as a result of caring, 7th ISTR Asia Pacific Regional Conference Bali, Indonesia, November

Leonard, R., Horsfall, D. & Noonan, K. (under review) Identifying changes in the support networks of end of life carers using social network analysis. BMJ Supportive and Palliative Care

Johansson, S., Leonard, R. & Noonan, K. (2012) Caring and the Generation of Social Capital: Two models for a positive relationship. International Journal of Social Welfare 21(1) 44-52

Noonan, K., Leonard, R., and Horsfall, D. (2011) You cant do that! Researching alternative stories of community participation at end of life. Third Sector Review, 17:1, 75-89 64

Leonard, R, Johansson, S. & Noonan, K. (2009) Caring and the Generation of Social Capital: Models from India, Australia and Sweden. A paper presented at the 6th ISTR Asia and Pacific Regional Conference Taipei, Taiwan 1-4, November

Noonan, K. Horsfall, D. Leonard, R., & Read, N. (2011) Caring at end of life: networks, community participation and the development of social capital. 2nd International Public Health & Palliative Care Conference, Dhaka, Bangladesh., 21-23 January.

Notes

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