Kerrie Noonan

Circles of care: should community development redefine the practice of palliative care?

Specialist palliative care, within hospices in particular, has historically led and set the standard for caring for patients at end of life. The focus of this care has been mostly for patients with cancer. More recently, health and social care services have been developing equality of care for all patients approaching end of life. This has mostly been done in the context of a service delivery approach to care whereby services have become increasingly expert in identifying health and social care need and meeting this need with professional services. This model of patient centred care, with the impeccable assessment and treatment of physical, social, psychological and spiritual need, predominantly worked very well for the latter part of the 20th century. Over the last 13 years, however, there have been several international examples of community development approaches to end of life care. The patient centred model of care has limitations when there is a fundamental lack of integrated community policy, development and resourcing. Within this article, we propose a model of care which identifies a person with an illness at the centre of a network which includes inner and outer networks, communities and service delivery organisations. All of these are underpinned by policy development, supporting the overall structure. Adoption of this model would allow individuals, communities, service delivery organisations and policy makers to work together to provide end of life care that enhances value and meaning for people at end of life, both patients and communities alike.

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

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

Identifying changes in the support networks of end-of-life carers using social network analysis

End-of-life caring is often associated with reduced social networks for both the dying person and for the carer. However, those adopting a community participation and development approach, see the potential for the expansion and strengthening of networks. This paper uses Knox, Savage and Harveys definitions of three generations social network analysis to analyse the caring networks of people with a terminal illness who are being cared for at home and identifies changes in these caring networks that occurred over the period of caring. Participatory network mapping of initial and current networks was used in nine focus groups. The analysis used key concepts from social network analysis (size, density, transitivity, betweenness and local clustering) together with qualitative analyses of the groups reflections on the maps. The results showed an increase in the size of the networks and that ties between the original members of the network strengthened. The qualitative data revealed the importance between core and peripheral network members and the diverse contributions of the network members. The research supports the value of third generation social network analysis and the potential for end-of-life caring to build social capital.

Working together–apart: Exploring the relationships between formal and informal care networks for people dying at home

Abstract Introduction Informal caring networks contribute significantly to end-of-life (EOL) care in the community. However, to ensure that these networks are sustainable, and unpaid carers are not exploited, primary carers need permission and practical assistance to gather networks together and negotiate the help they need. Our aim in this study was to develop an understanding of how formal and informal carers work together when care is being provided in a dying persons home. We were particularly interested in formal providers’ perceptions and knowledge of informal networks of care and in identifying barriers to the networks working together. Methods Qualitative methods, informed by an interpretive approach, were used. In February-July 2012, 10 focus groups were conducted in urban, regional, and rural Australia comprising 88 participants. Findings Our findings show that formal providers are aware, and supportive, of the vital role informal networks play in the care of the dying at home. A number of barriers to formal and informal networks working together more effectively were identified. In particular, we found that the Australian policy of health-promoting palliative is not substantially translating to practice. Conclusion Combinations of formal and informal caring networks are essential to support people and their primary carers. Formal service providers do little to establish, support, or maintain the informal networks although there is much goodwill and scope for them to do so. Further re-orientation towards a health-promoting palliative care and community capacity building approach is suggested.

Informal caring networks for people at end of life : building social capital in Australian communities

The care of a person living at home near the end of their life is predominantly provided by family carers with the support of health services such as palliative care. In addition, informal caring networks also contribute at times to the support provided to the dying person and their carer. In this way, these networks can promote social capital in the communities from which they are drawn. This social approach to end of life care enhances community capacity to provide support to those dying at home and their carers. This article examines relevant published literature to explore the conceptual foundations of informal caring networks, examining the place of social capital and community development in the provision of end of life care at home, particularly in the Australian context.

Developing death literacy

Death literacy is defined as a set of knowledge and skills that make it possible to gain access to understand and act upon end-of-life and death care options. People, and communities, with high levels of death literacy have context-specific knowledge about the death system and the ability to put that knowledge into practice. Positioned within a public health framework, death literacy is considered an outcome of peoples experiences of and learnings about, death and dying. Death literacy also appears to be a resource that individuals and communities can use for their own benefit strengthening their capacity for future caring. This purpose of this paper is to explore the concept of death literacy using the evidence from a 6-year research project. We do this by examining how it corresponds to, and differs from, existing concepts and practices such as death education, health literacy, and community development. Our aim is to introduce new thinking into public health approaches to palliative care, offer practice development pathways in this arena and propose that death literacy offers a useful conceptual framework for both describing and understanding the outcomes of a public health approach to palliative care.

Home as a place of caring and wellbeing? A qualitative study of informal carers and caring networks lived experiences of providing in-home end-of-life care

Abstract Although the burden of caring is well described, the value of home as a potential place of wellbeing and support for informal caring networks when providing end‐of‐life care is not well recognised. Interviews and focus groups with 127 primary carers and members of informal care networks revealed their collaborative stories about caring for a dying person at home. Four themes emerged from the data: home as a place of comfort and belonging; places of social connection and collaborative caring; places of connection to nature and the non‐human; places of achievement and triumph. When support is available, nurturing carer wellbeing may be best achieved at home. HighlightsHome is central to a caring networks formation and function in end‐of‐life care.A primary carers ability to sustain caring can be supported when caring is at home.Maintaining identity, a sense of belonging and connections are central to wellbeing.Place is crucial to maintaining identities and connections.Nurturing carer wellbeing may be best achieved at home.

Identity and the End-of-Life Story: A Role for Psychologists

Objective Narrative approaches to identity, which conceptualise a persons identity as their life story, present a useful way for approaching support at end‐of‐life because they do not pathologise dying but rather recognise it is the final chapter of a life story. The construction of life stories is always a social process and could be supported by psychologists. Attention to issues of identity and relationships is beneficial for dying people and their carers and counteracts the medicalisation of dying. The Caring at End‐of‐Life Research Program identified the support necessary from family, friends, community, and professionals for people to die at home, which is the preference of over 80% of Australians. Identifying the current and potential role of psychologists is the present focus. Method Qualitative analysis of eight service provider focus groups (88 people), 13 focus groups with carers and their support networks (n = 84), and individual interviews with carers (n = 23), and community (n = 17) was conducted in urban and rural New South Wales and the Australian Capital Territory. Results End‐of‐life transition was achieved without loss of identity when relationships with people, places, and objects which sustained identity were maintained. Carers required knowledge, skills, and adjustments about which psychologists have expertise such as emotional work, supporting networks, resisting pressure from medical staff, and adjustment at death. However, no psychologists attended the service provider focus groups and carers identified only three psychologists among 58 service providers. Conclusion Psychologists could play a valuable role by recognising end‐of‐life as a major transition and assisting with identity maintenance through that time.

OA46 Dying to know day: a public health campaign in australia.

Inspired by the book ‘Dying to Know,’ Dying to Know Day (August 8) is an annual day of action dedicated to bringing to life conversations and community actions around death, dying and bereavement. In Australia, 75% have not had end of life discussions, less than 10% have an advance care plan and 45% die without a will. The Dying To Know Day initiative encourages grassroots action to change these statistics by encouraging people to develop their death literacy, make their end of life plans, share these wishes with their families and get informed about end of life and death care options such as dying at home, home and community led funerals and natural burial. 2013 The GroundSwell Project successfully piloted and evaluated the concept and in 2014 the initiative grew significantly in size to 65 community events and over 120 personal actions across Australia. This presentation will provide an overview of this public health initiative and its outcomes over the past 2 years. Evaluation data indicates wide-spread support across a number of sectors of the community for example palliative care, funeral directors, artists and service clubs.

Informal care networks’ views of palliative care services: Help or hindrance?

ABSTRACT Most people indicate their preference to die at home; however, in the developed world, most die in hospital. Dying at home requires complex factors to be in place in health services and informal networks of care to successfully provide support. This study examines the ways health systems, services, and individual health care professionals influence care at home at the end of life. Three principles guide the reorientation of health services and enable their transition from hindrance to help: re-evaluation of organizational values, recognition of the primacy of caring networks, and realignment of the inherent paternalism in health care provision.