Developing a death literacy index.

Performing end-of-life care can be a catalyst for developing a capacity called death literacy. This study aimed to develop a comprehensive and useable measure of death literacy that has the potential to assess interventions with individuals, communities, and societies. Using a mixed methods approach, a Death Literacy Index was developed from personal narratives and input from practitioners and experts. Refined on a sample of 1330 Australians using exploratory and confirmatory factor analysis and structural equation modeling, a 29-item Death Literacy Index was found to be reliable and demonstrated construct validity. Further studies are needed to test predictive validity.

Carer experience of end-of-life service provision: a social network analysis.

OBJECTIVE: To identify the position of formal service providers in the networks of those providing end-of-life care in the home from the perspective of the informal network. METHODS: Using third-generation social network analysis, this study examined the nature and strength of relationships of informal caring networks with formal service providers through individual carer interviews, focus groups of caring networks and outer network interviews. RESULTS: Service providers were usually highly valued for providing services, equipment, pain management and personalised care for the dying person plus support and advice to the principal carer about both caring tasks and negotiating the health system. However, formal service providers were positioned as marginal in the caring network. Analysis of the relative density of relationships within networks showed that whereas relationships among family and friends had similar density, relationships between service providers and family or friends were significantly lower. CONCLUSION: The results supported the Circles of Care model and mirror the perspective of formal service providers identified in previous research. The research raises questions about how formal and informal networks might be better integrated to increase their effectiveness for supporting in-home care.

Developing compassionate communities in Australia through collective caregiving: a qualitative study exploring network-centred care and the role of the end of life sector.

BACKGROUND: The new public health palliative care movement calls for a move away from an individualised model of caregiving to a whole of community approach which will increase expectations on community carers. In order to avoid carer isolation, exploitation and potential burnout there is then a very real need to understand environments and relationships which support collective community caregiving. In this research we explored in-home caring networks to understand if and how network centred care supports carers of the dying while developing a whole of community approach. METHODS: Over a 6-year period the research team spoke to 301 caregivers, service providers and community members via interviews and focus groups in regional, rural and urban Australia. RESULTS: People are already caring for their dying at home and doing it well provided they are comprehensively supported by networks of care. Being part of a caring network provided people with a sense of achievement and developed their death literacy which flowed into a myriad of other community activities. While caring networks are essential they are not widely supported by service providers. At worst, services are obstructive of peoples stated preferences for place of death and caring and often adopt a paternalistic approach. Place of care, in this case the home, was supportive of maintaining networks and peoples' wellbeing. CONCLUSIONS: Operationalising public health approaches to palliative care requires moving to a place-based network centred model of care comprising formal and informal carers. Service systems need re-orienting to place caring networks as central to the caregiving process. This can be achieved by putting systems in place which initiate and maintain such networks and enable service providers to work with informal networks as equal and respectful partners.

Experiencing recovery: findings from a qualitative study into mental illness, self and place.

BACKGROUND: Community-managed mental health organisations are important vehicles for "place-based" recovery-oriented services in regional areas. However, the community-based sector is not well described in data collections and more research is needed to identify the specific contributions that such services can make to recovery. This situation has become more acute in Australia with the restructure of mental health services under the new National Disabilities Insurance Scheme (NDIS). AIMS: The project aimed to understand more about what is effective in the service system; what impacts living in a regional location might have on a person's lived and service system experience and what people find helpful and supportive in their recovery journeys. METHOD: A one-year qualitative study utilising photovoice and written narrative with group workshops, individual interviews and a capstone exhibition experience. RESULTS: Research findings were consistent with recovery principles but also revealed elements not commonly emphasised in the recovery literature. Four main themes were distilled: belonging and being connected; survival, resilience and hope; living a contributing life and compassionate service provision. CONCLUSION: The effectiveness of recovery-oriented service delivery needs to be secured under the individualised funding structure of the new NDIS and expanded for the specific needs of people living in regional communities.

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

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.

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.

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.

Blurring reality with fiction: Exploring the stories of women, madness, and infanticide.

PROBLEM: Often, there is a sense of shock and disbelief when a mother murders her child. BACKGROUND: Yet, literary texts (plays, poems and novels) contain depictions of women experiencing mental illness or feelings of desperation after childbirth who murder their children. AIM: To further understand why a woman may harm her child we examine seven literary texts ranging in time and place from fifth century BCE Greece to twenty-first century Australia. METHODS: A textual analysis approach examined how the author positioned the woman in the text, how other characters in the text reacted to the woman before, during, and after the mental illness or infanticide, and how the literary or historical critical literature sees the woman. FINDINGS: Three important points about the woman's experience were revealed: she is represented as morally ambiguous and becomes marginalised and isolated; she is depicted as murdering or abandoning her child because she is experiencing mental illness and/or she is living in desperate circumstances; and she believes there is no other option. CONCLUSION: Literary texts can shed light on socio-psychological struggles women experience and can be used to stimulate discussion by healthcare professionals about the development of preventative or early intervention strategies to identify women at risk.

Love stories: understanding the caring journeys of aged Greek-Australian carers.

This article documents the findings of a short-term longitudinal study that explored the caring journeys of aged Greek carers providing in-home care for their spouse. Through a deeper understanding of carers' decisions and decision-making and insights from service providers and community leaders, we aimed to inform policy makers, service managers and providers about how to develop and promote culturally appropriate support services, and negotiate them with carers and care recipients in a timely way. Initially, we conducted three focus groups and one follow-up forum with service providers and Greek community leaders. Then, over a 6-month period, we conducted two in-home interviews and two telephone interviews with 12 older Greek carers. We sought to understand factors influencing carers' decision-making regarding service uptake, and we provided information about services as required. Through our thematic analysis, we found that most carers wanted to remain as independent as possible and to avoid forced separation from the one they loved, through institutionalisation. They placed great value on their caring role which, while a struggle at times, gave them a sense of meaning, purpose and belonging. We also found that carers had great resourcefulness, strength and competence. They were all in long-term relationships, had negotiated coming to a foreign country and establishing themselves and were now in the process of negotiating old age and increasing frailty while at the same time providing care and support to family and friends. Our findings suggest that services need to be communicated in ways which support what carers value, not on outdated assumptions about cultural groups, otherwise providers will perpetuate exclusion. We propose an outreach in-home service model with an emphasis on ageing well and staying at home. This model of service provision is a model of care which emphasises relationships and community, and seeks to build social and cultural capital.

OA31†Help or hindrance: how are services and systems viewed by informal care networks?

BACKGROUND: The promotion of community engagement by palliative care services is an important strategy in increasing death literacy in the community. Networks of support around dying person and their carers can reveal existing death literacy or enable its development; this capacity can assist network members to engage with health services to the benefit of the dying person and their careers. However, it has not been clear whether members of these informal networks view palliative care services, and the health system more broadly, as a help or hindrance to the networks' support of dying people. AIM: To understand the perceptions of members of informal care networks of the role taken by health services in the support of dying people at home. METHOD: In interviews with carers (N = 23) and focus groups with caring networks (N = 13), participants were asked to describe the nature of their engagement with palliative care, other health care services and the health system. RESULTS: The analysis revealed care by individual practitioners was viewed as "above and beyond" expectations, it was clear that individualised and compassionate care was not always achieved. Further, the rules and regulations required by many services, and health system at large, were viewed as impediments to appropriate support of those dying at home. CONCLUSION: More appropriate care of dying people receiving care at home requires formal services to evaluate their attitudes and conduct towards informal networks. Agenda for incremental health system reform can be identified to remove obstacles to engagement between services and community networks.

OA45†A different kettle of fish: death literacy.

BACKGROUND AND AIM: The concept of Death Literacy developed out of strengths based practitioner-led research examining the role that social networks play in home based end of life care. In this research we started by asking the questions: 'How are ordinary people supporting each other to care for someone dying at home? What happens when they do? How can we capture their stories and illuminate the space of the possible? METHOD: Over the past 6 years the Caring at end of life research has spoken with over 300 end of life carers, their support networks and service providers in interviews and focus groups. RESULTS AND CONCLUSION: While caring is often spoke about as a burden and a drain on social capital what emerged in this research was that caring for someone at the end of their life can be transformational for the carer and their caring network, provided they are well supported by a core group of friends, family neighbours, workplaces and service providers. It became clear that home, as place of dying, is where caring communities can learn about dying and death. Here, it is a community event where each person has a role to play. This engaged learning builds death literacy: an outcome of engagement in, and participation with, the care of the dying and each other. This experience is transformational at individual, network and community levels. It is this transformation which we define as 'death literacy, or practice wisdom, which anyone can develop. 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. Once this happens death literacy becomes a resource that people can use for the benefit of themselves, their networks and their communities.

OA20†The positioning of family, friends, community, and service providers in support networks for caring at end-of-life: a social network analysis.

BACKGROUND: Although there is ample evidence of the risk to carers from the burden of caring, there is also evidence that a caring network can relieve the burden on the principal carer, strengthen community relationships, and increase 'Death Literacy' in the community. There is often an assumption that, in caring networks, family and service providers are central and friends and community are marginal. We examined whether this is the case in practice using SNA. AIM: To identify the relative positioning of family, friends, community, and service providers in caring networks. METHODS: In interviews with carers (N = 23) and focus groups with caring networks (N = 13) participants were asked to list the people in the caring network and rate the strength of their relationships to them (0 no relationship to 3 strong relationship). SNA in UCInet was used to map the networks, examine density (number and strength of relationships) across time (when caring began to the present) and across relationship types (family, friends, community, and service providers) supplemented by qualitative data. RESULTS: The analysis revealed significant increases in the density of the networks over time. The density of relationships with friends was similar to that other family. Community and service providers had significantly lower density. Qualitative analysis revealed that often service providers were not seen as part of the networks. CONCLUSION: To avoid carer burnout, it is important not to make assumptions about where carers obtain support but work with each carer to mobilise any support that is available.

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 Harvey's 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 group's 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.

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.