Validation of a culturally adapted Swedish-language version of the Death Literacy Index.

The death literacy index (DLI) was developed in Australia to measure death literacy, a set of experience-based knowledge needed to understand and act on end-of-life (EOL) care options but has not yet been validated outside its original context. The aim of this study was to develop a culturally adapted Swedish-language version of the DLI, the DLI-S, and assess sources of evidence for its validity in a Swedish context. The study involved a multi-step process of translation and cultural adaptation and two validation phases: examining first content and response process validity through expert review (n = 10) and cognitive interviews (n = 10); and second, internal structure validity of DLI-S data collected from an online cross-sectional survey (n = 503). The psychometric evaluation involved analysis of descriptive statistics on item and scale-level, internal consistency and test-retest reliability, and confirmatory factor analysis. During translation and adaptation, changes were made to adjust items to the Swedish context. Additional adjustments were made following findings from the expert review and cognitive interviews. The content validity index exceeded recommended thresholds (S-CVIAve = 0.926). The psychometric evaluation provided support for DLI-S' validity. The hypothesized six-factor model showed good fit (χ2 = 1107.631 p<0.001, CFI = 0.993, TLI = 0.993, RMSEA = 0.064, SRMR = 0.054). High internal consistency reliability was demonstrated for the overall scale (Cronbach's α = 0.94) and each sub-scale (α 0.81-0.92). Test-retest reliability was acceptable, ICC ranging between 0.66-0.85. Through a comprehensive assessment of several sources of evidence, we show that the DLI-S demonstrates satisfactory validity and acceptability to measure death literacy in the Swedish context. There are, however, indications that the sub-scales measuring community capacity perform worse in comparison to other sca and may function differently in Sweden than in the original context. The DLI-S has potential to contribute to research on community-based EOL interventions.

The end-of-life needs of Aboriginal and immigrant communities: a challenge to conventional medical models.

Introduction: Concerns have been raised internationally about the palliative care needs of migrants and First Nations people. This article presents insights from research investigating the end-of-life needs of Aboriginal and culturally and linguistically diverse people living in Western Sydney, Australia. This region has a large rapidly growing, and highly diverse population and on average low socioeconomic status. The research was guided by an advisory panel made up of representatives of supportive and palliative medicine, bereavement support, Aboriginal health, and multicultural health facilities. It aimed to generate findings to support the delivery of culturally sensitive services in the public health system. Method: The multi-method design and the conduct of the research were informed by the literature on researching with marginalized groups which highlights the ethical considerations needed to avoid replicating past injustices. Qualitative data was generated from key informants and community focus groups. Results: The analysis revealed seven themes and some suggested solutions which were relevant across several themes. The seven themes were: the Need for trusted relationships; Talking about death and dying; Knowledge of key services; Decision-making and obtaining consent from the patient; Appropriate physical spaces; Cultural practices around EOL; and Language barriers. Discussion: Within each theme a variety of cultural beliefs and practices were revealed that conflicted with mainstream medical systems, indicating the need for changes in such systems. 'Compassionate Communities' was identified as a model to support the necessary changes.

Psychometric validation of the death literacy index and benchmarking of death literacy level in a representative uk population sample.

BACKGROUND: Death literacy includes the knowledge and skills that people need to gain access to, understand, and make informed choices about end of life and death care options. The Death Literacy Index (DLI) can be used to determine levels of death literacy across multiple contexts, including at a community/national level, and to evaluate the outcome of public health interventions. As the first measure of death literacy, the DLI has potential to significantly advance public health approaches to palliative care. The current study aimed to provide the first assessment of the psychometric properties of the DLI in the UK, alongside population-level benchmarks. METHODS: A large nationally representative sample of 399 participants, stratified by age, gender and ethnicity, were prospectively recruited via an online panel. The factor structure of the 29-item DLI was investigated using confirmatory factor analysis. Internal consistency of subscales was assessed alongside interpretability. Hypothesised associations with theoretically related/unrelated constructs were examined to assess convergent and discriminant validity. Descriptive statistics were used to provide scaled mean scores on the DLI. RESULTS: Confirmatory factor analysis supported the original higher-order 8 factor structure, with the best fitting model including one substituted item developed specifically for UK respondents. The subscales reported high internal consistency. Good convergent and discriminant validity was evidenced in relation to objective knowledge of the death system, death competency, actions relating to death and dying in the community and loneliness. Good known-groups validity was achieved with respondents with professional/lived experience of end-of-life care reporting higher levels of death literacy. There was little socio-demographic variability in DLI scores. Scaled population-level mean scores were near the mid-point of DLI subscale/total, with comparatively high levels of experiential knowledge and the ability to talk about death and dying. CONCLUSIONS: Psychometric evaluations suggest the DLI is a reliable and valid measure of death literacy for use in the UK, with population level benchmarks suggesting the UK population could strengthen capacity in factual knowledge and accessing help. International validation of the DLI represents a significant advancement in outcome measurement for public health approaches to palliative care. PRE-REGISTRATION: https://osf.io/fwxkh/.

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.

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.

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.

Assessing climate change beliefs: Response effects of question wording and response alternatives.

To date, there is no 'gold standard' on how to best measure public climate change beliefs. We report a study (N = 897) testing four measures of climate change causation beliefs, drawn from four sources: the CSIRO, Griffith University, the Gallup poll, and the Newspoll. We found that question wording influences the outcome of beliefs reported. Questions that did not allow respondents to choose the option of believing in an equal mix of natural and anthropogenic climate change obtained different results to those that included the option. Age and belief groups were found to be important predictors of how consistent people were in reporting their beliefs. Response consistency gave some support to past findings suggesting climate change beliefs reflect something deeper in the individual belief system. Each belief question was assessed against five criterion variables commonly used in climate change literature. Implications for future studies are discussed.

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.

The Conversion of Social Capital into Community Development: an intervention in Australia's outback.

The research presented in this article employed a deliberate intervention to mobilize social capital and then studied the dynamics of the way in which it influenced community development. Whether or not social capital is able to facilitate development depends on the specific context in which it occurs. Although the general context of this study was that of small rural towns in Australia's outback that are experiencing decline, each of the four towns studied had unique features which could influence the mobilization of social capital. Rural communities have the willingness and capacity to mobilize but whether this capacity is actualized may well depend on the presence of other mobilizing factors. Specifically the intervention study found that a structure needs to be in place which can take the initiative and work across the community - engaging a range of organizations. Second, the structure needs to be supported, but not controlled, by local government. Third, it needs the kind of social entrepreneurship that can sustain a community-wide vision and bring together the diverse groups within the community.

The Grey Nomad phenomenon: changing the script of aging.

This article explores a relatively new and little understood phenomenon, that of the Australian Grey Nomads. Every year increasing numbers of older Australians take to the road. This article explores the phenomenon both empirically and theoretically. A grounded approach is used by which the experience is explored from an ethnographic account involving interviews with some 400 travelers, including in-depth taped interviews with 26 traveling groups. The data is analyzed and discussed in terms of "Ulyssean" aging. The Ulyssean lifestyle requires the freedom to pursue personal choice and new, personally risky experience. Issues of health, personal development, and social networks are discussed in relation to the literature on aging. In particular, it is argued that the Grey Nomad phenomenon fundamentally challenges the dominant decline model of aging. It presents a picture instead of these older Australians taking active and very positive control of their lives, regardless of financial and health conditions. In doing so, they are rewriting the dominant social script for aging.