"More support, less distress?": Examining the role of social norms in alleviating practitioners' psychological distress in the context of assisted dying services.

This study explores how providing assisted dying services affects the psychological distress of practitioners. It investigates the influence of professional norms that endorse such services within their field. Study 1 included veterinarians (N = 137, 75.2% female, Mage = 43.1 years, SDage = 12.7 years), and Study 2 health practitioner students (N = 386, 71.0% female, Mage = 21.0 years, SDage = 14.4 years). In both studies, participants indicated their degree of psychological distress following exposure to scenarios depicting assisted dying services that were relevant to their respective situations. In Study 1, we found that higher willingness to perform animal euthanasia was associated with lower distress, as were supportive norms. In Study 2, a negative association between a greater willingness to perform euthanasia and lower psychological distress occurred only when the provision of such services was supported by professional norms. In conclusion, psychological distress is buffered by supportive professional norms.

Clinician perspectives on voluntary assisted dying and willingness to be involved: a multisite, cross-sectional survey during implementation in New South Wales, Australia.

BACKGROUND: In the context of nationwide law reform, New South Wales (NSW) became the last state in Australia to legalise voluntary assisted dying (VAD) - commencing 28 November 2023. Clinicians have divergent views regarding VAD, with varying levels of understanding, support, and willingness to be involved, and these may have a significant impact on the successful implementation. AIMS: To understand levels of support, understanding and willingness to be involved in VAD among clinical staff across NSW during implementation of VAD. METHODS: A multisite, cross-sectional online survey of clinicians across four local health districts, assessing relevant demographics, awareness of and support for VAD legislation and willingness to be involved in different levels of VAD-related clinical activities. RESULTS: A total of 3010 clinical staff completed the survey. A majority of participants were aware of VAD legislation in NSW (86.35%) and supportive of it (76%), with nursing and allied health clinicians significantly more likely than medical specialists to express support. Among medical specialists, support was statistically more likely in those who did not care for patients at the end of life and those with limited knowledge of the legislation. Willingness of medical specialists to perform key roles was significantly lower, with 41.49% willing to act in coordinating or consulting roles, and only 23.21% as administering practitioners. CONCLUSIONS: The majority of clinical staff surveyed across NSW supported VAD legislation. While many eligible clinicians were reluctant to be actively involved, sufficient numbers appear willing to provide VAD services, indicating that successful implementation should be possible.

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.

Using Latent Profile Analysis to Understand Health Practitioners' Attitudes Toward Voluntary Assisted Dying.

Prior work has documented considerable diversity among health practitioners regarding their support for voluntary assisted dying (VAD). We examined whether their attitudes are characterised by different combinations of personal support, normative support by other health practitioners, and whether they are predisposed to vicariously experience others' emotions (i.e., empathy). We also examined whether these profiles experienced different mental health outcomes (i.e., burnout and posttraumatic stress) in relation to VAD. To test this, 104 Australian health practitioners were surveyed after VAD was legalised in Victoria, Australia in 2019. Results indicated that practitioners' attitudes were characterised by three profiles: 1) strong personal and normative support (strong VAD supporters), 2) moderate personal and normative support (moderate VAD supporters), and 3) lower personal and normative support (apprehensive practitioners). However, each profile reported similar mental health outcomes. Findings suggest that the normative environments in which health practitioners operate may explain their diverse attitudes on VAD.

The Compassionate Communities Connectors model for end-of-life care: implementation and evaluation.

Objectives: This pilot project aimed to develop, implement and evaluate a model of care delivered by community volunteers, called Compassionate Communities Connectors. The Connectors' principal task was to support people living with advanced life-limiting illnesses or palliative care needs by enhancing their supportive networks with Caring Helpers enlisted from the local community. Methods: The project was undertaken in Western Australia, 2020-2022. A mixed methods research design incorporated a prospective cohort longitudinal design with two cross-sectional measurements, pre- and post-intervention. The primary outcome was the effect of the intervention on social connectedness. Secondary outcomes were the effect of the intervention on unmet practical or social needs and support from social networks, and the self-reported impact of the programme on social wellbeing such as coping with daily activities, access to formal services, community links, social activity and reducing social isolation. Results: Twenty Connectors were trained but 13 participated; 43 patients participated but 30 completed the study. Over half of these patients lived alone and 80% of their needs were in the social domain. There were significant improvements in social connectedness, reflected in reduced social isolation, better coping with daily activities and a two-fold increase in supportive networks. The programme was able to address gaps that formal services could not, particularly for people who lived alone, or were socially isolated in more rural communities that are out of the frequent reach of formal services. Conclusions: This project led to an ongoing programme that has been incorporated by the health service as 'business as usual', demonstrating rapid translation into practice. It has laid solid grounds for community capacity building with successful measurable outcomes in line with reports on similar programmes. Ongoing work is focused on replication in other communities to help them establish a similar model of care that better integrates formal and informal networks.

'The more you give, the better it is for you. You know the reward is greater than the effort': the Compassionate Communities Connectors' experience.

Background: The Compassionate Communities Connectors programme is a volunteer-led initiative designed to enhance the social networks of families living with chronic or life-limiting illnesses. Specially trained volunteers supported existing members of the families' social networks and also enlisted the support of community members, Caring Helpers, to address the social and practical needs of these families. The programme is an initiative of The South West Compassionate Communities Network in Western Australia, in partnership with the health service. Objective: To explore the experiences and views of Connectors implementing this model of care with a particular focus on its feasibility and acceptability from their perspective. Methods: Semi-structured telephone interviews were undertaken with 11 Connectors covering their experience with 37 patients/family carers (March 2021 to April 2022). A deductive content analysis was used in analysing interview transcripts. Results: Six themes captured the Connectors' view of their role and its impact on their clients and themselves: Mutual benefits from connection and reciprocity; It is ok to ask for and receive help; Sense of community as being 'part of a village'; Making a difference in social connectedness; Frustrations when not achieving everything you want to; Reflecting on the difference with traditional volunteering. These themes are complemented by a social network mapping example and a vignette demonstrating the increase both in connections and interaction between these connections and the process by which such changes took place. Conclusion: Volunteering as a Connector has been a positive and feasible experience for fostering a sense of community among participants, developing relationships with other community members, seeing the difference that the Connector role makes in the lives of those involved in the enhanced network and fostering growth in Connectors' emotional capacity and compassion. The work is challenging but rewarding and differs in several respects from traditional volunteering, particularly in the agency Connectors can bring to their role. A public health approach based on a close partnership between health services and communities/civic institutions is the optimal practice model.

Attitudes Toward and Experience With Assisted-Death Services and Psychological Implications for Health Practitioners: A Narrative Systematic Review.

A narrative systematic review was conducted to review studies that examine mental health implications of involvement in assisted-death services among health practitioners. Qualitative and quantitative studies were included to understand health practitioners' attitudes and experiences with assisted dying services, as well as to identify the mental health consequences. We identified 18 articles from 1591 articles drawn from seven major scientific databases (i.e., PubMed, MEDLINE, CINAHL, PsycINFO, Embase, Web of Science, and Scopus). Two raters independently evaluated the exclusion and inclusion decisions of the articles and examined methodological flaws in the selected articles. We found that engagement in assisted death services were not reliably associated with mental health outcomes such as anxiety and moral distress. Both positive and negative outcomes were reported, and psychological outcomes for practitioners were shown to vary based on factors including social support for health practitioners' views; their perceived capacity to care for the patients; and legislation.

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.

Traumatised, angry, abandoned but some empowered: a national survey of experiences of family caregivers bereaved by motor neurone disease.

BACKGROUND: There are few illnesses as disruptive as motor neurone disease, a fatal neurodegenerative condition, where diagnosis introduces a clinical narrative of inevitable decline through progressive immobilisation into death. Recent evidence suggests that bereaved motor neurone disease family caregivers are more likely to be at moderate or high risk of complicated grief. METHODS: Qualitative data from an anonymous national survey of bereaved motor neurone disease caregivers (n = 393) was examined through thematic analysis to explore the experiences of people who are at low, moderate, and high risk of complicated grief. Up to 40% responded to three open-ended questions: How caregivers viewed their coping strategies; the advice they had for others and what had been positive about their experience. RESULTS: Ten themes informed the narratives of illness and loss. All three groups shared similar experiences but differed in their capacity to address them. The low-risk group seemed to recognise the uncertainty of life and that meaning needed to be created by them. For the moderate-risk group, while motor neurone disease was a major disruption, they could with support, regroup and plan in different ways. The high-risk group did not have many resources, external or internal. They felt let down when professionals did not have answers and could not see or did not know how to change their ways of responding to this unwanted situation. CONCLUSION: The differences in these three profiles and their narratives of loss should alert health and community service providers to identify and address the caregivers' support needs early and throughout the caregiving journey. Motor Neurone Disease Associations are involved throughout the illness journey and need to invest in a continuum of care incorporating end-of-life care and bereavement support. Community grief literacy and enhancement of social networks are keys to improved support from families and friends that can enable the focus to be on feelings of empowerment rather than abandonment.

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.

Death literacy-developing a tool to measure the social impact of public health initiatives.

This presentation provides an overview of the development of the death literacy concept and of our recent research work to develop a death literacy benchmarking tool. The concept of 'death literacy' has four components; skills, knowledge, experiential learning and social action and all provide a framework for behavioural and systemic change. This tool will provide a national benchmark of death literacy in the general population, providing a way to measure the social impact of existing and new public health initiatives. The purpose of the GroundSwell Project (GSP) is to create a more death literate society, one where people and communities have the practical know-how needed to plan well for end of life. This means shifting focus from "talking about it" to transforming this conversation into one of deep community engagement, social action, insight and empowerment. Being death literate strengthens our ability to care, creating compassionate communities. This tool will provide a national benchmark of death literacy in the general population and will provide a way to measure the social impact of existing and new public health initiatives. Our goal is develop a tool that can be used by a number of stakeholders-funders, government and services.

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.

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.

WA47†Tweets, hashtags and palliative care: a workshop for social media newbies looking to join the digital revolution.

: A recent article in the BMJ highlighted the role of social media has in changing the way we talk about and respond to death and dying. There are so many social media channels do you know which ones are best for communicating about your work? for networking with peers? participating in journal clubs? disseminating research with the international community? What about your local community- how do you increase engagement online to promote your work and events? How can you use social media to source and access interesting content and information about the public health approach? This workshop is designed as a beginner level and new user workshop and is suitable for anyone wanting to be more active in social media. It is designed specifically to focus on social media in relation to the end of life, palliative care and death care online communities. Bring your social media device - your phone, ipad or computer and we will do the following: login and practice communicating with other users develop and implement basic social media goals apply strategies to increase your engagement and effectiveness on social media learn simple ways to measure your reach. Workshop participants will have an opportunity to build confidence and be more effective communicators in social media. You then get to practice your newly learned skills for the remainder of the PHPC Conference.

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.