Renegade stories : a study of deathworkers using social approaches to dying, death and loss in Australia

In Australia, our population is ageing, our morbidity rates are low, and our health and aged care services are under pressure to modernise. This is a very particular and urgent time to critically examine the care and support available to people who are dying, and their families. It is a period of revival and innovation on the one hand (Swerissen & Ducket, 2014; Walter, 1994) and a space that continues to be dominated by a conservative and largely professionalised death system on the other. Despite the best efforts of the reformers and activists you will meet in this research, end-of-life care and deathcare has not fundamentally changed since the last critical turn, the modern hospice movement that began in the late 1960s. Renegade Stories is a qualitative and critical examination of the lived experiences of 12 deathworkers in Australia who, despite the dominant biomedical paradigm, are guided by a social approach to dying, death and loss. In examining their lived experiences, this thesis embodies the change that is occurring about how people experience death. It does this by asking: What are the stories and experiences of deathworkers who have a social approach to death, dying and loss? How is this deathwork shaped and influenced? And, How are they making a difference? Renegades, like many other activists in the end-of-life and deathcare space are struggling to find ways to have their perspective and experiences heard above the dominant approach toward death and dying. This thesis, in a small way, provides a space for their experiences to be heard

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 Index: A Report on its Development and Implementation

The Death Literacy Index (DLI) provides a means to measure and research public health palliative care initiatives, including those under the umbrella of Compassionate Communities, by exploring the ways in which community members’ knowledge and practice are enhanced through these initiatives. Within public health palliative care, the Compassionate Communities approach views the community as equal partners in the long and complex task of providing quality health care at end of life. Over the past decade there has been growing acknowledgement that communities have been marginalised in the increasingly professionalised EOL care service sector. In contrast Compassionate Communities draw upon the social connections, reciprocity and trust available when social capital is present in a community. Thus, the DLI is designed to be used by community practitioners and researchers alike. This report provides an overview of the concept of death literacy and the development of the DLI. The DLI was developed from personal narratives of carers, with input from a wide range of professionals and experts and was tested on a national sample of Australians. The report includes detailed information about the development of the Index, reliability and validity statistics, four case studies demonstrating the uses of the DLI and a series of data tables for understanding the norms and baseline data about death literacy in Australia

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.Output Status: Forthcoming/Available Onlin

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

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

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

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

Ten years of public health palliative care conferences : a critical reflection for the next decade

This commentary emerged from a series of conversations between the authors reflecting upon the origin of these public health palliative care conferences and the developments since across ten years

Developing death literacy

Death literacy is defined as a set of knowledge and skills that make it possible to gain access to understand\ud and act upon end-of-life and death care options. People, and communities, with high levels of death literacy\ud have context-specific knowledge about the death system and the ability to put that knowledge into practice.\ud Positioned within a public health framework, death literacy is considered an outcome of people’s experiences\ud of and learnings about, death and dying. Death literacy also appears to be a resource that individuals and\ud communities can use for their own benefit strengthening their capacity for future caring. This purpose of\ud this paper is to explore the concept of death literacy using the evidence from a 6-year research project.\ud 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