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Concurrent Session (Auditorium)

Chair: Samar Aoun

a. The voices of death doulas regarding their role in end of life care

All authors: Ms Deb Rawlings, Professor Jennifer Tieman, Dr Lauren Miller-Lewis, Ms Kate Swetenham, Ms Caroline Litster, Dr Huahua Yin. Flinders University

Presenting Author: Deb Rawlings

Background
A Massive Open Online Course (MOOC) on death and dying (Dying2Learn) (Tieman et al, 2018) was offered in 2016, 2017 for the general public. It included an activity based on the work of Candy Chang, where participants wrote on a virtual wall what they wanted to do ‘Before I Die’.
Purpose
To explore the responses to this activity within both MOOCs in an assumed “well” community (i.e, outside the health context).
Design
Data from 2016 and 2017 included activity responses from 633 participants. Responses were qualitatively coded by two raters and analysed. Respondents were predominantly female (93.3%), with a mean age of 49.75. Most participants resided in Australia (87.5%.
Ethical approval was obtained from the Flinders University Social and Behavioural Human Research Ethics Committee (Project 7247).
Results
Twelve themes emerged from the data in the following order of frequency: family; do an activity; personal aspiration; live life fully, happiness; love; the greater good; peace; legacy; gratitude; religion; and health. Responses could also be distinguished as being inward-facing (about the self), and outward-facing (about others).

Conclusion
This simple “Before I Die” activity encourages people to articulate values in their life more consciously, within the context of understanding that life is finite. It is hoped that this is a useful way for people to become more aware of their mortality and to live their life in a way that is congruent with what they consider to be what really matters the most to them in their lifetime. The potential of this activity for building death awareness and preparedness, and for understanding the impact on personal well-being are important considerations for future research.

Reference
Tieman et al 2018. The contribution of a MOOC to community discussions around death and dying. BMC Palliative Care, 17, 31.

b. How might the death industry make a meaningful contribution to bereavement support within the context of Compassionate Communities.

Jennifer Lowe, Dr Bruce Rumbold and Prof. Samar Aoun

In a national Australian survey, formal funeral service providers were reported as the third most prevalent source of bereavement support, after the informal support of friends and family. Despite 82% of bereaved Australians turning to formal funeral service providers for support, the potential contributions of the death industry to bereavement support is yet to be considered in the context of compassionate communities. This study was funded by and conducted in collaboration with the Australasian Cemeteries and Crematoria Association to begin addressing this gap. The aim of this study was to explore how the funeral, cemeteries and crematoria industries may be able to make a meaningful contribution to bereavement support within the context of compassionate communities, through the facilitation of memorialisation practices. The core of this qualitative study was a scoping literature review. In-depth interviews with eight service providers from the funeral, cemeteries and crematoria industries then explored responses to key themes emerging in the literature review. The public health model of bereavement support was adopted as a theoretical foundation. Three core concepts contribute to the memorialisation needs of the bereaved including the nature of loss, post-mortem identity construction and grief anxiety. In addition, there are four key considerations in determining memorialisation needs based on bereavement risk; the use of personalised ritual, physical proximity to remains, the frequency of performing rituals and the use of public or private space. Akin to the public health model of bereavement support, memorialisation needs may also be aligned to the three bereavement risk groups; high need, moderate need, low need. Although there is limited extant evidence linking memorialisation to improved bereavement outcomes due to methodological challenges in the reviewed literature, findings suggest that the process of memorialisation supports grief adjustment in various ways. We propose that these service providers become more intentional about their social contributions as educators, facilitators and consultants on meaningful, effective and therapeutic rituals for bereaved people. We encourage the exploration of community development approaches as a strategy for developing effective collaboration with their communities.

c. The Life Cafe

All authors: "Helen Fisher - Researcher and Designer @ Lab4Living (Presenting) Dr Claire Craig: Reader / Occupational Therapist / Co-director Lab4Living and Professor Paul Chamberlain: Co-director Lab4Living / Head of the Art and Design Research Centre

The last decade has witnessed a demographic change on unprecedented scale - people are living longer and with more complex, long term conditions. This presentation summarises a Marie Curie funded programme which seeks to rethink how palliative and end of life care can be provided equitably, efficiently and sustainably for future generations. It explores the methodological approach undertaken by university researchers, to engage communities in conversations around a topic often seen as taboo. The community engagement focuses on understanding what is important to different individuals in life, in care, and towards end of life. A methodology, named the Life Cafe, has been developed to gather research in an informal, comfortable manner within existing community groups and familiar environments. The Life Cafe comprises critical artefacts, creative activities and resources, co-developed with community members, that have been used to gather stories, experiences and ideas to support the design phase of the project. The Life Cafe itself has become a product that can be used across different services to establish what matters to individuals, enable difficult conversations and build connections.

A link has been identified between the Life Café and the Compassionate Communities model. The Life Café creatively facilitates the steps before a compassionate community forms, it engages community members and groups and offers a starting point for compassionate communities to grow. This presentation will therefore explore the next phase of the Life Cafe’s journey - working with Dr Julian Abel (Compassionate Communities UK) and community/local organisations/businesses to develop the Life Café to reflect the work and methods used when developing a compassionate community.

This presentation particularly addresses the themes of ‘end of life is everybody’s business’, ‘building connections and partnerships’ and’ designing compassionate spaces’ for conversations to begin.

d. Community views on ‘What I Want Before I Die’

All authors: Ms Deb Rawlings, Dr Lauren Miller-Lewis, Professor Jennifer Tieman. Flinders University

Presenting author: Deb Rawlings

Background A Massive Open Online Course (MOOC) on death and dying (Dying2Learn) (Tieman et al, 2018) was offered in 2016, 2017 for the general public. It included an activity based on the work of Candy Chang, where participants wrote on a virtual wall what they wanted to do ‘Before I Die’.

Purpose To explore the responses to this activity within both MOOCs in an assumed “well” community (i.e, outside the health context). Design Data from 2016 and 2017 included activity responses from 633 participants. Responses were qualitatively coded by two raters and analysed. Respondents were predominantly female (93.3%), with a mean age of 49.75. Most participants resided in Australia (87.5%. Ethical approval was obtained from the Flinders University Social and Behavioural Human Research Ethics Committee (Project 7247).

Results Twelve themes emerged from the data in the following order of frequency: family; do an activity; personal aspiration; live life fully, happiness; love; the greater good; peace; legacy; gratitude; religion; and health. Responses could also be distinguished as being inward-facing (about the self), and outward-facing (about others).

Conclusion This simple “Before I Die” activity encourages people to articulate values in their life more consciously, within the context of understanding that life is finite. It is hoped that this is a useful way for people to become more aware of their mortality and to live their life in a way that is congruent with what they consider to be what really matters the most to them in their lifetime. The potential of this activity for building death awareness and preparedness, and for understanding the impact on personal well-being are important considerations for future research. Reference Tieman et al 2018. The contribution of a MOOC to community discussions around death and dying. BMC Palliative Care, 17, 31.