Chair: Denise Marshall
a. Memorialisation practices: Changing ways of remembering the dead
Jennifer Lowe (presenting), Dr Bruce Rumbold and Prof. Samar Aoun
Over the last 30 years empirical studies of the experiences of loss, grief and bereavement have proliferated. Despite this, there has been relatively little research into the influence of memorials and memorialisation on these experiences. This study was funded by and conducted in collaboration with the Australasian Cemeteries and Crematoria Association to begin addressing this gap.
The aim of the study was to provide a better understanding of current memorialisation practices, their influence on grief due to bereavement and to highlight key priorities for improving bereavement outcomes.
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.
Five primary variables that influence decision-making about memorialisation practices are access, tradition, grief response, body disposal and consumer preferences. There is a clear societal shift from formal means of memorialisation within the cemetery toward informal approaches, through which the deceased is integrated into the everyday lives of the bereaved. Evidence for this shift includes an increase in cremations, a decline in cemetery visitation, the use of online social media platforms as virtual cemeteries and the scattering of ashes in public places that held meaning for the deceased.
The trend toward informal memorialisation practices blurs the roles of community members and formal industry service providers. A public health approach to bereavement support that encompasses both groups is recommended as the most appropriate response to the changing social environment. This approach focuses on building partnerships between industry service providers and other community organisations involved in end of life issues. We propose that redefining the role of formal industry service providers as educators and facilitators, within the ethos of compassionate communities, will support improved outcomes for the bereaved.
b. Enabling communities to support the bereaved
(presenting) Mr Ian Leech, Community Engagement and Supportive Care Manager, St Giles Hospice, Lichfield, UK.
Ms. Nikki Archer, Supportive Care Director, St Giles Hospice, Lichfield, UK.
Bereavement is an integral aspect of palliative care. Within recent literature (Aoun et al, 2015) there has been dialogue regarding the need for service provision to be timely and evidence based, offering a menu of interventions. As an organisation we reviewed our bereavement support and identified limitations.
Our aims were to use a community engagement approach to develop Bereavement Help Points to address the limitations of our service, which would enable us to
• Widen access to bereavement support
• Develop resilient communities
• Broaden the menu of support using the NICE guidance (2003) framework as a basis for service delivery
• Enable bereaved people within our community to support each other
From conversations with bereaved people we developed the vision of bereavement help points based in communities to provide information, advice, social support and a listening ear.
We scoped what was available locally, identifying partners and venues who we then worked with to enable bereaved people to come together within the help points.
We developed the skills and confidence of local people to take on the organisation and facilitation of each help point.
• Open access to 13 Bereavement Help Points is now available, facilitated by local people in their local communities with a connection to the hospice
• 120 people per week currently use the help points, of which nearly 50% are male
• Within the hospice a community engagement approach to bereavement care is core to our service model, creating a better experience for bereaved people
• Bereaved people say the help points offer a safe space to ‘be themselves’
• The model is being adopted by other hospices nationally
Adopting a public health approach to bereavement support through community engagement has enabled us to improve access, choice, efficiency and experience of bereavement support within our community.
c. End of life doulas: Emerging consumer advocates and educators for after-death and funeral practices
Dr Annetta Mallon
What is the context of this work?
My research project with EOL Doulas in four countries, considering com coms, death literacy, and continuity of care for clients.
What did it set out to achieve?
Flinders University (Rawlings, Tieman, Miller-Lewis, & Swetenham, 2018) conducted Australian-only research about EOL Doulas, but from a palliative care volunteer perspective; this work set out to achieve a better understanding of authentic practitioner experiences and perspectives from within the field. As the four English-speaking nations where EOL Doulas are found are included in this project, it is possible to consider country-specific trends and approaches, as well as comparing findings across and between the countries.
What design did you use to undertake research?
Qualitative design (Bryman, 2008) with semi-structured video interviews on Skype, audio recorded. Analysis with thematic analysis approach (Braun & Clarke, 2006).
How did you approach consideration of the theoretical issues?
Feminist theory is preoccupied with inequality (Smith, 1987, 1995) – the Flinders research failed to acknowledge income and fee scales for practitioners. Women historically and globally undertake unpaid labour practices in the workplace as well as the home (Baxter & Tai, 2016; Goodwin & Huppatz, 2010; Horsfall, Leonard, Rosenberg, & Noonan, 2017; Qi & Dong, 2016; Rosenberg, Horsfall, Leonard, & Noonan, 2017), so this research investigated attitudes to paid services/fee structures amongst practitioners. The role of EOL Doulas in helping to create com coms for clients whilst modelling death literacy is investigated focusing on professional identity formation (Wenger, 1998).
My findings will be finalised by the time of the conference.
EOL Doulas generally work in a social model manner, so engaging an EOL Doula means that skills and knowledge will be transferred to those in the com com/family and friend network. A stronger sense of professional identity may be arguably supported via this research project.
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