Talking about what a ‘good death’ means for some of Australia’s Aboriginal and linguistically and culturally diverse cultures can be challenging. In Australia, there is no nationally consistent collection and reporting of palliative care data, which prevents adequate monitoring and evaluation of services. Besides anecdotal evidence, little is known about the palliative care needs of these communities. In this presentation, we present the findings to date of a two-year research project conducted by The Caring at End of Life Research Program at Western Sydney University in partnership with the Western Sydney Local Health District and working with Aboriginal and Arabic, Hindi and Mandarin speaking groups.

 

This study aimed to understand the culturally specific end of life needs of the Aboriginal community, and those from an Arabic, Hindi and Mandarin-speaking background in Western Sydney. This local health district has one of the most ethnically and socio-economically diverse populations in Australia. 

 

In this project, we collaborated with health professionals, cultural advisors and community participants. We invested time in listening to the palliative care community, and those they serve, to explore, evaluate, co-design and recommend changes to policy makers about culturally safe and appropriate services for people from different cultural backgrounds and those who care for them at end of life. As one research participant said, “It’s time for palliative care to be taken seriously”. Our thematically analysed project was multi-model, multi-lingual, multi-disciplinary. We gathered insights through key informant interviews, language-based discussion groups, community workshops, and art-based activities with community members from diverse linguistic and cultural backgrounds. 

 

Individuals and families from these Aboriginal and CALD communities face significant challenges in accessing and communicating their health and supportive palliative care needs, whether their choice is to be cared for and die in hospital. In this presentation, we outline the key themes and collaboratively developed findings to support systemic change in how health and supportive care might better serve our diverse population at end of life. Both the cultural norms and the individual preferences needs to be simultaneously addressed.

Hannah Morgan (LHA), Alex Taylor (LHA), Jason Peter Petrides (ACAP), and Fiona Ann Papps (ACAP) 

Background:
Palliative care (PC) is complex, multidisciplinary healthcare that aims to enhance the quality of life for patients with few recovery prospects. Many LGBTIQ+ people do not receive PC that meets their needs. Data are limited for intersex, bisexual and transgender and gender diverse populations. Barriers to accessing PC include a lack of recognition of a person’s chosen family over family of origin, discrimination and stigma, disenfranchised grief, heterosexism, social isolation, and limited knowledge around legal decision-making. Disrespectful care can reduce the trust patients have in providers and institutions, leading to delaying or avoiding care, or not disclosing relevant information. It is important to better understand the perceptions of healthcare professionals and LGBTIQ+ people when it comes to the barriers and enablers to PC access for LGBTIQ+ people. 

Aim: 
This research aims to better understand the perceptions of barriers and enablers to effective PC access among healthcare professionals and LGBTIQ+ people. 

Methods: 
This research uses a mixed-methods approach. Data will be collected from a survey of a minimum of 120 healthcare professionals and LGBTIQ+ people living in Australia. Subsequent interviews with ten LGBTIQ+ people will further elucidate survey responses. 

Results: 
Descriptive analyses will provide data on perceptions of healthcare professionals, LGBTIQ+ people, and LGBTIQ+ healthcare professionals about barriers and enablers to effective PC for LGBTIQ+ people. Data will be used by Australia’s peak body for LGBTIQ+ health, LGBTIQ+ Health Australia (LHA) to build an evidence base to support the development of e-modules for healthcare practitioners around LGBTIQ+ inclusive PC. The e-modules aim to build the capacity of the PC sector to respond to the needs of LGBTIQ+ people in a culturally inclusive way. 

Keywords: healthcare professionals, LGBTIQ+ people, palliative care (PC),

Background

Aboriginal and Torres Strait Islander (A&TSI) Australians view life and death differently to non-A&TSI Australians. Discussing end-of-life care preferences is challenging especially if there are no easy-to-understand and culturally-specific advance care planning (ACP) resources available to the Indigenous population. Observations in the Goondiwindi Emergency Department (Darling Downs region, Queensland) revealed both young and older Indigenous people interact well with technology.  

A culturally-sensitive advance care planning application (APP) was developed to enable Indigenous people to yarn and gather their wishes about family and end-of-life healthcare.  

The Statewide Office of Advance Care Planning uploads ACP documents from across Queensland to a digital platform accessible to clinical staff in GPs, hospitals and RACFs. The Office was well-placed to support back-end refinement and improve accessibility of documented wishes recorded in the APP to enable end-of-life care wishes to be known and respected. 

Aim

The aim of this ongoing project is to expand the reach and functionality of the APP to enable A&TSI peoples to record their wishes about family and health care and make these wishes available to those involved at the point of care. 

Methods

Yarning with the Indigenous reference group assisted with APP content and illustrative framework of fishing by the river in their bush setting. Testing within Goondiwindi and Toowoomba communities and demonstration in Cherbourg was conducted and challenges identified. Collaboration with the Statewide Office of ACP is enabling resolution of some challenges including further reach, digital sign off, upload and access of a person’s wishes about family and healthcare. 

Findings

There was agreement amongst A&TSI communities that such a resource would be well accepted. Digital transfer and upload of the advance care yarning document, accessible across sectors is possible and will support culturally-sensitive healthcare decision making, especially at the end of life, that align with the wishes of the person.