Lesbian, gay, bisexual, transgender and gender diverse and queer (LGBTQ) community members' perspectives on palliative care in New South Wales (NSW), Australia.

ABSTRACT

Lesbian, gay, bisexual, transgender and gender diverse people, and queer people (LGBTQ people) are at increased risk of some chronic diseases and cancers. NSW Health palliative care health policy prioritises equitable access to quality care, however, little is known about community members' perspectives on palliative care. This study aimed to understand LGBTQ community views and preferences in palliative care in NSW. A community survey and follow-up interviews with LGBTQ people in NSW were conducted in mid-2020. A total of 419 people responded to the survey, with 222 completing it. Six semi-structured phone interviews were conducted with participants who volunteered for follow-up. The sample included LGBTQ people with varied levels of experience in palliative care. Thematic analysis was conducted on survey and interview data, to identify perceived barriers and enablers, and situate these factors in the socio-ecological model of health. Some perceived barriers from community members related to considering whether to be 'out' (i.e., making one's sexual orientation and gender known to services), knowledge and attitudes of staff, concern about potential substandard care or mistreatment (particularly for transgender health), decision making, biological family as a source of tension, and loneliness and isolation. Perceived enablers related to developing and distributing inclusive palliative care information, engaging with community(ies), fostering inclusive and non-discriminatory service delivery, ensuring respectful approaches to person-centred care, and staff training on and awareness building of LGBTQ needs and issues. Most of the participants who had experienced palliative care recounted positive interactions, however, we identified that LGBTQ people require better access to knowledgeable and supportive services. Palliative care information should be inclusive and services respectful and welcoming. Particular consideration should be given to how services respond to and engage with people from diverse population groups. These insights can support ongoing policy and service development activities to further enhance palliative care.