RESUMEN
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.
Asunto(s)
Minorías Sexuales y de Género , Personas Transgénero , Femenino , Humanos , Masculino , Cuidados Paliativos , Nueva Gales del Sur , Conducta SexualRESUMEN
BACKGROUND: Self-determination involves autonomy, agency, choice and control. This study investigated how these aspects of self-determination relate to engaging people with intellectual disability and complex support needs in setting goals and making plans. METHOD: Body mapping was used to understand the planning experiences of 30 adults with intellectual disability and complex support needs. Each participant created two body maps using a guided group-based process. Visual and text data were thematically analysed and a framework for planning engagement developed. RESULTS: The framework identifies the centrality of having a well-developed sense of self which includes insight, motivation and agency, and which is shaped by contextual barriers and facilitators and influenced by helpful and unhelpful support. CONCLUSIONS: A well-developed sense of self and ability to harness resources and people is fundamental to the ability of individuals with intellectual disability and complex support needs articulating goals, identifying aspirations, and attaining valued outcomes.