Improving palliative care outcomes for Aboriginal Australians: service providers’ perspectives

Abstract

BackgroundAboriginal Australians have a lower rate of utilisation of palliative care services than the general population. This study aimed to explore care providers’ experiences and concerns in providing palliative care for Aboriginal people, and to identify opportunities for overcoming gaps in understanding between them and their Aboriginal patients and families.MethodsIn-depth, qualitative interviews with urban, rural and remote palliative care providers were undertaken in inpatient and community settings in Western Australia. Interviews were audio-recorded, transcribed verbatim and coded independently by two researchers with QSR NVivo 10 software used to help manage data. Data analysis was informed by multiple theoretical standpoints, including the social ecological model, critical cultural theories and the ‘cultural security’ framework. Thematic analysis was carried out that identified patterns within data.ResultsFifteen palliative care providers were interviewed. Overall they reported lack of understanding of Aboriginal culture and being uncertain of the needs and priorities of Aboriginal people during end-of-life care. According to several participants, very few Aboriginal people had an understanding of palliative care. Managing issues such as anger, denial, the need for non-medical support due to socioeconomic disadvantage, and dealing with crises and conflicts over funeral arrangements were reported as some of the tensions between Aboriginal patients and families and the service providers.ConclusionEarly referral to palliative care is important in demonstrating and maintaining a caring therapeutic relationship. Paramount to meeting the needs for Aboriginal patients was access to appropriate information and logistical, psychological and emotional support. These were often seen as essential but additional to standard palliative care services. The broader context of Aboriginal history and historical distrust of mainstream services was seen to impinge on Aboriginal people’s willingness and ability to accept care and support from these services. This context needs to be understood and acknowledged at the system level. More cultural safety training was requested by care providers but it was not seen as replacing the need for an Aboriginal worker in the palliative care team.

Priorities and challenges for a palliative approach to care for rural indigenous populations: A scoping review

“…For example, even when physical environment is not a limiting factor and rural Indigenous families are able to arrange travel and access to palliative health services outside of their community, these trips can be a financial burden (Shahid et. al, ; Tonelli et al., ). Financial costs include not only the cost of travel and accommodations but also the potential loss of income and the cost of care beyond coverage for patients and family caregivers (Smith, ).…”

“…Geographic distance and remoteness are factors that may influence both access to palliative services, referral to palliative specialty services and the quality of palliative care available to patients (Rix et al., ; Willis, ; McGrath, ). For instance, limited access of Indigenous patients to healthcare often results in late diagnosis of complex chronic illnesses which may result in further complications (Rix, Barclay, Stirling, Tong, & Wilson, ; Smith, ) or late referral to palliative care services (Smith, ; O'Brien et al., ; Shahid, Bessarab, van Schaik, Aoun, & Thompson,; Poroch, ; Shih & Honey, ). Unreliable road conditions and isolation may also create constraints in the delivery of palliative care (McGrath, ).…”

“…electricity) required for palliative care management can be prohibitive because the community may lack the economies of scale that make such provisions cost‐effective (McGrath,; Willis, ). Although some of these disparities in palliative care services may be explained by geography, disparities between Indigenous and non‐Indigenous communities suggest that other factors (Kelly & Minty, ), such as systemic discrimination (Frey et al., ; Shahid et al.,), may also play a role. Notably, front‐line healthcare workers often do not account for these environmental and contextual factors when planning or providing palliative care for Indigenous families (Shahid et al.,).…”

“…Although some of these disparities in palliative care services may be explained by geography, disparities between Indigenous and non‐Indigenous communities suggest that other factors (Kelly & Minty, ), such as systemic discrimination (Frey et al., ; Shahid et al.,), may also play a role. Notably, front‐line healthcare workers often do not account for these environmental and contextual factors when planning or providing palliative care for Indigenous families (Shahid et al.,). Therefore, a lack of knowledge of these contextual factors may further compound barriers in accessing quality palliative support for Indigenous patients and their families.…”

Working bi-culturally within a palliative care research context: the development of the Te Ārai Palliative Care and End of Life Research Group

“…For example, McGrath's development of the 'living model' for conducting research with indigenous groups, emphasises the importance of capturing the unique circumstances of each health care service working with indigenous/aboriginal peoples (McGrath, 2006(McGrath, , 2010. Similarly, Shadid et al in their survey of Native-American experiences at end of life have stressed the importance of 'build[ing] rapport and develop[ing] a relationship' with the communities they are researching (Decourtney, Branch, & Morgan, 2010;Shahid, Bessarab, van Schaik, Aoun, & Thompson, 2013;Shahid, Finn, Bessarab, & Thompson, 2011).…”