Understanding Aboriginal Peoples’ Cultural and Family Connections Can Help Inform the Development of Culturally Appropriate Cancer Survivorship Models of Care

Abstract

PURPOSE To explore the cancer diagnosis, treatment, and survivorship experiences of Aboriginal people in the Gippsland region, Victoria, Australia, and identify factors critical to the development of a culturally appropriate cancer survivorship model of care. PATIENTS AND METHODS Yarning circles were used to capture the stories of 15 people diagnosed with cancer and/or those of family members. Yarning circles were conducted in two locations in the Gippsland region. Sessions were facilitated by an Aboriginal Elder, audio recorded, and transcribed verbatim. Thematic analysis of the data were triangulated among three researchers and incorporated researcher reflexivity. RESULTS Cultural connections and family were critical supports on the cancer journey. Putting the needs of the family first and caring for sick family members were more important than an individual’s own health. There was “no time to grieve” for one’s own cancer diagnosis and look after oneself. Cancer was a private experience; however, the constancy of deaths highlighted the importance of raising family awareness. Health professionals did not always understand the importance of people’s cultural and family supports in their treatment and recovery. There were negatives attitudes in hospitals when family come to visit, seeing family as too large and overstaying visiting times. Health professionals did not seek family assistance with communication of information to family members whose literacy level was low, nor did they include family in treatment decision-making. Access to services depended on family support with transport, finances, and family responsibilities, often resulting in lapses in treatment and follow-up services. CONCLUSION Understanding the importance of Aboriginal peoples’ cultural and family connections can help to inform the development of culturally safe cancer survivorship models of care.

Accessibility of cancer treatment services for Indigenous Australians in the Northern Territory: perspectives of patients and care providers

“…The scarcity of Indigenous staff and care providers, together with a high staff turnover and variable access to language translation services, exacerbated the cultural disconnect between Indigenous patients and CTS-NT. Similar concerns have been identified for Indigenous cancer patients in Queensland [ 30 ], Western Australia [ 15 ] and Victoria [ 31 ]. Marcusson-Rababi et al found that Indigenous women undergoing gynaecological cancer treatment in Queensland experienced a similar range of difficulties impacting their experience of cancer care, including: unsympathetic delivery of bad news, confusing terminology, language difference, and a lack of available interpreters [ 30 ].…”

“…Shahid et al found that that providers commonly lacked an understanding of Aboriginal culture, and the socioeconomic conditions and life circumstances of Aboriginal families [ 15 ]. Ristevski et al found that cancer care providers in Victoria has little understanding of the importance of cultural and family connections to Indigenous Australians undergoing cancer treatment [ 31 ]. The importance of having Indigenous health care providers working with Indigenous cancer patients has been identified in numerous studies [ 6 , 15 , 28 , 32 ].…”

Cancer and Indigenous Populations: Time to End the Disparity

“…Noting that "most health research is relevant for Indigenous peoples, and most researchers are non-Indigenous," 15 the authors caution that, "if researchers don't engage with Indigenous research principles, health research can and does result in significant harm for Indigenous peoples." 15(p1) An impressive example of research underpinned by the principles outlined by this caution is the article by Ristevski et al, 16 who present a deep analysis of the importance of Aboriginal peoples' cultural and family connections to inform the development of culturally safe cancer survivorship models of care. Data were collected through yarning, a culturally appropriate methodology relevant to Indigenous Australians when sharing information, knowledge, and culture.…”

Accessibility of Cancer Treatment Services for Indigenous Australians in the Northern Territory: Perspectives of Patients and Care Providers

“…15 Ristevski et al found that cancer care providers in Victoria has little understanding of the importance of cultural and family connections to Indigenous Australians undergoing cancer treatment. 31 The importance of having Indigenous health care providers working with Indigenous cancer patients has been identi ed in numerous studies. 6,15,28,32 The value of ILOs in supporting Indigenous Australians with chronic illness has been reported in cardiovascular care.…”