Exploring the barriers preventing Indigenous Australians from accessing cancer genetic counseling

Abstract

In Australia, individuals of Aboriginal and Torres Strait Islander descent (Indigenous Australians) have poorer health outcomes than the general population, including higher incidence of cancer and reduced life expectancy up to 14 years compared to non‐Indigenous Australians. Although differences in engagement with healthcare and beliefs about disease/cancer exist between Indigenous communities, a number of common barriers have been identified hindering attendance at mainstream health services. To inform exploration of barriers that may impact access to a cancer genetic counseling service, consultations with Aboriginal stakeholders were undertaken. Ethical principles for studies that engage Indigenous communities were followed throughout the research endeavor. Using a stakeholder‐endorsed focus group approach, the views of an Aboriginal Elders group (n = 9) were sought with additional semi‐structured interviews with social science and genetics researchers working with Indigenous communities in Australia (n = 7). Thematic analysis of the results identified three themes: explanatory models of illness, barriers to keeping well and attending services, and recommendations for improvements to access/attendance. Barriers common to accessing both mainstream health services and clinical genetic services were identified, including attributions of illness and cancer. Specific genetic counseling barriers included the cultural inclusivity and accessibility of services, and a lack of awareness of genetic counseling both in the community and by clinicians unfamiliar with genetics. Recommendations included developing flexible service delivery models and culturally appropriate resources for Indigenous patients. These findings may inform future studies to improve Indigenous health outcomes and promote a more accessible, culturally appropriate approach to provision of cancer genetics services for Australia's First Peoples.

Decolonising qualitative research with respectful, reciprocal, and responsible research practice: a narrative review of the application of Yarning method in qualitative Aboriginal and Torres Strait Islander health research

“…Most publications reported using audio recording and transcribing to collect data, however, note taking was also reported as a form of data collection [ 27 , 47 ]. Note taking replaced audio recording to reduce potential harm and was deemed culturally safe in some instances.…”

“…Publications reported using varied sampling approaches including convenient sampling, [ 41 ] and opportunistic sampling [ 42 ], usually through routine health care [ 27 , 41 , 51 , 58 , 67 ]. However most papers reported purposeful sampling , [ 27 – 29 , 34 , 39 , 47 , 48 , 55 , 56 , 59 – 61 , 68 ] including through key community Elders and representatives [ 33 , 50 , 69 ].…”

“…Overall, the absence of Aboriginal and Torres Strait Islander involvement in the collection of data was frequently not addressed by publications. Eighteen publications did not report whether or not there were Aboriginal and/or Torres Strait Islander involvement in data collection [ 28 , 31 , 32 , 34 , 36 , 37 , 41 , 46 , 47 , 52 – 54 , 58 , 62 , 66 , 69 , 70 , 72 ]. For the most part, these publications did not identify who was responsible for conducting the Yarning circles.…”

“…Twenty-four of the 46 publications reported Aboriginal and/or Torres Strait Islander involvement in analysis [ 28 – 34 , 39 , 40 , 43 , 45 , 47 , 49 , 50 , 52 , 55 , 56 , 58 – 62 , 64 , 65 ]. Predominately it was simply stated that there were Aboriginal and/or Torres Strait Islander researchers or advisory groups involved in the process, without further elaboration of exactly what the involvement entailed.…”

“…Only twenty-nine of the 46 included publications reported having an Aboriginal and/or Torres Strait Islander advisory, person or group throughout the course of their study [ 27 – 29 , 31 , 33 , 34 , 36 , 37 , 39 – 43 , 45 – 47 , 51 , 53 – 56 , 59 , 60 , 62 , 63 , 65 – 68 ]. Advisory groups were used to oversee the research, analyse data, develop protocols, guide research conduct, identify potential services and recruitment, and develop interview guides.…”