“This is my boy’s health! Talk straight to me!” perspectives on accessible and culturally safe care among Aboriginal and Torres Strait Islander patients of clinical genetics services

Abstract

Background Aboriginal and Torres Strait Islander people do not enjoy equal access to specialist health services that adequately meet their needs. Clinical genetics services are at the vanguard of realising the health benefits of genomic medicine. As the field continues to expand in clinical utility and implementation, it is critical that Aboriginal and Torres Strait Islander people are able to participate and benefit equally to avoid further widening of the existing health gap. This is the first study to explore barriers to accessing clinical genetics services among Aboriginal and Torres Strait Islander people, which has been acknowledged as a key strategic priority in Australian genomic health policy. Methods A participatory design process engaged a majority-Aboriginal Project Reference Group and Aboriginal End-User Group. 63 semi-structured interviews were conducted with Aboriginal and/or Torres Strait Islander people who had accessed the government-funded clinical genetics service in Western Australia, Queensland or the Northern Territory between 2014 and 2018. The sample included patients, parents and carers. Participants were asked to recount their ‘patient journey’, from referral through to post-appointment and reflect on their perceptions of genetics and its implications for the health of themselves and their families. Analysis tracked chronological service engagement, followed by an inductive thematic approach. Results Barriers to access and engagement were present at each stage of the patient journey. These included challenges in obtaining a referral, long waiting periods, limited genetic literacy, absence of Aboriginal support services, communication challenges and lack of adequate psychosocial support and follow-up after attendance. Participants’ overall experiences of attending a genetic health service were varied, with positive perceptions tied closely to a diagnosis being achieved. The experience of (and expectation for) recognition of cultural identity and provision of culturally safe care was low among participants. Unaddressed concerns continued to cause significant distress in some people years after their appointment took place. Conclusions There is significant scope for improving the care provided to Aboriginal and Torres Strait Islander people at clinical genetics services. Immediate attention to minimising logistical barriers, developing relationships with Aboriginal Community Controlled Health Services and providing practical and specific cultural safety training for practitioners is required at the service-level. Our findings strongly support the development of guidelines or policies recognising the collective cultural needs of Aboriginal and Torres Strait Islander people in relation to genomic health care.

Investigating disparity in access to Australian clinical genetic health services for Aboriginal and Torres Strait Islander people

“…At the interpersonal level-that is, the patient-practitioner interface-the literature identifies the possible contribution of referring practitioners and genetic health practitioners to disparity 22,[26][27][28] . At the individual level, this literature speaks of individual attributes such as awareness, knowledge, attitudes, values, preferences, and priorities that compromise access, and which are shaped by the socio-cultural context 25,[29][30][31][32] . These disparities are also exacerbated by the high nonmedical costs associated with attending services, particularly for patients in rural and remote settings travelling long distances to access services.…”

“…Referring pracƟƟoners lack skills and knowledge related to the funcƟon of clinical geneƟc health services, referral pathways and eligibility for geneƟc tesƟng; geneƟc literacy of pracƟƟoners relaƟng to suscepƟbility and risk, as well as capacity to idenƟfy condiƟons with geneƟc aeƟology (especially rare diseases) is oŌen low; may make assumpƟons about paƟent preferences and ability to consent [25,31,33,34]. GeneƟc health pracƟƟoners may not adequately communicate complex informaƟon to paƟents and rarely engage interpreters or cultural liaison workers; the short duraƟon of interacƟon with geneƟc health services means there is limited opportunity to develop trust and rapport, and to achieve an acceptable level of mutual understanding to obtain informed consent; Ethnicity is only considered in the context of clinical relevance, cultural competency is low and there is a lack of diversity among geneƟc health pracƟƟoners and staff; and racial bias of pracƟƟoners [ 28,29,31,34,35] Trust in health services are highly variable; awareness of geneƟc services and the potenƟal benefits; aƫtudes to potenƟal benefits; cultural beliefs; perceived and actual financial barriers; compeƟng health prioriƟes; and individual preferences for invesƟgaƟng familial and reproducƟve risks, geneƟc literacy impact likelihood of aƩendance [28,29,[32][33][34][35]. (KinTrak, for years 2015-2017).…”

Supporting Indigenous health equity strategic planning: a Queensland perspective

“…Considering Queensland's geographic vastness, physical accessibility of health services will likely elicit questions about the local community's access to emergency air transport services. Additionally, improving information accessibility for culturally safe, appropriate access to relatively complex services requiring more extensive support, such as clinical genetics and medical genomics services, is crucial 11,12 …”

“…Additionally, improving information accessibility for culturally safe, appropriate access to relatively complex services requiring more extensive support, such as clinical genetics and medical genomics services, is crucial. 11 , 12 …”

Exploring self-determined solutions to service and system challenges to promote social and emotional wellbeing in Aboriginal and Torres Strait Islander people: a qualitative study

“…The targeted and multigenerational actions of the colonial project continue to manifest in the lives of Aboriginal and Torres Strait Islander people ( 1 , 4 ) in the form of systemic racism ( 5 ) and inequitable income, employment, education and psychosocial distress ( 6 ) alongside barriers to access for both health care ( 7 ) and community services ( 8 ). Access to services is fraught due to unequal access to financial resources, transport challenges ( 7 ), lack of cultural safety, communication difficulties, referral challenges, absence of Aboriginal and Torres Strait Islander support services ( 9 ), stigmatisation and fear of discrimination ( 10 ). Such barriers to crucial health care undoubtedly contributes to unacceptable and inequitable health and wellbeing outcomes ( 4 ).…”