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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

Dalach, P, Savarirayan, Ravi, Baynam, G, McGaughran, J, Kowal, Emma, Massey, L, Jenkins, M, Paradies, Yin and Kelaher, M 2021, 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, International Journal for Equity in Health, vol. 20, no. 1, pp. 1-13, doi: 10.1186/s12939-021-01443-0.

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Title 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
Author(s) Dalach, P
Savarirayan, Ravi
Baynam, G
McGaughran, J
Kowal, EmmaORCID iD for Kowal, Emma orcid.org/0000-0003-3866-3224
Massey, L
Jenkins, M
Paradies, YinORCID iD for Paradies, Yin orcid.org/0000-0001-9927-7074
Kelaher, M
Journal name International Journal for Equity in Health
Volume number 20
Issue number 1
Article ID 103
Start page 1
End page 13
Total pages 13
Publisher Springer
Place of publication Berlin, Germany
Publication date 2021
ISSN 1475-9276
1475-9276
Keyword(s) Aboriginal and Torres Strait islanders
Access to health care
Cultural safety
Genetic health services
Indigenous Australians
Summary 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.
Language eng
DOI 10.1186/s12939-021-01443-0
Indigenous content off
Field of Research 1117 Public Health and Health Services
1608 Sociology
HERDC Research category C1 Refereed article in a scholarly journal
Free to Read? Yes
Persistent URL http://hdl.handle.net/10536/DRO/DU:30150331

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Every reasonable effort has been made to ensure that permission has been obtained for items included in DRO. If you believe that your rights have been infringed by this repository, please contact drosupport@deakin.edu.au.