ORCID Profile
0000-0002-7180-276X
Current Organisations
James Cook University
,
MJD Foundation
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Publisher: Informa UK Limited
Date: 02-10-2022
DOI: 10.1080/07434618.2022.2129782
Abstract: Yolŋu (Aboriginal Australians of northeast Arnhem Land) are interested in developing augmentative and alternative communication (AAC) systems in their own languages to support communication opportunities and participation for their family members living with Machado-Joseph disease. Designing AAC systems in Aboriginal languages requires consideration of unique linguistic and cultural elements. Participatory action research in strength-based communication contexts was carried out by Yolŋu and
Publisher: figshare
Date: 2021
Publisher: Springer Science and Business Media LLC
Date: 03-2021
DOI: 10.1186/S12939-021-01402-9
Abstract: Indigenous people tend to exhibit a higher burden of disability than their non-Indigenous counterparts, and are often underserved by disability services. Engaging appropriately with Indigenous communities, families and in iduals in the initial stages of disability assessment and planning is crucial in order to build trust and understanding of disability service models and ensure that Indigenous people receive support that is tailored to their needs and cultural realities. This article aims to identify key elements of culturally competent communication in Indigenous disability assessment and planning, and provide recommendations for strengthening capacity in this area. This qualitative research was designed to involve Aboriginal and Torres Strait Islander people at all stages and to reflect the views of Aboriginal and Torres Strait Islander researchers, people and families affected by disability and the community-controlled health sector. Semi-structured in idual interviews were undertaken with staff implementing the National Disability Insurance Scheme (NDIS) ( n = 4), NDIS participants ( n = 24), disability support providers and organisational partners ( n = 19) and Community Connectors ( n = 8) in Queensland and the Northern Territory of Australia. Key themes derived from thematic analysis included appropriate and adequate engagement of in iduals with disability and their families, the role of trusted relationships, and culturally safe and appropriate communication during planning meetings. Overall, the research findings highlight that a low level of cultural competence in the initial stages of the disability assessment and planning process exacerbated participant confusion and distrust towards assessment staff and the NDIS. Given difficulties in communication, participant understanding of the NDIS was generally limited. The necessity of culturally safe and appropriate use of interpreters was stressed, as was the role of trusted in iduals, including existing service providers, Community Connectors and family members in providing a solid base for participant understanding of the NDIS. Cultural competence in disability assessment and planning can be strengthened through multi-level engagement with the Aboriginal community-controlled sector and community leaders. Implementing mechanisms to enable the involvement of families, trusted service providers and Community Connectors can support a more meaningful understanding of in iduals’ needs within their cultural context and in relation to their cultural roles.
Publisher: figshare
Date: 2021
Publisher: Informa UK Limited
Date: 02-10-2022
Publisher: Taylor & Francis
Date: 2020
Publisher: Public Library of Science (PLoS)
Date: 29-10-2020
Publisher: Springer Science and Business Media LLC
Date: 17-04-2021
DOI: 10.1186/S12939-021-01443-0
Abstract: 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. 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 s le 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. 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. 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.
Publisher: figshare
Date: 2021
Publisher: Elsevier BV
Date: 05-2022
No related grants have been discovered for Libby Massey.