scholarly journals “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

2020 ◽  
Author(s):  
Philippa Dalach ◽  
Ravi Savarirayan ◽  
Gareth Baynam ◽  
Julie McGaughran ◽  
Emma Kowal ◽  
...  
Keyword(s):  
Health Services ◽  
Torres Strait Islander ◽  
Clinical Genetics ◽  
Torres Strait Islander People ◽  
Patient Journey ◽  
Service Engagement ◽  
Genetics Services ◽  
Clinical Genetics Services ◽  
Torres Strait ◽  
Safe Care

Abstract BackgroundAboriginal 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.MethodsA 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 2014-2018. 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. ResultsBarriers 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.ConclusionsThere 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.

scholarly journals “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

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Philippa Dalach ◽  
Ravi Savarirayan ◽  
Gareth Baynam ◽  
Julie McGaughran ◽  
Emma Kowal ◽  
...  
Keyword(s):  
Health Services ◽  
Torres Strait Islander ◽  
Clinical Genetics ◽  
Torres Strait Islander People ◽  
Patient Journey ◽  
Service Engagement ◽  
Genetics Services ◽  
Clinical Genetics Services ◽  
Torres Strait ◽  
Safe Care

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.

Exploring Leave Events for Aboriginal and Torres Strait Islander People From Australian Tertiary Services: A Systematic Literature Review

2020 ◽  
Author(s):  
Julieann Coombes ◽  
Syazlin Sazali ◽  
Tamara Mackean ◽  
Margaret Banks ◽  
Nilva Egana ◽  
...  
Keyword(s):  
Health Services ◽  
Torres Strait Islander ◽  
Primary Objective ◽  
Google Scholar ◽  
Evidence Based ◽  
Torres Strait Islander People ◽  
Policy Document ◽  
Manual Search ◽  
Preventative Measures ◽  
Torres Strait

Abstract Objective The primary objective of this systematic review was to identify contributing causes to leave events from health services for Australian patients. The second objective was to identify evidence based preventative measures for effectively reducing leave events, which could be implemented. Study design Articles published in Australia were included if they reported on Aboriginal and/or Torres Strait Islander people and other Australians who leave health services prior to being seen or discharged by a medical professional. Two researchers screened each abstract and independently reviewed full text articles. Study quality was assessed, and data were extracted with standardised tools.Data sources MEDLINE and Google Scholar were searched for relevant publications from May 27th to June 30th, 2020. The search returned 30 relevant records. Nine additional records were identified by manual search in Google Scholar. References of included articles were searched. From these articles, 11 met the inclusion criteria. Of these 5 were from New South Wales, 2 from Western Australia, 1 each from Queensland and Northern Territory, two were conducted nationally. Data synthesis Four studies used a retrospective cohort method, one included patient interviews,(1) Four cohort studies and two systematic reviews were included. Two government reports and one health policy document were included in this review. All studies were from Australia using mixed methods.Conclusions This review identified causes for, and evidence based preventative measures that have been or could be implemented to reduce Leave Events and describes additional terms and definitions used for Leave Events.

scholarly journals Improving the patient journey for Aboriginal and Torres Strait Islander people with acute coronary syndromes

2012 ◽  
Vol 197 (1) ◽  
pp. 27-27
Author(s):  
Robert D Grenfell ◽  
Vicki Wade ◽  
Eleanor Clune ◽  
Kelley O'Donohue ◽  
Prue Power
Keyword(s):  
Acute Coronary Syndromes ◽  
Torres Strait Islander ◽  
Torres Strait Islander People ◽  
Patient Journey ◽  
Coronary Syndromes ◽  
Torres Strait

Gonorrhoea testing and positivity in non-remote Aboriginal Community Controlled Health Services

Sexual Health ◽  
2017 ◽  
Vol 14 (4) ◽  
pp. 320 ◽  
Author(s):  
Mary Ellen Harrod ◽  
Sophia Couzos ◽  
James Ward ◽  
Mark Saunders ◽  
Basil Donovan ◽  
...  
Keyword(s):  
Health Services ◽  
Torres Strait Islander ◽  
Clinical Encounter ◽  
Current Approach ◽  
Research Network ◽  
Torres Strait Islander People ◽  
Remote Communities ◽  
Aboriginal Community ◽  
Torres Strait ◽  
Concurrent Testing

Background Gonorrhoea occurs at high levels in young Aboriginal and Torres Strait Islander people living in remote communities, but there are limited data on urban and regional settings. An analysis was undertaken of gonorrhoea testing and positivity at four non-remote Aboriginal Community Controlled Health Services participating in a collaborative research network. Methods: This was a retrospective analysis of clinical encounter data derived from electronic medical records at participating services. Data were extracted using the GRHANITE program for all patients aged 15–54 years from 2009 to 2013. Demographic characteristics and testing and positivity for gonorrhoea were calculated for each year. Results: A total of 2971 patients (2571 Aboriginal and/or Torres Strait Islander) were tested for gonorrhoea during the study period. Among Aboriginal and/or Torres Strait Islander patients, 40 (1.6%) tested positive. Gonorrhoea positivity was associated with clinic location (higher in the regional clinic) and having had a positive chlamydia test. By year, the proportion of patients aged 15–29 years tested for gonorrhoea increased in both men (7.4% in 2009 to 15.9% in 2013) and women (14.8% in 2009 to 25.3% in 2013). Concurrent testing for chlamydia was performed on 86.3% of testing occasions, increasing from 75% in 2009 to 92% in 2013. Factors related to concurrent testing were sex and year of test. Conclusions: The prevalence of gonorrhoea among young Aboriginal and/or Torres Strait Islander people in non-remote settings suggests that the current approach of duplex testing for chlamydia and gonorrhoea simultaneously is justified, particularly for women.

scholarly journals Optimal Cancer Care for Aboriginal and Torres Strait Islander People: A Shared Approach to System Level Change

2020 ◽  
pp. 108-114 ◽  
Author(s):  
Jennifer Chynoweth ◽  
Meaghan M. McCambridge ◽  
Helen M. Zorbas ◽  
Jacinta K. Elston ◽  
Robert J.S. Thomas ◽  
...  
Keyword(s):  
Health Services ◽  
Health Professionals ◽  
Cancer Care ◽  
Torres Strait Islander ◽  
Care Pathway ◽  
System Level ◽  
Culturally Appropriate ◽  
Torres Strait Islander People ◽  
Cultural Appropriateness ◽  
Torres Strait

PURPOSE To improve cancer outcomes for Aboriginal and Torres Strait Islander people through the development and national endorsement of the first population-specific optimal care pathway (OCP) to guide the delivery of high-quality, culturally appropriate, and evidence-based cancer care. METHODS An iterative methodology was undertaken over a 2-year period, and more than 70 organizations and individuals from diverse cultural, geographic, and sectorial backgrounds provided input. Cancer Australia reviewed experiences of care and the evidence base and undertook national public consultation with the Indigenous health sector and community, health professionals, and professional colleges. Critical to the OCP development was the leadership of Aboriginal and Torres Strait Islander health experts and consumers. RESULTS The OCP received unanimous endorsement by all federal, state, and territory health ministers. Key elements of the OCP include attention to the cultural appropriateness of the health care environment; improvement in cross-cultural communication; relationship building with local community; optimization of health literacy; recognition of men’s and women’s business; and the need to use culturally appropriate resources. The OCP can be used as a tool for health services and health professionals to identify gaps in current cancer services and to inform quality improvement initiatives across all aspects of the care pathway. CONCLUSION The development of the OCP identified a number of areas that require prioritization. Ensuring culturally safe and accessible health services is essential to support early presentation and diagnosis. Multidisciplinary treatment planning and patient-centered care are required for all Aboriginal and Torres Strait Islander people, irrespective of location. Health planners and governments acknowledge the imperative for change and have expressed strong commitment to work with Indigenous Australians to improve the accessibility, cultural appropriateness, and quality of cancer care.

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

2021 ◽  
Author(s):  
Joanne Luke ◽  
Philippa Dalach ◽  
Lindsay Tuer ◽  
Ravi Savarirayan ◽  
Angeline Ferdinand ◽  
...  
Keyword(s):  
Health Services ◽  
Torres Strait Islander ◽  
Indigenous Populations ◽  
Equitable Access ◽  
Torres Strait Islander People ◽  
Clinical Genetic ◽  
Clinical Genomics ◽  
Equity In Access ◽  
Torres Strait ◽  
Equity Of Access

Abstract Globally, there is a recognised need for a greater commitment to an equity agenda in clinical genomics and precision medicine. Fundamental to this, is the equitable access by all to services providing genomic health care. However, achieving this remains constrained by a paucity of evidence that quantifies (in)equity of access to clinical genomics, particularly amongst Indigenous populations. Using administrative data from clinical genetic health services located in three jurisdictions (States/Territories) in Australia, we investigate equity in the scheduling and attendance of appointments among Aboriginal and/or Torres Strait Islander people, compared to non-Aboriginal and/or Torres Strait Islander people. For 15554 appointments scheduled between 2014-2018, adjusted Multivariate Poisson Regression models revealed that Aboriginal and/or Torres Strait Islander people were scheduled fewer appointments (IRR 0.73 [0.68-0.80], <0.001) and attended at lower rates (IRR 0.85 [0.78-0.93], <0.001). Within this population, adults, females, people living in remote locations, and those presenting in relation to cancer or prenatal indications experienced the greatest disparity in access. As the first quantitative, multi-jurisdictional study to measure access to clinical genetic health services, these results provide important baseline data related to the reach and equity of these services in Australia and contribute to the global effort to address equity in genomic health.

Does attending Work It Out – a chronic disease self-management program – affect the use of other health services by urban Aboriginal and Torres Strait Islander people with or at risk of chronic disease? A comparison between program participants and non-participants

2019 ◽  
Vol 25 (5) ◽  
pp. 464
Author(s):  
Jie Hu ◽  
Tabinda Basit ◽  
Alison Nelson ◽  
Emma Crawford ◽  
Lyle Turner
Keyword(s):  
Chronic Disease ◽  
Health Services ◽  
Torres Strait Islander ◽  
Healthcare Services ◽  
Management Program ◽  
Torres Strait Islander People ◽  
Team Care ◽  
Management Plans ◽  
Torres Strait ◽  
Services Use

Work It Out is a holistic chronic disease self-management program for urban Aboriginal and Torres Strait Islander people in Queensland, which is part of an integrated and comprehensive system of care for chronic disease management. This study examines differences in primary healthcare services use between Work It Out participants and non-participants. This retrospective observational study of services use, analysed data extracted from the clinical medical records system and Work It Out program assessments. General practitioner and allied health services use were compared among the participants and non-participants using logistic regression models and zero-truncated Poisson and negative binomial regression models. Compared with non-participants, Work It Out participants were more likely to use GP management plans, GP team care arrangements, GP mental health consultation and subsequent allied health services. Among those who used the services more than once, Work It Out participants had higher service use rates than non-participants for Aboriginal and Torres Strait Islander health assessments, GP management plans, team care arrangements and podiatry, physiotherapy and dietetic services. Engagement in Work It Out can facilitate the use of primary healthcare services, which are important for chronic disease management for urban Aboriginal and Torres Strait Islander people.

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