Research, information and consent for the Australian Health Survey: a separate standard for Indigenous people?

Rowley, Kevin; Thorpe, Alister

doi:10.5694/j.1326-5377.2011.tb03254.x

Cited by 5 publications

(4 citation statements)

References 3 publications

(5 reference statements)

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“…Consent was sought from Aboriginal contributors at various stages of participation (68,69). Following introductions between the interviewing researcher and the participant/s, FF facilitated a discussion regarding the purpose of the study and deidentification and use of data.…”

Section: Recruitment and Consent Of Aboriginal Participantsmentioning

confidence: 99%

A Qualitative Study Exploring Perceptions to the Human T Cell Leukaemia Virus Type 1 in Central Australia: Barriers to Preventing Transmission in a Remote Aboriginal Population

Fowler

Einsiedel

2022

Front. Med.

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BackgroundCentral Australia has the highest recorded prevalence of infection with the human T cell leukaemia virus type 1 (HTLV-1) worldwide. Each of the clinical diseases associated with HTLV-1 have been reported in this region, including deaths due to adult T cell leukaemia, which is causally linked to HTLV-1. Nevertheless, no public health response has been implemented to reduce HTLV-1 transmission among the affected Aboriginal population. In the first study to explore the perceptions of healthcare professionals along with those of Aboriginal people whose communities are actually impacted by HTLV-1, we sought to understand the barriers to preventing HTLV-1 transmission in this remote area.Methodology/Principal FindingsSemi and un-structured interviews were conducted with 30 Australian Aboriginal people, 26 non-Aboriginal healthcare professionals and 3 non-Aboriginal community workers. The purpose of the interviews was to explore perceptions towards HTLV-1 in a health context with a focus on sexual and reproductive rights. Deductive and inductive analyses were applied to the data and a decolonizing lens brought peripheral stories to the fore. A major finding was the contrast between views expressed by Aboriginal participants and healthcare professionals regarding the provision of knowledge to those affected. Aboriginal participants consistently articulated that they and their communities should be informed of, and can hold, knowledges pertaining to HTLV-1. This finding controverted the perceptions of healthcare professionals that the complexities of the virus would not be well-understood by their Aboriginal patients and that sharing HTLV-1 knowledges might overwhelm Aboriginal people. Further analyses revealed a spectrum of understanding and clinical practice, while also delineating signs of an imagined public health response.Conclusions/SignificanceHTLV-1 remains a neglected infection in Australia. Knowledge of HTLV-1 is held by a privileged medical elite and does not flow to marginalised Aboriginal people living in affected communities. We demonstrate that differences in the perspectives of stakeholders presents a significant barrier to the development of cohesive, culturally safe prevention programs that foster a shared knowledge of HTLV-1. The interview data suggests that a successful public health program is likely to require a dual approach that includes clinical care and community-driven health promotion. Aspects of this approach, which would raise awareness and potentially reduce transmission and lower HTLV-1 prevalence in Central Australia, may be applicable to other endemic settings with similar conditions of social disadvantage, geographic remoteness, resource limitations and cross-cultural challenges.

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Section: Recruitment and Consent Of Aboriginal Participantsmentioning

confidence: 99%

A Qualitative Study Exploring Perceptions to the Human T Cell Leukaemia Virus Type 1 in Central Australia: Barriers to Preventing Transmission in a Remote Aboriginal Population

Fowler

Einsiedel

2022

Front. Med.

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“…W hile interest in Indigenous health research has grown in recent decades, its inglorious history 1 has often left Indigenous Australians feeling exploited 2–8 . At worst, research acted as an overt tool of colonial control espousing and enacting racial pseudoscientific theory and, at best, Aboriginal and Torres Strait Islander peoples, communities, aspirations and realities were ignored 9,10 .…”

Section: The Inala Community Jury Modelmentioning

confidence: 99%

“It puts a human face on the researched” – A qualitative evaluation of an Indigenous health research governance model

Bond

Foley

Askew

2016

Australian and New Zealand Journal of Public Health

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Objective: To describe the Inala Aboriginal and Torres Strait Islander Community Jury for Health Research, and evaluate its usefulness as a model of Indigenous research governance within an urban Indigenous primary health care service from the perspectives of jury members and researchers. Methods: Informed by a phenomenological approach and using narrative inquiry, a focus group was conducted with jury members and key informant interviews were undertaken with researchers who had presented to the Community Jury in its first year of operation. Results: The jury was a site of identity work for researchers and jury members, providing an opportunity to observe and affirm community cultural protocols. Although researchers and jury members had differing levels of research literacy, the jury processes enabled respectful communication and relationships to form, which positively influenced research practice, community aspirations and clinical care. Discussion: The jury processes facilitated transformative research practice among researchers and resulted in transference of power from researchers to the jury members, to the mutual benefit of both. Conclusion: Ethical Indigenous health research practice requires an engagement with Indigenous peoples and knowledge at the research governance level, not simply as subjects or objects of research.

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“…On the other hand, there are also circumstances in which it is useful to stratify CVD risk using a restricted set of available risk factors [14]. For example, sometimes Indigenous participants were excluded from laboratory tests according to different rules [15]. When information on traditional risk factors is not available, a standard approach for risk stratification is to produce a model or risk chart based on a reduced set of factors [16].…”

Section: Introductionmentioning

confidence: 99%

Development and Use of Prediction Models for Classification of Cardiovascular Risk of Remote Indigenous Australians

Tran‐Duy

McDermott

Knight

et al. 2020

Heart, Lung and Circulation

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Background Cardiovascular disease (CVD) is the leading cause of death for Indigenous Australians. There is widespread belief that current tools have deficiencies for assessing CVD risk in this high-risk population. We sought to develop a 5-year CVD risk score using a wide range of known risk factors to further improve CVD risk prediction in this population. Methods We used clinical and demographic information on Indigenous people aged between 30 and 74 years without a history of CVD events who participated in the Well Person's Health Check (WPHC), a community-based survey. Baseline assessments were conducted between 1998 and 2000, and data were linked to administrative hospitalisation and death records for identification of CVD events. We used Cox proportional hazard models to estimate the 5-year CVD risk, and the Harrell's c-statistic and the modified Hosmer-Lemeshow (mH-L) x 2 statistic to assess the model discrimination and calibration, respectively. Results The study sample consisted of 1,583 individuals (48.1% male; mean age 45.0 year). The risk score consisted of sex, age, systolic blood pressure, diabetes mellitus, waist circumference, triglycerides, and albumin creatinine ratio. The bias-corrected c-statistic was 0.72 and the bias-corrected mH-L x2 statistic was 12.01 (p-value, 0.212), indicating good discrimination and calibration, respectively. Using our risk score, the CVD risk of the Indigenous Australians could be stratified to a greater degree compared to a recalibrated Framingham risk score. Conclusions A seven-factor risk score could satisfactorily stratify 5-year risk of CVD in an Indigenous Australian cohort. These findings inform future research targeting CVD risk in Indigenous Australians.

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Research, information and consent for the Australian Health Survey: a separate standard for Indigenous people?

Cited by 5 publications

References 3 publications

A Qualitative Study Exploring Perceptions to the Human T Cell Leukaemia Virus Type 1 in Central Australia: Barriers to Preventing Transmission in a Remote Aboriginal Population

A Qualitative Study Exploring Perceptions to the Human T Cell Leukaemia Virus Type 1 in Central Australia: Barriers to Preventing Transmission in a Remote Aboriginal Population

“It puts a human face on the researched” – A qualitative evaluation of an Indigenous health research governance model

Development and Use of Prediction Models for Classification of Cardiovascular Risk of Remote Indigenous Australians

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