Aboriginal and Torres Strait Islander people's domains of wellbeing: A comprehensive literature review

Butler, Tamara; Anderson, Kate; Garvey, Gail; Cunningham, Joan; Ratcliffe, Julie; Tong, Allison; Whop, Lisa J.; Cass, Alan; Dickson, Michelle; Howard, Kirsten

doi:10.1016/j.socscimed.2019.06.004

Cited by 129 publications

(176 citation statements)

References 78 publications

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“…Cultural aspects of life are central to Indigenous world views (17,18) and are commonly prioritised above treatment outcomes (19), which contrasts with the disease-oriented approach of the biomedical system. Patient experience measurement instruments may not re ect the world views and priorities of Indigenous people (15), as has been shown regarding supportive care needs (20), health related quality of life (21), wellbeing (22) and social and emotional wellbeing (23). Although there may be some aspects of existing standard measures that are relevant to Indigenous people, their use for Indigenous people presumes common de nitions, values, needs and perceptions of health; a presumption which is often inappropriate (20)(21)(22)(23)(24).…”

Section: Recent Efforts Have Been Made To Consider the Adequacy Of Exmentioning

confidence: 99%

“…. However, these are recognised as important indicators of quality of care and should be included in data collection and reporting.As has been demonstrated in the existing literature, it is insu cient to simply translate existing tools into a language or format that reaches Indigenous people(20)(21)(22)(23). The Picker PCC domains(25), which have informed patient experience measures in Australia for many years(36), do not originate from an Indigenous world view and may miss core principles relevant to Indigenous populations.…”

mentioning

confidence: 99%

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Measuring Health Care Experiences that Matter to Indigenous People in Australia with Cancer: Identifying Critical Gaps in Existing Tools

Green

Cunningham

Anderson

et al. 2020

Preprint

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Background: The measurement of patients’ experiences of healthcare is increasingly used as an indicator of the quality of care. There are concerns that many mechanisms used to collect patient experience data produce large amounts of superficial data, while missing deeper, more nuanced information that is meaningful to the patient, and that insufficient attention is paid to whether the information is used to make a difference to health care. This is particularly so for Indigenous people in Australia, whose health care experience is impacted by the context of colonisation and discordance between Indigenous understandings of health and the biomedical health system. The aim of this study was to assess the extent to which existing patient experience measures currently in use in Australia collect information about the most critical aspects of cancer care, as identified by Indigenous people affected by cancer and their health care providers in previous research. Methods: A two-stage process was used to examine the adequacy of existing patient experience measures for Indigenous people in Australia: (1) relevant tools and measures were identified and assessed, and four measures were selected as suitable comparators; (2) the comparators were examined in detail and mapped against the topics identified in our earlier research as important to Indigenous people affected by cancer. Gaps in topic coverage in the comparators were identified. Results: No comparators completely captured the critical aspects of cancer care identified by Indigenous people with cancer and their health care providers. The number of topics ‘partially’ captured by the four comparators ranged from 4 to 7 out of 9. While most topics were at least partially covered, the lack of questions around culture and cultural safety was notable. Conclusions: Existing patient experience measurement tools are likely to miss some key aspects of Indigenous peoples’ experiences of cancer care in Australia. Failure to adequately assess experiences of care related to cultural safety may compromise efforts to improve health outcomes. Addressing the gaps requires the development of experience measures that are strengths-based, reflect an Indigenous world view and measure aspects of experience that are relevant to Indigenous people.

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Section: Recent Efforts Have Been Made To Consider the Adequacy Of Exmentioning

confidence: 99%

mentioning

confidence: 99%

Measuring Health Care Experiences that Matter to Indigenous People in Australia with Cancer: Identifying Critical Gaps in Existing Tools

Green

Cunningham

Anderson

et al. 2020

Preprint

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“…Indigenous Australian concepts of health are different as they are defined more broadly and include not only the health of the individual but also the health of the family and community (Priest et al 2012). Although little research has investigated the perceptions of 'HR-QoL' of Indigenous Australians specifically, there has been considerable work defining 'health and wellbeing' and 'quality of life' in general (Butler et al 2019). Few studies have tried to adapt and/or validate existing HR-QoL measures for Indigenous Australians (Angell et al 2016).…”

Section: Introductionmentioning

confidence: 99%

“…Few studies have tried to adapt and/or validate existing HR-QoL measures for Indigenous Australians (Angell et al 2016). However, studies (Butler et al 2019;Le Grande et al 2017;Angell et al 2016) indicate that further consultation with Indigenous Australian people is needed to properly define HR-QoL and create a measurement tool that is inclusive of culturally relevant domains and indicators.…”

Section: Introductionmentioning

confidence: 99%

Concepts of Health-Related Quality of Life of Australian Aboriginal and Torres Strait Islander Children: Parent Perceptions

Butten

Newcombe

Chang

et al. 2020

Applied Research Quality Life

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Health-related quality of life (HR-QoL) is a valued patient-related outcome measure. HR-QoL is typically measured using a psychometric tool. Although there are a number of general and illness-specific HR-QoL measurement tools available globally, no tool has been validated for Australian Aboriginal and/or Torres Strait Islander children. The purpose of this study was to gather Australian Aboriginal and Torres Strait Islander parent/carer perspectives of HR-QoL in children in order to inform the development of a culturally appropriate tool. Yarning circles and face to face interviews were used to document the experiences of parents and carers of Aboriginal and Torres Strait Islander children who had experienced a chronic illness. Participants were recruited through word of mouth and via established social and professional networks in Queensland and the Northern Territory of Australia. Information collected was transcribed and analysed thematically and placed into a concept map. HR-QoL was defined as more than just physical, social and psychological wellbeing. Family and social support were valued aspects of HR-QoL, as was knowledge, communication and the relationship with the health system. Participants described the importance of being heard; their voice trusted and valued by health practitioners. Racism and prejudicial behaviour had negative impacts on HR-QoL. The concepts of HR-QoL identified in this study are not included in conventional HR-QoL measurement tools. Consideration should be given to concepts proposed by Australian Aboriginal and Torres Strait Islander populations in order to adequately capture perceived HR-QoL.

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“…16 In assessing an individual's emotional well-being, it is critical to consider the cultural contexts and the environment in which the people live. 17 Measures developed within a given cultural group can provide comprehensive information on Indigenous well-being, 18 with a formal cross-cultural adaptation process then allowing validated questionnaires to be used across cultural groups and geographical locations. 18 The aims of this study were threefold: (a) to describe the process of consultation and adaptation of emotional wellbeing and substance use questionnaires to a computerised format for use in Indigenous and non-Indigenous young adults; (b) to develop a programme capable of immediately highlighting those at increased risk of psychological distress and/or suicidal ideation; and (c) to report the use and internal validity of this method in Indigenous and non-Indigenous young adults.…”

Section: Introductionmentioning

confidence: 99%

Computerised emotional well-being and substance use questionnaires in young Indigenous and non-Indigenous Australian adults

et al. 2020

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Background: Mental health disorders rank among the most substantial causes of morbidity and mortality worldwide. Almost half of Australian adults experience mental illness at some point in their lifetime, with Indigenous Australians disproportionally affected. Thus, it is imperative that effective, acceptable screening tools are used, which are tailored to the target population. Objectives: This research investigates the methodology of computerised questionnaires in assessing the emotional well-being and substance use in Indigenous and non-Indigenous young adults. Methods: Cross-sectional data from young adults (21–28 years) in the Life Course Program, Northern Territory, Australia, are presented. Through an extensive consultation process, validated questionnaires were adapted to a computerised format suitable for both remote and urban residing Indigenous and non-Indigenous adults. Results: Of the 576 participants (459 Indigenous, 117 non-Indigenous) available for assessment, high consent rates were seen, with completion rates >86%. One in three young adults in this cohort were highlighted as ‘at risk’ of psychological distress, and one in five as ‘at risk’ of suicidal ideation or self-harm. Conclusion: The target population of this study were at a critical age with high levels of psychological distress and suicidal ideation reported, particularly in Indigenous young adults. This simple, user-friendly, pictorial programme allowed assessment of a sensitive topic anonymously, while simultaneously collating data and identifying those at high risk, irrespective of literacy level or cultural background.

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Aboriginal and Torres Strait Islander people's domains of wellbeing: A comprehensive literature review

Cited by 129 publications

References 78 publications

Measuring Health Care Experiences that Matter to Indigenous People in Australia with Cancer: Identifying Critical Gaps in Existing Tools

Measuring Health Care Experiences that Matter to Indigenous People in Australia with Cancer: Identifying Critical Gaps in Existing Tools

Concepts of Health-Related Quality of Life of Australian Aboriginal and Torres Strait Islander Children: Parent Perceptions

Computerised emotional well-being and substance use questionnaires in young Indigenous and non-Indigenous Australian adults

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