Adapting wellbeing research tools for Aboriginal and Torres Strait Islander people with chronic kidney disease

Nagel, Tricia; Sweet, Michelle; Dingwall, Kylie; Puszka, Stefanie; Hughes, Jaquelyne T.; Kavanagh, David J.; Cass, Alan; Howard, Kirsten; Majoni, Sandawana William

doi:10.1186/s12882-020-01776-y

Cited by 17 publications

(15 citation statements)

References 22 publications

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“…For example, while successive Australian governments have committed to improving the health and wellbeing of Aboriginal and Torres Strait Islander people, to date, wellbeing has not been captured using measures that are based on the values and preferences of Aboriginal and Torres Strait Islander people [4,19]. Non-Indigenous quality of life measures, adapted clinical measures or generic 'indicators' (e.g., income, level of education, household size) have instead been used to measure quality of life and wellbeing [20][21][22]. Existing quality of life tools are underpinned by Western biomedical constructs of wellbeing and quality of life that focus on an individual's health and absence of disease [23].…”

Section: Introductionmentioning

confidence: 99%

The Fabric of Aboriginal and Torres Strait Islander Wellbeing: A Conceptual Model

Garvey

Anderson

Gall

et al. 2021

IJERPH

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Wellbeing is culturally bound and is shaped by many aspects of life, including experiences, beliefs and values. As such, in order to accurately measure wellbeing for a specific cultural group, it is necessary to understand the experiences, beliefs and values that influence the conception and experience of wellbeing of that group. This paper presents a conceptual model of wellbeing for Aboriginal and Torres Strait Islander people, which was developed from a large national qualitative study that explored the views of 359 Aboriginal and Torres Strait Islander adults. An Aboriginal- and Torres Strait Islander-led research team used an Indigenist research approach to iteratively develop this conceptual model, called the Fabric of Aboriginal and Torres Strait Islander Wellbeing model, which takes inspiration from Aboriginal and Torres Strait Islander weaving traditions whereby individual strands are twined to create fabrics that are both beautiful and strong. This reflects our findings that the parts of life that are most important to wellbeing for many Aboriginal and Torres Strait Islander people are interwoven with their families, communities and culture.

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Section: Introductionmentioning

confidence: 99%

The Fabric of Aboriginal and Torres Strait Islander Wellbeing: A Conceptual Model

Garvey

Anderson

Gall

et al. 2021

IJERPH

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“…Each dimension in the EQ-5D has been subdivided into five levels (5 L) to form EQ-5D-5L. EQ-5D is a widely utilised multi-attribute utility instrument used for estimating utility, and has been used to assess health-related quality of life among Indigenous populations, both in Australia [ 17 , 18 ] and elsewhere [ 19 , 20 ]. However, to the best of our knowledge EQ-5D-5L has not been used among the Indigenous Australian population to examine oral health outcomes.…”

Section: Introductionmentioning

confidence: 99%

Poor self-rated oral health associated with poorer general health among Indigenous Australians

Hedges

Garvey

et al. 2021

BMC Public Health

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Background Oral diseases negatively impact general health, affecting physical, psychological, social and emotional wellbeing, and ability to give back to community. The relationship between poor oral health, and general health and wellbeing among Indigenous Australians has not been documented. Working in partnership with seven Indigenous communities in South Australia, this study aimed to: 1) quantify self-rated oral health and health-related quality of life and; 2) investigate associations between poor self-rated oral health and general health among Indigenous Australian adults. Methods Data was collected from a large convenience sample of Indigenous Australians aged 18+ years from Feb 2018 to Jan 2019. General health-related quality of life, as the main outcome variable, was measured by calculating disutility scores with the five individual EQ-5D dimensions (EuroQol instrument: EQ-5D-5L), then classified as ‘no problem’ and ‘at least one problem’. Self-reported oral health, as the main explanatory, was dichotomised into ‘fair or poor’ and ‘excellent, very good or good’. Multivariable log-Poisson regression models were used to estimate associations between poor self-rated oral health and general health by calculating mean rate ratios (MRR) for disutility scores and prevalence ratios (PR) for individual dimensions, after adjusting for social-demographic characteristics and health-related behaviours. Results Data were available for 1011 Indigenous South Australian adults. The prevalence of ‘fair or poor’ self-rated oral health was 33.5%. The mean utility score was 0.82 (95% CI: 0.81–0.83). Compared with those rating their oral health as ‘excellent or very good or good’, those who rated their oral health as ‘fair or poor’ had a mean disutility score that was 1.6 (95% CI: 1.1–2.2) times higher, and the prevalence of at least one problem ranged from 90 to 160% higher for individual EQ-5D dimensions. Conclusions Fair or poor self-rated oral health among Indigenous persons in South Australia was associated with poor general health as measured by EQ-5D-5L disutility. The relationship was especially evident with respect to mobility, self-care and anxiety/depression. The findings emphasise the importance of oral health as predictors of general health among Indigenous Australians.

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“…Information about Aboriginal and Torres Strait Islander people’s technology use [ 12 , 69 ] was also included. A total of 3 mental health treatment apps designed to meet the needs of Aboriginal and Torres Strait Islander people were identified, with 1 (33%) app specifically designed for youth [ 10 , 15 , 16 , 70 , 71 ]. In the following section, we present recommendations from the literature across multiple population groups, including youth, adults, and Indigenous populations, recognizing the varied depth of understanding in each field.…”

Section: Resultsmentioning

confidence: 99%

Determining Priorities in the Aboriginal and Islander Mental Health Initiative for Youth App Second Phase Participatory Design Project: Qualitative Study and Narrative Literature Review

Povey¹,

Sweet²,

Nagel³

et al. 2022

JMIR Form Res

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Background Digital mental health tools can promote access to culturally safe early intervention mental health services for Aboriginal and Torres Strait Islander young people. Participatory design methodology facilitates user engagement in the co-design of digital resources. However, several challenges have been identified that limit the methodological rigor of this approach. Objective This paper aims to present an in-depth account of the second phase of participatory design in the development of the Aboriginal and Islander Mental Health Initiative for Youth (AIMhi-Y) app. Methods A first idea storyboard, generated from a formative phase of the AIMhi-Y project, was refined through a series of youth co-design workshops and meetings. A narrative review of the literature, 6 service provider interviews, and engagement with an expert reference group also informed the design process. Generative design activities, storyboarding, discussions, and voting strategies were used. Results The participatory design process identified the app features preferred by young people and service providers and assessed their alignment with current recommendations from the scientific literature. Findings from the co-design process are presented across 9 app characteristic domains. Integration of findings into app design proved complex. Although most preferred features identified by young people were included to some degree, other inclusions were restricted by budget, time, and the need to integrate best practice recommendations. A process of prioritization was required. Conclusions Participatory design is often cited in the development of digital mental health resources; however, methods are diverse and often lack detailed descriptions. This study reports the outcomes and strategies used to determine priorities in the second phase of the development of the AIMhi-Y app. We provide an example and the key learnings to inform others seeking to use participatory design with a similar cohort.

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Adapting wellbeing research tools for Aboriginal and Torres Strait Islander people with chronic kidney disease

Cited by 17 publications

References 22 publications

The Fabric of Aboriginal and Torres Strait Islander Wellbeing: A Conceptual Model

The Fabric of Aboriginal and Torres Strait Islander Wellbeing: A Conceptual Model

Poor self-rated oral health associated with poorer general health among Indigenous Australians

Determining Priorities in the Aboriginal and Islander Mental Health Initiative for Youth App Second Phase Participatory Design Project: Qualitative Study and Narrative Literature Review

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