Codesigning enhanced models of care for Northern Australian Aboriginal and Torres Strait Islander youth with type 2 diabetes: study protocol.

INTRODUCTION: Premature onset of type 2 diabetes and excess mortality are critical issues internationally, particularly in Indigenous populations. There is an urgent need for developmentally appropriate and culturally safe models of care. We describe the methods for the codesign, implementation and evaluation of enhanced models of care with Aboriginal and Torres Strait Islander youth living with type 2 diabetes across Northern Australia. METHODS AND ANALYSIS: Our mixed-methods approach is informed by the principles of codesign. Across eight sites in four regions, the project brings together the lived experience of Aboriginal and Torres Strait Islander young people (aged 10-25) with type 2 diabetes, their families and communities, and health professionals providing diabetes care through a structured yet flexible codesign process. Participants will help identify and collaborate in the development of a range of multifaceted improvements to current models of care. These may include addressing needs identified in our formative work such as the development of screening and management guidelines, referral pathways, peer support networks, diabetes information resources and training for health professionals in youth type 2 diabetes management. The codesign process will adopt a range of methods including qualitative interviews, focus group discussions, art-based methods and healthcare systems assessments. A developmental evaluation approach will be used to create and refine the components and principles of enhanced models of care. We anticipate that this codesign study will produce new theoretical insights and practice frameworks, resources and approaches for age-appropriate, culturally safe models of care. ETHICS AND DISSEMINATION: The study design was developed in collaboration with Aboriginal and Torres Strait Islander and non-Indigenous researchers, health professionals and health service managers and has received ethical approval across all sites. A range of outputs will be produced to disseminate findings to participants, other stakeholders and the scholarly community using creative and traditional formats.

"I Don't Really Know What Diabetes Is": A Qualitative Study Exploring the Experiences of Aboriginal and Torres Strait Islander Young People Aged 10 to 25 Years Living With Type 2 Diabetes in Northern and Central Australia.

OBJECTIVE: Our aim in this study was to gain an understanding of the experiences of Aboriginal and Torres Strait Islander young people aged 10 to 25 years with type 2 diabetes (T2D) living in Northern and Central Australia. METHODS: In this qualitative study we explored participants' experiences of T2D using a social constructionist epistemology and a phenomenologic methodology. Twenty-seven young people participated in semistructured in-depth interviews from 4 primary health-care sites. RESULTS: Three major constructs emerged. Young people experienced a normalisation-shame paradox in response to their diagnosis (partly related to that "everyone has diabetes," as well as the fear that friends "might judge [me]"), had suboptimal levels of understanding of T2D ("I don't really know what diabetes is. I just need somebody to explain to me a bit more") and experienced multiple barriers inhibiting their T2D management. These included complex lives ("I have a rheumatic heart disease […] then they told me that I have diabetes…I have two things") and the availability of support ("[I] talk to my mum…I talk to my aunty too…I don't talk to anyone else"). Successful management requires support from health professionals and family and includes strengthening social networks and educational opportunities. CONCLUSIONS: Our findings reinforce the need for alternative support systems tailored to the specific needs of young Aboriginal and Torres Strait Islander people with T2D. Enhanced models of care must be codesigned with young people and their communities and include a focus on shifting norms and expectations about youth T2D to reduce diabetes stigma and broaden social support and consider the delivery of health information in youth-friendly environments.

The Adaptation of a Youth Diabetes Prevention Program for Aboriginal Children in Central Australia: Community Perspectives.

This study reports on integrating community perspectives to adapt a family-focused, culturally appropriate behavioural intervention program to prevent diabetes among Aboriginal children (6-11 years) in Central Australia. A participatory action research approach was used to engage a range of service providers, cultural advisors, and family groups. Appropriateness, acceptability, content, and delivery of a prevention program within the Central Australian context were discussed through a series of workshops with twenty-five service providers and seven family groups separately. The data obtained were deductively coded for thematic analysis. Main findings included: (i) the strong need for a diabetes prevention program that is community owned, (ii) a flexible and culturally appropriate program delivered by upskilling community members as program facilitators, and (iii) consideration of social and environmental factors when implementing the program. It is recommended that a trial of the adapted prevention program for effectiveness and implementation is led by an Aboriginal community-controlled health service.