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.

Acute post-streptococcal glomerulonephritis in Central Australia.

OBJECTIVE: To determine the incidence, clinical presentation and progress of acute post-streptococcal glomerulonephritis in Central Australia. DESIGN: Retrospective observational analysis. SETTING: Paediatric inpatient admission at Alice Springs Hospital. PARTICIPANTS: Patients admitted to Alice Springs Hospital under 14 years of age meeting diagnostic criteria for acute post-streptococcal glomerulonephritis between January 2010 and December 2014. MAIN OUTCOME MEASURES: Incidence of acute post-streptococcal glomerulonephritis in central Australia. Biochemical abnormalities associated with acute post-streptococcal glomerulonephritis. Co-occuring conditions. RESULTS: Sixty-nine out of the 174 cases reviewed were identified as having either acute post-streptococcal glomerulonephritis (63) or probable acute post-streptococcal glomerulonephritis (6). We calculate the incidence of APSGN admission to be higher than previously reported and the highest reported incidence globally in children. Clinical evidence of skin infection was frequently documented. Co-occurring infections were common, including scabies/head lice, urinary tract infection and pneumonia. Fifty-three patients showed biochemical evidence of acute kidney injury. CONCLUSIONS: Aboriginal children in Central Australia have the highest incidence of acute post-streptococcal glomerulonephritis reported worldwide. Urgent action is required to improve housing and reduce overcrowding in Central Australian towns and communities to reduce the burden of disease of skin infection and Group A Streptococcus related diseases. Without effective change in living conditions, it is unlikely that there will be a significant change in the morbidity related to these conditions.