“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

Abstract

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 normalizationeshame 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. Barriers 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 co-designed 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.