"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

Emma Weaver; Natasha Freeman; Shiree Mack; Angela Titmuss; James Dowler; Sumaria Corpus; Teresa Hyatt; Elna Ellis; Cheryl Sanderson; Christine Connors; Elizabeth Moore; Bronwyn Silver; Peter Azzopardi; Louise Maple-Brown; Renae Kirkham; Diabetes Across the Lifecourse: Northern Australia Partnership

doi:10.1016/j.jcjd.2022.04.010

"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

Can J Diabetes. 2022 May 5:S1499-2671(22)00095-8. doi: 10.1016/j.jcjd.2022.04.010. Online ahead of print.

Authors

Emma Weaver¹, Natasha Freeman², Shiree Mack², Angela Titmuss³, James Dowler⁴, Sumaria Corpus⁵, Teresa Hyatt⁶, Elna Ellis⁷, Cheryl Sanderson⁸, Christine Connors⁶, Elizabeth Moore⁹, Bronwyn Silver¹⁰, Peter Azzopardi¹¹, Louise Maple-Brown¹², Renae Kirkham²; Diabetes Across the Lifecourse: Northern Australia Partnership

Affiliations

¹ Menzies School of Health Research, Charles Darwin University, Darwin, Northern Territory, Australia. Electronic address: emma.weaver@menzies.edu.au.
² Menzies School of Health Research, Charles Darwin University, Darwin, Northern Territory, Australia.
³ Menzies School of Health Research, Charles Darwin University, Darwin, Northern Territory, Australia; Department of Paediatrics, Division of Women, Children and Youth, Royal Darwin Hospital, Darwin, Northern Territory, Australia.
⁴ Department of Paediatrics, Alice Springs Hospital, Northern Territory, Australia.
⁵ Danila Dilba Health Services, Darwin, Northern Territory, Australia; Endocrine Department, Royal Darwin Hospital, Darwin, Northern Territory, Australia.
⁶ Population and Primary Health Care, Top End Health Service, Northern Territory Department of Health, Darwin, Northern Territory, Australia.
⁷ Department of Medicine, Alice Springs Hospital, Alice Springs, Northern Territory, Australia.
⁸ Danila Dilba Health Services, Darwin, Northern Territory, Australia; Aboriginal Medical Service Alliance Northern Territory, Alice Springs, Northern Territory, Australia.
⁹ Aboriginal Medical Service Alliance Northern Territory, Alice Springs, Northern Territory, Australia.
¹⁰ Central Australian Aboriginal Congress, Alice Springs, Northern Territory, Australia.
¹¹ Burnet Institute, Melbourne, Victoria, Australia; Wardliparingga Aboriginal Research Unit, South Australian Health and Medical Research Institute, Adelaide, Australia.
¹² Menzies School of Health Research, Charles Darwin University, Darwin, Northern Territory, Australia; Endocrine Department, Royal Darwin Hospital, Darwin, Northern Territory, Australia.

PMID: 35963668
DOI: 10.1016/j.jcjd.2022.04.010

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 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.

Keywords: Aboriginal and Torres Strait Islander young people; age-appropriate support; diabète de type 2; experiences and perspectives; expériences et points de vue; honte et stigmatisation; jeunes aborigènes et insulaires du détroit de Torrès; shame and stigma; soutien adapté à leur âge; type 2 diabetes.