TY - JOUR
T1 - “I Don't Really Know What Diabetes Is”
T2 - 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
AU - Weaver, Emma
AU - Freeman, Natasha
AU - Mack, Shiree
AU - Titmuss, Angela
AU - Dowler, James
AU - Corpus, Sumaria
AU - Hyatt, Teresa
AU - Ellis, Elna
AU - Sanderson, Cheryl
AU - Connors, Christine
AU - Moore, Elizabeth
AU - Silver, Bronwyn
AU - Azzopardi, Peter
AU - Maple-Brown, Louise
AU - Kirkham, Renae
AU - Diabetes Across the Lifecourse: Northern Australia Partnership
N1 - Funding Information:
The authors acknowledge the Diabetes Across the Lifecourse investigators, partners, staff, clinical reference group, Aboriginal and Torres Strait Islander Advisory group, and the health professionals from the Central Australian Aboriginal Congress, Danila Dilba Health Service and the NT Department of Health remote primary health-care services who have contributed to this research. We thank Ricky Mentha, an experienced Aboriginal Engagement Officer, for providing valuable feedback on our interview schedule, and Jade Morris, a study participant, who provided valuable insights when interpreting the data. Finally, we thank the participants for their time and valuable contributions. This work was supported by a fellowship awarded to R.K. through the NHMRC-funded Improving Health Outcomes in the Tropical North: A Multidisciplinary Collaboration (grant 1131932), the Central Australian Academic Health Science Centre and the Australian Government Department of Health. L.M.-B. was supported by an NHMRC Investigator Grant (1194698). The information and opinions contained in this paper are solely the responsibility of the authors and do not necessarily reflect the views of the NHMRC. Conflicts of interest: None. All co-authors have made substantial contributions to the conception, acquisition or analysis of data, and to the drafting or revising of the article and providing final approval for publication.
Funding Information:
The authors acknowledge the Diabetes Across the Lifecourse investigators, partners, staff, clinical reference group, Aboriginal and Torres Strait Islander Advisory group, and the health professionals from the Central Australian Aboriginal Congress, Danila Dilba Health Service and the NT Department of Health remote primary health-care services who have contributed to this research. We thank Ricky Mentha, an experienced Aboriginal Engagement Officer, for providing valuable feedback on our interview schedule, and Jade Morris, a study participant, who provided valuable insights when interpreting the data. Finally, we thank the participants for their time and valuable contributions. This work was supported by a fellowship awarded to R.K. through the NHMRC funded Improving Health Outcomes in the Tropical North: A Multidisciplinary Collaboration (grant 1131932 ), the Central Australian Academic Health Science Centre and the Australian Government Department of Health . L.M.B. was supported by an NHMRC Investigator Grant (1194698). The information and opinions contained in this paper are solely the responsibility of the authors and do not necessarily reflect the views of the NHMRC.
Publisher Copyright:
© 2022 Canadian Diabetes Association
PY - 2022/10
Y1 - 2022/10
N2 - 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 normalization–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. 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 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.
AB - 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 normalization–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. 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 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.
KW - Aboriginal and Torres Strait Islander young people
KW - age-appropriate support
KW - experiences and perspectives
KW - shame and stigma
KW - type 2 diabetes
UR - http://www.scopus.com/inward/record.url?scp=85135796387&partnerID=8YFLogxK
U2 - 10.1016/j.jcjd.2022.04.010
DO - 10.1016/j.jcjd.2022.04.010
M3 - Article
AN - SCOPUS:85135796387
VL - 46
SP - 722
EP - 729
JO - Canadian Journal of Diabetes
JF - Canadian Journal of Diabetes
SN - 1499-2671
IS - 7
ER -