“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

Weaver, E.; Freeman, Natasha; Mack, Shiree; Titmuss, Angela; Dowler, James; Corpus, Sumaria; Hyatt, T.; Ellis, Elna; Sanderson, C.; Connors, Christine; Moore, Elizabeth; Silver, Bronwyn; Azzopardi, Peter; Maple-Brown, Louise; Kirkham, Renae

doi:10.1016/j.jcjd.2022.04.010

Cited by 9 publications

(18 citation statements)

References 34 publications

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“…Our findings are consistent with a study of Australian youth with T2DM, who were also from a minority, lower-income population. 36 This study found evidence of diabetes-related shame, with participants reporting hesitancy about disclosing their diagnosis to peers. 36 Due to the tight link between T2DM and obesity, youth with T2DM may also already face weight-related stigma, which increases the risk of disordered eating behaviors, anxiety and depression, and health-related quality of life.…”

Section: Discussionmentioning

confidence: 69%

“…36 This study found evidence of diabetes-related shame, with participants reporting hesitancy about disclosing their diagnosis to peers. 36 Due to the tight link between T2DM and obesity, youth with T2DM may also already face weight-related stigma, which increases the risk of disordered eating behaviors, anxiety and depression, and health-related quality of life. 37 Thus, the risk of worsening diabetes-related stigma through CGM use should be carefully weighed using a shared decision-making approach with youth and their parents.…”

Section: Discussionmentioning

confidence: 69%

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Barriers and Facilitators to Uptake of Continuous Glucose Monitoring for Management of Type 2 Diabetes Mellitus in Youth

Peyyety,

Zupa,

Hewitt

et al. 2023

The Science of Diabetes Self-Management and Care

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Purpose: The purpose of this study was to identify factors impacting the acceptability of continuous glucose monitoring (CGM) in adolescents and young adults (AYAs) with type 2 diabetes mellitus (T2DM). Methods: In this single-center study, semistructured interviews were conducted with AYAs with T2DM and their parents to determine attitudes about CGM, including barriers and facilitators. Interviews were audio-recorded, transcribed, and evaluated using thematic analysis. Results: Twenty AYAs and 10 parents participated (n = 30 total). AYAs were mean age 16.5 years (SD 2.2, range = 13.7-20.1) and had median diabetes duration of 1.3 years. Most were female (65%) and from minoritized background (40% non-Hispanic Black, 10% Hispanic, 5% Asian). Seven (35%) used CGM. The primary facilitator elicited was convenience over glucose meter use. Important barriers included the impact of physically wearing the device and drawing unwanted attention, desire for AYA privacy, and inadequate education about the device. Conclusions: In this diverse sample of AYAs with T2DM and their parents, CGM was generally regarded as convenient, although concerns about worsening stigma and conflict with parents were prevalent. These findings can guide the development of patient-centered approaches to CGM for AYAs with T2DM, a critical step toward reducing inequities in diabetes technology uptake.

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Section: Discussionmentioning

confidence: 69%

Section: Discussionmentioning

confidence: 69%

Barriers and Facilitators to Uptake of Continuous Glucose Monitoring for Management of Type 2 Diabetes Mellitus in Youth

Peyyety,

Zupa,

Hewitt

et al. 2023

The Science of Diabetes Self-Management and Care

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“…Young people with type 2 diabetes and their families will be involved in shaping codesign methods and approaches used in this study, as well as determining the outputs and intended outcomes of the codesign process. In collaboration with young Aboriginal and Torres Strait Islander people with type 2 diabetes in each region, we will consider developing the following approaches and resources identified by youth during the formative phase,19 in addition to other approaches or resources identified by participants:…”

Section: Methods and Analysismentioning

confidence: 99%

“…Recent work exploring the lived experience of young Aboriginal and Torres Strait Islander people with type 2 diabetes across Northern Australia illustrates the many difficulties youth and their families experience in managing young peoples’ health 18 19. Our formative study illustrated how diabetes is normalised yet also stigmatised among Aboriginal and Torres Strait Islander youth; and young people diagnosed with the condition may experience social ostracisation and judgement, despite its high prevalence in many Aboriginal and Torres Strait Islander communities 19. We have also shown that the presence of comorbidities and contexts of poverty and social stress impede the capacity of youth and their families to monitor blood glucose levels, regularly take diabetes medications and avoid foods with high sugar content 19.…”

Section: Introductionmentioning

confidence: 99%

“…The current study has emerged in response to a lack of effective clinical guidelines, resources and approaches that address the specific health and social care needs and contexts of Northern Australian Aboriginal and Torres Strait Islander youth living with type 2 diabetes. Importantly, our formative work demonstrates that Aboriginal and Torres Strait Islander young people have ideas about how care could be improved, including establishing youth support networks, conducting education and support activities on country, and by making healthcare services youth-friendly spaces 19…”

Section: Introductionmentioning

confidence: 99%

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

Kirkham,

Puszka,

Titmuss

et al. 2024

BMJ Open

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IntroductionPremature 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 analysisOur 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 disseminationThe 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.

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Aboriginal young people's experiences of type 2 diabetes diagnosis, management and support: A qualitative study in the Kimberley region of Western Australia

Spry,

Seear,

Harkin

et al. 2024

Health Prom J of Aust

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Issues AddressedIn Australia, Aboriginal and Torres Strait Islander young people in remote settings are most‐affected by young onset type 2 diabetes (T2D). It is necessary to understand young people's experiences, including factors impacting on self‐management, to improve models of care.MethodsA phenomenological methodology underpinned this qualitative study in Western Australia's Kimberley region. Two Aboriginal Community Controlled Health Services supported recruitment of seven Aboriginal young people aged 12–24 with T2D, who participated in interviews. A carer and health professional of one young person in each site were also interviewed and relevant medical record data reviewed to assist with triangulation of data. De‐identified transcripts were inductively coded and a coding structure developed with oversight by a Kimberley Aboriginal researcher.ResultsYoung people reported varied experiences and emotions relating to a T2D diagnosis. Most recounted this was upsetting and some reported current negative impact on emotional wellbeing. Challenges with understanding and managing diabetes were highlighted, particularly regarding healthy eating, physical activity and medication. Family are a prominent source of self‐management support, with the intergenerational impact of diabetes being evident for each participant. Positive relationships with health professionals, entailing continuity of care, were valued.ConclusionsThere are significant emotional and medical challenges for young people with T2D and their families. Recommendations from this work will contribute to the development of local resources and initiatives to improve diabetes‐related support.So What?Alongside broader efforts to support good health at the societal level, enhanced health education and family‐oriented support structures including Aboriginal clinical staff for young people with T2D are needed.

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“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

Cited by 9 publications

References 34 publications

Barriers and Facilitators to Uptake of Continuous Glucose Monitoring for Management of Type 2 Diabetes Mellitus in Youth

Barriers and Facilitators to Uptake of Continuous Glucose Monitoring for Management of Type 2 Diabetes Mellitus in Youth

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

Aboriginal young people's experiences of type 2 diabetes diagnosis, management and support: A qualitative study in the Kimberley region of Western Australia

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