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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

      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.

      Résumé

      Objectifs

      L’objectif de notre étude était d’acquérir une compréhension des expériences des jeunes aborigènes et insulaires du détroit de Torrès âgés de 10 à 25 ans et diabétiques de type 2 (DT2) qui vivent dans le nord et le centre de l’Australie.

      Méthodes

      Dans cette étude qualitative, l’épistémologie constructiviste sociale et la méthode phénoménologique nous ont permis d’explorer les expériences des participants concernant le DT2. Vingt-sept jeunes de 4 établissements en soins de santé primaires ont participé à des entretiens semi-structurés en profondeur.

      Résultats

      Trois construits importants étaient apparus. Les jeunes connaissaient un paradoxe normalisation–honte en réponse à leur diagnostic (qui s’explique en partie par l’affirmation que « tout le monde a le diabète » et par la crainte que les amis « puissent [me] juger »), avaient des niveaux de compréhension sous-optimaux du DT2 (« Je ne sais pas vraiment ce qu’est le diabète. J’ai simplement besoin que quelqu’un m’explique un peu plus. ») et se heurtaient à de nombreux obstacles qui inhibaient leur prise en charge du DT2. Parmi ces obstacles figurent la complexité de leur vie (« J’ai un rhumatisme cardiaque […] puis ils m’ont dit que j’ai le diabète… J’ai deux choses ») et la disponibilité du soutien (« [Je] parle à ma maman… Je parle à ma tantine aussi… Je ne parle à personne d’autre »). La réussite de la prise en charge exige le soutien des professionnels de la santé et de la famille et passe par le renforcement des réseaux sociaux et les possibilités d’éducation.

      Conclusions

      Nos résultats contribuent à accentuer le besoin d’avoir d’autres réseaux de soutien adaptés aux besoins particuliers des jeunes aborigènes et insulaires du détroit de Torrès qui ont le DT2. Des modèles de soins améliorés doivent être conçus en collaboration avec les jeunes et leurs communautés et principalement axés sur l’évolution des normes et des attentes au sujet du DT2 chez les jeunes afin de réduire la stigmatisation liée au diabète, étendre le soutien social et envisager la prestation d’information en matière de santé dans les environnements adaptés aux jeunes.

      Keywords

      Mots clés

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