ABSTRACT
Autistic adults experience stark health disparities and difficulties accessing health care. Their realities of managing complex health conditions are unknown. Our research explored the experience of Autistic adults self-managing diabetes. Interviews with Autistic adults with diabetes and their support people were thematically analysed to identify three key themes. The Autistic experience influenced diabetes self-management, including autism-unique challenges and strengths. Participants prioritised avoiding Autistic burnout over diabetes self-management; mitigating the psychosocial pressures of neurotypical systems took precedence. Health professionals often separated autism and diabetes subsequently overlooking key factors impacting diabetes self-management. To better meet the needs of Autistic adults, diabetes care and health management more broadly should be considered within the context of autism, including supports for self-management during Autistic burnout.
ABSTRACT
BACKGROUND: The role of personalized treatment approaches, including those based on genetic testing, are increasingly enabling informed decision-making to improve health outcomes. Research involving Indigenous Australians has been lagging behind, although this population experiences a higher prevalence of chronic disease and mental health disorders. METHODS: Using community-based participatory research principles, this study purposefully interviewed participants with a diagnosed common mental disorder and a comorbid chronic disease condition. This was an inductive thematic analysis on semi-structured interviews with consenting participants (n = 48). Common themes and analytical domains were identified that provided a semantic understanding shared by participants. RESULTS: Five emerging themes were identified, primarily focusing on: (1) The perceptions and understanding of genetics research; (2) culturally appropriate conduct of genetics research; (3) the role of indigenous-led genetics research; (4) future prospects of genetics research; and (5) the importance of genetics research for patients with mental and physical health comorbidities. CONCLUSION: Indigenous Australians are under-represented in pharmacogenomics research despite well-documented epidemiological research demonstrating that Indigenous people globally experience greater risk of developing certain chronic diseases and more severe disease progression. Positive outcomes from this study highlight the importance of not only involving Indigenous participants, but providing leadership and governance opportunities for future genetics research.