Self-Management Support Needs of Youth with Type 1 Diabetes and Autism Spectrum Disorder and Families

This dissertation aimed to explore the experiences and self-management support needs of youth living with ASD and T1DM from the perspective of their caregivers. Two papers from this dissertation address this purpose. The first paper, Autism Spectrum Disorder Factors' Impact on Empowerment of Type 1 Diabetes Daily Care in Youth with Both Conditions: A mixed method study, sought to (1) explore how autism-related factors impact T1DM management and examine the self-management support needs among family-empowered youth with T1DM and ASD, and (2) examine whether youth with higher levels of autism severity will demonstrate greater challenges in meeting their needs for T1DM care compared to youth with lower levels of autism severity and require more support from their families. The mixed method was picked for the quantitative portion and a descriptive exploratory approach for the qualitative portion. The study foundation is the qualitative approach, which paralleled the quantitative approach (QUALI + Quant). Qualitative and quantitative data were collected at the same time, merged after analysis, and results were intercepted. This means they were compared to find associations, convergent, and divergent and complementary information. The aim of the second paper, Spectrum (T1): Wellbeing, family experiences, healthcare providers, and network support used to mitigate the burden of living with both Type 1 Diabetes (T1DM) and Autism Spectrum Disorder (ASD), was to explore the experiences and self-management needs of youth living with ASD and T1DM from the perspective of their 24 family caregivers. This study has led to a greater understanding of the unique aspects of the self-management support needs of T1DM in youth with ASD; how these needs are affected by the levels of autism severity and factors such as individual, family, network, healthcare providers, and health policies. The first paper determined the impact of ASD on T1DM management and how families empower youth with autism in performing T1DM self-care activities. Also, the results showed that youth with level 3 of autism severity, which individuals have more restrictive behaviors that affect their independence in everyday activities, and they may be highly sensitive to sensory input, have more challenges in handling T1DM care. The second paper reported the self-management needs of T1DM related to parent's experiences with a child with T1DM and ASD; their well-being and hope for the future; longitudinal healthcare team care, insurance coverage, technology aides, and network support to the family and the youth with T1DM and ASD. This exploration helped to identify where more investigation is needed to explore diabetes self-management needs and challenges of parents and youth with T1DM and autism in sharing diabetes care responsibilities; educating the healthcare providers; and designing interventions to help parents share diabetes care according to self-efficacy, autonomy, and level of autism severity of the youth. Using objective measures, this dissertation has added to the breadth of knowledge about self-management support needs related to different ASD severity levels. This study provided a better understanding of the self-management support needs and optimal ways to deliver education, behavioral interventions, and technology-based interventions to improve T1DM self-care, T1DM control, and quality of life.