Managing Type 1 Diabetes in Neurodiverse Children and Young People: A Qualitative Exploration of Complexity and Care...

Neurodiversity is an umbrella term encompassing multiple diagnoses including attention-deficit/hyperactivity disorder (ADHD) and autistic spectrum conditions. Current research is limited but highlights the complexities faced by caregivers who often face unique challenges in managing Type 1 diabetes (T1D). Little is known within the literature of the experiences of children and young people (CYP) and their caregivers where both diagnoses co-exist and how these translate to their day-to-day T1D management. This study aims to understand the perceived burdens of neurodiversity for CYP and their caregivers in managing their T1D.

A qualitative methodology of semi-structured in-depth interviewing was used to explore the barriers, challenges, perceptions and impact on quality-of-life managing diabetes with neurodiversity. A thematic analysis was used to analyse the data.

Fifteen CYP (age range 12-18 years) and 13 parents caregivers were interviewed. All CYP had a diagnosis of autism, ADHD or both. Common themes identified were related to caregivers needing to adapt routines to meet individual needs. Family support was central to diabetes management. Sleep disturbance related to fear of hypoglycaemia was common, but continuous glucose monitoring improved sleep quality and reduced anxiety. Diabetes technologies, were widely perceived to reduce burden, enhance confidence and support self-management, despite occasional sensory challenges. Caregivers expressed concerns about limited tailored resources. CYP were worried about transition to adult services. Both CYP and caregiver experiences at diagnosis were generally negative, particular issues being change in routine, fingerpricks and hospital settings. CYP did not view neurodiversity as a barrier to self-managing their own diabetes.

Caregivers demonstrate resilience in managing and navigating challenges and CYP did not see their neurodiversity as a barrier to managing their T1D. Diabetes technologies were viewed as improving quality of life. Day-to-day coping strategies varied between CYP and caregivers. Effective T1D management in CYP with neurodiversity necessitates that healthcare providers are trained to understand and address the specific needs of neurodiversity. This includes adapting communication strategies and developing individualised care plans. Future research is needed to develop tailored interventions and support systems specifically for CYP with T1D and neurodiversity.