Goals of Care Among Caregivers of Youths With Type 1 Diabetes

OBJECTIVE To characterize goals of care (GOCs) among caregivers of youths with type 1 diabetes (T1D) and evaluate psychosocial factors associated with caregiver priorities using a structured, narrative-based GOC framework adapted from the 3-Act Model. RESEARCH DESIGN AND METHODS We conducted semistructured interviews with 30 caregivers of diverse youths with T1D. Interviews used a modified 3-Act Model to elicit GOCs. Caregivers and youths (aged ≥8 years) completed validated measures of diabetes distress, quality of life, psychological symptoms, caregiver burden, resilience, and family conflict. Qualitative data were analyzed using reflexive thematic analysis supported by a hybrid human−artificial intelligence coding approach. Quantitative data were summarized descriptively and compared across respondent type and age-group. RESULTS Three major themes emerged: health management, emotional and social well-being, and personal development. Caregivers consistently prioritized emotional health, normalization, and fostering of independence, often emphasizing these above meeting glycemic targets. Caregivers of youths aged 8−12 years reported significantly higher diabetes distress relative to youth self-reports. Caregivers perceived youth diabetes-related symptoms as less burdensome than described in youth self-reports (P = 0.01). Results collectively highlighted middle childhood as a period of heightened psychosocial strain for caregivers and youths. CONCLUSIONS Caregivers of youths with T1D identify goals that extend beyond glycemic metrics to emphasize emotional well-being, autonomy, and quality of life. Integrating structured GOC discussions into routine diabetes care may improve alignment between families and clinical teams, supporting person-centered, developmentally informed diabetes management.