Abstract

OBJECTIVE | The recent-onset period of type 1 diabetes (T1D) in early school-age children should include comprehensive, parent-focused T1D education as well as family-centered resources and support to help with adjustment. Here, we present parent/caregiver perspectives on specific areas of concern during the recent-onset period of T1D and their preferred timing for different topics related to T1D education.

METHODS | Parents/caregivers of 5- to 9-year-old children with T1D completed a card-sorting task and qualitative interview to describe ongoing areas of concern and preferred educational topics during the first year after T1D diagnosis.

RESULTS | Thirteen parents/caregivers (aged 35.1 ± 6.9 years) of a child with T1D (aged 8.9 ± 0.8 years, 11.3 ± 7.0 months post-diagnosis) completed the card-sorting task, and 11 completed the qualitative interview. Parents/caregivers endorsed four preferred stages of education: basic education and T1D survival skills during month 1 post-diagnosis, application and practice of T1D skills from months 1–3, access to community supports to cope with anxiety and distress from months 3–6, and support to build autonomy and manage burnout beyond month 6 post-diagnosis. Parents/caregivers endorsed four main themes for ongoing concerns: anxiety, autonomy, distress, and support.

CONCLUSION | Parents endorsed four time points for education and psychosocial services within the first year of a T1D diagnosis. Parents/caregivers may benefit the most from psychosocial interventions 3–6 months post-diagnosis, once they have had sufficient time to develop basic T1D management skills. These findings support the need for regular parent psychosocial screening and access to scalable psychosocial interventions in the first year post-diagnosis of T1D.