JMIR Publications

ABSTRACT

Background:

Type 1 diabetes (T1D) self-management requires numerous decisions and actions by the person with T1D and/or their caregiver(s) and poses many daily challenges. For those with T1D and a developmental disorder such as autism spectrum disorder (ASD), more complex challenges arise, though these remain largely unstudied.

Objective:

The purpose of this study was to better understand barriers and facilitators to raising a child with T1D and ASD. Secondary data analysis of online content (Phase 1) and telephone interviews (Phase 2) were conducted to further expand existing knowledge as to the challenges and successes these families face.

Methods:

Phase 1 involved qualitative analysis of publicly available online forum and blog posts by caregivers of children with both T1D and ASD. Themes from Phase 1 were used to create an interview guide for further in-depth exploration via interviews. In Phase 2, caregivers of children with both T1D and ASD were recruited from Penn State Health endocrinology clinics and online from social media postings to T1D focused groups and sites. Interested respondents were directed to a secure online eligibility assessment via REDCap. Information related to T1D and ASD diagnosis, contact information and demographics were collected. Based on survey responses, participants were selected for a follow-up telephone interview, and were asked to complete the ABAS-3 Parent Form to assess autism severity, and upload a copy of their child’s most recent hemoglobin A1c result. Interviews were transcribed, imported into NVivo qualitative data management software, and analyzed to determine common themes related to barriers and facilitators in raising a child with both ASD and T1D.

Results:

For Phase 1, 398 forum and blog posts between 2009 and 2016 were analyzed. Common themes were related to lack of understanding by the separate ASD and T1D caregiver communities, advice on coping techniques, rules and routines, and descriptions of the healthcare experience. For Phase 2, twelve eligible respondents were interviewed. For interviewees, the average age of the child at diagnosis with T1D and ASD was 7.92 and 5.55 years, respectively. Average self-reported and documented hemoglobin A1c levels were 8.6% (70 mmol/mol) and 8.7% (72 mmol/mol), respectively. Common themes from the interviews were related to increased emotional burden, frustration surrounding the amount of information they are expected to learn, and challenges in the school setting.

Conclusions:

Caregivers of children with both T1D and ASD face unique challenges, distinct from those faced by caregivers of individuals who have either disorder alone. Understanding these challenges may help healthcare providers in caring for this unique population. Referral to the diabetes online community may be a potential resource to supplement the care received by the medical community.