P-395: Highlighting family perspectives from underrepresented groups in type 1 diabetes research
N Kahhan, S Maccoll, J El Buri, S PattonAbstract
Introduction
Early type 1 diabetes mellitus (T1D) management relies heavily on parents/caregivers, yet perspectives of families often underrepresented in pediatric T1D research remain limited, constraining equitable and scalable intervention delivery.
Objectives
To examine decision-making, barriers, and facilitators to research participation among caregivers who self-identified as underrepresented, and to gather feedback on recruitment materials and program design to inform scalable approaches.
Methods
Parents/caregivers of children aged 2-10 years with T1D (n=40) were recruited from an outpatient endocrinology clinic and a national registry. Participants self-identified as underrepresented based on personal, structural, or social factors (e.g., caregiver identity, insurance status, race/ethnicity). Semi-structured interviews were analyzed using team-based thematic analysis; 25% were double-coded for reliability (κ= 0.72-0.94).
Results
Participants (mean age = 40.8, SD=5.1) self-identified as 10% male, 5% non-biological parent, 53% Asian, Black, or mixed race, 32.5% Hispanic, and 56% with public insurance. Decisions to engage in research were driven by clarity of purpose, perceived relevance, and feasibility. Key concerns included unclear study goals, apprehension about randomization, and restrictive eligibility criteria. Parents emphasized the importance of inclusive representation, transparent communication of benefits, and low-burden designs, including remote participation, flexible scheduling, mobile-friendly platforms, childcare support, and multilingual staff (see Table 1).
Conclusions
Barriers to pediatric T1D research participation extend beyond traditional demographic definitions of underrepresentation. Scalable recruitment requires transparent communication, inclusive design, and explicit attention to family burden to support equitable engagement.