O2100: NDD Circle: Nurturing Childhood Development by Addressing High Caregiving Demands and Low Service Utilization in Families of Children with Developmental Disabilities

Background: Parents of children with developmental disabilities experience significant caregiver burden, exacerbated in medically underserved regions where fragmented referral systems and financial, linguistic, and cultural barriers limit access to essential services, including Early Intervention. Existing peer support programs lack structured curricula to provide families with practical tools necessary for service navigation and caregiving. This study explores: current service utilization, services caregivers are interested in receiving, and nature of caregiver burden. These findings informed the design of a semi-structured intervention utilizing a communities of practice framework to foster collective problem-solving, resource-sharing, and skill development.

Methods: In Part 1, caregivers completed a survey containing a community needs assessment to establish service needs of children and a validated caregiver burden inventory (CBI), assessing 5 facets of caregiver burden: time dependence and developmental, physical, social, and emotional burden. Regression analyses using R measured associations between caregiver burden, service utilization, and service needs. Participants scoring ≥36 on CBI were recruited for Part 2, where caregivers at different stages of their caregiving journey met virtually for 6 sessions. Sessions included a curriculum based on surveyed needs and designated time for group sharing. Recordings are being transcribed for thematic analysis.

Results: Of 19 caregivers surveyed, the average age was 38. 89% were female and 58% were employed full-time while caring for an average of three other household members.

Speech and language services had highest utilization rates (68%), while transportation services had the lowest (5%) (Figure 1). Among 13 eligible caregivers, 9 participated in the intervention. The average CBI score was 51.2, with highest burden in time dependence and lowest in the emotional facet (Figure 2).

Regression analyses demonstrated statistically significant relationships between time demand and both the number of services currently used (r² = .21, SE = 3.8, df = 17, p < .05) and the number of services caregivers wished to receive (r² = .20, SE = 3.9, df = 17, p < .05).

Conclusion: Barriers to essential services may contribute to high caregiver burden. Time dependence showed the highest level of burden, reflecting challenges in balancing caregiving with daily life. The lowest burden in the emotional facet suggests that parent-child relationships remain largely positive despite caregiving challenges. Regression analysis indicated that caregivers with higher service use reported higher time demand, likely due to time required to engage with these services. Caregivers who wished to receive more services also reported higher time dependence, which supports the intervention’s central theory of action that connecting individuals with services may help reduce self-reported perception of caregiver burden. Recognizing early childhood as a critical period, this program pilots a scalable intervention that may reduce caregiver burden by promoting advocacy skills while offering children in underserved regions the opportunity to reach their fullest developmental potential.