P3B370: Creating a Communities of Practice Program to Reduce Caregiver Burden and Improve Service Access for Children with Developmental Disabilities in an Underserved Region

Background: Families of children with developmental disabilities (DD) living in an underserved, resource-poor geographic region face unclear referral pathways, financial, language, and cultural barriers that prevent them from accessing critical early intervention (EI) and related professional services. The complexity of managing their child’s care leads to higher rates of caregiver burden, parenting stress, social isolation, and lower quality of life when their child’s developmental burden is high. Existing peer-support programs provide emotional and practical assistance to participants, enhancing their well-being and coping skills. Expanding from this peer-support approach, our program adapts an educational framework known as Communities of Practice (CoP) to create caregiver communities that interact regularly to focus on expertise development, knowledge sharing, and advancing caregivers’ ability to manage their child’s care.

Project Description: We aim to assess the impact of a novel group intervention, CoPs, on service utilization and caregiver burden inventory (CBI) scores amongst caregivers of children ( ≥ 2 years) with DD or suspected DD from general pediatric clinics in Inland Southern California. In Part 1, caregivers complete a survey containing: (a) community needs assessment to establish the service needs of children (Figure 1) and (b) caregiver burden inventory, adopted from Novak, 1989. The CBI assesses five facets of caregiver burden: time dependence and developmental, physical, social, and emotional burden. Part 1 data informs the design and instructional materials of Part 2.
In Part 2, participants are categorized based on their child's diagnosis time to estimate their expertise in service access (novice: up to 2 years, intermediate: 2-6 years, expert: 6+ years). Each CoP will include caregivers from all categories, who will meet virtually for 6 sessions across 3 months. These sessions, guided by a trained facilitator, are semi-structured with a curriculum consisting of critical topics of discussion based on surveyed needs and a space for group sharing (Figure 2). Community sessions are recorded and transcribed for thematic analysis. To evaluate program efficacy, participants complete the community needs assessment and CBI after the intervention and in a 6 month follow-up.

Discussion: This program pilots an intervention that is scalable and promotes parental capacity to advocate for themselves and their child. Strengthening caregivers' social networks may improve service engagement and promote healthier developmental environments for children. It is possible that a community-structured support system that is effectively designed to group families based on shared diagnoses, culture, and motivations may reduce caregiver burden through the development of new skills.

Conclusion: CoPs offer a grassroots approach to addressing inequities in service access and reducing caregiver burden in parents of children newly diagnosed with DD. Our program equips caregivers with skills needed to access EI and related services, thereby promoting opportunities for children in underserved regions to reach their fullest developmental potential.