Caregiver perspectives, experiences and service satisfaction, and health service utilization among families of children with developmental disorders at a tertiary center in a low-resource setting

Background: We describe the health perspectives, experiences, and level of service satisfaction among caregivers of children with autism spectrum disorder (ASD) and those with global developmental delays (GDD) attending services at a tertiary paediatric center, and how these influence health services utilization (HSU). Methods: In this cross-sectional study, we interviewed caregivers using pre-validated questionnaires to establish their health perspectives, family distress level, healthcare experiences and service satisfaction level. HSU was determined by a review of their medical records in the preceding year. We used descriptive statistics and logistic regression analysis to correlate these variables comparing households with children with ASD versus GDD. Results: We enrolled 240 children, 116 had ASD and 124 with GDD, within the age range of 3-8 years, and more males (2:1). Overall, most caregivers believed they had a low understanding of these conditions and that existing treatments were not effective. Both groups reported moderate family distress, mean of 3.3 /10 (SD 1.2), and moderate satisfaction level (68.3%). The mean annual frequency of visits was 12.5, but higher in GDD (13.3 vs 11.5). Overall, households that believed that therapy was able to control the illness recorded higher HSU (p = 0.003). Among families with children with ASD, lower family distress (p = 0.003), and higher general satisfaction (p = 0.06) predicted higher HSU. Conclusion: Caregivers hold complex perceptions around these conditions that influence their service usage. There is a need to empower the caregivers, decentralize early intervention services, and adopt family-centered approaches in supporting families, to improve service compliance.