Family-centred Intervention in Nepal: Epidemiology and participation for children with Developmental Delays and Disabilities (FINE-DDD)

Purpose and aims: To determine the prevalence of developmental delays and disabilities (DDD) for children in Nepal who had complications around the time of birth, and to develop and evaluate an intervention for children with DDD in regard to feasibility and effect on participation for children and quality of life for caregivers.

Study design & methods:  Part 1: A prospective cohort study of two cohorts of children who received (n 381) and did not receive (n 381) newborn interventions due to complications at birth at a tertiary hospital in Nepal, Children in both cohorts will be followed up at 3-5-years of age to screen for DDD, children identified with DDD will be assessed by a specialized team for diagnosis.Part 2: A cluster randomized trial with one intervention (n 51) and one control arm (n 51).

Including the following dimensions:Monthly peer-support group workshopsIndividual goal-directed sessionsFamily support daysCommunity workshopsSignificance: This study will provide information on long-term impact of development for children that had complications around the time of birth and received basic interventions for newborn survival.

Furthermore this study will evaluate an intervention model for children with DDD to increase child participation and caregiver quality of life.

Results will inform the need for habilitation services and contribute to intervention program development, and may be transferable across Nepal and to other low-income settings.