Parent-reported engagement in a home-based, parent-delivered early intervention for infants with unilateral cerebral palsy

Interventions based on family-centered care principles for infants with unilateral cerebral palsy (UCP) may promote high parental engagement and result in best child outcomes. Current tools do not measure engagement over time.Purpose Quantify parent self-reported engagement over time in a randomized comparison trial (Rehabilitation EArly for Congenital Hemiplegia, REACH) for infants with UCP and discover factors impacting engagement.Materials and Methods This secondary analysis from the REACH clinical trial included N = 90 infants with or at risk for UCP, randomized to infant-friendly constraint-induced movement therapy (Baby-CIMT) or bimanual therapy (Baby-BIM). Pediatric Rehabilitation Intervention Measure of Engagement-General (PRIME-G) was administered at the start, midpoint, and end of intervention.Results Parent-reported engagement was near the maximum possible PRIME-G score at intervention start, with no significant difference in score distribution over time. No between-group differences in parent engagement were found. PRIME-G items scored lower over time by some parents related to fitting intervention within family life. No infant-, parent-, or therapist-related variables significantly predicted changes in PRIME-G scores.Conclusions REACH interventions were designed to empower parents to provide intervention activities with their infant. Parent engagement was high for Baby-CIMT and Baby-BIM. Some parents may need support to integrate intervention within family life and sustain engagement over time.