Parents' experiences of participating in the Small Step early intervention program for infants at high risk of cerebral palsy: essential components and potential dilemmas.

Abstract

To explore parents' perceptions of essential components and potential dilemmas within the family-centred and goal-directed Small Step program, an interprofessional early intervention for families of infants at high risk of cerebral palsy (CP). Thirteen parents (eight mothers and five fathers) of ten children participated in this qualitative study through individual in-depth interviews. Transcripts were analysed using reflexive thematic analysis. The parents emphasized the advantage of having the intervention provided at home with coaching and flexible support from the interprofessional team of therapists. This assured the families and enhanced their capacity to provide the child with playful and enriched learning opportunities integrated in everyday life. However, identification of achievable goals and intervention delivery could be emotionally taxing for parents, especially in the early stages and if treatment effects were below hopes and expectations. Our findings provide insights into what kind of support parents prefer and dilemmas professionals should be aware of when providing early intervention to families of infants at high risk of CP. Parents appreciated being involved as equal partners and receiving home-based guidance. Acknowledging grief and sorrow as natural reactions and fostering open discussions about expectations seem essential in addressing families' individual needs.