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

Purpose: 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).Materials and methodsThirteen 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.ResultsThe 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.ConclusionsOur 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. Guidance on how to integrate playful training in everyday life at home is crucial in reducing family stress and empower parents.In collaborative goalsetting, therapists should explore parents' hopes and expectations and provide guidance on possible realistic short-term goals.Therapists should be aware that participating in early intervention can be emotionally challenging and acknowledge grief and sorrow as natural reactions.