“A Different Ride”: A Qualitative Interview Study of Parents’ Experience with Early Diagnosis and Goals, Activity, Motor Enrichment (GAME) Intervention for Infants with Cerebral Palsy

Abstract

Cerebral palsy is the most common physical disability of childhood, and early diagnosis followed by best practice early intervention is important for optimizing child and family outcomes. We investigated parents’ views of an early diagnosis of cerebral palsy (CP), followed by Goals, Activity, Motor Enrichment (GAME) intervention. Semi-structured interviews were conducted within a pilot randomised clinical trial. Transcriptions were analyzed using grounded theory. Participants were nine mothers whose infants had received GAME intervention because they were identified as being at high risk for cerebral palsy early in infancy. The parenting experience was described as a “different ride”. The diagnosis was devastating with many time-consuming challenges, but acceptance ensued. Parents wanted an early diagnosis, prognosis, and early intervention, despite the anxiety and workload, because it meant they could help. Parents perceived that GAME was beneficial because they were taught how to help; it was goal-based and home-based. They believed the collaboration and communication skills of the therapist shaped success. Future research should focus on a broader range of participants to understand parent’s experiences with key aspects of early intervention more fully.