Experiences and Therapy Needs of Parents With an Infant at High Risk for Development of Unilateral Spastic Cerebral Palsy: A Qualitative Interview Study

Abstract

Aim: To understand experiences and therapy needs of parents with an infant with unilateral perinatal brain injury and at high risk for unilateral spastic cerebral palsy in the first year. Patients and Methods: Sixteen parents (from 8 children with unilateral spastic cerebral palsy, 3 without) diagnosed with unilateral perinatal brain injury participated in semistructured interviews. Data were analyzed using thematic analysis. Results: The overarching theme, “an unexpected journey,” included 4 subthemes: (1) “A roller coaster start”—stressful initial experiences on a neonatal intensive care unit; (2) “Wishing for a crystal ball”—need for information on (future) development; (3) “Reaching for the stars”—value of therapist guidance in supporting infant development; (4) “Growing seeds of confidence”—increased parental confidence in their child's development and their role. Conclusion: Parents have information needs about their child's (future) neurodevelopment. Physical or occupational therapists provide information, monitor motor progress, and guide parents in supporting development and can offer needed reassurance.