Parental adjustment to having a child with cerebral palsy and participation in home therapy programs

Based on a qualitative research project guided by grounded theory methodology, this article describes parents' participation in home therapy programs recommended by physical and occupational therapists. The study involved in-depth interviews with 8 parents and 4 therapists of children with cerebral palsy. The parents reported that in the initial stages of adjustment to the diagnosis, they were typically overwhelmed by their situation and unable to participate in providing activities at home for their child. Furthermore, they concealed their lack of participation from the therapists, with whom they have not yet developed a trusting relationship. Although this study was conducted in New Zealand with a small number of parents, the findings raise questions about parent participation in the early days of therapy. It is suggested that service delivery needs to be organised in a way that will allow therapists to provide higher levels of input in the early stages while parents come to grips with what is required of them. The need for further research to determine the ways in which the therapy program or the therapist could facilitate parental participation, and how therapists might evaluate parents' readiness to participate in a home program is recommended.