Parental experiences of a cerebral palsy clinic in a poor urbanizing community

Abstract

Fifty-five parents of children with cerebral palsy (CP) attending the CP Clinic at Baragwanath Hospital were randomly selected and interviewed. An open-ended, semi-structured verbal questionnaire was used to determine the parents' understanding of their child's diagnosis, their hopes and expectations and their impressions of the therapy service offered by the clinic. All parents attending the clinic for the first time were excluded. Results showed that although an explanation of the diagnosis had been given to 54 of the participants, only 40% gave a medical explanation for their child's problems. In all cases this explanation was brief and incomplete. Most parents (87%) were still hoping for a normal outcome. Seventy-three percent of parents wanted their children to "be like other children" and 18% saw walking as a short-term goal. Economic independence and the ability to fulfil a parental role were the most common long-term goals. Eighty-four percent stated they would continue to attend the clinic even if the therapy was not helping their children. Home visits were thought to be a good idea by the majority (82%) of parents. The study demonstrated that parents' understanding of CP was vague, and their hopes for their children's future unrealistic. As the majority of children attending the clinic were still young, the parents' hopes for a normal child may not be that unrealistic. Parents were generally satisfied with the service provided but this may reflect their disempowerment. The need for appropriate education of parents regarding diagnosis, outcome and services available is highlighted, as are the needs for establishing mutual goals in therapy, and empowering parents.