Comparing the priorities of parents and young people with cerebral palsy

PURPOSE: Adolescence is a period of change and transition that may pose unique challenges for young people with cerebral palsy (CP). We compared statements of priorities, i.e. what adolescents (13-17) and youth (18-21) and their parents would like to be able to do to enable greater activity and participation. METHODS: Participants were 198 parents and 135 young people with CP (45% males) from seven Children's Hospitals in the United States. The interviews were structured using The Canadian Occupational Performance Measure. Priority statements were categorised as Adult Tasks, Biology, Self-Identity or Physical Activity. RESULTS: All parents identified more priorities for Biology and Adult Tasks (p < 0.001). Adolescents identified the fewest priorities for Self-Identity (p < 0.01). Youth identified, in descending order of frequency, priorities in Adult Tasks, Biology, Self-Identity and Physical Activity (p < 0.05). In the parent-young people dyads when disagreements occurred, Self-Identity issues were identified more often by parents (p < 0.05) and priorities for Physical Activity were identified more often by young people (p < 0.01). CONCLUSIONS: The shared and differing priorities of parents and young people with CP may reflect different roles, perceptions and experiences. The findings have implications for healthcare professionals, providing a framework to compare and contrast the priorities of young people and their parents.

Comparing the priorities of parents and young people with cerebral palsy Journal Articles