Comparing the priorities of parents and young people with cerebral palsy

Disabil Rehabil. 2011;33(17-18):1650-8. doi: 10.3109/09638288.2010.542875. Epub 2010 Dec 31.

Abstract

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.

Publication types

  • Comparative Study
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Analysis of Variance
  • Cerebral Palsy / physiopathology
  • Cerebral Palsy / psychology*
  • Cerebral Palsy / rehabilitation*
  • Chi-Square Distribution
  • Comorbidity
  • Cross-Sectional Studies
  • Disabled Children / classification*
  • Disabled Children / rehabilitation*
  • Female
  • Health Priorities*
  • Humans
  • Interviews as Topic
  • Male
  • Parents / psychology*
  • Statistics, Nonparametric
  • United States
  • Young Adult