Comparing the priorities of parents and young people with cerebral palsy

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.

Keywords:

• Cerebral palsy
• parents
• adolescence
• youth
• participation

Acknowledgements

The Children's Activity and Participation Group includes: Lawrence Vogel, MD, Shriners Hospitals for Children, Chicago, IL; Donna Oeffinger, PhD and Chester Tylkowski, MD, Shriners Hospitals for Children, Lexington, KY; George Gorton, BS, Shriners Hospitals for Children, Springfield, MA; Anita Bagley, PhD, Shriners Hospitals for Children, Sacramento, CA; Mark Abel, MD and Richard Stevenson, MD, Kluge Children's Rehabilitation Center Charlottesville, VA. We would like to thank the families who took part in the study and the research coordinators at each hospital.

Declaration of interest

The study was supported by a grant from Shriners Hospitals for Children (COS No. 9197).