Determinants of participation in family and recreational activities of young children with cerebral palsy

Abstract

Purpose: To test a model of child, family and service determinants of participation in family and recreational activities for young children with cerebral palsy (CP).

Methods: Participants were a convenience sample of 429 children (242 males) with CP, aged 18 to 60 months, representing all levels of the Gross Motor Function Classification System (GMFCS). Children were divided into two groups by GMFCS levels, levels I to II and levels III to V. Data on impairments and gross motor function were collected by therapists; parents provided information about children’s health conditions and adaptive behaviour. Seven months later, parents reported on family life and services received. One year after the beginning of the study, parents reported their children’s participation. Data from the two groups of children were analysed separately using structural equation modelling.

Results: The model explained 35% and 40% of the variance of frequency of participation in family and recreation and 28% and 38% of enjoyment in participation, for the two groups of children, respectively. Children’s adaptive behaviour, family ecology, and number of community recreational programs were associated with the frequency of participation for both groups. Gross motor function was only associated with the frequency of participation for children in levels III–V. Adaptive behaviour was associated with enjoyment for both groups. The extent services met children’s needs was associated with enjoyment for children in levels I to II and family ecology was a determinant of enjoyment for children in levels III to V.

Conclusion: Supporting children’s adaptive behaviour, family ecology, and access to community recreational programmes may foster participation in family and recreational activities for young children with CP.

Implications for Rehabilitation

• Participation in family and recreational activities for young children with CP is complex and influenced by child, family and environmental factors.

• Practitioners are encouraged to support children’s adaptive behaviour and access to community programs and family relationships, involvement in community activities and expectations of their children.

• Optimizing gross motor function for children who have limitations in self-mobility may enhance their participation in family and recreational activities.

• For children with a good prognosis for walking, providing services perceived by parents to meet their children’s needs may enhance children’s enjoyment of participation.

Keywords:

• Cerebral palsy
• enjoyment and adaptive behaviour
• participation
• recreational activities
• young children

Acknowledgements

We thank Peter Rosenbaum for his help with case ascertainment and Barbara Stoskopf, overall study coordinator at CanChild Center for Childhood Disability Research, Audrey Wood, Philadelphia Region site coordinator, and Allison Yocum, Seattle Site coordinator for their able assistance in this project. Input from parent consultants Tina Hjorngaard (Canada) and Barbara Sieck-Taylor (USA) was invaluable at all stages.

Disclosure statement

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.

Funding information

This study was funded by the Canadian Institutes of Health Research (MOP 81107) and the US Department of Education, National Institute for Disability and Rehabilitation Research (H133G060254).