Exploring participation in family and recreational activities among children with cerebral palsy during early childhood: how does it relate to motor function and parental empowerment?

Abstract

Purpose

To explore participation in real-life activities during early childhood, compare children’s participation based on motor function and investigate relationships between participation and parental empowerment.

Methods

Data derived from the Cerebral Palsy Follow-up Program (CPOP) in Norway and the research registry Habilitation Trajectories, Interventions, and Services for Young Children with CP (CPHAB). Fifty-six children (12–56 months, GMFCS levels I–IV, MACS levels I–V) and their families were included. Frequency and enjoyment of participation were assessed by the Child Engagement in Daily Life Questionnaire and parental empowerment in family and service situations by the Family Empowerment Scale at least twice during the preschool years. Differences between groups based on motor function were explored by the Kruskal–Wallis tests. A linear mixed model was conducted to explore relationships between child participation and parental empowerment.

Results

Similarities and differences in participation between children at different motor function levels varied between the activities explored. Fluctuations in frequency and stable enjoyment scores over time were most common. A statistically significant relationship was revealed between child participation and parental empowerment in family situations, but not in service situations.

Conclusions

Child participation appears as context-dependent and complexly influenced by both motor function and parental empowerment. This supports a focus on transactional processes when exploring and promoting child participation.

Implications for Rehabilitation

• Family and recreational activities represent real-life contexts providing opportunities for interactions and experiences supporting development and learning.

• Children with CP appreciate a wide range of activities in the home and community, which emphasizes the importance of providing opportunities for such participation in order to fulfill their desires and interests.

• Child participation appears as complexly influenced by the unique activity setting, motor function and characteristics of the family environment, requiring attention to transactional processes when aiming to explore and promote participation.

Keywords:

• Child participation
• real life contexts
• parental empowerment
• transactional processes
• cerebral palsy

Acknowledgements

The authors are grateful to all the families who took their time to complete the questionnaires included in this study, and to practitioners and researchers contributing to the CPOP and CPHAB registries.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

The data underlying this study are available from the Cerebral Palsy Follow-up Program (CPOP) in Norway. Restrictions apply to the availability of the data, which were used under license for the current study, and are not publicly available. However, data are available from the authors upon reasonable request and with permission of CPOP.

Additional information

Funding

The study was partially funded by the Sophies Minde Foundation.