Activities and participation of children with cerebral palsy: parent perspectives

Abstract

Purpose: To explore parents’ views of the activities and participation of children with cerebral palsy (CP) with a range of communicative abilities and the factors (personal and environmental) that influenced these. Methods: Thirteen parents of children with CP aged 4—9 years participated in semi—structured individual interviews. Interviews were recorded, transcribed and analysed thematically. Identified codes and themes were mapped to the domains of the International Classification of Functioning, Disability and Health — Children and Youth Version (ICF-CY). Results: Parents’ responses reflected all ICF-CY domains comprising activity, participation and environmental factors. Codes were primarily mapped to the domains learning and applying knowledge, communication, mobility and interpersonal interactions and relationships. Key barriers identified included aspects of parents’ own interactions with their child (e.g. not offering choices), unfamiliar people and settings, negative attitudes of others and children’s frustration. Facilitators included support received from the child’s family and school, being amongst children, having a familiar routine and the child’s positive disposition. Conclusions: Despite the barriers experienced, children participated in a range of activities. Parents placed importance on communication and its influence on children’s independence, behaviour and relationships. Barriers and facilitators identified highlight aspects of the environment that could be modified through intervention to enhance communication and participation.

Implications for Rehabilitation

• Children’s activities and participation were largely related to early learning tasks (e.g. literacy), communication, mobility and interactions.

• Intervention aimed at improving activities and participation may address the various child, impairment, social and environment factors identified here as impacting on activities and participation (e.g. the child’s personal characteristics, communication and physical impairments, the support and attitudes of others and the familiarity of the environment).

• Therapists will need to consider (and manage) the potential negative impact communication deficits may have on children’s behaviour, independence and social skills which may in turn detrimentally impact on activity and participation.

• Activity
• cerebral palsy
• communication
• ICF-CY
• paediatrics
• participation

Acknowledgements

We thank all the families who generously participated in this study. We are grateful to those who assisted in recruitment, particularly Mela Harambasic, Kate Walley, Bernadette O'Connor, Laura Wells (The Royal Children’s Hospital), Frances Di Cocco (Kids Plus Foundation), Anoo Bhopti (Yooralla) and Claire Cotter (Cerebral Palsy Education Centre).

Declaration of interest

The authors report no conflicts of interest. This study was funded by a National Health & Medical Research Council (NHMRC) postgraduate scholarship (#607448) and was supported by the Victorian Government's Operational Infrastructure Support Program. The following authors were supported by NHMRC: A.M. (Career Development Award #607315); S.R. (Practitioner Fellowship # 1041892); F.M. (Population Health Capacity Building Grant #436914 and Early Career Fellowship #1037449); A.M., S.R., F.M. (Centre of Research Excellence Grant #1023493).