The lived experience of parents enabling participation of their child with a physical disability at home, at school and in the community

Abstract

Purpose: The aim of this study was to provide an in-depth exploration and understanding of parents’ thoughts, feelings and concerns they experience while reflecting on their actions, challenges and needs in enabling their child’s participation at home, at school and in the community. Method: A naturalistic inquiry with thirteen Dutch parents using interpretative phenomenological analysis. Results: Analysis revealed three super-ordinate themes: “Parents’ experiences and concerns about systems, laws and regulations”, “Parents’ experiences and thoughts about physical and/or social environment” and “Parents’ experiences and feelings of finding and/or enabling an activity”. Parents’ often expressed feelings of disappointment derived from being misunderstood, from dealing with the complexity of systems, from hindrance of participation of their children by the social and the physical environment, and from the lack of leisure activities for their child. It is primarily restrictions in the physical and social environments that urge them to take actions, to experience challenges and think of needs. Conclusions: In-depth exploration and understanding of parents’ articulated matters must be shared and taken seriously by policymakers and service providers. Parents’ knowledge and experiences should be of major relevance to improve paediatric rehabilitation and other services for children with a physical disability.

Implications for Rehabilitation

• To achieve tailored pediatric rehabilitation, involvement and needs of parents in enhancing their child’s participation ought to be acknowledged.

• Active use of parents’ experiences and knowledge regarding the participation of their child on different levels of decision making may improve daily services in pediatric rehabilitation.

• Aiming for optimal participation of a child with a physical disability at home, at school and in the community, the focus of pediatric rehabilitation needs to shift towards enabling, social and physical, environments.

• Activities of daily living
• children
• parents participation
• social participation

Acknowledgements

The authors wish to thank all the parents (members of BOSK) for their participation in the study; Mr. Johannes Verheijden (BOSK), Mrs. Helen HJ Korpel and Dr. Ramon Daniëls, Zuyd University of Applied Sciences, for their valuable contribution to this study.

Declarations of interest

This research study was financially supported by Zuyd University of Applied Sciences, Stichting Vooruit Adelante and Maastricht University. The authors report no conflict of interest. The authors are responsible for writing this article and for its content.