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

Barbara Piškur; Sarah Meuser; Marian J Jongmans; Marjolijn Ketelaar; Rob J E M Smeets; Barbara M Casparie; Frederike A Haarsma; Anna J H M Beurskens

doi:10.3109/09638288.2015.1061612

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

Disabil Rehabil. 2016 Apr;38(8):803-812. doi: 10.3109/09638288.2015.1061612. Epub 2015 Jun 29.

Authors

Barbara Piškur^{1

2

3

4}, Sarah Meuser², Marian J Jongmans^{4

5

6}, Marjolijn Ketelaar^{4

7}, Rob J E M Smeets^{3

8}, Barbara M Casparie^{1

9}, Frederike A Haarsma¹, Anna J H M Beurskens^{1

10}

Affiliations

¹ a Research Centre Autonomy and Participation for Persons with a Chronic Illness, Faculty of Health, Zuyd University of Applied Sciences , Heerlen , The Netherlands.
² b Department of Occupational Therapy, Faculty of Health , Zuyd University of Applied Sciences , Heerlen , The Netherlands.
³ c Department of Rehabilitation Medicine, CAPHRI , School for Public Health and Primary Care, Faculty of Health, Medicine and Life Sciences, Maastricht University , Maastricht , The Netherlands.
⁴ d Partner of NetChild, University Network for Childhood Disability Research in the Netherlands , Utrecht , The Netherlands.
⁵ e Department of Child, Family & Education Studies, Faculty of Social and Behavioral Sciences , Utrecht University , Utrecht , The Netherlands.
⁶ f Department of Neonatology , Wilhelmina Children's Hospital, University Medical Centre Utrecht , Utrecht , The Netherlands.
⁷ g Brain Centre Rudolf Magnus and Centre of Excellence for Rehabilitation Medicine, University Medical Centre Utrecht and De Hoogstraat Rehabilitation , Utrecht , The Netherlands.
⁸ h Adelante Centre of Expertise in Rehabilitation , Hoensbroek , The Netherlands.
⁹ i BOSK, The Dutch Association of People with Disabilities and Their Parents , Utrecht , The Netherlands , and.
¹⁰ j Department of Family Practice, CAPHRI , School for Public Health and Primary Care, Faculty of Health, Medicine and Life Sciences, Maastricht University , Maastricht , The Netherlands.

PMID: 26119575
DOI: 10.3109/09638288.2015.1061612

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.

Keywords: Activities of daily living; children; parents participation; social participation.