Parents’ concerns about their child’s doing, being, becoming and belonging

Friday, November 1, 2013
First author:
Piškur B.
Symposium:
Family & Disability Issues
Type:
Oral
Organisations

1 Centre of Research Autonomy and Participation for persons with a chronic illness, Zuyd University, Heerlen, the Netherlands
2 Department of Occupational Therapy, Faculty of Health and Care, Zuyd University, Heerlen, the Netherlands
3 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 Department of General Practice, Faculty of Health, Medicine and Life Sciences, Maastricht University, Maastricht, the Netherlands
5 Rudolf Magnus Institute of Neuroscience and Center of Excellence for Rehabilitation Medicine, University Medical Center Utrecht and Rehabilitation Center De Hoogstraat, Utrecht, the Netherlands
6 Department of Special Education, Faculty of Social Sciences, Utrecht University, Utrecht, the Netherlands
7 Department of Pediatric Psychology, University Medical Center Utrecht, Wilhelmina Children's Hospital, Utrecht, the Netherlands
8 Partner of NetChild, University Network for Childhood Disability Research in the Netherlands, the Netherlands
9 Adelante Centre of Expertise in Rehabilitation, Hoensbroek, the Netherlands

All authors:

Barbara Piškur1-3,8*, Anna J.H.M. Beurskens1,4, Marian J. Jongmans6-8, Marjolijn Ketelaar5,8, Rob J.E.M. Smeets3,9

Stream:
(Family) Quality of Life
Trefwoorden:
social participation, physical disability, children, parents

Aim

For children, social participation is a process of social development and growth; children develop and perceive their own individuality within their community and gain skills to communicate with other people. It shows the degree to which a child participates in a broad range of social roles and relationships. Children with a physical disability experience restrictions in social participation, mainly caused by the environment. Support of the social environment, in particular parents, is crucial for successful social participation. Little is known about how parents contribute to their child’s social participation. This study investigated parents’ actions, challenges and needs while enabling social participation of their child with a physical disability.

Methods

A literature review, a diary method and a survey were conducted.

Results

The three studies resulted into an extended overview and new knowledge of parents’ actions, challenges and needs. The findings indicate that parents are very concerned with their child’s doing, being, becoming and belonging. Doing provides mechanisms for social interaction. Parents often choose activities that fit their child’s abilities and enable social interaction with peers. Being is about being true to ourselves and what is distinctive about us that we can bring to others as part of our relationship. Parents often see challenges for their child to engage in activities to be truly himself/herself (being) or to develop their interests and capacities (becoming). A sense of belonging seems the most important concern for parents; how to support their child to be part of society and not being isolated. During this presentation several examples of parents’ actions, challenges and needs while enabling their child’s social participation in daily life will be shown.

Conclusions

Bearing in mind that parents have the foremost influence on social participation of children with a physical disability, meeting their individual needs while supporting their child’s doing, being, becoming and belonging should become an objective for service providers and policy makers.