Parents’ actions, challenges, and needs while enabling participation of children with a physical disability: a scoping review
1 Faculty and Health Care, Centre of Research Autonomy and Participation for persons with a chronic illness, Zuyd University, Nieuw Eyckholt 300, Heerlen, DJ 6419, the Netherlands
2 Department of Occupational Therapy, Faculty of Health and Care, Zuyd University, Nieuw Eyckholt 300, Heerlen, DJ6419, the Netherlands
3 Department of Rehabilitation Medicine, CAPHRI, School for Public Health and Primary Care, Faculty of Health, Medicine and Life Sciences, Maastricht University, P.O. Box 616, Maastricht, MD6200, the Netherlands
4 Department of General Practice, Faculty of Health, Medicine and Life Sciences, Maastricht University, P.O. Box 616, Maastricht, MD6200, the Netherlands
5 Rudolf Magnus Institute of Neuroscience and Center of Excellence for Rehabilitation Medicine, University Medical Center Utrecht and Rehabilitation Center De Hoogstraat, Rembrandtkade 10, Utrecht, TM3583, the Netherlands
6 Department of Special Education, Faculty of Social Sciences, Utrecht University, PO Box 80140, Utrecht, TC3508, the Netherlands
7 Department of Neonatology, Wilhemina Children's Hospital, University Medical Center Utrecht, Utrecht, AB 3508, the Netherlands
8 Partner of NetChild, University Network for Childhood Disability Research in the Netherlands, Utrecht, the Netherlands
9 Department of Social and Welfare Studies (ISV), Faculty of Health Sciences, Linköping University, Norrköping, 601 74, Sweden
10 Aachener Laienhelfer initiative e.V, Sophienstrasse 15, Aachen, 52070, Germany
11 Adelante centre of expertise in rehabilitation, Zandbergsweg 111, Hoensbroek, CC6432, the Netherlands
BMC Pediatrics 2012, 12:177 doi:10.1186/1471-2431-12-177Published: 8 November 2012
Pediatric rehabilitation considers Family-centered service (FCS) as a way to increase participation of children with a physical disability in daily life. An important principal is that parents greatly contribute to their child’s participation at school, at home, and in the community. However, it is unclear what kind of information is available from literature about what parents actually do to support their child’s participation and what problems and needs they experience? Hence, the aim of this study was to provide an overview of the actions, challenges, and needs of parents in enabling participation of their child with a physical disability that is neurological and non-progressive in nature.
Scoping review with extensive literature search (September 2011) and a thematic analysis to synthesize findings.
Fourteen relevant articles revealed two major themes: ‘parents enable and support performance of meaningful activities’ and ‘parents enable, change and use the environment’. Each theme holds a number of actions (e.g. choosing the right type of meaningful activities for facilitating social contacts) and challenges (e.g. negative attitudes of other people). Less information is available about the needs of parents.
This study indicates that parents apply a broad range of strategies to support participation of their children. They experience many challenges, especially as a result of constraints in the social and physical environments. However, this review also shows that little is known about needs of parents in facilitating participation. As Family-centered service (FCS) philosophy is all about the needs of the child and the family, it is essential to further investigate the needs of the parents and to understand if and to what extent they wish to be supported in enabling their child’s participation in daily life.