title: Parents' actions, challenges, and needs while enabling participation of children with a physical disability: a scoping review.
abstract: BACKGROUND
  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.
  
  
  METHODS
  Scoping review with extensive literature search (September 2011) and a thematic analysis to synthesize findings.
  
  
  RESULTS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: 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. barbara.piskur@zuyd.nl
authors.forename: Barbara
authors.initials: B
authors.lastname: Piškur
authors.forename: Anna Jhm
authors.initials: AJ
authors.lastname: Beurskens
authors.forename: Marian J
authors.initials: MJ
authors.lastname: Jongmans
authors.forename: Marjolijn
authors.initials: M
authors.lastname: Ketelaar
authors.forename: Meghan
authors.initials: M
authors.lastname: Norton
authors.forename: Christina A
authors.initials: CA
authors.lastname: Frings
authors.forename: Helena
authors.initials: H
authors.lastname: Hemmingsson
authors.forename: Rob Jem
authors.initials: RJ
authors.lastname: Smeets
mesh_terms: D002547:Cerebral Palsy / Q000534:rehabilitation*; D002648:Child; D006801:Humans; D020380:Needs Assessment; D016487:Parenting; D010290:Parents / Q000523:psychology; D058992:Social Participation; D012944:Social Support; D016135:Spinal Dysraphism / Q000534:rehabilitation*