parents’ actions, challenges, and needs while enabling participation of children with a physical disability a scoping review父母的行为,挑战,和需要,使参与的儿童身体残疾范围审查.pdf

Piškur et al. BMC Pediatrics 2012, 12:177 /1471-2431/12/177 RESEARCH ARTICLE Open Access Parents’ actions, challenges, and needs while enabling participation of children with a physical disability: a scoping review 1,2,3,8* 1,4 6,7,8 5,8 1 Barbara Piškur , Anna JHM Beurskens , Marian J Jongmans , Marjolijn Ketelaar , Meghan Norton , Christina A Frings1,10, Helena Hemmingsson9 and Rob JEM Smeets3,11 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