Parents’ actions, challenges, and needs while enabling participation of children with a physical disability: a scoping review

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.The concept of participation is important in the field of childhood disability [1]. Participation has been defined by the International Classification of Functioning, Disability and Health (ICF) as “a person’s involvement in life situations” [2]. For children, involvement includes participation in everyday activities, such as recreational, leisure, school, and household activities [3]. Participation is an important outcome for the health of adults and children [4-7]. Furthermore, children’s participation at home, at school, and in the community relates to well-being, quality of life, and development [5,8-10]. Several authors use the term social participation for participation, emphasizing the importance of engagement in social situations [11-13]. Through participation in different social contexts, children gather knowledge and skills needed to intera