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

BMC Pediatrics

Rob JEM Smeets³  Helena Hemmingsson⁶  Christina A Frings⁴  Meghan Norton⁵  Marjolijn Ketelaar²  Marian J Jongmans²  Anna JHM Beurskens¹  Barbara Piškur² 

[1] Department of General Practice, Faculty of Health, Medicine and Life Sciences, Maastricht University, P.O. Box 616, Maastricht, MD6200, the Netherlands;Partner of NetChild, University Network for Childhood Disability Research in the Netherlands, Utrecht, the Netherlands;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;Aachener Laienhelfer initiative e.V, Sophienstrasse 15, Aachen, 52070, Germany;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;Department of Social and Welfare Studies (ISV), Faculty of Health Sciences, Linköping University, Norrköping, 601 74, Sweden

关键词: Scoping review;    Parents;    Children;    Physical disability;    Social participation;    Participation;   

Others  :  1170613
DOI  :  10.1186/1471-2431-12-177

 received in 2012-02-14, accepted in 2012-10-25,  发布年份 2012

【 摘 要 】

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.

【 授权许可】

   
2012 Piškur et al.; licensee BioMed Central Ltd.

【 图 表 】

Figure 1.

Figure 2.

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