TY - JOUR
T1 - The lived experience of parents enabling participation of their child with a physical disability at home, at school and in the community
AU - Piskur, Barbara
AU - Meuser, Sarah
AU - Jongmans, Marian J.
AU - Ketelaar, Marjolijn
AU - Smeets, Rob J. E. M.
AU - Casparie, Barbara M.
AU - Haarsma, Frederike A.
AU - Beurskens, Sandra
PY - 2016/4/9
Y1 - 2016/4/9
N2 - Purpose: The aim of this study was to provide an in-depth exploration and understanding of parents' thoughts, feelings and concerns they experience while reflecting on their actions, challenges and needs in enabling their child's participation at home, at school and in the community. Method: A naturalistic inquiry with thirteen Dutch parents using interpretative phenomenological analysis. Results: Analysis revealed three super-ordinate themes: Parents' experiences and concerns about systems, laws and regulations, Parents' experiences and thoughts about physical and/or social environment and Parents' experiences and feelings of finding and/or enabling an activity. Parents' often expressed feelings of disappointment derived from being misunderstood, from dealing with the complexity of systems, from hindrance of participation of their children by the social and the physical environment, and from the lack of leisure activities for their child. It is primarily restrictions in the physical and social environments that urge them to take actions, to experience challenges and think of needs. Conclusions: In-depth exploration and understanding of parents' articulated matters must be shared and taken seriously by policymakers and service providers. Parents' knowledge and experiences should be of major relevance to improve paediatric rehabilitation and other services for children with a physical disability.Implications for RehabilitationTo achieve tailored pediatric rehabilitation, involvement and needs of parents in enhancing their child's participation ought to be acknowledged.Active use of parents' experiences and knowledge regarding the participation of their child on different levels of decision making may improve daily services in pediatric rehabilitation.Aiming for optimal participation of a child with a physical disability at home, at school and in the community, the focus of pediatric rehabilitation needs to shift towards enabling, social and physical, environments.
AB - Purpose: The aim of this study was to provide an in-depth exploration and understanding of parents' thoughts, feelings and concerns they experience while reflecting on their actions, challenges and needs in enabling their child's participation at home, at school and in the community. Method: A naturalistic inquiry with thirteen Dutch parents using interpretative phenomenological analysis. Results: Analysis revealed three super-ordinate themes: Parents' experiences and concerns about systems, laws and regulations, Parents' experiences and thoughts about physical and/or social environment and Parents' experiences and feelings of finding and/or enabling an activity. Parents' often expressed feelings of disappointment derived from being misunderstood, from dealing with the complexity of systems, from hindrance of participation of their children by the social and the physical environment, and from the lack of leisure activities for their child. It is primarily restrictions in the physical and social environments that urge them to take actions, to experience challenges and think of needs. Conclusions: In-depth exploration and understanding of parents' articulated matters must be shared and taken seriously by policymakers and service providers. Parents' knowledge and experiences should be of major relevance to improve paediatric rehabilitation and other services for children with a physical disability.Implications for RehabilitationTo achieve tailored pediatric rehabilitation, involvement and needs of parents in enhancing their child's participation ought to be acknowledged.Active use of parents' experiences and knowledge regarding the participation of their child on different levels of decision making may improve daily services in pediatric rehabilitation.Aiming for optimal participation of a child with a physical disability at home, at school and in the community, the focus of pediatric rehabilitation needs to shift towards enabling, social and physical, environments.
KW - Activities of daily living
KW - children
KW - parents participation
KW - social participation
U2 - 10.3109/09638288.2015.1061612
DO - 10.3109/09638288.2015.1061612
M3 - Article
C2 - 26119575
SN - 0963-8288
VL - 38
SP - 803
EP - 812
JO - Disability and Rehabilitation
JF - Disability and Rehabilitation
IS - 8
ER -