The lived experience of parents enabling participation of their child with a physical disability at home, at school and in the community

Abstract

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 Rehabilitation To 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.

Struggling to Enable Physical Activity for Children with Disabilities: A Narrative Model of Parental Roles

“…Moreover, the present study illustrates that when support systems do not meet the parents' needs, they take on a role as activist to fight for their children's right to PA. Other researchers have made the same description of parents fighting to get appropriate help and aids for their children (Piskur et al 2016;Schleien et al 2014;Woodgate et al 2015). The role as activist was described in this present study as an energy thief for the parents due to the lack of support systems.…”

Out-of-home Activity Accessibility Checklist for Parents of Children with Gross Motor Dysfunction

“…The majority of items (23 items) were society level items. Several studies have also reported that unsuitable environments and attitudes and behaviours of the general public limited the participation of children with disabilities and their families [3,4,6,8,21]. Furthermore, all the items established in the required assistance and resources domain required society level improvement (#35-39).…”

Changing Places, Changing Lives

“…The built environment was recognised as the most frequent barrier towards achieving participation in the community whilst assistive technology, environmental adaptations, and facilities were determined the top three factors that enhance participation of their child. In a second small qualitative study, Piškur et al (2015b) interviewed 13 parents of children with a disability to explore the lived experiences of enabling participation for their child. The notion that reduced participation results from restricted environments is reinforced (Piškur et al, 2015a;Piškur et al, 2015b;Raymond et al, 2014), particularly environments such as sanitary facilities, entrances, and stairs within both the school and in the broader community (Piškur et al, 2015b).…”

“…In a second small qualitative study, Piškur et al (2015b) interviewed 13 parents of children with a disability to explore the lived experiences of enabling participation for their child. The notion that reduced participation results from restricted environments is reinforced (Piškur et al, 2015a;Piškur et al, 2015b;Raymond et al, 2014), particularly environments such as sanitary facilities, entrances, and stairs within both the school and in the broader community (Piškur et al, 2015b). Similarly in Australia, Bigby and Balandin's (2005) mixed methods study purposively sought 40 Victorian day and community services accessed by individuals with lifelong disabilities.…”