Parents' knowledge about enablement of participation of children with a physical disability

Background: Participation is fundamental to the child’s health and well-being. Regardless of its importance children with a physical disability participate less frequently in almost all activities compared to children... [ view full abstract ]

Background:
Participation is fundamental to the child’s health and well-being. Regardless of its importance children with a physical disability participate less frequently in almost all activities compared to children without physical disabilities. Occupational therapists, as well other rehabilitation professionals, recognize that parents are the experts in the child’s abilities and needs. However, most studies with parents looked at the impact of having a child with a disability on parents’ life, like parent personal stress. Still very little is known about what parents of children with a physical disability do in their daily life to support their child’s participation, what they might come across and what needs they might have.
Methods:
Three studies have been conducted with parents of school aged children between 2011-2014.
Results:
Studies showed that there is much to be learned from parents. Parents’ take many different actions to support their child, and come across numerous challenges and have a large variety of needs mainly directed towards barriers in physical and/or social environments. In the eyes of parents, especially situations in which the professionals and authorities lack understanding of child’s life with a disability, lack understanding of needs of children to participate, and misunderstand the experience and expertise of the parents, pushes them to take action.
Conclusions and application to practice:
Family-centered service is a systematic way of creating a partnership with families and enhance their functioning as a family. It is therefore essential to actively involve parents in an occupational therapy process and service provision.