Participation following Severe Childhood Acquired Brain Injury
Author: Susan Walker - Doctorate in Educational Psychology (DEdPsy), Cardiff University, 2018
This study explores participation at home, school and in the community following specialist in-patient rehabilitation for severe childhood acquired brain injury (ABI).
Acquired brain injury is the most common cause of death and disability in childhood (Forsyth & Kirkham, 2012). Increased survival rates correspond with increased numbers of children left with chronic disabilities.
Severe ABI during childhood changes neurological functioning that can result in wide ranging and complex learning, behaviour, communication, social/emotional and physical difficulties. These often persist for many years, and can be lifelong.
Children's everyday settings of home, school and community are important contexts in which they learn and develop.
The social model of disability represented in the International Classification of Functioning, Disability and Health - Child and Youth version (ICF-CY) (WHO, 2007) proposes that these contexts play a significant role in the extent to which a child is able to participate.
Participation, a key concept in the ICF-CY, provides optimal opportunities for learning and development and is an important determinant of social and educational success (Eriksson, 2006).
The impact of severe ABI commonly leads to restricted participation and increases the risk of social isolation and dependency.
The purpose of this qualitative study is to identify barriers and supports that influence participation in children's everyday settings following severe injury and their return to home and mainstream school after residential rehabilitation. It also aims to identify information and support needs of parents and school staff in their role of participation facilitators.
The study generated several themes including adaptation to a new way of life, managing changed needs at school, emotional well-being, and reconstruction of the child's 'self'. Many factors contributed to the extent to which participation was experienced including autonomy, supports, attitudes, services, accessibility, and the child's own emotional responses to the injury.
The implications of the findings for ways of supporting children with severe ABI, eliciting their voice, Educational Psychology practice, and further research are considered.