Advocacy, stress, and quality of life in parents of children with developmental disabilities

Abstract

Research has consistently demonstrated that parents of children with developmental disabilities experience more stress than parents of non-disabled children (Beckman, 1991; Dyson, 1991). In order to face the challenges involved in raising a child with a developmental disability, parents must empower themselves by developing the skills to act effectively as advocates. However, little is known about the relationship between advocacy and family stress and quality of life. The purpose of this study is to determine the nature of this relationship through a qualitative analysis of parents’ responses to a structured interview. Twenty-six primary caregivers of children with developmental disabilities were interviewed. Their responses were analysed using qualitative methodology outlined by Guba (1978) and Patton (1990). Advocacy was found to be related to both negative outcomes, involving increased stress and decreased quality of life, as well as positive outcomes, involving decreased stress and increased quality of life. Seven themes were found to be critical in determining the direction o f the relationship. These themes include the parent’s perception of the role of advocacy, the outcome of the advocacy actions, the relationship with professionals, the focus of the advocacy efforts, the effect on the parent’s personal life, and the parent’s personal feelings regarding their experiences as a parent of a child with special needs.