Parents' Perceptions of Advocacy Activities and Their Impact on Family Quality of Life

In: Research and Practice for Persons with Severe Disabilities, Volume 29, Issue 2, p. 144-155

Abstract

The concept of family quality of life has emerged as an important outcome of service provision for children with disabilities and their families. In this article, we report families' perceptions of their advocacy efforts and the impact of these efforts on their family quality of life. A total of 104 family respondents participated in focus groups and individual interviews. Through qualitative analysis we identified two themes related to parents' perceptions about their advocacy actions: Advocacy as an obligation and advocacy as a means to improve services. Three themes also emerged regarding parents' perceptions of the impact of their advocacy actions: Advocacy enhances coping, advocacy involves struggle, and advocacy causes stress. We discuss issues related to these themes as well as two factors (the quality of their partnerships and of their child's education) that may mediate the impacts of parental advocacy. We also discuss the implications for practice and provide tips for educators to improve their practices to better support families in their advocacy efforts.