An Exploration of Parent Perceptions of School Advocacy Expectations for Chronically Ill Children

Abstract

This record of study applies a qualitative research design to explain the phenomenon of parent advocacy in school systems for parents whose children suffer from a specific illness known as chronic recurrent multifocal osteomyelitis. This study seeks to explain frustrations experienced by parents during their work as the key communicators between the educational and medical communities on behalf of their children. Semistructured interviews were conducted and analyzed using in vivo coding to create five case studies in which parents described in their own words how they function as action researchers. The results of this analysis explain how the study participants have overcome obstacles in their advocacy. These case studies show how parents have created partnerships within their children’s school settings and social media platforms to leverage the best possible academic, emotional, and social outcomes for their children. Using this knowledge from successful parent advocates, I created a communication guide and video that can be used by other parents within the diagnosed community to replicate some of the strategies identified as successful by the study participants. I shared the communication guide and video on the disease-specific social media channel and website for future use by parents.