'My child is not an illness': Mothers as Advocates for Pedagogy and Policies for Chronically Ill Students.

摘要

On a national level, there is no answer in the law about identifying and servicing chronically ill students. Because the national definitions and requirements are ambiguous, the local policies are also unclear. The purpose of this study was to analyze the stories told by mothers about their children who suffer from chronic illness in order to help make recommendations for improving relationships between the families and schools as well as improving pedagogical practices for students. This study was framed by postmodernism using the lenses of postmodern health theories and theories of mothering. To complete this study, the qualitative method of narrative inquiry was used to elicit narratives from four mothers of students with chronic illness. The mothers indicated that the communication they receive from school personnel, including the school nurse, is essential to understanding the relationship that they feel they have with the school. Aside from the school nurse, many individuals were responsible for supporting the physical, social, emotional, and academic growth of the children. However, the mothers did not always feel that school personnel were able or willing to meet the specific needs of children with chronic illness. Because of this, the mothers filled many roles in their children’s lives to support their main and most important role of a loving mother. This study found that teachers need various kinds of knowledge and skills to accommodate all of the stakeholders in a chronically ill child’s education, but the school organization is not set up to support the teachers in meeting those needs. The organization of schools needs to actively change to ensure that chronically ill students have the educational experience that every child is entitled to receive.