Disordered Discourse: Perception of Gender Amongst Parents of Children Living With Congenital Adrenal Hyperplasia

This paper explores the perception of gender among parents of children living with Congenital Adrenal Hyperplasia in order to better understand the ways in which socio-cultural constructions of gender influence medical diagnosis, health care, and parenting. Through strategies of purposive and convenience sampling, data were derived from semi-structured interviews with parents of children with classical CAH and a survey of 19 parents of children with various types and degrees of the disorder. The analysis was supplemented by an extensive interview with a pediatric endocrinologist specializing in CAH. Responses to multiple-choice survey questions were converted into statistics to gauge the range of experiences within each category. Responses to open-ended questions were analyzed using a grounded theory method to contextualize responses and identify salient themes. Findings suggested that treatment and surgical intervention provide a means to attaining social normalcy while simultaneously providing a discursive space where parents reinforce or redefine their conceptions of gender. Part of this process manifests in the acceptance of or resistance to authoritative medical categories. By attempting to center the experiences of parents to see how socio-cultural perceptions of gender affect the parenting, diagnosis, health care, and ultimately, the life of people living with CAH, this study contributes to an established but still emerging research agenda examining the complex dimensions of gender as it relates to CAH.