When Black and White Medicine Turns Gray: Exploring the Interplay and Meaning of Discoursing about Parenting a Child with a Complex Chronic Condition

Abstract

Parents of children diagnosed with complex chronic conditions (CCCs) face many challenges with managing their child's health. As parents are tasked with competing demands and the constant changes required to provide the best care possible for their child, talk about contradictions regarding their dual, and oftentimes competing, roles and responsibilities as both parent and caregiver is likely to occur. Using relational dialectics theory (Baxter, 2011) as a framework, we conducted a contrapuntal analysis to analyze 35 White, mostly Christian parents’ narratives about their experiences managing their child’s healthcare. Two primary discourses emerged: the centripetal discourse of normal health and the centrifugal discourse of difference. The interplay between these two primary discourses led to a hybrid discourse: difference is our new normal. Within this discourse, parents discussed previous speech encounters where they relied upon the co-construction of a new normal with others who were living or willing to live in their new reality. Our findings emphasize how an assessment of parents’ talk conveys their discourse-dependence with navigating the inevitable uncertainties associated with managing their child’s CCC. In addition, we discuss how parents co-construct their new normal in the face of unique family functioning that is structurally different from societal expectations and social norms about parenting and pediatric health care management.