"Everything Remains Uncertain": Theorizing Parents' Communication About Uncertainty, Hope, and Hopelessness While Managing Complex Pediatric Chronic Conditions

Abstract

Navigating a child’s chronic illness and treatment is particularly challenging for parents and parental surrogates. These experiences may add to parents’ feelings of uncertainty. During this time, many parents report the need to be the “bearer of hope” for their child, regardless of the challenges that may prevent this from being possible. Researchers studying hope and uncertainty have acknowledged that these two concepts co-exist during the parental caregiver experience and effected by external factors (e.g., medical information or conversations with other people); however, a dearth of research remains about parents’ meanings and interactions that influence their social constructions of uncertainty, hope, and hopelessness. Therefore, studying parents’ talk about their experiences with uncertainty, hope, and hopelessness as they continue to manage their child’s chronic condition and treatment is one way to glean this important information. Subsequently, a grounded theory analysis was conducted on 35 parent interviews about their experiences with uncertainty, hope, and hopelessness as their chronically ill child received ongoing medical or pharmacological treatment. Across the parents interviewed, comparing self to others was the core category that emerged from parents’ talk and connected the categories and subcategories within the model (see Figure 1). Comparing self to others was described as a recursive communicative and psychological process that involved seeking information and assigning meaning to differences. Within parents’ comparisons, they communicated that information seeking and holding conversations with others (e.g., other parents, friends, healthcare providers) provided them with a meaningful understanding of their circumstances as they proceeded to construct their “new normal,” and also assisted them with navigating the tensions between hope and hopelessness. Thus, an analysis of parents’ talk revealed how everyday conversations and interactions (e.g., online information-seeking), as well as larger social meanings, may have an effect on parents’ constructions of uncertainty, hope, and hopelessness. This information may be useful for developing messages within family-based interventions and educating medical professionals and other non-profit organizations that interact and serve families with chronically ill children.