Communication During First-Time Multidisciplinary Clinic Visits: Navigating Parental Decision Making and Uncertainty Management in Pediatric Chronic Illness

Individuals with chronic illnesses must manage long-term uncertainty and decision making as they cope with the ways the illness influences almost every aspect of their lives. In the context of pediatric illnesses, parents assume the burden of uncertainty management and decision making during the diagnosis and treatment of their child’s illness. It is common for children with complex chronic illnesses to see multiple specialists for the treatment of their condition. The first visit to a specialist is often more elaborate than a routine primary care visit. While previous research has explored parents’ decision making and uncertainty management during a child’s diagnosis and during end-of-life care, less is known about these experiences during the long-term management of a chronic illness through the care of multiple specialists. The aim of the current study was to explore uncertainty and decision making during parents’ first visit to a multidisciplinary clinic for the care of their child’s complex chronic illness. Data were collected through survey measures and semi-structured interviews with 30 parents after their first visit to a vascular anomaly clinic at a large Midwestern children’s hospital. The results suggest parents’ communication with the team of specialists helps them reappraise uncertainty, engage in effective uncertainty management, and feel validated in their decision making. However, the findings also indicate that parents face multiple uncertainty management dilemmas, including not wanting certain types of information, feeling overwhelmed by the amount of information they receive, and having different information preferences than their spouses. Ultimately, the results also have important implications for existing uncertainty theories and their application to parents’ uncertainty experiences.