Prenatal consultation with a neonatologist for congenital anomalies: Parental perceptions

OBJECTIVES: To investigate parental expectations of a prenatal consultation with a neonatologist for a prenatally diagnosed congenital anomaly, to identify parents' values and unmet needs, and to obtain recommendations for improving physician - parent communication in a prenatal consultation. METHODS: Parents referred to neonatology for prenatal consultation after the diagnosis of a congenital anomaly. Completed 2 qualitative interviews: the first within 1 week of the consultation and the second 1 week after delivery. Interviews were analyzed for themes by using the constant comparative method associated with the grounded theory method. RESULTS: Thematic saturation was achieved after 42 interviews (22 women); only mothers participated. Five main themes emerged: (1) preparation; (2) knowledgeable physician; (3) caring providers; (4) allowing hope; and (5) time. Mothers believed that a consultation with a neonatologist helped them prepare for the perinatal course. They wished to know the management plan and all possible outcomes. Mothers wanted information specific to their situation and tailored to their knowledge base. Receiving conflicting information from physicians increased anxiety and eroded confidence. Seeing the NICU during the consultation was emotionally difficult but valuable. Mothers wanted realistic information, regardless of how grim, yet wanted to retain hope. All mothers would recommend a prenatal consultation with a neonatologist. CONCLUSIONS: Mothers perceived that a consultation with a neonatologist, which included a NICU tour, prepared them for the perinatal course. Parents want realistic medical information, specific to their situation, provided in an empathetic manner and want to be allowed to hope for the best possible outcome.