Despite advances in life-saving technology for critically ill neonates, challenges continue to arise for infants delivered with extreme prematurity, congenital anomalies, and genetic conditions that exceed the limits of currently available interventions. In these situations, parents are forced to make cognitively and emotionally difficult decisions, in discussion with a neonatologist, regarding how aggressively to provide supportive measures at the time of delivery and at what point burdens of therapy outweigh benefits. Current guidelines recommend that parents' values should guide these decisions; however, little is known about the values parents hold, and how those values are employed in the context of complexity, uncertainty, and emotionality of these situations. Systematic investigation of how parents derive their values and how clinicians should engage with parents about those values is necessary to guide the development of interventions to enhance shared decision-making processes, ultimately improving satisfaction, coping, and resilience and minimizing the potential for regret.
- Antenatal counseling
- Shared decision-making
ASJC Scopus subject areas
- Pediatrics, Perinatology, and Child Health