RESUMO
BACKGROUND AND OBJECTIVES: The purpose of the study is to assess parental experiences of therapeutic hypothermia for moderate to severe hypoxic-ischemic encephalopathy with the goal of improving local clinical practice guidelines and fostering family-integrated care in neonates with hypoxic-ischemic encephalopathy. METHODS: This single-center retrospective cross-sectional study included neonates and their parents registered in the Swiss National Asphyxia and Cooling Register between 2011 and 2021. Based on a literature review, an anonymous survey of parents of neonates with hypoxic-ischemic encephalopathy was developed and conducted using an online survey tool. Descriptive statistics were used to analyze the survey results. RESULTS: The overall response rate to this survey was 64% (46/72). Sufficient information about hypoxic-ischemic encephalopathy was reported by 78% (36/46) of parents and sufficient information about the process of therapeutic hypothermia by 87% (40/46) of parents. The majority of parents indicated the need for, and at least a satisfactory perception of, professional (91%; 42/46) and emotional (87%; 40/46) support. Parents identified fostering family involvement and regular family communication that focuses on family integrated care as areas for improvement. CONCLUSIONS: There is still an unmet need for multidisciplinary teams to provide professional, empathetic, high quality, and family-integrated care to families with a neonate receiving therapeutic hypothermia for moderate or severe hypoxic-ischemic encephalopathy.