Prenatal counseling in extreme prematurity - Insight into preferences from experienced parents

•Most parents prefer more than one counseling conversation, but for various reasons.•Supportive material should be dynamic and visualize complex information.•Counseling content must be targeted to decision-making and preparation for future situations.•Various preferred decision-making roles among parents should be respected. In-depth analysis of parental preferences in prenatal counseling in extreme prematurity. A nationwide qualitative interview study among experienced parents of extremely premature babies born at 24+0/7 – 24+6/7 weeks of gestation. Semi-structured interviews were held until saturation, transcribed and qualitatively analyzed to search for parental counseling preferences. Thirteen parents were included, most parents decided on active care. Organisation: Parents wanted counseling as soon as possible, and for various reasons they wanted more than one conversation. Supportive material to help visualize complex information was suggested to be helpful, preferably with adjustable levels of detail. An empathetic, honest style with commitment of the counselor was regarded important. Content: Understandable statistics should be used for those who want it. Parents needed different information with respect to the decision-making as opposed to being prepared for future situations. Decision-making: The preferred share of parents’ and doctors’ input in decision-making varied among parents and among situations. Parents expressed that their roles were to take responsibility for and protect their infant. Various parental preferences for prenatal counseling were found. Common parental preferences for the organisation, content and decision-making elements can provide a starting point for personalized prenatal counseling.