Various experiences and preferences of Dutch parents in prenatal counseling in extreme prematurity Rosa Geurtzen a, *, Jos Draaisma a , Rosella Hermens b , Hubertina Scheepers c , Mallory Woiski d , Arno van Heijst a , Marije Hogeveen a a Radboud University Medical Center, Radboud Institute for Health Sciences, Amalia Children 0 s Hospital, Department of Pediatrics, Nijmegen, The Netherlands b Radboud University Medical Center, Radboud Institute for Health Sciences, Department of IQ Healthcare, Nijmegen, The Netherlands c Department of Gynecology, Maastricht UMC+, Maastricht, The Netherlands d Radboud University Medical Center, Radboud Institute for Health Sciences, Amalia Children 0 s Hospital, Department of Gynecology, Nijmegen, The Netherlands A R T I C L E I N F O Article history: Received 9 March 2018 Received in revised form 28 May 2018 Accepted 3 July 2018 Keywords: Prenatal counseling Parents Decision-making Ethics Extreme prematurity Viability A B S T R A C T Objective: To investigate experienced and preferred prenatal counseling among parents of extremely premature babies. Methods: A Dutch nationwide, multicenter, cross-sectional study using an online survey. Surveys were sent to all parents of extremely premature babies born between 2010 and 2013 at 24 +0/7 –24 +6/7 weeks of gestation. Results: Sixty-one out of 229 surveys were returned. A minority (14%) had no counseling conversation. Conversations were done more often by neonatologists (90%) than by obstetricians (39%) and in 37% by both these experts. Supportive material was rarely used (19%). Mortality (92%) and short-term morbidity (88%) were discussed the most, and more frequently than long-term morbidity (65%), practical items (63%) and delivery mode (52%). Most decisions on active care or palliative comfort care were perceived as decisions by doctor and parents together (61%). 80% felt they were involved in decision-making. The preferred way of involvement in decision-making varied among parents. Conclusion: The vast majority of parents were counseled: mostly by neonatologists, and mainly about mortality and short-term morbidity. Parents wanted to be involved in the decision-making process but differed on the preferred extent of involvement. Practice implications Understanding of shared decision-making may contribute to meet the various preferences of parents. © 2018 Elsevier B.V. All rights reserved. 1. Introduction Prospective parents should receive prenatal counseling to be informed about potential risks and outcomes of babies who are extremely premature, and about treatment modalities(active care or palliative comfort care). This is an essential but challenging task for professionals in perinatal care. According to several international recommendations on care in extreme prematurity, parents should have a role in decision-making [1–3]. So stated the Dutch guideline from 2010 on perinatal practice in extreme premature delivery, requiring informed consent of parents when initiating intensive care at 24 weeks GA [4]. Although this guideline underlined the importance of prenatal counseling, no recommendation on how to perform this counseling was provided. There is no universally accepted way of counseling and various practices in prenatal counseling at extreme prematurity have been reported [5–8]. In order to support prenatal counseling in extreme prematurity, a framework could be helpful. Existing guidelines or recommen- dations are not always locally applicable since cross-cultural differences may exist [1,3,9–11]. A local evaluation of practice and exploration of wishes of involved stakeholders is therefore necessary. A nationwide Dutch study was designed with this goal, examining both professional [12–14] and parental [15] experiences and preferences. Since parents are partners in prenatal counseling, information on their experiences and their opinions is important. Reports about parental views on prenatal counseling or decision- making in extreme prematurity have been published, but they are relatively scarce and most used interview methodologies [16–21]. Abbreviations: GA, gestational age. * Corresponding author at: Radboud University Medical Center, Amalia Children 0 s Hospital, Department of Pediatrics, PO Box 9101, 6500HB Nijmegen, Internal Code 804, The Netherlands. E-mail address: Rosa.Geurtzen@radboudumc.nl (R. Geurtzen). https://doi.org/10.1016/j.pec.2018.07.003 0738-3991/© 2018 Elsevier B.V. All rights reserved. Patient Education and Counseling xxx (2018) xxx–xxx G Model PEC 5999 No. of Pages 7 Please cite this article in press as: R. Geurtzen, et al., Various experiences and preferences of Dutch parents in prenatal counseling in extreme prematurity, Patient Educ Couns (2018), https://doi.org/10.1016/j.pec.2018.07.003 Contents lists available at ScienceDirect Patient Education and Counseling journal homepage: www.else vie r.com/locate /pateducou