Rosa Geurtzen1, Jos Draaisma2, Rosella Hermens3, Hubertina Scheepers4, Mallory Woiski5, Arno van Heijst2, Marije Hogeveen2. 1. Radboud University Medical Center, Radboud Institute for Health Sciences, Amalia Children's Hospital, Department of Pediatrics, Nijmegen, The Netherlands. Electronic address: Rosa.Geurtzen@radboudumc.nl. 2. Radboud University Medical Center, Radboud Institute for Health Sciences, Amalia Children's Hospital, Department of Pediatrics, Nijmegen, The Netherlands. 3. Radboud University Medical Center, Radboud Institute for Health Sciences, Department of IQ Healthcare, Nijmegen, The Netherlands. 4. Department of Gynecology, Maastricht UMC+, Maastricht, The Netherlands. 5. Radboud University Medical Center, Radboud Institute for Health Sciences, Amalia Children's Hospital, Department of Gynecology, Nijmegen, The Netherlands.
Abstract
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.
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.
Authors: R Geurtzen; J F M van den Heuvel; J J Huisman; E M Lutke Holzik; M N Bekker; M Hogeveen Journal: J Perinatol Date: 2021-07-20 Impact factor: 2.521
Authors: Josephus F M van den Heuvel; Marije Hogeveen; Margo Lutke Holzik; Arno F J van Heijst; Mireille N Bekker; Rosa Geurtzen Journal: BMC Med Inform Decis Mak Date: 2022-01-06 Impact factor: 2.796