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Updated: Jun 22, 2025

A Novel Method for Involving Women of Color at High Risk for Preterm Birth in Research Priority Setting
Published on: January 12, 2018
Mind the gap: Comparing parents' information needs about impending preterm birth to current clinical practices using
Angela C M van Zijl1, Sylvia A Obermann-Borst2, Marije Hogeveen3
1Department of Neonatology, Wilhelmina Children's Hospital, Lundlaan 6, 3582 EA Utrecht, the Netherlands.
Objective:
To identify parents' information needs about impending very preterm birth and compare these needs to current information practices in the Netherlands.
Methods:
Step 1: We surveyed N = 203 parents of preterm infants to assess their information needs. Data were analyzed using inductive thematic analysis. Step 2a: We collected information resources from hospitals (N = 9 NICUs) and via an online search. These materials were analyzed using deductive thematic analysis. Step 2b: We compared findings from Steps 1-2a.
Results:
We identified four themes pertaining to parents' information needs: (1) participation in care, (2) emotional wellbeing, (3) experience/success stories, and (4) practical information about prematurity. Clinicians' communicative skills and time were considered prerequisites for optimal information-provision. Notably, hospital resources provided mainly medical information about prematurity with some emphasis on participation in care, while parent associations mainly focused on emotional wellbeing and experience/success stories.
Conclusion:
While parents demonstrate clear information needs about impending very preterm birth, current information resources satisfy these partially.
Innovation:
Our multidisciplinary research team included both scholars and veteran NICU parents. As such, we identified parents' information needs bottom-up. These parent-driven insights will be used to design an innovative, tailored information platform for parents about impending very preterm birth.
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