Mind the gap: Comparing parents' information needs about impending preterm birth to current clinical practices using a mixed methods approach
PEC Innovation, vol. 4, pp. 100297
Abstract
To identify parents' information needs about impending very preterm birth and compare these needs to current information practices in the Netherlands. 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. 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. While parents demonstrate clear information needs about impending very preterm birth, current information resources satisfy these partially. 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.
Authors 7
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Angela C.M. Van Zijl corresponding
Wilhelmina Children's Hospital
Affiliation as printed
Department of Neonatology, Wilhelmina Children's Hospital, Lundlaan 6, 3582 EA Utrecht, the Netherlands
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Affiliation as printed
Care4Neo, Neonatal Patient and Parent Advocacy Organization, Marshallweg 13 (unit 2), 3068 JN Rotterdam, the Netherlands
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Radboud University Nijmegen · Radboud University Medical Center
Affiliation as printed
Department of Neonatology, Radboud University Medical Center, Geert Grooteplein Zuid 10, 6525 GA Nijmegen, the Netherlands
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Leiden University Medical Center
Affiliation as printed
Department of Obstetrics, Leiden University Medical Center, Albinusdreef 2, 2333 ZA, Leiden, the Netherlands
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Affiliation as printed
Department of Pediatrics, Emma Children's Hospital, Meibergdreef 9, 1105 AZ, Amsterdam, the Netherlands
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Radboud University Nijmegen · Radboud University Medical Center
Affiliation as printed
Department of Neonatology, Radboud University Medical Center, Geert Grooteplein Zuid 10, 6525 GA Nijmegen, the Netherlands
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OLVG · Vrije Universiteit Amsterdam
Affiliation as printed
Department of Language, Literature & Communication, Vrije Universiteit Amsterdam, De Boelelaan 1105, 1081 HV Amsterdam, the Netherlands
Department of Pediatrics|Neonatology, OLVG Amsterdam, Jan Tooropstraat 164, 1061 AE Amsterdam, the Netherlands
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