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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.
Insights
Parents need information on participation in care, emotional wellbeing, success stories, and practicalities of very preterm birth. Current resources partially meet these needs, highlighting a gap in parental support.
Area of Science:
- Neonatal care
- Parental support
- Health communication
Background:
- Impending very preterm birth presents significant challenges for parents.
- Existing information provision may not fully align with parental needs.
- Understanding parental information requirements is crucial for effective support.
Purpose of the Study:
- To identify the information needs of parents facing impending very preterm birth.
- To compare these needs with current information practices in the Netherlands.
- To inform the development of a tailored parental information platform.
Main Methods:
- Surveyed 203 parents of preterm infants to assess information needs using inductive thematic analysis.
- Analyzed hospital (9 NICUs) and online information resources using deductive thematic analysis.
- Compared identified parental needs with available information resources.
Main Results:
- Parents seek information on participation in care, emotional wellbeing, success stories, and practical aspects of prematurity.
- Clinicians' communication skills and time are vital for optimal information delivery.
- Hospital resources primarily offer medical information, while parent associations focus on emotional support and experiences.
Conclusions:
- Parents have distinct information needs regarding very preterm birth.
- Current information resources partially fulfill these identified needs.
- There is a need for improved and tailored information provision for parents of preterm infants.
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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