Accepted for/Published in: JMIR Pediatrics and Parenting
Date Submitted: Jul 27, 2021
Date Accepted: Dec 8, 2021
Understanding Information Needs and Barriers to Accessing Health Information Across All Stages of Pregnancy: A Systematic Review
ABSTRACT
Background:
Understanding consumers’ health information needs across all stages of the pregnancy trajectory is crucial to the development of mechanisms that allow them to retrieve high-quality, customized, and layperson-friendly health information.
Objective:
The objective of this study is to identify research gaps in pregnancy-related consumer information needs, and available information from different sources.
Methods:
We conducted a systematic review using CINAHL, Cochrane, PubMed, and Web of Science for relevant articles that were published between 2009 and 2019. The quality of all the included articles was assessed using the Critical Appraisal Skills Programme (CASP). A descriptive data analysis was performed on these articles. Based on the review result, we developed the Pregnancy Information Needs Ontology (PINO) and made it publicly available in GitHub.
Results:
Thirty-three articles from nine countries met the inclusion criteria for this review, of which the majority were published no earlier than 2016. Most studies were either descriptive (27.3%), interviews (21.2%), or surveys/questionnaires (21.2%). Twenty articles mentioned consumers’ pregnancy-related information needs. Half of the human-subject studies were conducted in the United States. More than a third (39.4%) of all the studies focused on during-pregnancy stage, yet only one study (3%) was about all stages of pregnancy. The most frequent consumer information needs were related to labor delivery (n=9), medication in pregnancy (n=8), newborn care (n=5), and tests (n=6). The most frequently available source of information was the Internet (62.5%). The Pregnancy Information Needs Ontology (PINO) consists of 267 classes, 555 axioms, and 271 subclass relationships.
Conclusions:
Only a few articles assessed the barriers of access to pregnancy-related information and the quality of each source of information, further work is needed. Future work is also needed to address the gaps between the information needed and the information available.
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