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Abstract
Objectives Extremely preterm children may have a prolonged neonatal intensive care unit (NICU) stay. Their parents interact with clinicians both before and after birth. There is little information about parental satisfaction with the information received and what they would want to improve. The objective of this study was to explore parental perspectives regarding their information needs.
Methods Over 1 year, parents of children born at <29 weeks’ gestational age (GA), who were aged between 18 months and 7 years old and came for their follow-up visit were invited to participate. They were asked to answer this question in their own words: “Knowing what you know now, what do you wish doctors would have told you about prematurity before and/or after your child’s birth?” Mixed method analysis included thematic analysis performed by a multidisciplinary group, including parents, and logistic regression to compare parental responses.
Results Among parents (n=248, 98% of parents coming to follow-up), 45% were satisfied. When parents had recommendations, the main themes invoked improving communication about (1) preparing for discharge and life after the NICU in a stepwise, personalised and practical manner (40%), (2) more practical and functional information about being a parent in the NICU during the whole clinical trajectory (35%) and (3) more optimistic conversations with clinicians about the function of babies/families (as opposed to diagnoses) (26%).
Conclusion Although half the parents are satisfied with the information received, many recommended improvements in clinician–parent communication, mainly to make it more accessible, personalised, positive and practical.
- Intensive Care Units, Neonatal
- Ethics
- Follow-Up Studies
- Neonatology
- Child Development
Data availability statement
Data are available upon reasonable request.
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Data availability statement
Data are available upon reasonable request.
Footnotes
X @neonatalresearc
Contributors All authors have had a substantial contribution in: (a) conception and design, acquisition of data or analysis and interpretation of data; AND (b) Drafting the article or revising it critically for important intellectual content; AND (c) Final approval of the version to be published; AND (d) Agreement to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. These are the individual contribution of each author: ET participated in acquiring data (interviews), analysis and interpretation of data (thematic analysis), revised the article for critically important intellectual content, approved the final version of the article and agrees to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. TML contributed to the conception and design, obtained funding, acquired data, participated in the analysis and interpretation of data (thematic analysis and statistical analysis), revised the article for critically important intellectual content, approved the final version of the article and agrees to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. CJB contributed to the conception and design, obtained funding, participated in acquiring data (interviews), analysis and interpretation of data (thematic analysis), revised the article for critically important intellectual content, approved the final version of the article and agrees to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. RP contributed to the conception and design, analysis and interpretation of data (thematic analysis), revised the article for critically important intellectual content, approved the final version of the article and agrees to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. MJ participated in acquiring data (interviews), analysis and interpretation of data (thematic analysis), revised the article for critically important intellectual content, approved the final version of the article and agrees to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. KJB participated in analysis and interpretation of data (quantitative, statistical), drafted the first version of the article with AJ, revised the article for critically important intellectual content, approved the final version of the article and agrees to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. L-AD participated in acquiring data (interviews), analysis and interpretation of data (thematic analysis), revised the article for critically important intellectual content, approved the final version of the article and agrees to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. AJ contributed to the conception and design, obtained funding, participated in the analysis and interpretation of data (thematic analysis), drafted the article and revised it for critically important intellectual content, approved the final version of the article and agrees to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. AJ is the guarantor of the article and accepts full responsibility for the finished work and/or the conduct of the study, had access to the data, and controlled the decision to publish. All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.
Funding This study was funded by the CHILD-BRIGHT Network, with funding from the Canadian Institutes of Health Research (CIHR) under the Strategy for Patient-Oriented Research (SPOR) grant number SCA-145104. AJ and TML received salary support from the Fonds de Recherche en Santé du Québec. The other authors received no additional funding.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.
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