Parents' Experiences on Therapeutic Hypothermia for Neonates With Hypoxic-Ischemic Encephalopathy (HIE): A Single-Center Cross-Sectional Study.
Journal
Quality management in health care
ISSN: 1550-5154
Titre abrégé: Qual Manag Health Care
Pays: United States
ID NLM: 9306156
Informations de publication
Date de publication:
24 Jul 2023
24 Jul 2023
Historique:
medline:
24
7
2023
pubmed:
24
7
2023
entrez:
24
7
2023
Statut:
aheadofprint
Résumé
The purpose of the study is to assess parental experiences of therapeutic hypothermia for moderate to severe hypoxic-ischemic encephalopathy with the goal of improving local clinical practice guidelines and fostering family-integrated care in neonates with hypoxic-ischemic encephalopathy. This single-center retrospective cross-sectional study included neonates and their parents registered in the Swiss National Asphyxia and Cooling Register between 2011 and 2021. Based on a literature review, an anonymous survey of parents of neonates with hypoxic-ischemic encephalopathy was developed and conducted using an online survey tool. Descriptive statistics were used to analyze the survey results. The overall response rate to this survey was 64% (46/72). Sufficient information about hypoxic-ischemic encephalopathy was reported by 78% (36/46) of parents and sufficient information about the process of therapeutic hypothermia by 87% (40/46) of parents. The majority of parents indicated the need for, and at least a satisfactory perception of, professional (91%; 42/46) and emotional (87%; 40/46) support. Parents identified fostering family involvement and regular family communication that focuses on family integrated care as areas for improvement. There is still an unmet need for multidisciplinary teams to provide professional, empathetic, high quality, and family-integrated care to families with a neonate receiving therapeutic hypothermia for moderate or severe hypoxic-ischemic encephalopathy.
Sections du résumé
BACKGROUND AND OBJECTIVES
OBJECTIVE
The purpose of the study is to assess parental experiences of therapeutic hypothermia for moderate to severe hypoxic-ischemic encephalopathy with the goal of improving local clinical practice guidelines and fostering family-integrated care in neonates with hypoxic-ischemic encephalopathy.
METHODS
METHODS
This single-center retrospective cross-sectional study included neonates and their parents registered in the Swiss National Asphyxia and Cooling Register between 2011 and 2021. Based on a literature review, an anonymous survey of parents of neonates with hypoxic-ischemic encephalopathy was developed and conducted using an online survey tool. Descriptive statistics were used to analyze the survey results.
RESULTS
RESULTS
The overall response rate to this survey was 64% (46/72). Sufficient information about hypoxic-ischemic encephalopathy was reported by 78% (36/46) of parents and sufficient information about the process of therapeutic hypothermia by 87% (40/46) of parents. The majority of parents indicated the need for, and at least a satisfactory perception of, professional (91%; 42/46) and emotional (87%; 40/46) support. Parents identified fostering family involvement and regular family communication that focuses on family integrated care as areas for improvement.
CONCLUSIONS
CONCLUSIONS
There is still an unmet need for multidisciplinary teams to provide professional, empathetic, high quality, and family-integrated care to families with a neonate receiving therapeutic hypothermia for moderate or severe hypoxic-ischemic encephalopathy.
Identifiants
pubmed: 37482641
doi: 10.1097/QMH.0000000000000414
pii: 00019514-990000000-00050
doi:
Types de publication
Journal Article
Langues
eng
Informations de copyright
Copyright © 2023 The Authors. Published by Wolters Kluwer Health, Inc.
Déclaration de conflit d'intérêts
The authors declare no conflicts of interest.
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