Deferred consent for delivery room studies: the providers' perspective.


Journal

Archives of disease in childhood. Fetal and neonatal edition
ISSN: 1468-2052
Titre abrégé: Arch Dis Child Fetal Neonatal Ed
Pays: England
ID NLM: 9501297

Informations de publication

Date de publication:
May 2020
Historique:
received: 22 03 2019
revised: 22 07 2019
accepted: 03 08 2019
pubmed: 21 8 2019
medline: 6 5 2020
entrez: 21 8 2019
Statut: ppublish

Résumé

To gain insight into neonatal care providers' perceptions of deferred consent for delivery room (DR) studies in actual scenarios. We conducted semistructured interviews with 46 neonatal intensive care unit (NICU) staff members of the Leiden University Medical Center (the Netherlands) and the Hospital of the University of Pennsylvania (USA). At the time interviews were conducted, both NICUs conducted the same DR studies, but differed in their consent approaches. Interviews were audio-recorded, transcribed and analysed using the qualitative data analysis software Atlas.ti V.7.0. Although providers reported to regard the prospective consent approach as the most preferable consent approach, they acknowledged that a deferred consent approach is needed for high-quality DR management. However, providers reported concerns about parental autonomy, approaching parents for consent and ethical review of study protocols that include a deferred consent approach. Providers furthermore differed in perceived appropriateness of a deferred consent approach for the studies that were being conducted at their NICUs. Providers with first-hand experience with deferred consent reported positive experiences that they attributed to appropriate communication and timing of approaching parents for consent. Insight into providers' perceptions of deferred consent for DR studies in actual scenarios suggests that a deferred consent approach is considered acceptable, but that actual usage of the approach for DR studies can be improved on.

Identifiants

pubmed: 31427459
pii: archdischild-2019-317280
doi: 10.1136/archdischild-2019-317280
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

310-315

Informations de copyright

© Author(s) (or their employer(s)) 2020. No commercial re-use. See rights and permissions. Published by BMJ.

Déclaration de conflit d'intérêts

Competing interests: None declared.

Auteurs

Maria C den Boer (MC)

Division of Neonatology, Leiden University Medical Center, Leiden, Netherlands m.c.den_boer@lumc.nl.
Department of Medical Ethics and Health Law, Leiden University Medical Center, Leiden, Netherlands.

Mirjam Houtlosser (M)

Department of Medical Ethics and Health Law, Leiden University Medical Center, Leiden, Netherlands.

Elizabeth E Foglia (EE)

Division of Neonatology, Department of Pediatrics, University of Pennsylvania School of Medicine, Philadelphia, Pennsylvania, USA.

Enrico Lopriore (E)

Division of Neonatology, Leiden University Medical Center, Leiden, Netherlands.

Martine Charlotte de Vries (MC)

Department of Medical Ethics and Health Law, Leiden University Medical Center, Leiden, Netherlands.
Pediatrics, Leiden University Medical Center, Leiden, The Netherlands.

Dirk P Engberts (DP)

Department of Medical Ethics and Health Law, Leiden University Medical Center, Leiden, Netherlands.

Arjan B Te Pas (AB)

Division of Neonatology, Leiden University Medical Center, Leiden, Netherlands.

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