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What Factors Are Important to Parents Making Decisions About Neonatal Research?

Overview
Journal Arch Dis Child Fetal Neonatal Ed
Specialties Gynecology & Obstetrics
Pediatrics
Date 2005 Apr 23
PMID 15846021
Citations 21
Authors
K S Hoehn
G Wernovsky
J Rychik
J W Gaynor
T L Spray
C Feudtner
R M Nelson
Affiliations
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Abstract

Background: Although parents of neonates with congenital heart disease are often asked permission for their neonates to participate in research studies, little is known about the factors parents consider when making these decisions.

Objective: To determine the reasons for parents' decisions about participation in research studies.

Methods: Qualitative analysis of the unsolicited comments of 34 parents regarding reasons for agreeing or declining to participate in research studies. Parents' comments were offered spontaneously during interviews about clinical care decisions for neonates with congenital heart disease.

Results: Parents cited five types of reason for or against permitting their newborn to participate in research studies: societal benefit (n = 18), individual benefit for their infant (n = 16), risk of study participation (n = 10), perception that participation posed no harm (n = 9), and anti-experimentation views (n = 4).

Conclusion: Addressing parental decision making in the light of these reasons could enhance the parental permission process for parents of critically ill neonates.

Citing Articles

Parental Views of Facilitators and Barriers to Research Participation: Systematic Review.

Nathe J, Oskoui T, Weiss E Pediatrics. 2022; 151(1).

PMID: 36477217 PMC: 9808610. DOI: 10.1542/peds.2022-058067.

Parental Attitudes toward Consent for Music Intervention Studies in Preterm Infants: A Cross-Sectional Study.

Bauer S, Epstein S, Bieleninik L, Yakobson D, Elefant C, Arnon S Int J Environ Res Public Health. 2021; 18(15).

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Informed consent rates for neonatal randomized controlled trials in low- and lower middle-income versus high-income countries: A systematic review.

Patterson J, Pant S, Jones D, Taha S, Jones M, Bauserman M PLoS One. 2021; 16(3):e0248263.

PMID: 33690703 PMC: 7943024. DOI: 10.1371/journal.pone.0248263.

Understanding parents' decision-making on participation in clinical trials in children's heart surgery: a qualitative study.

Drury N, Menzies J, Taylor C, Jones T, Lavis A BMJ Open. 2021; 11(2):e044896.

PMID: 33622954 PMC: 7907877. DOI: 10.1136/bmjopen-2020-044896.

Two speeds of increasing milk feeds for very preterm or very low-birthweight infants: the SIFT RCT.

Dorling J, Hewer O, Hurd M, Bari V, Bosiak B, Bowler U Health Technol Assess. 2020; 24(18):1-94.

PMID: 32342857 PMC: 7212304. DOI: 10.3310/hta24180.

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