Motivations for and against Participation in Neonatal Research: Insights from Interviews of Diverse Parents Approached for Neonatal Research in the United States

Authors

• Elliott Mark Weiss
• Pamela K Donohue
• Susan H Wootton
• Emily Stevens
• Stephanie L Merhar
• Mihai Puia-Dumitrescu
• Amanda Mercer
• Ellie Oslin
• Kathryn M Porter
• Benjamin S Wilfond

Language

English

Publication Date

12-1-2024

Journal

The Journal of Pediatrics

DOI

10.1016/j.jpeds.2024.113923

PMID

38492913

PMCID

PMC11399325

PubMedCentral® Posted Date

12-1-2025

PubMedCentral® Full Text Version

Author MSS

Abstract

Objective: To describe parents' motivations for and against participation in neonatal research, including the views of those who declined participation.

Study design: We performed 44 semi-structured, qualitative interviews of parents approached for neonatal research. Here we describe their motivations for and against participation.

Results: Altruism was an important reason parents chose to participate. Some hoped participation in research would benefit their infant. Burdens of participation to the family, such as transportation to follow up (distinct from risks/burdens to the infant), were often deciding factors among those who declined participation. Perceived risks to the infant were reasons against participation, but parents often did not differentiate between baseline risks and incremental risk of study participation. Concerns regarding their infant being treated like a "guinea pig" were common among those who declined. Finally, historical abuses and institutional racism were reported as important concerns by some research decliners from minoritized populations.

Conclusions: Within a diverse sample of parents approached to enroll their infant in neonatal research, motivations for and against participation emerged, which may be targets of future interventions. These motivations included reasons for participation which we may hope to encourage, such as altruism. They also included reasons against participation, which we may hope to, as feasible, eliminate, mitigate, or at least acknowledge. These findings can help clinical trialists, regulators, and funders attempting to improve neonatal research recruitment processes.

Keywords

Humans, Motivation, Parents, Female, United States, Male, Infant, Newborn, Adult, Altruism, Biomedical Research, Interviews as Topic

Published Open-Access

yes

Recommended Citation

Weiss, Elliott Mark; Donohue, Pamela K; Wootton, Susan H; et al., "Motivations for and against Participation in Neonatal Research: Insights from Interviews of Diverse Parents Approached for Neonatal Research in the United States" (2024). Faculty, Staff and Student Publications. 4286.
https://digitalcommons.library.tmc.edu/uthmed_docs/4286