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

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 baselin

SUBMITTER: Weiss EM 

PROVIDER: S-EPMC11399325 | biostudies-literature | 2024 Dec

REPOSITORIES: biostudies-literature