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Parents' views of involvement in concurrent research with their neonates

Frances Rieth Ward1

  • 1University of Medicine and Dentistry of New Jersey, NJMS-UH Cancer Center, 205 South Orange Ave., Room C-1243, Newark, NJ 07103, USA. wardf1@umdnj.edu

Journal of Empirical Research on Human Research Ethics : JERHRE
|June 24, 2010
PubMed

Insights

Parents of critically ill neonates found concurrent research interviews acceptable during infant clinical trial decisions. While acceptable for themselves, they perceived potential burdens for other parents, suggesting social comparison influences perceptions.

Area of Science:

  • Bioethics
  • Neonatal Research
  • Clinical Trials

Background:

  • Understanding parental decision-making in neonatal clinical trials is crucial for researchers and bioethicists.
  • Parents' emotional states during these decisions warrant further investigation.

Purpose of the Study:

  • To assess the perceived burden of concurrent research interviews on parents deciding on neonatal clinical trial enrollment.
  • To explore parents' views on the acceptability and value of such research.

Main Methods:

  • Qualitative descriptive study involving 27 parents of critically ill neonates.
  • Interviews were conducted, audio-recorded, transcribed, and analyzed using content analysis.

Main Results:

  • Parents generally found concurrent research interviews acceptable for themselves.
  • Participants also indicated that such research might be perceived as problematic by others.
  • Risk preference and social comparison theories may help explain these parental perceptions.

Conclusions:

  • Concurrent research interviews during neonatal clinical trial decision-making are perceived as acceptable by some parents.
  • Parental perceptions of research burden may be influenced by social comparison and risk preferences.
  • Further research is needed to fully understand the nuances of parental experiences in clinical trial participation.

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