Burden or Opportunity? Parent Experiences When Approached for Research in a Pediatric Intensive Care Unit

Area of Science:

• Pediatric Critical Care Medicine
• Clinical Research Ethics
• Health Services Research

Background:

• Low enrollment in pediatric research, especially in critical care settings, hinders study completion.
• Understanding parental experiences and perceptions is crucial for improving pediatric research participation.

Purpose of the Study:

• To assess parental experiences and attitudes toward research participation in a pediatric intensive care unit (PICU).
• To identify motivators and barriers to research enrollment among parents of critically ill children.
• To examine potential disparities in research approach based on ethnicity.

Main Methods:

• Prospective cross-sectional survey and chart review conducted in a PICU setting.
• Survey administered to 80 parents of children admitted to the PICU.
• Data collected on parental approach rates, consent, motivators, barriers, and demographics.

Main Results:

• 54% of parents were approached for research, with 93% agreeing to participate.
• Primary motivators: altruism, low burden, low risk, and potential child benefit.
• Key barriers: perceived risk, child's critical condition, feeling overwhelmed, time constraints, and poor explanation of research.
• Hispanic parents reported being approached for research less frequently than non-Hispanic parents.

Conclusions:

• Parents in the PICU generally have positive attitudes toward research participation.
• Addressing barriers related to risk perception and clear communication is essential.
• Proactive tracking of recruitment processes is necessary to ensure equitable inclusion of minority populations in pediatric critical care research.