Factors Promoting or Preventing Caregivers from Allowing Pediatric Participation in Research

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Abstract
Introduction The likelihood of a child participating in a clinical trial is mostly independent of the child’s willingness to participate; children’s lack of autonomy obliges parental involvement, which is concurrently conditional to parental understanding, trust and endorsement of the research study. Objectives To identify potential predictors for allowing children to participate in clinical studies and to evaluate if motivators that promote or prevent parental support of children to participate in clinical studies differed according to racial/ethnic categorization. Methods A stratified sample of 1,057 caregivers of children 1-18 years old who in 2015 resided in South Florida’s Miami-Dade, Broward, and Palm Beach counties were included in the study. Pediatric research participation was analyzed by exploratory unadjusted weighted multinomial association tests. Results There were different reasons for which caregivers will allow or reject children participation in clinical research. The sex of the respondent [OR = 2.48 (1.58 - 3.90)], difficulties accessing health care access [OR = 2.77 (1.60 – 4.80)], and child’s underweight status [OR: 3.22 (1.90 – 5.47)] significantly differed between those very likely and unlikely to participate. Conclusions Caregivers decision to allow children to participate or not in clinical research differ according to race/ethnic classification, gender of caregivers, and weight status of the child.

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