title: Educating Parents About Pediatric Research: Children and Clinical Studies Website Qualitative Evaluation.
abstract: A gap in information about pediatric clinical trials exists, and parents remain uncertain about what is involved in research studies involving children. We aimed to understand parent perspectives about pediatric clinical research after viewing the online Children and Clinical Studies (CaCS) program. Using a qualitative descriptive study design, we conducted focus groups with parents and phone interviews with physicians. Three themes emerged providing approaches to improve parent's understanding of clinical research by including strategies where parents (a) hear from parents like themselves to learn about pediatric research, (b) receive general clinical research information to complement study-specific details, and (c) are provided more information about the role of healthy child volunteers. Parents found the website a valuable tool that would help them make a decision about what it means to participate in research. This tool can assist parents, providers, and researchers by connecting general information with study-specific information.
authors.affiliation: New England Research Institutes, Watertown, Massachusetts, USA LMarceau@neriscience.com.
authors.forename: Lisa D
authors.initials: LD
authors.lastname: Marceau
authors.affiliation: Tufts University, Boston, Massachusetts, USA.
authors.forename: Lisa C
authors.initials: LC
authors.lastname: Welch
authors.affiliation: National Institutes of Health, Bethesda, Maryland, USA.
authors.forename: Victoria L
authors.initials: VL
authors.lastname: Pemberton
authors.affiliation: National Institutes of Health, Bethesda, Maryland, USA.
authors.forename: Gail D
authors.initials: GD
authors.lastname: Pearson
mesh_terms: D002648:Child; D002986:Clinical Trials as Topic; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D020407:Internet; D010290:Parents; D010353:Patient Education as Topic; D036301:Qualitative Research; D012107:Research Design
keywords: New England region; children; education, patient; health information seeking; qualitative analysis; research, qualitative methods; technology, use in research