ArticleJournal of the American Board of Family Medicine : JABFM
Parent Perceptions of and Preferences for Participation in Child Health Research: Results from a Pediatric Practice-Based Research Network.
Article in Journal of the American Board of Family Medicine : JABFM. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
What it found
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
6 citing papers in PubMed.
- Cardiometabolic characteristics of school-aged children born preterm with very low birth weight.Pediatric research · 2026Observational
- Urban-Suburban Differences in Public Perspectives on Digitalizing Pediatric Research: Cross-Sectional Survey Study.Journal of medical Internet research · 2025Article
- Reasons for participation in a child development study: Are cases with developmental diagnoses different from controls?Paediatric and perinatal epidemiology · 2022Article
- Cross-sectional survey of parental barriers to participation in pediatric participant research registries.PloS one · 2022Article
- Characteristics of Clinical Trial Participants with Duchenne Muscular Dystrophy: Data from the Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARChildren (Basel, Switzerland) · 2021Article
- Bringing Parent Voices into a Pediatric Research Network Through a Virtual Parent Panel.Journal of the American Board of Family Medicine : JABFMArticle
Corrections and comments
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Authors and funding
4 authors.
Funding
Abstract
backgroundRecruitment efforts for child health research are often based on assumptions, therefore improving knowledge about parents' perceptions and preferences could enhance engagement. AIM/
objective1) To describe parents' perceptions about and preferences for participation in child health research within a pediatric practice-based research network (PBRN), and 2) to investigate any associations with the presence of on-site PBRN research staff, office location, and child age.
methodsWe conducted a 2-phase study with a convenience sample of parents from diverse office settings. Phase 1 was a qualitative assessment using semistructured, in-person interviews. Phase 2 consisted of a quantitative self-administered survey assessing: 1) perceptions of importance, benefits/motivations, and risks/barriers of child health research, and 2) preferences for recruitment method and enrollment location.
resultsParents (n = 627) uniformly perceived child health research to be important in prevention (89%), diagnosis (89%), and treatment (92%). They were motivated to participate most commonly by altruism and rarely by compensation. Parents perceived side effects (60%), discomfort (52%), and time (45%) as the main risks of participation. Most parents preferred to learn about research opportunities at their pediatric office (70%), and if interested, to enroll their child in their pediatric office (57%) or in their home (52%). Parents were significantly more altruistic and interested in participation in offices with on-site PBRN research staff and greater proximity to the University.
conclusionsChild health researchers could enhance participation by using recruitment resources and enrollment strategies that match parent preferences, including engagement by on-site PBRN staff.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.