Parent Perceptions of and Preferences for Participation in Child Health Research: Results from a Pediatric Practice-Based Research Network.

BACKGROUND: Recruitment efforts for child health research are often based on assumptions, therefore improving knowledge about parents' perceptions and preferences could enhance engagement. AIM/
OBJECTIVE: 1) 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.
METHODS: We 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.
RESULTS: Parents (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.
CONCLUSIONS: Child health researchers could enhance participation by using recruitment resources and enrollment strategies that match parent preferences, including engagement by on-site PBRN staff. © Copyright 2019 by the American Board of Family Medicine.