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

Abstract

Recruitment efforts for child health research are often based on assumptions, therefore improving knowledge about parents' perceptions and preferences could enhance engagement. 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. 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. 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. Child health researchers could enhance participation by using recruitment resources and enrollment strategies that match parent preferences, including engagement by on-site PBRN staff.