PT  - JOURNAL ARTICLE
AU  - Engster, Stacey A.
AU  - Fascetti, Carrie
AU  - Daw, Kristine
AU  - Cohen Reis, Evelyn
TI  - Parent Perceptions of and Preferences for Participation in Child Health Research: Results from a Pediatric Practice-Based Research Network
AID  - 10.3122/jabfm.2019.05.190030
DP  - 2019 Sep 01
TA  - The Journal of the American Board of Family
                Medicine
PG  - 685--694
VI  - 32
IP  - 5
4099  - http://www.jabfm.org/content/32/5/685.short
4100  - http://www.jabfm.org/content/32/5/685.full
SO  - J Am Board Fam Med2019 Sep 01; 32
AB  - 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.