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

Abstract

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.

Bringing Parent Voices into a Pediatric Research Network Through a Virtual Parent Panel

“…However, as we know from previous research, many parents across the socioeconomic status spectrum are motivated to participate in research for similar reasons, most commonly altruistic reasons. 21 As stated above, we will actively try to engage parents of various backgrounds moving forward to ensure parent voices from minority groups are also represented. Another barrier to forming our virtual Parent Panel was that due to our anonymous survey, it was not feasible to collect information from parents who completed our vaccine survey but were not interested in learning more about or participating in our Parent Panel.…”

Practice-Based Research Today: A Changing Primary Care Landscape Requires Changes in Practice-Based Research Network (PBRN) Research

“…This issue of JABFM contains 5 articles describing processes and outcomes of connecting with stakeholders. [5][6][7][8][9] The importance of building, maintaining, and, when needed, re-establishing relationships with those for who we exist-physicians, providers, office staff, patients, and in today's health care landscape, health systems, insurance companies, and government agencies, cannot be overemphasized. Luckily, this is something many PBRNs do well-As Rhyne and Fagnan 10 noted last year, "PBRNs are experts in long-term engagement strategies, relationships, and collaboration."…”

“…Two pediatric PBRNs, Colorado Children's Outcomes Network (CocoNet) in Colorado and PittNet in Pennsylvania both report on obtaining direct patient and parent input. 7,8 Using focus groups, interviews, and/or surveys, these PBRNs developed a better understanding of research topics and reasons for participating in research from a patient and parent perspective. The Southeast Regional Clinicians Network (SERCN) describes reenergizing a PBRN after a period of inactivity and a change in leadership.…”

“…Patient-Centered Outcomes Research Institute Engagement Awards funded 2 of these projects, 7,9 and 1 received funding through a Clinical and Translational Science Award. 8 These awards allowed significant one-time engagement efforts, but cannot sustain "long-term engagement strategies." SNOCAP describes 2 impressive ongoing, multiyear processes for long-term partnerships, but they do not describe how they funded the advisory boards, conferences, and meetings.…”

Characteristics of Clinical Trial Participants with Duchenne Muscular Dystrophy: Data from the Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet)

“…Participation in therapeutic clinical trials is often taxing on families, typically requiring missed days from work and school, travel, and long days of evaluation; thus, participation may be skewed towards those with more resources [10][11][12][13]. Further, the willingness to participate in or have access to clinical trials varies by race/ethnicity, socioeconomic status, and geographic location [14][15][16][17][18].…”