Development and evaluation of a parent advisory group to inform a research program for knowledge translation in child health

Abstract

Plain English summary In 2016 we developed a parent advisory group to inform our research program in knowledge translation (i.e., sharing research in accessible ways to inform decision-making) for child health. The group provides input from a parent perspective. We conducted an online baseline survey of parent members and a follow-up online survey 16 months after the group had started. The surveys helped us understand reasons for parents’ participation, what they thought was working well with the group, and areas for improvement. Parents valued the opportunity to provide constructive feedback on research processes and outputs. They felt the meetings were well-organized and the group was open and welcoming. Parents felt that regular and ongoing communication with the researchers was critical for meaningful engagement. To this end, funding to support a dedicated coordinator was considered essential. Parents appreciated that the researchers organized the group around parents’ needs in terms of timing of meetings (evenings) and reimbursement for expenses to attend meetings (travel, childcare). Parents considered this type of group to be unique, particularly as it supports a research program over the long-term rather than for specific projects, and because of the relative maturity in terms of clearly defining group purpose, structure, and engagement approach. The ongoing involvement allows for benefits in terms of building relationships, providing many and varied opportunities to interact, and allowing parents to see how their input is implemented. Finally, an evaluation mechanism with communication of results and a commitment to implement findings is considered critical. Our parent advisory group can provide a model for other researchers or research organizations.

Keywords

• Parents
• Advisory group
• Patient engagement
• Patient-oriented research
• Child health
• Knowledge translation