Background: In 2016, we developed a pediatric parent advisory group to inform our research program which creates innovative knowledge translation (KT) tools for parents on priority topics related to acute childhood illness. We implemented a mixed methods strategy to evaluate the experiences of group members. The purpose of this paper is to present the findings from parent evaluations over four years and to discuss our experiences collaborating with the group over a multi-year period.
Methods: We conducted year-end surveys and interviews of group members to understand parents' perceptions of their experiences, group management, researcher interaction, and other outcomes of advisory group participation from 2018 to 2021. We applied a mixed methods approach, collecting and analyzing both quantitative (survey) and qualitative (survey/interview) data. Survey data were analyzed by term using descriptive statistics (i.e., frequencies, percentages). Open-ended survey responses were analyzed by conventional content analysis. Interview data were analysed thematically.
Results: Year-end survey response rates and interview participation varied over the years. Responses to evaluation questions were generally positive and most improved over time. Results prompted changes to improve P-PAG operations, such as changes to location of meetings, communications about the group's purpose, offering sufficient context for discussion items, and providing feedback about how members' input was used. Themes identified from the qualitative data related to the importance of certain aspects of group functioning, positive views of the group's current management, and potential areas for improvement. Parents regularly expressed a desire for more diversity in the group's membership and an interest in hearing more about how the research program's activities fit into the broader healthcare system and their impacts on health outcomes.
Conclusions: Our experience in establishing, managing, and evaluating a parent advisory group over many years has resulted in valuable insights regarding patient engagement in health research and sustaining an advisory group over time. We have learned that an intentional and iterative approach with regular evaluations and responsive changes has been essential for fostering meaningful engagement. Significant resources are required to maintain the group; in turn, the group has made substantial and diverse contributions to the research program and its outputs.
Keywords: Advisory group; Child health; Evaluation; Knowledge mobilization; Knowledge translation; Parents; Patient engagement; Patient-oriented research.
We developed a parent advisory group in 2016 to support our research program in knowledge translation (KT, i.e., sharing research in accessible ways to inform decision-making) for child health. The purpose of the group is to involve parents in co-developing, evaluating, and sharing KT tools (e.g., videos, infographics). The group has also worked with researchers to inform methods and provide input on research projects and products. The group has been running for seven years and has involved different types of evaluations, including parent surveys and interviews. Parents had generally positive views of their experience with the group (including the group’s management, interactions with researchers, etc.) and their responses mostly improved over the years. Based on parents’ feedback, we made changes to improve the group’s operations, such as changing the frequency and location of meetings, regular communications about the group’s purpose, offering more context and time for individual discussion items, and providing feedback to parents about how their input was used. Parents regularly expressed a desire for more diversity in the group’s membership. They also expressed an interest in hearing more about how the research program fit into the broader healthcare system and impacts on health outcomes. We have learned that it takes a large amount of time, effort, and funding to run the group; however, the parent contributions have been valuable and wide-reaching. We feel that the evaluations and responsive changes to the group over time have been essential to sustain and foster meaningful engagement and achieve the group’s objectives.
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