Evaluating parent-led research: the power of partnership and arts-based knowledge mobilization

Abstract

Background: Effective knowledge mobilization (KM) and meaningful partnerships can improve research relevance, quality, and impact. While guidance for effective KM tool development and successful research partnerships exists, practices are not consistently described or evaluated. To address this gap, we applied a mixed-methods approach to (i) describe and evaluate a set of tailored KM tools and (ii) assess parent-partnership, within a study on caregiver recruitment networks. Methods: A custom survey, distributed to participants of the primary study, was used to evaluate KM tools. The Public and Patient Engagement Evaluation Tool 2.0© survey, and a facilitated discussion, was used to evaluate research partnership. Evaluations were conducted in year two of the two-year project. Quantitative data were analyzed descriptively. Qualitative feedback underwent directed content analysis followed by inductive analysis. Data were integrated during analysis and interpretation. Results: KM tool evaluation: Participants reported that their views were adequately reflected in each KM tool, and they were likely to recommend the tools to others. Important messaging, clarity, and visual appeal were noted as positive features across tools. The lay summary and tip sheets were concise, easy to read, yet still full of information. The painting series was described as engaging and emotionally evocative, prompting reflection on one’s personal experience and drawing out feelings of “hope, partnership, and a journey”. Participants provided tangible feedback on missed messages in the KM tools, or where additional emphasis or clarification was needed to support accuracy. Partnership evaluation: All team members were satisfied with their involvement. Data within the category of “What went well” highlighted knowledge gained, and personal and team-level qualities (humility, balance, honesty, positivity). The category of “What could be improved” drew attention to systemic barriers to sustained partnership (time, finances, and logistics), and lack of diversity within the team. Conclusions: Involving primary participants in KM tool evaluation ensured message accuracy and highlighted the unique power of arts-based KM to evoke emotional resonance. Future research should consider integrating arts-based methods to complement traditional KM tools to enhance engagement with research findings. High partner satisfaction suggests that strong relational foundations can mitigate common logistical pitfalls in research partnerships.

Plain English summary: Parent-partnership in research, and the need for tools to share research findings, are recognized as important parts of conducting meaningful and impactful research. In a previous study our team, which includes parent partners and researchers, explored the experiences of parent partners who have been asked to use their personal networks to help recruit for research. Based on what we learned from the parent partner participants, we then created tools to share these insights with more people. These tools included a plain language summary, tip sheets for both researchers and for parent partners, and three paintings with write-ups that linked to the three themes uncovered in the study. We then developed a study to evaluate (i) what participants thought of each of the knowledge sharing tools, and (ii) how our team of researchers and parent partners worked together. These evaluations are the focus of the current paper. The feedback that participants provided on the knowledge sharing tools indicated that the lay summary and tip sheets were concise, easy to read, yet still full of information. The painting series was described as engaging, encouraging reflection, and evoking feelings of “hope, partnership, and a journey”. Participants provided feedback on key messages that were missed in the tools as well as where additional emphasis and clarification was needed. This feedback helped us correct and improve these information sharing methods before we released them to the public. We discovered that all research team members were satisfied with their involvement in the collaboration. Our team found that having humility, balance, honesty, and positivity went well when working together. Areas for improvement included time, finances (e.g., compensation), and logistics (e.g., role clarity, decision making). When research teams conduct evaluations on knowledge sharing and partnerships, the team can improve their research outputs and teamwork. We share our findings to encourage other teams to build evaluations into their projects, with the goal of enhancing partnerships and research impact.