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

backgroundEffective 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.

methodsA 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.

resultsKM 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.

conclusionsInvolving 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.