Patient, Family, Caregiver, and Community Engagement in Research: A Sensibility Evaluation of a Novel Infographic and Planning Guide

Abstract Background: Engaging patients, their families, caregivers and the community (PFCCs) throughout the research cycle provides many benefits of ensuring that research is meaningful for the population it is meant to benefit. Several engagement tools, guidelines, and recommendations have been developed to guide researchers in engaging PFCCs. However, many of these tools are lengthy, complex, and lack the recommended behaviours to facilitate engagement of PFCCs in research. An infographic and planning guide was developed as part of a family engagement in research course including families and researchers in order to facilitate engagement of PFCCs in research. The aim of this study was to evaluate the sensibility of this infographic and accompanying planning. Methods: Thirteen rehabilitation researchers reviewed the PFCC engagement tool, participated in a semi-structured interview, and completed a 10-item sensibility questionnaire. Interviews were transcribed, imported into NVivo Plus, and analyzed using direct content analysis. Median scores and proportions of responses for each of the 10 items in the questionnaire were calculated. Results: Median scores for all questionnaire items were ≥ 4 on a 7-point Likert Scale and none of the items’ median scores were ≤ 3. Participants reported the tool was easy to navigate, contained relevant items to promote PFCC engagement, and followed a logical sequence. Participants’ suggestions for modifications included reformatting the tool, redesigning the infographic redesign, and changing the title. Conclusions: The tool was deemed sensible for overt format, purpose and framework, face and content validity, and ease of usage. The tool is useful for researchers who require guidance to engage PFCCs across the research cycle. Further studies are recommended to assess the effectiveness of the tool to engage PFCCs in research.