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

Abstract

Background: Engaging patients, families, caregivers, and the community (PFCCs) throughout the research cycle ensures that research is meaningful for the target population. Although tools have been developed to promote PFCC engagement, many are lengthy, complex, and lack recommended behaviours. This study evaluated the sensibility of an infographic and accompanying planning guide for facilitating engagement of PFCCs in research. Methods: Thirteen rehabilitation researchers reviewed the PFCC engagement tool and planning guide, participated in a semi-structured interview, and completed a 10-item sensibility questionnaire. Interviews were transcribed, imported into NVivo, 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. Participants reported the tool was easy to navigate, contained relevant items to promote PFCC engagement, and followed a logical sequence. Suggested modifications of the tool related to formatting, design, and changing the title. Conclusions: The tool was deemed sensible for overt format, purpose and framework, face and content validity, and ease of usage and provides guidance to engage PFCCs across the research cycle. Further studies are recommended to assess the effectiveness of the tool to engage PFCCs in research.