Valuing All Voices: refining a trauma-informed, intersectional and critical reflexive framework for patient engagement in health research using a qualitative descriptive approach

• Published in: Research Involvement and Engagement
• Main Authors: Roche, P., Shimmin, C., Hickes, S., Khan, M., Sherzoi, O., Wicklund, E., Lavoie, J. G., Hardie, S., Wittmeier, K. D. M., Sibley, K. M.
• Format: Text
• Language: English
• Published: BioMed Central 2020
• Subjects: Research Article; Newcomer; inuit
• Online Access: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7370500/; http://www.ncbi.nlm.nih.gov/pubmed/32699647; https://doi.org/10.1186/s40900-020-00217-2

BACKGROUND: Critical stakeholder-identified gaps in current health research engagement strategies include the exclusion of voices traditionally less heard and a lack of consideration for the role of trauma in lived experience. Previous work has advocated for a trauma-informed, intersectional, and critical reflexive approach to patient and public involvement in health research. The Valuing All Voices Framework embodies these theoretical concepts through four key components: trust, self-awareness, empathy, and relationship building. The goal of this framework is to provide the context for research teams to conduct patient engagement through the use of a social justice and health equity lens, to improve safety and inclusivity in health research. The aim of this study was to revise the proposed Valuing All Voices Framework with members of groups whose voices are traditionally less heard in health research. METHODS: A qualitative descriptive approach was used to conduct a thematic analysis of participant input on the proposed framework. Methods were co-developed with a patient co-researcher and community organizations. RESULTS: Group and individual interviews were held with 18 participants identifying as Inuit; refugee, immigrant, and/or newcomer; and/or as a person with lived experience of a mental health condition. Participants supported the proposed framework and underlying theory. Participant definitions of framework components included characterizations, behaviours, feelings, motivations, and ways to put components into action during engagement. Emphasis was placed on the need for a holistic approach to engagement; focusing on open and honest communication; building trusting relationships that extend beyond the research process; and capacity development for both researchers and patient partners. Participants suggested changes that incorporated some of their definitions; simplified and contextualized proposed component definitions; added a component of “education and communication”; and added a ‘how to’ section ...