Encouraging diversity in family engagement in research: Reflections on the development of knowledge translation tools

Research Involvement and Engagement

Commentary

Janet W. T. Mah¹  Katie Nickerson² 

[1] BC Children’s Hospital, University of British Columbia, 4500 Oak Street, V6H 3N1, Vancouver, BC, Canada;Strongest Families Institute, 267 Cobequid Road, Suite 200, B4C 4E6, Lower Sackville, NS, Canada;

关键词: Family engagement;    Diversity;    Partnerships;    Patient-oriented research;   

DOI  :  10.1186/s40900-023-00486-7

 received in 2023-06-12, accepted in 2023-08-14,  发布年份 2023

来源: Springer

【 摘 要 】

BackgroundFamily engagement in research is crucial to generating relevant, impactful, and meaningful priorities and outcomes. Although there has been increased awareness and value for patient-oriented research, most patient partners in North America are from Western, educated, industrialized, rich and democratic societies. Encouraging underserviced and marginalized populations to join the partnerships is important. This project demonstrates the development of two knowledge translation tools created to encourage diversity in patient-family and researcher partnerships.Case studyOur diverse cross-Canadian team embodies the family-researcher partnership as it consists of two research personnel from non-Western origins with immigrant experiences, a parent with lived experience, and a project director. All group members have experience in the field of mental health and neurodevelopmental conditions. Four infographics were created: 3 patient-oriented ones (in English, Chinese, and Farsi) and 1 researcher-targeted one. Content for the infographics were generated to address common barriers to patient engagement identified from literature reviews, as well as key concepts discussed during the McMaster University Continuing Education Family Engagement in Research Certificate Course sponsored by CanChild & Kids Brain Health Network. Peer consultations helped to improve the infographics to be more culturally sensitive and appealing. The patient-oriented infographic presents concise bullet points about 5 main topics: (1) what is research, (2) reasons to join, (3) your role, (4) talking to researchers, and (5) how to join. The researcher-targeted infographic presents concise bullet points about 4 topics: 1) why team up with diverse patient partners, (2) ways to partner, (3) how to connect, and (4) talking to diverse partners.ConclusionInfographics were co-designed to encourage diversity in family engagement in research. Lessons learned throughout the project include barriers encountered (e.g., team collaboration considerations, design limitations) and strategies that facilitated the project (e.g., online collaboration platforms). Future directions include translations into other languages, increased dissemination across agencies, and evaluating the effectiveness of the infographic tools.

【 授权许可】

CC BY   
© BioMed Central Ltd., part of Springer Nature 2023

【 图 表 】

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