Building a culture of engagement at a research centre for childhood disability

Building a culture of engagement at a research centre for childhood disability

Pozniak K; Buchanan F; Cross A; Crowson J; Galuppi B; Grahovac D; Gorter JW; Hlyva O; Ketelaar M; Kraus de Camargo O; Krpan Mesic M; Martens R; McCauley D; Nguyen L; Palisano RJ; Phoenix M; Putterman C; Rosenbaum P; Sprung J; Strohm S; Teplicky R; Thomson D; Wright M

Research Involvement and Engagement

2021

Childhood disability; Collaborative auto-ethnography; Family engagement in research; Organizational ethnography

Engaging patients and family members as partners in research studies has become a widespread practice in healthcare. However, relatively little has been documented about what happens after the research study ends. For example, is patient and family engagement embedded in the wider infrastructure of organizations, and if so how? What are the long-term effects of engaging parents on research teams on the culture of how research is conducted? This study seeks to address these two gaps by examining how a culture of family engagement has been built over time at CanChild Centre for Childhood Disability Research at McMaster University in Ontario, Canada.

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January 2022 List