作者
Kinga Pozniak, Francine Buchanan, Andrea Cross, Jennifer Crowson, Barb Galuppi, Danijela Grahovac, Jan Willem Gorter, Oksana Hlyva, Marjolijn Ketelaar, Olaf Kraus de Camargo, Manda Krpan Mesic, Rachel Martens, Dayle McCauley, Linda Nguyen, Robert J Palisano, Michelle Phoenix, Connie Putterman, Peter Rosenbaum, Jennifer Sprung, Sonya Strohm, Rachel Teplicky, Donna Thomson, Marilyn Wright
发表日期
2021/12
期刊
Research Involvement and Engagement
卷号
7
页码范围
1-15
出版商
BioMed Central
简介
Background
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.
Methods
This study is based on ethnographic research methodology and combines elements of organizational ethnography, interviews, and collaborative auto-ethnography with …
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K Pozniak, F Buchanan, A Cross, J Crowson, B Galuppi… - Research Involvement and Engagement, 2021