Building a culture of engagement at a research centre for childhood disability
Pozniak, Kinga; Buchanan, Francine; Cross, Andrea; Crowson, Jennifer; Galuppi, Barb; Grahovac, Danijela; Gorter, Jan Willem; Hlyva, Oksana; Ketelaar, Marjolijn; Kraus de Camargo, Olaf; Krpan Mesic, Manda; Martens, Rachel; McCauley, Dayle; Nguyen, Linda; Palisano, Robert J; Phoenix, Michelle; Putterman, Connie; Rosenbaum, Peter; Sprung, Jennifer; Strohm, Sonya; Teplicky, Rachel; Thomson, Donna; Wright, Marilyn
(2021) Research involvement and engagement, volume 7, issue 1, pp. 1 - 15
(Article)
Abstract
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?
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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 parent partners, researchers, staff, and trainees. RESULTS: Since the inception of CanChild Centre for Childhood Disability Research at McMaster University in 1989, parents have been involved in research studies. Over time, this involvement evolved from being consulted on research studies to undertaking decision-making roles as partners and most recently as co-principal investigators. A growing infrastructure fosters a community of engagement that goes beyond the individual research study, and often beyond CanChild. This infrastructure consists of training, knowledge mobilization and social networking. In addition, the "softer" building blocks of CanChild's culture of engagement are an openness to learning from others, a commitment to relationship building, and a drive to grow and improve. These values are espoused by the leadership and are instilled in the next generation of researchers to inform both research and clinical work. While some challenges should be acknowledged when researchers and family partners work together on research studies, we identify a number of strategies that we have used in our studies to foster authentic and meaningful family-researcher partnerships. CONCLUSION: Engaging patients and families as partners in research constitutes a culture shift in health research, whereby studies about patients and families are carried out with them. Developing a community of engagement that transcends an individual research study is a step towards creating a culture of research that is truly shaped by the people about whom the research is being done.
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Keywords: Childhood disability, Collaborative auto-ethnography, Family engagement in research, Organizational ethnography, Health(social science), General Health Professions, Journal Article
ISSN: 2056-7529
Publisher: BioMed Central Ltd.
Note: Funding Information: In the early 2000s, parents began to be more fully engaged throughout the different phases of research studies and to assume more decision-making roles. A good example of this process is offered through two related research studies, Move and Play (2006–2009) [] and On Track (2012–2017) []. The Move and Play study followed children with cerebral palsy in Canada and the United States to gain an understanding of factors associated with motor function, participation and play. At the time, two parents reviewed and provided feedback on grants, training and recruitment materials, and knowledge products including presentations and research summaries. After the first study’s completion, the research team began to plan the follow-up On Track study, which aimed to capture and describe developmental trajectories among children with cerebral palsy. With the planning of the On Track study, the team had evolved in their thinking about the role of parents, both as a result of their previous experience of working together, as well as informed by the newly emerging literature and guidelines around patient engagement in research. For example, a research grant from the Patient-Centred Outcomes Research Institute (PCORI), funded in 2010, both enabled and mandated the creation of a parent advisory committee composed of seven parents (including two parents from the previous Move and Play study and five additional parents). Although the research questions were still generated by the researcher/clinicians (based on existing gaps in the literature), the parents’ experiences and priorities informed the progress of the study and gave a new direction to the study’s knowledge translation and dissemination activities. For example, the parents wanted to ensure that a focus on motor developmental curves did not detract attention from the children’s future potential and strengths in other areas of life. The parents initiated and developed a series of tip sheets, videos, blogs and articles in an online parenting magazine in order to contextualize the study findings and highlight key take-aways from a parent perspective []. Publisher Copyright: © 2021, The Author(s).
(Peer reviewed)
