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Donna Thomson's avatar

Right on, Denise! I think there's a third way though, which is to embed family caregivers in research teams. I am a parent partner in childhood disability research and I co-designed and co-instruct a course at McMaster U called Family Engagement in research. The goal is to shape research questions (WHAT do we want researched and HOW do we want it researched? eg. if caregivers are being investigated, we can't go to the university for an interview!) We can help in data analysis (do the findings make sense?). And of course we can help with recruitment and dissemination within the relevant family caregiver communities. I think research partnerships can offer the same validation experience that being asked to blog or publicly tell a personal story. And I think it offers caregivers a chance to contribute to making the journey a little easier for folks in the future. But you are SO RIGHT that the old way of doing research does not serve us well - that's why I'm so invested in research partnerships with caregivers. https://www.canchild.ca/en/research-in-practice/family-engagement-in-research-course

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