We would like to show our support and appreciation of caregivers. April 6th is National Caregivers Day. In Canada, 2 out of 3 caregivers are providing assistance to an older adult. That’s 5.4 million caregivers.*
Family Caregivers
The trend of involving patient partners and caregiver partners as full members of health care research teams is relatively new and has evolved in Canada over the last decade. Granting agencies that support health research began to emphasize increasingly the importance of such partnerships. When granting agencies initially put forth the idea of partnering with caregivers and with patients in research, many researchers were skeptical. They argued that patient and caregiver partners would typically not have the expertise needed to provide input in research and that, some such partners, may have grievances against aspects of the health care system. These researchers were even concerned that some partners may be more motivated to prove aspects of the system wrong rather that conducting research with objectivity. In contrast, proponents of the idea of partnering with non-research stakeholders argued that caregiver and patient partners bring lived experience which may inform researchers about questions and research directions that might not have been otherwise considered.
My first experience in working with a caregiver partner was within the context of the Chronic Pain Network (CPN) which has the mandate to conduct patient-oriented research. The CPN provided proposed project summaries to potential patient and caregiver partners who then expressed an interest in potentially partnering with specific researchers. Caregiver Mary Brachaniec expressed an interest in our projects on pain in dementia. CPN then arranged for us to meet via video conference and discuss our mutual interests. After this meeting Mary and I were each asked independently by the CPN representative how we would feel about a potential research partnership. We both felt good about the possibility of working together and Mary joined our research team.
Prior to Mary joining us, I had attended a few symposia where patient partners were co-presenters with researchers. These patient partner presentations had focused primarily on their own lived experience with clinical problems and less on research direction and research issues. Such patient accounts are important but Mary opened my eyes to how much more can be achieved through working with patient and caregiver partners.
Just after Mary joined our team, we were in the process of recruiting older adult research participants for a pain self-management project. Based on many years of research experience, I was expecting that recruitment of research participants for the self-management project would take at least a year. What I had not realized was that I never had a caregiver partner before who was well networked with pain patients and advocacy organisations as well as with many individual pain patients. Mary sent a few messages to individuals and organizations and before we knew it, we had our entire sample in two to three months. Mary also reviewed materials that we had prepared for patients in our study with an eye of a stakeholder. She gave us ideas on how to simplify and improve the presentation of our material. Over the years, she presented at conferences with us about the important role of caregiver and patient partners in pain research, she wrote blogs aimed at helping us mobilize and translate research results, assisted in our knowledge mobilization effort, participated in media in interviews on behalf of our team, joined us as co-applicant in a funding applications and helped us in more ways than we could have ever imagined. Mary paved the way within our team and, since then we were joined by other caregiver partners, Charmayne and Andre LeRuyet who contributed to blogging and knowledge mobilization on behalf of our team.
The sky's the limit for what a caregiver partner can do for our research focusing on pain people with dementia. If you are a researcher trying to influence policy for the benefit of patients, imagine how much more powerful your message would be if you were not standing alone before the media but you were standing next to caregiver or patient partner advocating for change from their perspective
- Thomas Hadjistavropoulos, Ph.D.
How You Can Help?
Would you like to share your thoughts on our See Pain More Clearly initiative and the use of social media to mobilize knowledge about pain in dementia?
We are looking for caregivers to participate in a study to evaluate the effectiveness of the #SeePainMoreClearly social media initiative to mobilize knowledge about pain in dementia.
Dr. Hadjistavropoulos is an international leader in the area of pain assessment in dementia and has shown leadership in the promotion of the health sciences at the local, national and international level. He is the Research Chair in Aging and Health, Director of the Centre on Aging and Health and Professor of Psychology at the University of Regina, Saskatchewan, Canada. He served as the 2007 President of the Canadian Psychological Association (CPA).
*source: https://agewell-nce.ca/events/national-caregivers-day-2020
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