The Pan-Canadian Palliative Care Research Collaborative (PCPCRC) is recruiting additional patient or caregiver partners to help shape the future of palliative care.
The primary role of a patient/caregiver partner is to ensure the PCPCRC and its members’ studies are patient-centered. The patient/caregiver partner brings their personal experiences to help us focus on meaningful patient outcomes, understand the patient’s point of view, and develop effective ways to communicate our studies with patients.
Andrée Chartrand is an artist living in Sainte-Agathe-des-Monts, Quebec. She is new to both the PCPCRC and to healthcare research.
For 20 years, Andrée was the primary caregiver for her husband, who faced a series of health challenges following and related to a Parkinson’s diagnosis—depression, dementia, and heart attacks, among others. He lived at home for the first 13 years, eventually moving to a series of assisted living centres as his needs increased.
Over the course of the two decades Andrée was a caregiver to her husband, she spent a lot of time building relationships with healthcare providers and learning about the healthcare system so she could be a more effective advocate. Before learning of the PCPCRC’s work and the role of Patient and Caregiver Partners, Andrée had never thought her experience as a caregiver could impact anyone but her own family. “I lived this intensely for 20 years of my life,” she says, “and the fact that what I learned throughout this long experience might be of use to someone else is an incredible gift.”
Support from friends and family was crucial during this time, as Andrée was simultaneously caring for their three young children at the time. Eventually burnt out by the significant physical, emotional, and logistic work that accompanies being a caregiver, she ended up needing care herself and gained insight to the patient perspective of the healthcare experience. “I did the best that I could,” Andrée says, “but I felt very isolated. Of course, I talked about this with people around me, but if people aren’t living this, it’s very difficult for them to understand.”
Andrée looks forward to channeling her lived experience into her work with the PCPCRC. “It’s not that it makes my difficult experience worthwhile, but it certainly gives it more of a purpose.”