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.
Though she is one of the most recent additions to the PCPCRC community, Caregiver Partner Gwenn Boryski is well-versed when it comes to advocacy in healthcare. Gwenn supported her mother, who was diagnosed with dementia, until her death in late 2020.
Caring for a loved one with dementia is never easy, but Gwenn is grateful she and her siblings could work together and divide the care work among them, with no disagreements about their mom’s care. “We were some of the lucky ones,” she says. “The support was easy, though the journey was not.”
Gwenn lives in Calgary, Alberta. She began volunteering with Alberta Health Services (AHS) nearly seven years ago, eventually joining a project led by PCPCRC member Dr. Jessica Simon. “It was about being the voice of the family,” says Gwenn. The project was about implementing advance care planning on hospital units, and Gwenn would attend meetings to make sure the processes was amenable to patients and families.
Dr Simon’s passion for advance care planning was contagious; for Gwenn, planning for the end-of-life has become a key interest and passion. Gwenn’s mother had been very prepared, having her wishes expressed and care documentation completed ahead of time, and coordinating access to resources before they were absolutely needed. “She was a great role model for preparedness,” Gwenn says.
Gwenn was eventually introduced to the work of the PCPCRC by Dr. Simon, who encouraged her to join as a Partner and share her experiences caring for her mother. Gwenn joins a group of dedicated Patient and Caregiver Partners who bring their lived experiences to ensure PCPCRC members’ studies are patient- and caregiver-centered. Our Partners attend PCPCRC meetings, review public-facing communication materials, and evaluate applications to the PCPCRC’s annual seed funding competition.
As Gwenn embarks on her new role with the PCPCRC, she will also remain involved with AHS, though in a different capacity. She now works in the gift shop: “It’s more fun than I thought it would be!”