Caregiver; Co-founder, Family Caregivers Voice
Sara Shearkhani of Toronto is the co-founder of a caregiver-led group, Family Caregivers Voice (FCV), that is committed to educating family caregivers on their journey and promoting self-advocacy. She is also the Lead for Patient and Community Engagement Research (PaCER) Toronto, a branch of PaCER, designed to train patients and caregivers as researchers and dedicated to taking patient/caregiver engagement in the health care system to another level.
While she was a PhD student, Sara suddenly became her husband’s primary caregiver following his brain cancer diagnosis. Sara grew frustrated with the inadequate amount of support for patients and family caregivers within Ontario’s health care system. After expressing her views in a 2014 article published in the Globe and Mail, she received many sympathetic emails from like-minded and frustrated family caregivers, including one particular caregiver named Carole Ann Alloway, with whom she eventually created FCV.
Sara has educated herself on the many people, organizations and agencies who influence health care policy, attending many of these groups’ conferences and even developing one. Sara and Carole Ann have started an Awareness Campaign with the goal of educating caregivers on stages of caregiving and to provide health care professionals with caregivers’ insights. They have presented at Toronto Western Hospital, Patients Canada and The Change Foundation, providing real life stories of how the health care system has failed patients and caregivers, all while offering solutions.
Recently, Sara initiated a partnership with Patients Canada which resulted in a new Caregivers Working Group. The group’s first mission is to develop four workshops for caregivers, and to partner with organizations such as The Change Foundation and the Ontario Hospital Association to begin offering the workshops and furthering the cause of the caregiver.
With the help of her supervisor, Dr. Nancy Marlett, she also established PaCER Toronto team. PaCER is a Canadian innovation in research started at the University of Calgary, designed to train patients/caregivers as researchers for the health care system. The Toronto team includes four patients/caregivers dedicating their time and energy to learn how to write Ethics proposals and conduct qualitative research. Currently, the Toronto team is working mainly from Sara’s living room and has decided to work on Spousal Patient-Caregiver Dyad.
Through her hard work and determination, Sara gives a voice to other caregivers who, at times, do not receive the same recognition as other health care providers for their service. She has turned the devastating, unexpected life event of her young husband’s diagnosis into her life’s calling. It is clear that her impact has only just begun.