Honouring the role of family caregivers

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Five years ago, Gillian spent several months with her son in the Neonatal Intensive Care Unit (NICU) at Mount Sinai.

“It was a long and tumultuous journey for my family,” says Gillian. “What made it bearable was the incredible care and support I received from hospital staff, which allowed me to be the best caregiver I could be, in hospital and even after we went home.”

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The first Tuesday of April is recognized in Ontario as Family Caregiver Awareness Day. A 2009 estimate published in Healthcare Quarterly puts the contributions of family caregivers to the health care system at $25 billion per year. At Sinai Health, we define family in the broadest sense — family, friends, neighbours—who provide critical and often ongoing personal, social, psychological and physical support, assistance and care, without pay, for our patients.

Across Sinai Health, family caregivers are being supported in a variety of ways: through our approach to Family Integrated Care (FICare) that families like Gillian’s experience in the NICU, with the introduction of a family presence policy at our Bridgepoint Campus; and providing in-person and online programs for people caring for family members or friends living with dementia through the Cyril & Dorothy, Joel & Jill Reitman Centre for Alzheimer’s Support and Training.

In 2017, we began a three year project in partnership with family caregivers, WoodGreen Community Services and The Change Foundation to co-design a caregiver friendly hospital and community. Over the last two years, the Cultivating Change project has been focused on partnering with caregivers in four areas – our NICU, our stroke rehabilitation and palliative care programs, and in our community.

“As someone who has worked in change management for over 20 years, I recognize how hard complex change can be,” says Brina, a family caregiver. “For the last three years, I have been a caregiver, with the last year being the most intense due to my husband’s second stroke. As a member of the steering committee for the Cultivating Change project, I can honestly say that it is one of the best run teams I have ever seen. The collaboration between the organizations has meant that we have been able to see such thoughtful, productive projects with win-win outcomes. I’ve also felt that as a caregiver, my voice has been listened too – and respected.”

Below are some reflections from the caregivers who have been part of co-designing the projects along with our clinical teams.

Gillian

Gillian has been serving as a process improvement coordinator for the NICU e-talks project. E-talks will be a series of videos that will support parents while their infant is in the hospital. Reflecting on her experience in the hospital, “The care we received helped me develop my voice as a new mother, which I still use to this day to advocate for my son’s needs. It’s a privilege to work with the Cultivating Change project supporting caregivers, because I learned first-hand how important it is to empower these individuals, so patients can do better as well.”

Helena

Our palliative care group is looking to support caregivers no matter where in the journey they access services – in the community, at home or in the hospital, or through bereavement counselling. Helena was a caregiver to her parents through their palliative journey, “It’s has been an honour being a part of the Cultivating Change project. Not only has it helped with my healing process, it has also given me hope that amazing and positive changes can be made to help relieve families who are going through similar situations.”

Brina

Our stroke caregiver working group is co-designing projects to support caregivers in the hospital and as they get ready to transition back to the community, including a peer support group. “As a member of one of the focus groups for the stroke project, I learned quickly that caregivers and their needs are not identical,” reflects Brina. “Hearing from other caregivers has opened my eyes to what others are experiencing, but I felt that the work has been always focused achieving the best possible outcomes for all caregivers.”

For more information on our Cultivating Change project, watch the video below:

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