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Families matter: The essential role of caregivers in our health system

Feb 15, 2019

Colleen Fox

Insights & Perspectives 4 minute read

The Family Day holiday is a time to enjoy some fun and relaxation with our loved ones. It is also the perfect opportunity to recognize the critical role that families play in caring for people with chronic illnesses like cancer or chronic kidney disease.

Colleen Fox, CCO
Colleen Fox is CCO's Group Manager of
Psychosocial Oncology & Patient Education

First, a definition. We’ve heard from CCO’s Patient and Family Advisors that family can mean different things to different people. For some, family is a group of people connected by genetics or formal relationships: spouse or partner, children, parents, cousins, etc. For others, family includes anyone who loves and supports them: friends, neighbours, colleagues.

All families are equally important, regardless of how we define them.

$26 billion in healthcare savings

Ontario’s healthcare system could not function without family members supporting individual patients in a multitude of ways. As unpaid caregivers, they provide 70 to 75 per cent of care for people receiving home care in Canada (according to Health Council of Canada). The Change Foundation conservatively estimates that informal, unpaid caregiving saves the Canadian healthcare system upwards of $26 billion annually.

Family members may be called upon to help with activities of daily living, such as meal prep, cleaning, dressing and bathing. They often must advocate on the patient's behalf with healthcare teams, employers and insurance companies, while providing actual medical care (of wounds, etc.) and administering medications.

All of this is in addition to the invaluable companionship and emotional support they offer their loved one.

While this care is unpaid, it does not come without cost. Some family members may struggle with anger, anxiety, sadness or even hopelessness in the face of dealing with their loved one’s chronic illness. On top of the emotional burden, family members in a caregiver role may also have to deal with physical, financial, employment and logistical challenges.

Recognizing caregiver distress

As most care is organized around the patient, caregiver distress often isn’t tested for, recognized or addressed systematically. It is no surprise that caregiver stress and burnout are on the rise.

For patients to receive the best care, their caregivers need support too.

That’s why CCO includes patients and families in our advisory groups. We need to hear caregivers’ perspectives and experiences in order to ensure their needs are represented in the design and delivery of healthcare services.

As a prime example of this work, Cancer Care Ontario is currently developing a caregiver support framework that will serve as a best practice document for Ontario’s Regional Cancer Programs. Importantly, the working group for this project has an equal number of family members as healthcare professionals. 

As we see advances in medical care, shorter hospital stays and increased life expectancy, the role of family in healthcare will become even more complex and long-lasting. With this in mind, we will continue our work with our partners to ensure families’ invaluable contributions are recognized and supported.

Colleen Fox is CCO's Group Manager of Psychosocial Oncology & Patient Education.

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