Grant: CIHR Café Scientifique Program

Family caregivers are essential partners in health care and provide $25-26 billion in home care annually; while incurring $80 million annually in out-of-pocket expenses. It is well known that providing care at home for a seriously ill or dying family member can be deeply meaningful and rewarding. At the same time, caregiving can be challenging and family caregivers are at risk of a decrease in their own health and wellbeing. Caregiving can be costly - emotionally, physically, relationally, and financially. Who cares for the caregivers? Our research indicates that we have added the expectation for family caregivers to care for themselves at the same time as providing critical care for a sick family member. However, family caregivers do not typically attend to their own health needs and often do not get the support they need to provide care. Family caregivers have well recognized needs such as education about illness and caregiving, skill development around the practical problems of providing care and relieving suffering, and assistance with navigating the health care system. But these needs are often unmet. These findings raise important questions for discussion: How can we adequately support family caregivers to do the critical work of providing care? How can we help family caregivers maintain their health and wellbeing in the process?