Invisible patients: Caregivers need support too in Canada’s health-care system

CBC by Karine Levasseur 2 November 2019

Nervous, afraid and distressed — this is how many Canadians say they feel about the future health care, according to a recent survey.

Where does this negative perception come from? Our research suggests that much of it may arise from the experiences many Canadians have when in the role of caregiving for loved ones.

In a national 2019 survey conducted by Ipsos on behalf of the Canadian Medical Association, when participants were asked to describe their views about the future of health care in Canada, negative emotions (62 per cent) like nervousness and distress far outweighed positive (38 per cent).

Our ongoing research on medical errors and mistreatment provides some insight into why — and how the stress of acting as a caregiver may inspire those negative feelings.

The number of caregivers is staggering in Canada. An estimated 46 per cent of the population aged 15 and over, or 13 million Canadians, provide care to a family member or friend with a long-term health condition, disability or aging needs.

The complex experiences of family and friends of patients in our health-care system is an often overlooked, but integral part of assessing our medical system.

Caregivers become patients

These informal caregivers often experience a double bind in their encounters with clinicians and medical staff. On the one hand, they are expected be an expert and/or watchdog of their loved one’s care. On the other hand, they are often admonished or isolated if their concerns are inconvenient or difficult for staff to engage with. 

This complex role leads many caregivers to experience a range of negative emotions in line with the CMA survey results. In addition to expressing nervousness, fear and distress, many of our informal caregiver participants discussed experiencing debilitating feelings of blame, guilt, and, in some cases, post-traumatic stress disorder (PTSD).

There is also the bleak reality of financial stress given that caregiving is unpaid labour. An estimated one in 10 caregivers provide care for 30 or more hours a week, which leaves little time for employment.

Karine Levasseur is political science professor at the University of Manitoba.