According to a survey conducted by The Change Foundation, an independent health policy think-tank that works to inform positive change in Ontario’s health care system, overall in Canada family caregivers provide roughly three quarters of all patient care. The Change Foundation defines caregivers as family members, friends or neighbours who, without pay, provide care for someone who requires assistance, whether due to frailty, a long-term illness, accident or surgery, a degenerative disease, a physical or mental disability or age-related disorders.
In November 2018, The Change Foundation released the results of their Ontario-based survey of eight hundred caregivers on its website: Spotlight on Ontario’s Caregivers Report. This survey set out to understand the experiences, profile and needs of caregivers in Ontario. The report determined that caregivers in Ontario are struggling, in many ways. For those who take on the critical role of caregiving, there are real sacrifices involved — providing care for someone in need has real social, educational and financial impacts on caregivers’ lives. Perhaps more significant is the emotional impact. Caregivers almost universally feel heightened levels of stress, and often feel overwhelmed, helpless and frustrated — sometimes too, they feel that they receive very little support from the healthcare system.
In a 2009 report, The Change Foundation estimated caregiver’s contributions to the healthcare system at $25 billion per year. The number is staggering. Estimates based on a more recent survey are even more astonishing. According to the Foundation, based on the fact that caregivers provide an average of 11–30 hours of care per week, and using the current minimum wage of $14.00/hour in Ontario, the contributions of caregivers to the healthcare system add up to between $26 and $72 billion a year. In 2012 the Foundation estimated that there were 3.3 million family caregivers in Ontario — one third of Ontario’s population — and those numbers are on the rise.
If there was a collective caregiver strike tomorrow, Ontario’s healthcare system would come to a grinding halt. In a National Post article, “Caregivers ’glue’ holding health system together, but need more support,” Christa Haanstra, Executive Lead, Strategic Communication at the Change Foundation, was quoted as saying, “Caregivers are often invisible in the healthcare system, with their contributions going unrecognized as well as unrewarded.” But as is clear from the surveys and analysis conducted by The Change Foundation, caregivers truly are the glue that keeps our healthcare system together.
One of the stand-out objectives from the Change Foundation’s recent survey was to discover how caregivers feel about their role as part of the healthcare team. Understanding the feelings and needs of caregivers, and recognizing them as part of the larger healthcare team is an integral part of the patient-centred model of care at The Salvation Army Toronto Grace Health Centre (TGHC). Patients and families at the TGHC participate in the management of their own health care needs and work collaboratively with the nurses as well as the interprofessional health care team in a coordinated and respectful environment.
Two mothers who are primary caregivers to their sons, patients at the TGHC, were interviewed to discover how they feel about their role as part of the health care team, what challenges they face as caregivers, and whether they feel invisible or unrecognized. You can read their stories as mothers and caregivers of sons at the Toronto Grace: Teresa and Maria.
By: Gerry Condotta