Research from Drs. Charlene Chu and Vivian Stamatopoulos showed how pandemic policies in long-term care institutions traumatized the family members of the people living in them.
A caregiver sat outside the window of a long-term care facility and watched as her husband grew frantic. This “window visit” was all that was allowed during strict COVID-19 restrictions.
“[He] couldn’t understand why I wouldn’t go in and was trying to rip the window frame out,” the woman said. “[He’d] run up and down the corridor and go into other people’s rooms and wrestle the window frames there to keep [his eyes on me].”
This story was one of dozens Drs. Charlene Chu and Vivian Stamatopoulos gathered for their paper, “‘It’s the worst thing I’ve ever been put through in my life’: The trauma experienced by essential family caregivers of loved ones in long-term care during the COVID-19 pandemic in Canada.”
The study earned the 2024 International Conference on Aging, Innovation, and Rehabilitation (ICAIR) Paper of the Year Award. It’s given to the winners of the ICAIR Scientific Spotlight Series—a competition in which authors of prominent research papers present their findings.
“Winning this international award is not just a research recognition for us—this work was about giving a voice to family caregivers who felt powerless during COVID-19,” said Dr. Chu, a KITE Affiliate Scientist and an Assistant Professor at the Lawrence Bloomberg Faculty of Nursing at the University of Toronto.
“For me, it’s a deeply personal validation of our research making a difference.”
The paper explored the trauma relatives of people living in long-term care homes experienced as a result of COVID-19 restrictions.
Dr. Chu and Dr. Stamatopoulos, an Associate Teaching Professor in Criminology and Justice at Faculty of Social Science and Humanities at Ontario Tech University, conducted focus groups with family caregivers across Canada who had loved ones in long-term care facilities during the early to mid-stages of the COVID-19 pandemic.
They found family caregivers experienced trauma that caused irreparable harm to their relationships with loved ones and eroded their trust in the long-term care system from four distinct sources. Those were prolonged separation from loved ones; uncompassionate interactions with the long-term care home staff and administrators; the inability to provide care to loved ones; and experiencing prolonged powerlessness and helplessness.
One participant was worried when her mother missed their weekly Zoom call, so she asked staff to check on her. “They literally hung up on me instead of checking,” she said.
Another put in a request with her mother’s care facility to maintain mealtime visitations as she had a history of choking. The facility denied the request, and three months later, her mother choked during breakfast.
“We almost lost her,” she said.
The paper highlights the complicated relationship between essential family caregivers and long-term care homes, where unpaid caregivers often fill care gaps.
During the pandemic, COVID-19 policies prevented them from offering this crucial support, which reinforced a power imbalance between caregivers and the healthcare system. These policies left many families feeling powerless.
“Our research was able to really spotlight the many different intersecting forms of trauma that these families experienced and still experience to this day. There's a lot of work that needs to be done to repair trust,” said Dr. Stamatopoulos.
“We need to apply these strategies across all forms of congregate care—hospitals, homes for children and adults with disabilities, and long-term care facilities.”
The findings underscore the need for changes to provincial and federal legislation to prevent locking out family caregivers for undetermined amounts of time, to strengthen family councils—groups of relatives and friends of the residents in long-term care homes—and use trauma-informed approaches to rebuild relationships between relatives of residents and staff.
Canada needs a long-term care system that includes the voices and needs of residents and their families, Dr. Stamatopoulos said.
“The odds are we're going to experience some sort of mass emergency or pandemic within our lifecycle again, and we do not want to repeat the same mistakes.”
The Scientific Spotlight Series will return to the third edition of the ICAIR conference on May 1 & 2, 2025 in Toronto. Registration is now open.