Two new studies by U of T researcher Charlene Chu, explore the impact of lockdown policies and poor technological infrastructure in long-term care settings. Both pieces of research illustrate the profound impact on essential family caregivers and find that EFCs experienced a collective trauma due to these policies put in place during the acute stages of the pandemic.
“This was a nightmare turned into a reality for many family members,” says Chu, who is an assistant professor at the Lawrence Bloomberg Faculty of Nursing. “They were already fraught with guilt having to put their loved ones into care, and now they were required to bear witness to their family member’s decline and prison-like confinement, compounded by their own sense of helplessness in the situation.”
The studies, published in the Journal of Applied Gerontology and International Journal of Qualitative Studies on Health and Well-being, are part of a three-part series funded by the Rosenstadt Research Development Program, and the Centre for Aging and Brain Health Innovation (CABHI). They are the first to collect data from family caregivers in Ontario and British Columbia, both of which were among the hardest hit English speaking provinces with respect to COVID-19 infections and outbreaks in long-term care.
An international policy analysis previously published by Chu highlighted that a dominant policy early on in the pandemic was to limit visitor access to long-term care homes. This meant that EFC’s who were usually responsible for assisting staff in providing care to their loved ones, such as bathing, feeding and cognitive stimulation were denied entry. As an interim solution, LTC homes proposed video calling as a way for EFCs and family members to maintain contact.
“What we found in our research was that the use of technology was not a viable option for many EFCs and residents. There was very little in the way of infrastructure or resource planning to provide EFCs with appropriate digital access to their loved ones. Most homes did not have WI-FI for residents or adequate bandwidth to accommodate video calls in addition to all of the regular systems that keep the homes operational,” says Chu.
Through focus groups, Chu and co-author Vivian Stamatopolous, an associate professor at Ontario Tech University, found that EFCs consistently described their experiences of navigating long-term care policies during the pandemic as traumatic. When it came to accessing technology, they noted there were a series of complications including delays in scheduling of video calls, experiencing disappointment when their loved ones were not wearing their glasses or hearing aid so they could not interact, or having their call cancelled last minute. Of the calls that were made, they were limited in frequency and duration because staff were required to either physically hold the device, coordinate the call, and facilitate the conversation.
As a result of their separation, Chu says both residents and their EFCs suffered. Residents experienced depression, physical decline, and cognitive decline with study participants reporting that their loved ones lost the ability to use their hands, walk, or speak. EFCs experienced several stress related symptoms such as powerlessness, sadness, guilt, and exhaustion.
“In coding the experiences of EFCs it became apparent to us that they experienced collective trauma based on their descriptions and psychological responses,” says Chu, “collective trauma is when a cohort of people experience something so traumatic that it results in individual and group level psychological harm. This phenomenon disproportionally impacts people who are marginalized, including women, who often make up the main proportion of caregivers.”
Chu says that the EFCs involved in the study all acknowledged that staff in long-term care homes were trying their best and were also overstretched due to high staff turnover. The sector’s early reliance on agency staffing to fill roles due to COVID-related shortages meant that many of the staff did not have relationships with the residents or their EFCs and all of these issues were compounded by what many study participants perceived as a lack of compassionate interactions with LTC staff and administrators.
“In both studies looking cross-provincially, we can see that the relationships between EFCs, residents, and long-term care staff has been damaged by these lockdown policies,” says Chu. “The experience has planted a seed of mistrust in the LTC sector and their government’s ability to provide care. We may have a generation of EFC’s who will suffer the long-term consequences of this trauma, and who would never considering entering long-term care themselves after seeing what happened to their loved ones.”
In order to move forward, Chu says that the relationship will need to be repaired and at a practice level, staff in long-term care will need to utilize a trauma-informed care approach when interacting with EFCs.
“That is the notion that residents and families are approached with the recognition and knowledge that they have experienced trauma, and interactions attempt to restore a sense of safety and power” says Chu. “It is something that EFCs deserve.”
Chu and her team’s final study in this series will look at the impact of changes to visitation policies from virtual visits to outdoor visits, to in-person with the objective of better understanding how these various policies impacted EFCs.
“I also hope that our work, from a policy perspective, will prevent this from happening again,” says Chu. “EFCs should never be barred from visiting LTC homes to provide essential care like feeding and grooming. As part of the Ontario resident bill of rights, long-term care homes need to be able to provide family-centered care, and EFCs are an integral provider of that kind of care.”