“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

Abstract

Background Essential family caregivers (EFCs) of relatives living in long-term care homes (LTCHs) experienced restricted access to their relatives due to COVID-19 visitation policies. Residents’ experiences of separation have been widely documented; yet, few have focused on EFCs’ traumatic experiences during the pandemic. Objective: This study aims to explore the EFCs’ trauma of being locked out of LTCHs and unable to visit their loved ones in-person during COVID-19. Methods Seven online focus groups with a total of 30 EFCs from Ontario and British Columbia, Canada were conducted as part of a larger mixed-method study. We used an inductive approach to thematic analysis to understand the lived experiences of trauma. Results Four trauma-related themes emerged: 1) trauma from prolonged separation from loved ones; 2) trauma from uncompassionate interactions with the LTCH’s staff and administrators; 3) trauma from the inability to provide care to loved ones, and 4) trauma from experiencing prolonged powerlessness and helplessness. Discussion The EFCs experienced a collective trauma that deeply impacted their relationships with their relatives as well as their perception of the LTC system. Experiences endured by EFCs highlighted policy and practice changes, including the need for trauma-centred approaches to repair relational damage and post-pandemic decision-making that collaborates with EFCs.

Keywords

• covid-19
• essential family caregivers
• focus groups
• long-term care home
• nursing homes
• trauma