“You want them to be partners in therapy, but that's tricky when they’re not there”: A qualitative study exploring caregiver involvement across the continuum of care during the early COVID pandemic

Abstract

Objective Widespread visitor restrictions were implemented during the COVID-19 pandemic at acute and inpatient rehabilitation hospitals. Family caregivers were physically isolated from their loved ones, which challenged engagement in patient care and readiness for their role. Thus, we aimed to explore the involvement of family caregivers in COVID-19 patients as they journeyed across the care continuum during the early phase of the COVID-19 pandemic. Design We employed a qualitative descriptive approach. Participants We conducted interviews with family caregivers, COVID-19 patients, and healthcare providers between August 2020 and February 2021. Setting Participants were recruited from a single hospital network in Toronto, Ontario, Canada. Interviews were recorded and transcribed. Data were analyzed thematically. Results A total of 27 participants were interviewed—12 healthcare providers, 10 patients, and 5 family caregivers. Four themes were identified: (a) Caregivers were shut out in acute COVID care, (b) Patient discharge from inpatient rehabilitation was turbulent for caregivers, (c) Caregivers were unprepared to support loved ones in the community, and (d) Patient discharge to home was heavily dependent on caregiver availability. Conclusions Visitor restrictions prevent family caregivers from being physically present at patients’ bedside, leading to complex and detrimental impacts such as caregivers feeling that they were not engaged in their loved one's care planning until they were discharged. In turn, discharge to the community was met with several challenges including caregivers feeling underprepared and unsupported to meet their loved one's unique care requirements. This was exacerbated by a lack of community-based resources due to ongoing pandemic restrictions.