Caregivers as essential members of healthcare teams: lessons learned from enforcement of the “no visitors” policy during the COVID-19 pandemic in Ontario, Canada

The COVID-19 pandemic brought to the forefront caregivers’ unmeasured, unpaid work. Despite increasing recognition of caregivers as essential care-partners, during the pandemic, “no visitor” hospital restrictions prevented caregivers from engaging in their pivotal role within the healthcare system. This qualitative research aimed to better understand the wider effects of the pandemic on cancer care in Ontario, Canada with a focus on the experiences of cancer patients, caregivers, healthcare providers, and healthcare decision-makers (leaders in oncology who direct care, manage units, and/or supervise frontline staff) to capture multiple perspectives on caregiving. One-on-one, semi-structured interviews and focus groups were conducted with 32 participants across two hospitals. Participants were 18 years of age or older and had received, supported, or provided cancer care services during the pandemic, at one of the two hospital study sites. Interviews and focus groups were audio and video recorded and then transcribed. Inductive, codebook thematic analysis was conducted following Braun and Clarke’s six steps. Caregivers were found to be central to in-hospital person- and family-centred care. Their absence and the corresponding gaps in care highlighted their work as integral to comprehensive healthcare. Without caregivers present to absorb and communicate complex information, instructions were often missed or misunderstood by patients. Caregivers were also needed to help with advocacy and challenging navigation of the healthcare system. They alleviated some of healthcare providers’ workload through their work as porters, translators, and nursing and mental health support—responsibilities which were then foisted onto healthcare providers who were over-capacity and unable to absorb the extra work. The “no visitors” policy created barriers to caregivers, causing moral distress, negative emotional impacts, and created or redistributed essential care work in harmful ways. The exclusion of caregivers resulted in an extra burden of work for healthcare providers. This reinforced the idea that caregivers are essential members of the in-hospital healthcare team whose presence facilitates more efficient and quality care. When healthcare providers were unable to absorb this burden of work, patient care quality and experience often declined. Caregiver presence is therefore essential for quality, person- and family-centred care.