Family caregivers as essential partners in care: examining the impacts of restrictive acute care visiting policies during the COVID-19 pandemic in Canada

Abstract

Introduction During the pandemic many Canadian hospitals made significant changes to their ‘open family presence’ and ‘visitor policies’ to reduce the spread of COVID-19 by instituting restrictive or ‘zero visiting’ policies in healthcare facilities. These policies have the potential to create great hardship, anxiety and stress for patients, families, caregivers and frontline healthcare providers (HCPs); along with concerns about the quality and safety of patient care. The presence of family members and other caregivers as essential partners in care is an explicit expression of the philosophy of patient- and family-centred care (PFCC) in action. The purpose of this study is to increase our understanding of how changes to family presence and visiting policies and practices during the COVID-19 pandemic have impacted patients, family caregivers and frontline healthcare providers (HCPs) in acute care hospitals. Methods A total of 38 in-depth semi-structured interviews were conducted with patients, family caregivers and HCPs in Canadian provinces who had experience with visiting policies in acute care settings during the pandemic. COVID patients, and the caregivers of COVID patients, were excluded from this study. A maximum variation sampling strategy was used to guide the selection and recruitment of patients, family caregivers and HCPs, based on our interest in gaining a diversity of perspectives and experiences. Results Many patients, family caregivers, and HCPs view family caregiver presence as integral to PFCC, describing the essential roles played by family caregivers prior to the pandemic. There were commonalities across all three groups with respect to their perspectives on the impacts of restrictive visiting policies on patients, family caregivers and HCPs. They fell into four broad integrated categories: (1) emotional and mental health; (2) communication and advocacy; (3) safety and quality of care; and (4) PFCC, trust in the healthcare system, and future decisions regarding accessing needed healthcare. Recommendations for pandemic visiting policies were also identified. Conclusions The findings from this study highlighted several impacts of restrictive family caregiver presence or visiting policies implemented during COVID-19 on patients, family caregivers and HCPs in acute healthcare settings across Canada. Participants emphasized that there is no “one-size-fits-all” caregiver presence policy that will address all patient needs. To be consistent with the practice of PFCC, patients and family caregivers are welcomed as part of the healthcare team in ways that work for them, demonstrating that flexibility in family presence and visiting policies is essential.

Family caregiver experience of caring COVID-19 patients admitted in COVID-19 hospital of a tertiary care hospital in Nepal

“…Our study, consistent with others [30,31], highlighted caregivers' experiences of stigma, discrimination, neglect, and lack of support from relatives, the community, and health care personnel. Visitation restrictions and communication gaps exacerbated caregivers' uncertainty PLOS ONE about patients' conditions, leading to negative emotions such as doubt and mistrust, consistent with other studies [32]. This emphasized the need for clear communication and information dissemination about hospital policies and patient status [32].…”

“…Visitation restrictions and communication gaps exacerbated caregivers' uncertainty PLOS ONE about patients' conditions, leading to negative emotions such as doubt and mistrust, consistent with other studies [32]. This emphasized the need for clear communication and information dissemination about hospital policies and patient status [32].…”

Family Caregiver experience of caring COVID-19 patients admitted in COVID hospital of B. P. Koirala Institute of Health Sciences, Nepal

“…In line with other study findings (30), (31) caregivers in our study faced stigma, discrimination, neglectful attitude, ignorance and lack of support from relatives, community and even health care personnel. Visitation restriction policy, in addition to the miscommunication from health personnel, led the caregiver to be uncertain and unassured regarding patients' condition leading to negative emotions such as doubt, mistrust and confusion which is consistent with other studies (32). Clear communication and adequate information regarding the hospital policies, patient condition and awareness regarding the disease itself is must in preventing many critical misunderstandings, mistrust and collision with the health care personnel and the hospital authorities.…”

Health Care Professionals’ Experiences With Using Information and Communication Technologies in Patient Care During the COVID-19 Pandemic: Qualitative Study

“…The experiences of bereaved relatives aligned with the internal conflicts of HCPs in the United Kingdom: families wanted frequent communication that was easy to understand, one last chance to say goodbye through physical touch, and speaking to their loved one at bedside [ 20 ]. Similarly in Canada, HCPs, patients, and families all felt that restrictive acute care visitor policies impacted the safety and quality of care, mental health of everyone involved, families as partners in care, and communication and advocacy [ 4 ].…”

“…ICT played an important role in supporting changes to clinical care within inpatient and outpatient health care settings. Within inpatient settings, ICT was integral in maintaining connectivity between patients, families, and providers when changes to visitor policies were implemented [ 4 ]. For example, the use of mobile devices and tablets allowed for connection between patient and family and supported knowledge transfer between provider and family [ 5 ].…”