With the onset of the COVID-19 pandemic, restrictive visitor policies have curtailed the ability of family caregivers to be present to partner in the care of loved ones. Building on the success of the "Better Together" campaign, Healthcare Excellence Canada – the newly amalgamated organization of the Canadian Foundation for Healthcare Improvement and the Canadian Patient Safety Institute – has co-developed policy guidance and "Essential Together" programming that recognizes the significant role of essential care partners. This work aims to support the safe reintegration of essential care partners into health and care organizations across Canada during the pandemic and beyond.

Introduction

Patient- and family-centred care has been a cornerstone of the health system and one of six key pillars of safe, high-quality care (Institute of Medicine 2001). Many patient- and family-centred policies and practices have emerged over the past decade, including that of family presence (IPFCC 2010). Significant shifts have been made to implement open family presence policies in the past five years across acute care hospitals in Canada – with an increase from 32% in 2015 to more than 70% in early 2020 – as the significant role that family caregivers play in the care of their loved one is recognized and valued (CFHI n.d.). With the onset of the pandemic in March 2020, in an effort to reduce the transmission of COVID-19 and to protect the most medically vulnerable, health and care organizations across Canada rapidly imposed highly restrictive blanket policies that prohibited access of family caregivers as essential care partners in hospitals, long-term care, residential care and other congregate care settings. As the pandemic continues in subsequent waves, emerging evidence points to the unintended consequences that such restrictions have had on the safety, quality of care and well-being of patients, residents, clients, their caregivers and healthcare providers. Little evidence has emerged to suggest that family presence is a source of transmission when appropriate screening and safety measures are implemented. The rapid restrictions put on essential care partners and visitors revealed the apparent fragility of patient-centred policies and practices that ultimately did not appear fully embedded within health and care organizations prior to the COVID-19 pandemic (Box 1).

This paper outlines the role that a pan-Canadian health organization had in promoting and supporting the development and implementation of patient-centred policies and practices through the "Better Together" (2015–2019) program and, most recently, the "Essential Together" program, in order to support health and care organizations across Canada to safely reintegrate essential care partners during the COVID-19 pandemic and beyond. Program approaches are wide-ranging and varied, including a targeted campaign, an e-collaborative, a provincial/territorial policy roundtable, an expert advisory group, a novel "policy lab" methodology to co-develop policy guidance and supportive implementation programming, all done in collaboration with those with lived experience of the health system.

This article is meant to reflect many settings where people receive care. Health and care facilities refer to hospitals, long-term care/residential care/nursing homes and other congregate care settings as well as primary care and outpatient care settings. For the purposes of this report, "patient" also includes clients and residents.

Patient- and Family-Centred Policies and Practices

A patient- and family-centred philosophy of care ensures that all processes of care are founded in mutually beneficial partnerships formed among patients, families and healthcare providers (IPFCC 2010). The development and implementation of open family presence policies by healthcare organizations enable the active involvement of families or other caregivers to be present and involved in care without restricted physical access to their loved ones, recognizing that caregivers cannot participate if they are "locked out" (CFHI 2015). Family presence policies differentiate between visitors and caregivers who are essential to the quality, safety and experience of patient care. These essential care partners, designated by the patient, play an integral role in ensuring that care meets the needs and preferences of patients. This is particularly crucial for patients in vulnerable situations (e.g., reduced cognitive functioning) where they require the support of those who know them best (CFHI 2015).

There is clear evidence that supports the value of family presence in the overall safety, quality of care and well-being of patients, caregivers and providers. Benefits of family presence include reduced anxiety during procedures, improved medication adherence and accuracy of information shared, lower patient falls and readmission rates, better-quality discharge and transition processes and sustained cognitive functioning in older adult patients (CFHI 2015; DuPree et al. 2014; Hahn-Goldberg et al. 2018; IPFCC n.d.). Conversely, non-accommodating policies can result in increased patient and family anxiety and dissatisfaction, produce greater medication errors and reduce patient safety and have also been associated with inconsistencies in patient care or the withholding of necessary treatment (Lee et al. 2007; Tsuda et al. 2019).

Some concerns regarding family presence have been raised, notably those related to patient privacy and confidentiality and the possible risk of infectious disease transmission. Employing strategies and safeguards, such as those developed by professional healthcare organizations, can help minimize the risk of breach of patient privacy and confidentiality while balancing the needs of patients and families (College of Nurses of Ontario 2018). The evidence noted during other infectious disease outbreaks and during COVID-19 has been consistent, with little published evidence to suggest that family presence in care results in additional harms or increases the risk of transmission (RAEB, Ontario Ministry of Health 2020). Rather, poor adherence to and application of infection-control and public health measures are found to play a key role in the spread of nosocomial infections (Davidson et al. 2014).

Supporting the Development and Implementation of Family Presence Policies across Canada: "Better Together" (2015–2019)

Based on the evidence for family presence, the Canadian Foundation for Healthcare Improvement (CFHI) launched the "Better Together: Partnering with Families" campaign in Canada in 2015, in partnership with the Institute for Patient- and Family-Centered Care (IPFCC). The Canadian campaign was directed at acute care hospitals, of which there are nearly 700 across Canada, spanning all 10 provinces and three territories.

The Better Together campaign involved the promotion of family presence policies by encouraging participating organizations to take a pledge to review and improve their existing visitor policies and to implement new family presence policies. CFHI developed a change package and tools and resources to equip healthcare leaders with the necessary support needed to enhance patient, family and caregiver engagement and to facilitate the introduction and implementation of family presence policies across Canadian healthcare organizations. Fifty-two organizations (including entire provinces/health regions) across 10 provinces and one territory took a pledge to implement family presence policies. Pledging organizations reported the newly developed partnerships and resources offered through the campaign to be beneficial and useful to their organization and described publicly pledging as a way to create momentum and accountability for implementation along with an increased understanding of families and caregivers as essential partners in care.

In 2016, CFHI augmented the campaign with further programming in the form of the Better Together e-Collaborative. The e-collaborative supported healthcare organizations in reviewing, implementing and evaluating family presence policies together with patients, families and caregivers. A total of 12 participating teams received peer-to-peer coaching support and resources, e-learning modules and access to a pan-Canadian network of healthcare organizations committed to patient- and family-centred care and family presence. By the end of the e-collaborative, the majority of teams had developed and implemented new family presence policies. Teams also noted their increased capacity to engage with patients and families for improvement through this process.

Building on the progress of the e-collaborative, CFHI hosted the Better Together Policy Roundtable in 2017 with government officials responsible for health policies specific to family presence in their provinces/territories, along with patient and family partners and other health organizations that could support the implementation of family presence in their jurisdictions. The goal of the roundtable was to share lessons learned from the provinces that had implemented family presence across their jurisdictions to further inform how family presence policies and practices can be spread, implemented and sustained across Canada. Learning webinars continued with policy roundtable participants for ongoing sharing of family presence best practices from across the country.

Evidence of Family Presence Policies across Canada: 2015–2020

Before the launch of the Better Together campaign, CFHI commissioned a baseline study called "Much More Than Just a Visit: A Review of Visiting Policies in Select Canadian Acute Care Hospitals" to identify and evaluate family presence policies in Canadian acute care hospitals, adapting a methodology used in a New York study published in 2012 (CFHI 2015). Between February and April 2015, family presence policies in 114 acute care hospitals were reviewed. Out of 114 hospitals, 104 hospitals clearly communicated their visiting hours on their websites, and only 36 hospitals (32%) received a score of 7 out of 10 on visiting-hour openness and notification of flexibility, trending toward more "accommodating visiting policies." Scores lower than 7 indicate less accommodating policies. The study findings highlighted the opportunity to improve family presence policies in Canada, a role that CFHI took on through the work of Better Together.

CFHI commissioned a follow-up study with data collected in early 2020, prior to the COVID-19 pandemic. The study applied the same methodology utilized in the baseline study to examine 118 eligible Canadian acute care hospitals from January to February 2020. The minor increase in the number of hospitals surveyed in 2020 was a result of the restructuring of hospital networks and local health authorities. Results from the follow-up survey indicated a significant increase, from 32% of hospitals having accommodating visiting policies in 2015 to 73% in early 2020. See Table 1 for a comparison of hospital scores in 2015 and 2020.

Reports of highly restrictive visiting access rapidly emerged at the beginning of the COVID-19 pandemic. In March–April 2020, CFHI commissioned the same research team to review 35 of the 118 hospitals that were included in the main study. By April 10, 2020, all 35 hospitals had suspended or significantly restricted visitor access, compared with findings from the January–February 2020 study that found that 20 out of the same 35 hospitals had open/flexible family presence policies. Gradually, restrictions have been eased through the crisis, with hospitals and other health and care settings adjusting their family presence policies to adapt to the changing landscape and recognizing the valuable role played by essential care partners and the unintended harms of such blanket restrictions. A subsequent review in October 2020 of the same 35 hospitals indicated that 28 of the 35 hospitals had made amendments to their COVID-19 visiting policies. The remaining seven hospitals did not make changes to their policies since April 2020.

The work of Better Together focused only on the hospital sector. Early reports in media and social media suggest that similar findings were noted in long-term care facilities where blanket visitor restrictions were also applied in the early days of the pandemic due to immediate concerns regarding COVID-19 transmission. The Canadian Foundation for Healthcare Improvement and the Canadian Patient Safety Institute (CFHI-CPSI) conducted a scan of publicly available sources of federal, provincial and territorial guidance and directives in October 2020, which also included policies in long-term care settings across Canada. At that time, more than six months after the pandemic had been declared, most policies outlined in the scan appeared to have loosened restrictions and supported the presence of one or two essential care partners under certain restrictions or circumstances in long-term care settings, although the application of these changes has been inconsistent across jurisdictions.

Responding to COVID-19 and Beyond: The Creation of "Essential Together"

The rapid changes noted to family presence policies across Canada in the early days of the pandemic indicated a singular focus on the risk of transmission of COVID-19, which was critical as an initial protective response to the crisis. However, evidence continues to emerge, confirming that family presence does not introduce additional harm in the form of disease transmission if appropriate safety protocols are in place.

Evidence from past infectious outbreaks reports poor implementation of infection prevention and control (IPAC) measures and other public health controls in healthcare settings as a primary factor for infectious disease transmission among visiting caregivers (Chan et al. 2020; Islam et al. 2014). Epidemiological studies examining the rates of COVID-19 transmission have reported similar findings. A scan conducted by the Research, Analysis and Evaluation Branch of the Ontario Ministry of Health (2020) found that recent studies from the United States, South Korea and Spain reported the risk of hospital-acquired COVID-19 infection to be low. Findings from the studies indicated the transmission of COVID-19 to be a result of inadequate adherence and implementation of IPAC and public health measures (e.g., poor training and procurement of personal protective equipment [PPE]) and other organizational factors (e.g., disproportionate patient to staff ratio) and not the result of family and caregiver presence. The National Collaboration Centre for Methods and Tools (2020) reported comparable findings in a rapid review examining the spread of COVID-19 in long-term care settings. The report found no evidence to support restrictive visitation policies as an effective strategy for reducing outbreaks and mortality within long-term care settings.

What we learn from the evidence is that infectious disease transmission can be controlled through rigorous application of enhanced hand hygiene, adequate procurement of PPE, training on PPE use and IPAC protocols, implementing proper screening and barrier precautions, limiting the number of visitors and/or length of visits (when absolutely necessary) and having an appropriate staffing ratio (CADTH 2020b; NCCMT 2020; RAEB, Ontario Ministry of Health 2020), thus providing considerations to safely reintegrate essential care partners into the care of their loved ones.

Emerging evidence following the blanket visiting restrictions implemented in the early days of the pandemic have highlighted concerns regarding the safety and well-being of patients, families and healthcare providers as a result of these policies. Patients – specifically those who are considered to be medically vulnerable (e.g., intensive care unit patients) – are at higher odds of experiencing medical errors, emotional and/or physical harm, costly non-essential treatment, discrepancies in care and social isolation when essential care partners are restricted from participating in patient care processes (Cacioppo and Hawkley 2003; NCCMT 2020). A 2020 Dutch study noted that long-term care facilities that were subjected to an all-visitor ban reported higher rates of loneliness, depression, and changes to mood and behaviour among their residents (Van der Roest et al. 2020).

Essential care partners who play a fundamental role in ensuring that provided care is pursuant to the needs and preferences of the patients have also been documented to experience heightened stress and anxiety levels as a corollary of restrictive visitor policies (Davidson et al. 2014). Similar findings have been echoed in reports from patients, families, caregivers and healthcare providers, emphasizing concerns around psychological and moral distress, patient and healthcare provider safety, worsening mental and physical health, communication lapses, healthcare staff burnout and the inability of family/caregivers to offer support and care for their loved ones (CADTH 2020a; Mackean et al. 2020; Reinhard et al. 2020; Taniguchi 2020; Verbeek et al. 2020; Wakam et al. 2020).

Fuelled by the evidence base prior to and emerging throughout this pandemic (CFHI 2020c), Healthcare Excellence Canada (https://www.healthcareexcellence.ca/en/) is continuing to support health and care organizations to safely reintegrate family and caregivers as essential partners in care, aiming to balance the risk of infectious disease transmission with the promotion of patient- and family-centred care philosophies and principles. While the rollout for vaccinations and rapid testing regimes are currently being implemented, continued vigilance with screening and safety protocols in health and care settings is required to continue to reduce risk where possible.

Since early 2020, Healthcare Excellence Canada's "Spotlight Series" has showcased innovative approaches to responding to the COVID-19 pandemic. The Family Presence and Caregiver Presence and Partnership during the COVID-19 Pandemic webinar was the first of many subsequent webinars to explore the immediate COVID-19 responses of healthcare organizations, emphasizing the drastic changes to family presence policies and practices, the consequences of such actions and potential strategies for recalibrating family presence policies during the COVID-19 pandemic (CFHI 2020a). As healthcare organizations across Canada implemented highly restrictive visitor policies, evidence emerging both anecdotally and through research literature began illustrating the unintended harm that these policies have on the care, experience, safety and outcomes of patients and caregivers (CFHI 2020b). To help healthcare organizations and jurisdictions move forward and reintegrate family caregivers as essential partners, an expert advisory group was convened, composed of healthcare providers, healthcare system leaders, hospital executives, legal and bioethics experts and public health experts, as well as patient, family and caregiver partners with lived experience. Through this collective effort, the Re-Integration of Family Caregivers as Essential Partners in Care in a Time of COVID-19 report was developed (CFHI 2020b). The report outlined seven evidence-informed steps to guide the reintegration of family caregivers as essential partners in care for organizational and jurisdictional visitor policies/guidance (Figure 1).

Building on the work of the rapid-response expert advisory group, Healthcare Excellence Canada conducted a virtual policy lab, a novel approach that culminated in the co-development of the "Reintegration of Caregivers as Essential Care Partners" policy guidance that provides a safe and consistent approach to reintegrating essential care partners into healthcare facilities, long-term care and congregate care settings during a pandemic and beyond (CFHI 2020d). The unique co-creation approach to the policy guidance brought together policy makers, policy implementers (e.g., healthcare administrators, healthcare providers) and those who experience COVID-19 family presence policies (e.g., patient, residents, clients, families and caregivers) as policy lab participants. Three guiding principles for the successful reintegration of essential care partners were identified:

1. Differentiate between visitors and family caregivers as essential care partners.
2. Recognize the value of caregivers as essential care partners.
3. Ensure that patients, families and caregivers have a voice in the development of policies related to visitors and essential care partners.

Two main areas of policy guidance were co-developed: (1) identification and preparation of essential care partners and (2) entry into the facility. Details are outlined in the policy guidance (Table 2). Recommendations for implementation are outlined in the policy guidance report (CFHI 2020d). Tailoring the policy guidance to the local context is recommended in order to ensure that new policies and directives better meet the needs of local communities and health and care settings. The issue of family caregivers as essential care partners is multi-jurisdictional, and there are similar concerns, challenges and opportunities for policy conversation across the hospital sector, long-term care and other congregate care settings. While the policy lab participants were largely from the hospital sector, the evidence, research and insights that were drawn on to establish this policy guidance indicate that recognition of the role of essential care partners is a foundational principle across all settings where care is provided. This guidance would be applicable across all health and care settings and is consistent with other published evidence-informed guidance noted from the long-term care sector (Stall et al. 2020).

In December 2020, Healthcare Excellence Canada launched the Essential Together program, expanding on the work of Better Together and the policy lab. Essential Together is supporting health and care facilities across Canada to implement the co-developed policy guidance during COVID-19 and beyond. Specific programming targets different audiences. For policy makers, it is crucial that they differentiate between visitor and essential care partners and recognize the valuable role essential care partners have in the health system. For those seeking to implement the policy guidance, there is a "call to action" to reinforce the need for change, particularly during these times of crisis. The Essential Together tool based on the policy guidance will assist health and care leaders to determine their strengths and areas for improvement within their organizations to safely reintegrate essential care partners (CFHI 2020e). Curated tools and resources, sourced from health and care organizations from across the country, are widely available, with accompanying online learning webinars. Peer-to-peer learning in regular national huddles as well as individual/group coaching provide wraparound supports for organizations seeking to implement the policy guidance. Essential Together has been endorsed by many national and provincial organizations in efforts to meet the needs of patients and their caregivers while balancing the needs of the healthcare system to provide a risk-based approach that offers safe, high-quality, patient-centred and partnered care.

Conclusion

Family caregivers as essential care partners serve a critical role in the health system and in the care of their loved ones, with evidence to support family presence demonstrating improved care experience, outcomes and well-being of patients, caregivers and healthcare providers. Through the co-creation of programs and resources, Healthcare Excellence Canada is committed to providing a balanced approach to patient-centred and partnered policies and practices, together with considerations for safety, risk and harm. Essential Together aims to support health and care organizations across Canada to safely reintegrate essential care partners in the care of their loved ones and to further embed a philosophy of care that partners with patients and their caregivers during times of crisis and beyond.

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