Family Caregivers as Essential Partners in Care: More Than Just A Visitor

Apr 20, 2020

by Julie Drury, Strategic Lead, Patient Partnerships | 20 Apr, 2020

Over the past weeks, the COVID-19 pandemic has put our healthcare system under pressure never before experienced. Hospital, community and clinical leaders are changing policy and practice almost daily in order to stay in front of the curve of patients becoming ill with COVID-19. In parallel, they are doing their best to protect their environments, patients and healthcare workers from being exposed to and contracting the virus.

In an era where patient centered care is valued and collaboration with people with lived experience is expected, the COVID-19 crisis presents significant tensions between patient and family centred care, patient safety, provider safety and infection control. We are hearing from patient partners that there has been a marked decrease in authentic patient engagement and partnership across the system as the pandemic evolved and healthcare organizations responded. At the same time, many organizations have stepped up their engagement and partnership with patients, families and caregivers and have included in them in virtual calls/webinars, and as active members of COVID-19 pandemic response teams. As we look ahead, now is the time to ensure the continuation of meaningful engagement and partnership with people with lived experience to strengthen policy and practice.

The evidence is clear that the presence and engagement of patients in their care, and partnership with family members and caregivers (‘family’ as designated by patients) improves patient experience, safety and outcomes.1 While healthcare organizations restrict ‘visitors’ in order to protect patients and healthcare workers, one to two family caregivers who are identified as ‘essential partners in care’ is a very different role and responsibility.

In late 2015, the Canadian Foundation for Healthcare Improvement launched a national campaign to encourage healthcare institutions to welcome family caregivers as partners in care and adopt open visitation as part of family presence policies. CFHI augmented the campaign with a change package, tools, resources and an e-collaborative. CFHI also hosted a pan-Canadian policy roundtable to support the Better Together campaign to shift the notion of families and caregivers from visitors, to partners in care. Since the campaign started, we have seen a notable increase in family presence policies in healthcare institutions across Canada.2

Over the past month, in an effort to minimize and control the risk of COVID-19 cases, many hospitals have made significant changes to their ‘open family presence’ and ‘visitor policies,’ and the vast majority of organizations, have instituted very restrictive or ‘zero visiting’ policies. Exceptions exist in some organizations for patients who are near end of life and women giving birth – both of whom are permitted one visitor. In pediatric centres, there are promising examples of strong policies where one to two family members are identified as ‘essential partners in care’ and are permitted at their child’s bedside.

The rapid shift to highly restrictive policies is understandable given the nature of the COVID-19 crisis. But such policies are very difficult for patients, families and caregivers, causing significant emotional distress, concerns for patient safety and the lack of ability to support loved ones while in hospital. Families and caregivers must remain partners in care, but that partnership may look different during these challenging circumstances.

How healthcare organizations have developed and implemented restrictions has varied, with some taking creative and innovative approaches that enable families and caregivers to remain partners in care. Some prioritized engaging with their Patient and Family Advisory Councils to discuss what restrictions might be required and why, as well as their implementation - including how to best communicate the changes. Some organizations have also put in place options that support ongoing contact between patients and their family/caregivers through virtual means including phone, text and email – even offering the appropriate tools (e.g. iPads).

However, with the crisis rapidly evolving, moving quickly was understandably important. Many directives and shifts in policy were implemented without engaging patients, families and caregivers or a broader staff discussion, including a shift in language that reverts to families and caregivers as visitors rather than as partners in care. Effective and appropriate communication about policy change and how families and caregivers can continue to partner in care is essential.

Family caregivers often support minor medical procedures, feeding, ambulation, cognitive stimulation, patient hygiene, medication adherence and are often essential in ensuring coordination and continuity of care. We know their presence reduces patient anxiety, supports patient safety and improves the accuracy and quality of shared information. Their role in non-critical care is essential to supporting overstretched clinical team resources. Many family caregivers are familiar with infection control protocols and can physically isolate and participate in COVID-19 screening.

Together, we have the opportunity to learn how healthcare organizations can develop an ‘essential partners in care’ approach as the COVID-19 pandemic evolves. Family caregivers are more than ‘visitors’. Family and caregivers are important to the healthcare system, and we have an opportunity to develop policy that ensures ongoing engagement and partnership – in ways that take into account everyone’s safety – to support them as essential partners in care in times of crisis, and beyond.

1 Institute for Patient- and Family-Centered Care. (2015). Canadian Foundation for Healthcare Improvement On Call Webinars: Better Together Campaign: Spreading Family Presence Policies to Accelerate Healthcare Improvement. Retrieved from:

Levine, C., Halper, D. E., Rutberg, J., L., & Gould, D. A. (2013). Engaging family caregivers as partners in transitions: TC–QuIC: A quality improvement collaborative. New York: United Hospital Fund.

Smith, L., Medves, J.M., Harrison, M.B., Trammer, J.E., & Waytuck, B. (2009). The impact of hospital visiting hour policies on pediatric and adult patients and their visitors. Joanna Briggs Institute Library of Systematic Reviews, 7(2), 38-79.

American Association of Critical-Care Nurses. (2011). AACN practice alert: Family presence: Visitation in the adult ICU. Retrieved from practice/docs/practicealerts/family-visitation-adult-icu-practicealert.pdf

Cappellini, E., Bambi, S., Lucchinim A., & Milanesio, E. (2014). Open Intensive Care Units. Dimensions of Critical Care Nursing, 33(4), 183-193.

Ciufo, D., Hader., R., & Holly, C. (2011). A comprehensive systematic review of visitation models in adult critical care units within the context of patient- and family-centered care. International Journal of Evidence-Based Healthcare, 9(4), 362-387.

Whitton, S., & Pittiglio, L.I. (2011). Critical care open visiting hours. Critical Care Nursing Quarterly, 34(4), 361-366.

From 2015 to 2020, the percentage of hospitals with accommodating visiting policies (defined as having over 12 hours a day with times in the morning and evening) increased from 32% to 73% From 2015 to 2020, the percentage of hospitals that specifically describe their policies as open/flexible/anytime to accommodate families (a proxy for fully open family presence policies) increased from 23% to 67%. (Source: CFHI Better Together Report 2020)