Essential caregiver roles
The essential caregiver roles described by key informants were grouped into five main categories: (1) provide emotional support, love, comfort and companionship; (2) advocate for patient’s needs and share important medical history and information with the healthcare team; (3) support two-way patient communication with the healthcare team; (4) support healthcare decision-making; and (5) provide physical care, including nutritional support. These roles align with the concept of family caregivers as valuable members of the patient’s healthcare team and illustrate the many ways in which they support the care for and recovery of their loved ones.
Key informants described how restrictive visiting policies put in place during COVID-19 interrupted these essential caregiving roles. Patients described the important roles their family caregivers played prior to the pandemic during hospital visits and stays, with many emphasizing the value of companionship, emotional support, love, and compassion. While family caregivers described similar roles, some had emphasized that communication, advocacy, and provision of physical care were critical roles they provided, particularly for patients with cognitive impairment or communication difficulties, and/or complex physical needs.
Impacts of restrictive visiting policies
The impact of the strict ‘zero visitor’ policies implemented at the beginning of the pandemic, and ongoing restrictions, has been devastatingly negative for many patients and family caregivers, as well as for HCPs. Although some hospitals across the country have relaxed policies to allow for some family presence at the time of key informant interviews, these policies were continuing to create hardship and distress for many. Most participants used the term visiting or visitor policies to describe these policies. Use of the terms family presence and essential caregivers was limited to those patient and family caregiver informants who were active in the ‘patient advisor’ community, and a few HCPs. For those participants that were aware of the distinction between visitors and essential caregivers, there was recognition that the restrictive visiting policies put in place often did not distinguish between visitors and essential caregivers, meaning there was a negative impact on family presence. 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, which fell into four broad integrated categories (Figure 1): (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.
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Impacts on emotional and mental health. Across all three key informant groups, the theme that emerged most frequently was the impact of these restrictive visiting policies on emotional and mental health. Patients and family caregivers shared their struggles with their emotional and mental health because of the frustrations, stress and anxiety, and isolation due to the restrictive visiting policies. The impact on the emotions and mental health of both caregivers and HCPs, affected patients and the quality and safety of their care.
Patients. HCPs, family caregivers and patients all described the impact these policies had on patients’ cognitive, mental and emotional health, describing mental deterioration with respect to anxiety, depression, delirium, and dementia. Separation from loved ones created huge anxiety for patients, and particularly so when the patient had a rare and/or complex medical condition. For patients who had longer hospital stays, feelings of loneliness and isolation were common. A family caregiver described how their loved one fell into a depressive state from being isolated and apart from family:
“It was extremely hard for him. He went into a very depressive-like shutdown state where he like stopped talking to people. He got really irritable with people like doing the vital checks and stuff. Like, just simple tasks became very, very difficult for him to do. So, we had to be pretty creative and find ways to make those things possible again for him.” (08, caregiver)
One patient shared their experience during a multiple-week hospital stay that included a long stay in ICU. They experienced problems with severe and long-lasting dementia, which they believed could have been lessened by having family members involved in their care. This patient explained,
“I think for critically ill patients, or, like, patients coming out of surgery...or even patients with, like, dementia and stuff like that, where it’s a confusing time for people...where they, like, don’t know where they are...Uh, having that person that’s familiar to them, I don’t think you can replace that…Um, that was huge to me. So, I think that’s integral, is that familiar person.” (03, patient)
An additional burden described by some patients was the impacts that these restrictive hospital visiting policies had both on their family caregivers, and on loved ones and friends that were unable to visit. Patients then, also experienced increased caregiver burden due to these policies, as they worried about the stress it placed on the sole caregivers allowed in hospital. For example, one patient spoke about being worried about her two family caregivers becoming exhausted over a multiple week hospital stay. In past hospital stays it worked well for her to have a team of friends and family who could spend time with her. She described,
“So, I was only home a few days. Four, five days. And then, I was back for another nine weeks. It was between the two stints, 62 days in…So, my daughter and [partner] were my two chosen support people. And they rarely missed a day. Between either of them, probably three or four days. My daughter would come in the afternoon, and [partner] would come in the early evening…And, um, they were… absolutely exhausted. They were almost as exhausted as I was at the end of the hospital stay…they were the only ones that could come and be with me.” (02, Patient)
Other patients spoke about being worried about the impact on their children when they were unable to stay with them in hospital, or the impact on other members of a family (e.g., when sibling or grandparents) who could not be present. One patient describes the impacts on her young daughter with special needs from being apart while she was in hospital:
“…the fallout of that is that she’s had extreme behaviors. And so, we had gone from barely needing any interventions for her, for the fallout for that is we now have at least 30 hours a week of professional intervention to handle for not being able to see me just for that little bit of being in hospital.” (05, Patient)
Family caregivers. A predominant theme that emerged was the worry, stress, fear, and loneliness experienced by family caregivers when separated from those they loved. Many described how guilty they felt not being able to be there for their loved one at such a difficult time, and for their inability to offer support. Some family members described sitting in their car and crying after dropping their loved ones off at the emergency department. Others described waiting for hours to hear what had happened to their family member after they were dropped off at the emergency department or post-surgery.
Some family caregivers whose partner or spouse was hospitalized or were the lone parent able to be with their child in hospital, described feeling considerable loneliness and isolation at a time of great stress. This loneliness was often compounded because they were sometimes not able to see anyone else outside their household due to pandemic public health restrictions and felt completely on their own. In some cases, the impacts on family caregivers’ emotional and mental state contributed to deteriorating mental health, including heightened anxiety and depression.
“I think that was, like, one of the biggest impacts, that you just, kind of, carry the weight… you’re emotionally, and physically exhausted…” (06, caregiver)
Furthermore, visiting policies that limited access to only one or two essential caregivers could lead to caregiver strain and exhaustion. For example, parents who normally would share this role of supporting their child in hospital now felt entirely responsible for the care of their ill child. Parents described the pressure they put on themselves to notice everything that did not seem quite right with their child, and to remember to ask HCPs all their questions. This included parents of children with complex health and care needs, where care responsibility is usually shared by both parents and sometimes paid caregivers. One family caregiver said,
“And you’re just exhausted, right? So you’re trying to be a really good listener and communicator between your spouse or your partner, and the healthcare team who’s coming and going” (06, caregiver).
Healthcare Providers. HCPs spoke about the complex and entangled ways that both COVID-19 and the resulting restrictive family presence and visiting policies affected them and their ability to do their work, which was also observed by patients and family caregivers. These impacts fell into three overlapping categories: role strain, burnout or compassion fatigue, and moral distress, all of which affected their emotional and mental health as well as their ability to provide high quality and safe patient care.
As noted earlier, family caregivers play essential roles for patients during hospitalization. With restrictive family presence in hospitals during the pandemic, HCPs were spending more time with patients and meeting their needs. They also had to adapt to changing visiting policies and procedures during the pandemic and expressed frustration with the added time required to explain visiting policies to families and monitor visiting (e.g., who is the designated caregiver, the times the caregivers are allowed to visit, visitor sign in/out) as explained by a nurse:
“We spend certainly, more time communicating policies and, and restrictions. And then oftentimes finding that we have to defend those policies and restrictions to patients and families… I think has been quite time consuming […] it takes you away off the floor, away from your patients when you’re on the phone with their family members and not just one family member, it’s... You know, you have 25 patients, and sometimes they have multiple children or people that are calling concerned and expressing their own frustrations.” (10, HCP)
Patients and family caregivers also spoke about their views on how the combination of these restrictive policies and COVID-19 overall affected HCPs. The most dominant theme was the observation about how staff were “run off their feet”, in part because now care delivery was much more difficult. Family caregivers also described experiences where HCPs “worked around” the restrictive visiting policies to meet the needs of patients and their families. Some family caregivers described the impact on healthcare staff when visiting policies evolved to allow some family presence.
“ I found while being an inpatient [as a parent caregiver], it was very difficult…Like, the staff is so busy that I felt just horrible asking them for just basic things like water or to heat up my meal, or just anything like that. Like, I felt just horrible because they’re so busy. They’re not slaves. They’re not our servers [laughs]. They have their jobs to do. They’re already overwhelmed with all the new rules and regulations due to COVID that I feel like they should find a new way to make it a little bit safer for the families who would like to use the kitchen.” (08, family caregiver)
The role strain being experienced by HCPs contributed to burn-out and compassion fatigue. Some described taking extended leaves from work because of burn-out, and others contemplated resignation. The following quote from a nurse illustrate this:
“I went home from some shifts thinking to myself, I feel like I have just worked the heaviest patient load shift I’ve ever had and yet I only had a handful of patients. But it was all of the emotional toil and work on some of those shifts, dealing with all of these dynamics of visitors and family.” (06, HCP)
HCPs acknowledged that the restrictive visiting policies were not aligned with their usual practice of PFCC, creating considerable moral distress for them and their colleagues. They faced moral dilemmas between what they thought was best practice, best for the patient and what the policies and rules were. One nurse stated, “a lot of my colleagues are very morally distressed about having to have families split up and not being able to provide, sort of the family-centered care that we really pride ourselves on” (03, HCP).
Furthermore, some HCPs described risking their job to make exceptions for bringing in families and caregivers to be with their loved ones, especially in palliative care situations, and echoed by family caregivers. One physician described,
“An exception I made is a patient who needed palliative sedation and before we put him into coma with the palliative sedation, I snuck up both his sons, daughter and wife to be in the room with him for the afternoon. I said to the nurses, don’t look, don’t watch what I’m doing. If I get in trouble and get disciplined and I’m disciplined and you’re not, I’m at the end of my career, you’re at the beginning. But what would you do ethically? Like it honestly causes a lot of moral distress.” (07, HCP)
Impacts on communication and patient advocacy. Restrictive visiting policies affected communication between patients and family caregivers, other family members, and members of the healthcare team. Family caregivers supporting patients who were unable to effectively advocate for themselves and/or had challenges communicating were particularly worried about the potential impact of these visiting policies on their ability to communicate with members of the healthcare team, and advocate for their loved one. This included children and youth with complex health issues, people who were severely ill, and elderly people. In some cases, the family caregiver also had power of attorney and medical decision-making authority, making this particularly essential, as this patient stated:
“The power of attorney needs to be present because there’s decisions to be made…So being intubated, you’re unconscious, you’re in an [induced] coma… you really need somebody to speak for you.” (07, patient)
Patients who had complex health issues and medical histories, and those that had experienced past healthcare trauma, also identified caregiver support for advocacy and communication as being critically important for them and described how it was negatively affected by the visiting policies. One patient who experienced a high-risk pregnancy expressed how the policies impacted communication and advocacy for herself:
“I did feel like COVID policies, [were] not only making it difficult to communicate… be with and communicate with my family about my health… But it also made me feel like wishes [and]… knowledge I have about my own body and about how I wanted to birth… was not going to be taken into account, um, both because of my suddenly high-risk birth, and because of these COVID policies that would… I was worried they were going to make it more challenging to advocate for myself.” (08, patient)
Family caregivers also spoke about the difficulties they experienced trying to speak with their loved ones, when they were not allowed to be at the bedside. Connecting with members of the healthcare team, and receiving information around diagnosis and patient status, was described by many key informants as challenging. A daughter who was caring for her father, in partnership with her mother, stated:
“my mother, sometimes she would have people [referring to HCP], say oh, he’s doing the same as yesterday, and hang up on her. My mom would say, well can you please tell him that his wife has called and said she loves him...” (05, family caregiver)
HCPs also spoke of this when they described the role strain associated with ensuring patients and family caregivers were connected and updated with their loved one’s status. A nurse manager explains,
“It felt very unsafe for our desk because they [nurses] would be trying to manage a busy acute unit, and literally have multiple phones calls every five minutes, of people trying to connect to their family members. And there were many days where I went to the desk and sat there with the clinician and the unit clerk, and we just answered the phone for an hour, just to let them [nurses] catch up with their things…. We could have had a full-time staff member just running a phone, back and forth.” (04, HCP)
One way that HCPs and families tried to overcome communication challenges was using technology mediated devices, such as a tablet. Several patients explained that using a phone, tablet or computer to connect remotely with loved ones was not helpful or even possible. This was described by patients who owned a cellphone or tablet but were not accustomed to using video or text messaging and/or had a cognitive or physical disability that prevented them from communicating with others in this way. Connecting patients with their caregivers through technology, then, often required assistance from HCPs, something which HCPs did not always have the time or capacity to support.
HCPs also described the challenges some patients had connecting remotely with family and loved ones. One social worker stated,
“People were lonely and, I mean, we put in place the Facetime visits and window visits in the facility. So, we had iPads and they would have calls, family would call occasionally. But maybe only like 10% of patients there were able to interact using technology. Many of our patients have dementia… they’re also much older and they’re not used to this technology, they don’t know what it is, for many people it didn’t work” (01, HCP)
One family caregiver describes the difficulties she encountered when trying to connect with her husband who has early onset Alzheimer’s while he was in hospital.
“So, I finally got to somebody, and I explained, you know, what my concern was. I said I haven’t heard from him. I can’t hear from him. He doesn’t have a cell phone. He can’t use a cell phone[…]Uh, so they finally took a phone to his bedside and that was more confusing, I think, than anything because he, he didn’t really... He could hear me on the phone, but he didn’t... You know, he wanted me to come to him.” (14, family caregiver)
HCPs also commented on how patient advocacy and communication was affected by the restrictive family presence or visiting policies, and how this in turn could affect the patient’s safety. One physician described,
“It’s never good to be in a system of telephone, where one person gets told something and then they go and tell one other person and so on. That’s why, when we normally have family meetings, we normally have lots of family representation there. Essentially, whoever the family wants to invite. I mean, there’s a lot of safety in, in a family, a group of people, hearing the same message that they can then, sort of, reinforce to each other and clarify with each other. I think that has a lot of value …” (03, HCP)
The challenges described about communication and patient advocacy greatly contributed both to the emotional and mental health impacts on patients, family caregivers, and HCPs. The inability of family caregivers to communicate with the patient, even to simply tell them they are loved, can be very distressing for family.
Impacts on safety and quality of care. Patients and family caregivers shared examples about how a lack of family presence affected safety and quality of care for patients. The concerns about safety primarily related to falls, positioning, and medication errors. The lack of family caregivers’ presence to support communication and patient advocacy was seen as a major contributing factor. For example, sometimes patients were unable to communicate that they were in pain, and problems with communication at discharge could create potential unsafe situations. One caregiver described their family member arriving home from hospital with a drug prescription written for another patient. Another caregiver described how worried they were when having to drop their ill and frail spouse at the entrance to the hospital, knowing they had to walk a distance to get to the clinic they were attending. She was concerned her spouse might fall.
Many patient and family caregiver descriptions about a lack of quality of care related to the personal and physical care a loved one received during their hospital stay. This included being washed or bathed, having their teeth brushed, and getting adequate nutrition and hydration. Additionally, other key informants attributed poor quality of care to being unable to participate in outpatient appointments, such as cancer treatments or clinical consultations. This meant that family caregivers were not present to be that second set of ears and to ask important questions, which can result in both unnecessary and delayed testing or care. Some family caregivers expressed serious concerns about quality of care when patients were unable to communicate and/or advocate for themselves. As described earlier, one patient with a rare condition had to call their spouse to come and pick them up after their surgery, as they were struggling to make themselves heard without family caregiver help to advocate for their needs, creating a potentially life-threatening situation for the patient. HCPs also spoke about patients not receiving quality care or the standard of care, and shared examples of how the visiting restrictions put in place jeopardized patient safety as described by one nurse:
“I think patients are safest when their families are here. I think the hospital setting is absolutely overwhelming. It becomes such an unsafe time, in terms of information transfer, in terms of getting questions answered, in terms of advocating and bringing up all of those nuances of who the patient is and what’s going on. Without family there to be that advocate and stand beside them. I think it’s always a dangerous time when they’re not here.” (06, HCP)
Safety concerns were also shared by HCPs, as noted by one palliative care physician who described that some patients are not wanting to stay in hospital because of the visiting policies during the pandemic, which led to several injuries and other complications in the home.
“In hospital we sedate patients who experience delirium and treat depression. If we had essential caregivers in place. At home, because these patients aren’t coming into hospital, we have somebody with delirium that really needs nursing expertise to manage medications for the delirium. I’m giving medications to patients in the home with families to administer and I have had three patients who have then had very nasty fractures because they’ve fallen and it’s using medications that families aren’t equipped to manage or deal with. And yet they want to be with their families. They want to be with their loved ones.” (07, HCP)
HCPs often referenced role strain and lack of time as reasons why the quality of care for patients has been compromised during the pandemic. One nurse described how staff were trying to carry out their care duties in one visit with the patient to save time, and that this impacted quality of care for patients:
“We are guilty for it, where it’s like, if you’re going in with medications or to do a dressing change or vitals, um, to interact with them, to bring them their meal tray, that you, uh, for lack of a better term, try to do, like, one-stop shopping, like, just to limit that donning and doffing and you spend the time with them, and then it’s like, okay, is there anything else that you need while I'm in here? And that they do have fewer contacts with their, their health-care provider. You’d be doing your rounds and checking in on them, but it’s like, little moral distress because you're... You know that care is impacted by, uh, by the visiting policies that are in place.” (10, HCP)
PFCC, trust in the healthcare system, and future decisions regarding accessing needed healthcare. As described previously, many HCPs, and some patients and family caregivers recognized that the visiting restrictions put in place during COVID-19 created tension with the concept of PFCC. This tension contributed to the frustrations with the visiting policies described earlier, and the strong advocacy efforts mounted by some HCPs, family caregivers and patients to have family members present. It was one source of moral distress experienced by HCPs, in that they felt unable to provide PFCC in the way they previously had and wanted to.
Patients and family caregivers familiar with the concept and language of PFCC commented on how visiting restrictions that affected their ability to have family and loved ones critical to their recovery and wellbeing present while they were in hospital, was the antithesis of PFCC. These restrictive policies precluded meeting patients and families where they were at and determining with them what would work best for them during a hospital stay or visit during the pandemic. For some, this contributed to further erosion of their trust in the healthcare system, and particularly for those who have experienced some healthcare trauma in the past. An impact of this erosion in trust was fear about needing to access hospital care during the pandemic if there were family presence restrictions in place.
“My husband was willing to abide by every masking rule, PPE rule, whatever they said [referring to allowing her husband to be present at the hospital], but none of those things were asked. And in traditional patient-and-family-centered care, you would have asked that… ” (patient, 05)
Some patients and family caregivers described how restrictive family presence policies had affected, or would affect, their decisions about accessing hospital services. For example, one family member described the difficult decision they had to make with respect to taking her sibling with complex care needs to hospital after she had a fall, as they knew how incredibly difficult this would be both for that person and the family. They had delayed, hoping that they would not have to take them, but eventually there was no alternative.
“So when we decided [they were] going to…have to go to the hospital, my mom really struggled…We’ve had some poor experiences in the past at the hospital… and we just knew that perhaps only one of us could go. And my [sibling’s] physical needs are also very high…And so often they require two people to just visit because [they don’t] understand. And so doing something like an X-ray or blood work is very traumatic for [them] and very challenging…And it often requires two of us.” (11, family caregiver)
Another family caregiver described the difficult decisions that she and her siblings made about sending her mom back to hospital, as she was close to the end of her life, due to a real fear that if they did so her mom might end up dying alone.
“It was a trade-off. And if she had gone to hospital, she would have probably been given antibiotics by IV…and she would have had a chest X-ray, and, um, she, she might have made it through…But the trade-off wasn't worth it...to have my mother die alone in a hospital...” (18, caregiver)
Policy Implications and Recommendations
Because of the impacts of these policies experienced by patients, family caregivers and HCPs, inviting their perspective on what family presence policies could look like in a pandemic, was important. Key informants provided both specific policy suggestions, and what they felt were key underlying principles of these policies. These recommendations are summarized in Table 4.
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