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Family perceptions related to isolation during COVID-19 hospitalization

Eden, Candace DNP, CPPS, CPHRM, CPHQ, NE-BC; Fowler, Susan B. PhD, RN, CNRN, CRRN, FAHA, FCNS

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doi: 10.1097/01.NURSE.0000757160.34741.37
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IN EARLY MARCH 2020 as the COVID-19 outbreak began in Wuhan, China, then quickly spread throughout Europe and finally to the US, there was a need both globally and locally to be as prepared as possible to prevent transmission among the population. As the disease first hit the Seattle, Washington area and then New York, the CDC and other government agencies were pushing out information quickly. COVID-19 numbers were gradually but steadily increasing. In June 2020, the World Health Organization reported 2,208,829 confirmed cases and 118,895 confirmed deaths in the US.1

From March through mid-August 2020, the disease had started to peak in Florida. Across the state 576,094 individuals had been diagnosed with COVID-19, with 9,358 associated deaths.2 At that time, our system had peaked on July 19 with 433 patients who were positive for COVID-19. Our facility had instituted visitation restrictions on March 23, 2020, based on the CDC recommendation at that time for visitor restrictions in hospitals and long-term-care facilities.3 Visitor limitation is still recommended at the time of this writing, but if visitors are allowed the CDC provides direction, including training and education of visitors.

The Governor of Florida extended phase 2 through executive order on July 7, 2020, which meant all visitation of patients was discouraged based on the continued recommendation to stay home as much as possible.4 It is unknown how the context of visitor limitations due to COVID-19 influenced the emotions and experiences in family members unable to physically visit their loved ones in person during hospitalization. This article details a study of the perceptions of family members related to being isolated from patients who were hospitalized with confirmed positive COVID-19.

Background

At the time this study was conducted, there was little research focused on family members of patients on isolation in which visitation is prohibited, such as during a pandemic. COVID-19 is a family affair; families were worried and afraid, and the lockdown and quarantine measures positioned families for vulnerability and risk.5 Nurses are committed to both the patient and family and possess family assessment and intervention skills that can help families heal. In July 2020, Valley and colleagues wrote a letter to the editor describing efforts in surveying ICU leaders in Michigan about changes in visitation polices.6 At that time, 98% of responding hospitals had implemented a “no visitor” policy, with 31% allowing visitors only at the end of life. Changes related to communication with families focused on telephone calls or video conferencing.

In August 2020, Murray and Swanson focused on neonatal ICUs, but their findings have implications for adult and pediatric ICUs as well.7 Stopping visitation results in increased family/parental stress, which can negatively impact the ill family member. Seeing the ill family member on camera has the potential to decrease family stress and anxiety, although it could also result in feelings of guilt from not being able to be with the ill family member.7

Previous research on the impact of the 2003 severe acute respiratory syndrome outbreak in Canada showed that visiting restrictions on relatives of long-term-care residents resulted in negative experiences for patients and families during this restricted time.8 Research participants in focus groups expressed fears, worries, frustration, guilt, and loss of control, as identified through qualitative description. Participants also commented on the emotional and mental impact of restricted visiting on their loved one, noting setbacks in spirit or mental state.8

A systematic umbrella review of eight reviews on mental health related to quarantine and isolation for infection prevention purposes found a high burden of mental health problems for informal caregivers. Interventions reported as helpful included telephone calls from social workers, facilitating contact with the resident, dispelling fears, a facility website with pandemic updates, and written information about the pandemic at the facility.9

Although current information about COVID-19 is released regularly, there are still many unknowns. Uncertainty remains a big component of COVID-19, including treatments and possible mutations of the virus. Attributes of uncertainty include probability, perception, and temporality, which are present in every situation of uncertainty.10 Uncertainty is a perception that is dynamic and fluctuates over time, in which individuals have a challenging time assigning the probabilities associated with outcomes.11

Uncertainty, a feeling associated with discomfort, may manifest itself as anxiety. Confidence and control are feelings that can lessen uncertainty.11 Confidence refers to the perception of being able to handle uncertain events, whereas control is the perception of being able to influence outcomes.

Uncertainty is a critical attribute of waiting.12 Family members constantly wait for information about their loved one who is hospitalized and isolated with COVID-19, initiating or responding to phone calls or videos. They wait at home, not in hospital waiting rooms.

Methods

This study, approved by our facility's Institutional Review Board, used a descriptive, exploratory design, and was conducted in early July 2020 through mid-August (6 weeks). A survey was created from the review of the literature related to family members with limited visitation during a pandemic and isolation practices. The survey included items about visitation, feelings, awareness, staff contact, and COVID-19 information. Family members were initially contacted by phone and then given the option to complete the survey electronically through email or to answer the questions at the time over the phone. If they did not answer the phone, a log was kept and a second attempt by phone was made within the next 2 days. Alert, oriented patients, in either medical-surgical or progressive care units, who were in isolation for at least 48 hours with a confirmed case of COVID-19, were identified by nursing staff. Investigators spoke with patients over the phone or call light system seeking permission to reach out to a family member. When patients were not able to be contacted by the investigators due to altered cognition, the next of kin or proxy was identified and contacted for approval if necessary.

-
Feeling n %
Uncertainty
   No uncertainty 6 13
   A little uncertainty 20 44
   Very much uncertain 19 42
Fluctuation of uncertainty
   Did not fluctuate 18 40
   Fluctuate a little 17 38
   Fluctuate a lot 10 22
Anxiety
   No anxiety 4 9
   A little anxious 12 27
   Very anxious 29 64
Fear
   No fear 5 11
   A little fear 18 40
   Very fearful 22 49
Worry
   Not at all 2 4
   A little worried 12 27
   Very worried 31 69
Frustration
   None 5 11
   A little frustrated 12 27
   Very frustrated 28 62
About waiting
   I did not feel like I was waiting 9 20
   I felt like I was waiting some of the time 17 38
   I felt like I was always waiting 19 42

Results

Seventy-two patients were contacted with five voicing lack of interest in having their family member contacted, resulting in a total of 67 respondents contacted initially by phone. Of those contacted, 22 (49%) family members completed the survey over the phone immediately with one of the investigators. Forty-five family members were sent a link using their email address and 23 used that link to complete the survey (51%). Twenty-two of the initial 67 respondents did not complete the survey. The final sample for analysis consisted of 45 survey responses. Seventy-eight percent of respondents were women (n = 35); 33% White, 26% Black, 22% Hispanic, and the remaining 19% chose the category of other; 36% were spouses or partners; 33% were children of the patient with COVID-19, 11% were siblings, and 11% reported “other.” Ages ranged from 20 to over 65.

Most family members (40, 89%) wanted to visit their loved one in the hospital, with only five acknowledging that they would not have visited for a variety of reasons, including the virus itself. More than half of the respondents (30, 67%) lacked total confidence that they could emotionally handle not being able to visit their family member.

Feelings regarding uncertainty, anxiety, fear, worry, frustration, and waiting were explored (see Feelings expressed by family members of patients with COVID-19). Most family members were aware of their loved one's health outcomes, but it is unknown how they were made aware, by staff or the patients themselves. One-quarter of family members recalled getting phone calls from staff with updates. No family member reported a “virtual visit” facilitated by the hospital staff. Most family members (40, 89%) called the patient or patient-care unit themselves. Family members went to a variety of sources for information including local and national news on the TV, state and national websites, and social media, but not the organization's website.

Discussion

Family members who completed the survey during midsummer 2020 would have liked to have visited their loved one in the hospital with COVID-19 and were unsure how to handle this unusual predicament of restricted hospital in-person visitation. They had feelings of uncertainty, anxiety, worry, fear, and frustration as they waited to receive information from hospital staff about their loved one. These feelings align with previous investigations of family members and restricted visiting practices, especially during a pandemic.8,9,13 Phone and video calls were limited in this group of family members.

The CDC recommends alternatives to direct interaction between visitors and patients with the use of remote communication technology.3 During the time in which the study was conducted, a comprehensive process for remote communication, verbal and/or visual, had not been fully developed and implemented. Although families reported that staff interactions did not decrease their level of fear about their loved one's diagnosis or outcome, it may have been due to little interaction and no education to staff that this was something they should specifically address when talking with family members. We did not know enough about the virus and potential patient outcomes at the time. In the future, leadership and expert providers can help with key phrases to aid in that conversation. Those families that did receive calls did not report feeling less fearful. Their fear was based on what they were hearing about the virus spreading across the country and the number of related deaths reported in the media. Family members sought information from a variety of sources including social media, and this impacted their understanding and knowledge of the disease.

Limitations and strengths

Study findings were limited to the small convenience sample (n = 45) of family member respondents and the 67 patients who gave permission to contact their family members. The sample was recruited prior to the decrease in the number of patients with COVID-19 in August 2020 and related patient-care units that were subsequently closed. A power analysis was not completed prior to the start of this study. The primary focus was on family members of patients being cared for in medical-surgical or progressive care units. Family members were contacted for recruitment and enrollment over the phone, but contact was not always made. The same was true for patients; investigators called into patient rooms via the phone or call system but not all patients chose to answer. An additional limitation was that those conducting the study did not speak Spanish, which limited the inclusivity of the study population. The study was conducted at three different sites within one healthcare organization and although there were similar isolation and family contact practices, there were differences as well. The survey was constructed from a review of the literature, but formal validity was not confirmed. A strength of the study reflects the willingness of family members to talk with investigators and offer their perspectives.

Implications for practice

Nurses provide holistic care for the family unit—both patients and families—but safety is paramount. During a pandemic, safety focuses on personal protective equipment (PPE), isolation practices, and subsequent visitation policies aligning with state and national recommendations. When in-person family contact is prohibited or limited, nurses need to collaborate with other team members to facilitate timely and frequent communication between hospital staff, patients, and family members. Phone calls or video visits could be scheduled so family members do not feel like they are waiting for information but expecting it.

The right equipment is needed at the right time for the right reason. Increased communication may reduce feelings of anxiety, worry, and fear in family members. Having regularly scheduled updates for the family with some personal feedback from the patient and the family may provide a greater feeling of connection while isolated.

Based on study findings, attention should be given to implementing in-person visitation of patients with COVID-19 to whatever degree is appropriate and safe, so nurses and other members of the healthcare team are empowered to provide comprehensive patient- and family-centered care. Broadening visitation with specific education for the family and patients on how to stay safe and use PPE correctly while having short visits in person is something to consider putting into place. Having targeted conversations with leaders and staff to discuss how best to handle expanded visitation will be key for reduced stress and anticipation of barriers the staff may have.

During the study, families of patients who were receiving end-of-life care did come to the hospital and were provided the opportunity to physically be with their loved one and make decisions regarding treatment. This practice has continued at the facility. In September 2020, visitation of patients with COVID-19 was expanded throughout our facility but limited to one visitor, for a maximum time of 30 minutes, after education and training for donning and doffing PPE was provided by nursing staff and the guest services department. In May 2021 our visitation instructions changed again to include more family members than one using iPads outside the patient's room. We had not allowed pediatric visitation even for patients who were not COVID-positive; with the latest update, we now allow minors 3 years and older as a second visitor for a patient who is not COVID-positive in the facility. Additionally, the Florida Division of Emergency Management released a new emergency order (20-009) on September 1, 2020, which lifted restrictions for visitation in long-term-care settings.14

Summary

The COVID-19 pandemic has changed the way we practice patient- and family-centered care, especially in terms of visitation policies and practices. Healthcare facilities follow visitation guidelines and recommendations from state and federal agencies. Study findings illustrate the emotional anguish family members experience when not allowed to physically visit their loved one who is hospitalized with COVID-19 and receive limited information on the patient's status. Alternative visitation practices and communication strategies should be developed and hardwired for consistency and quality of communication.

REFERENCES

1. World Health Organization. Coronavirus disease (COVID-19) situation report–153. 2020. www.who.int/docs/default-source/coronaviruse/situation-reports/20200621-covid-19-sitrep-153.pdf.
2. Florida Health. Florida Department of Health issues daily update on COVID-19. 2021. www.floridahealth.gov/newsroom/2020/08/081720-1556-covid19.pr.html.
3. Centers for Disease Control and Prevention. Management of visitors to healthcare facilities in the context of COVID-19: non-US healthcare settings. 2020. www.cdc.gov/coronavirus/2019-ncov/hcp/non-us-settings/hcf-visitors.html.
4. State of Florida Office of the Governor. Executive Order Number 20-166. 2020. www.flgov.com/wp-content/uploads/orders/2020/EO_20-166.pdf.
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9. Hossain MM, Sultana A, Purohit N. Mental health outcomes of quarantine and isolation for infection prevention: a systematic umbrella review of the global evidence. Epidemiol Health. 2020;42:e2020038.
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14. State of Florida (Division of Emergency Management). Emergency order 20-009. 2020. www.floridadisaster.org/globalassets/covid19/dem-order-20-009-signed.pdf.
Keywords:

COVID-19; family visitation; isolation; visitation policy

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