Understanding Experience of Patients With Highly Infectious Diseases During Extended Isolation: A Design Perspective

Abstract

Objectives:

This study aimed to develop a better understanding of the unique needs of patients with highly infectious diseases and their perceptions of being placed in isolation. We explore the subjective experiences of patients treated for Ebola in a biocontainment unit (BCU) and the healthcare personnel who cared for them.

Background:

The 2014 Ebola outbreak and the COVID-19 pandemic have brought to focus some major challenges of caring for patients with serious infectious diseases. Previous studies on BCU design have looked at ways to prevent self- and cross-contamination, but very few have examined how the built environment can support an improved patient experience.

Method:

A qualitative study was conducted with four patients treated for Ebola and two critical care nurses who provided direct care to them at a single BCU in the U.S. Data were collected through in-depth semi-structured interviews to capture the actual patients’ perception and experience of isolation. The interviews were analyzed using the thematic analysis approach.

Results:

The Ebola patients placed in source isolation perceived the BCU as an artificial environment where they lacked control, agency, autonomy, and independence. The physical separation from other patients, visitor restrictions, and staff wearing PPE contributed to feelings of social and emotional isolation, and loneliness.

Conclusions:

The isolation can take a toll on physiological and psychological well-being. A thoughtful design of isolation units may improve patients’ experience by supporting human and social interactions, empowering patients through space flexibility and personalization of space, and supporting a more holistic approach to isolation care.

Keywords

Isolation patient experience highly infectious diseases biocontainment units design

The term “biocontainment unit” (BCU) is used to describe an isolation unit designed to care for patients with highly infectious diseases that pose an extraordinary public health risk. Specifically, BCUs are artificial, highly restrictive environments where patients have little control, potentially resulting in feelings of reduced autonomy and self-determination, along with disrupted human interaction (Vottero & Rittenmeyer, 2012). The long convalescent period for Ebola virus disease (EVD), combined with concerns of spreading lethal pathogens to the general public, have resulted in treating EVD patients in isolation for several weeks with minimal physical human contact. Many of the BCUs established in response to the 2014–2016 Ebola outbreak to increase the U.S. capacity to provide care for patients with high-consequence pathogens were among the first to activate for patient care in the early weeks of the Coronavirus disease 2019 (COVID-19) pandemic (Flinn et al., 2021).

There is an emerging body of research examining the design of BCUs and the safety of frontline healthcare workers (HCWs; DuBose et al., 2018; Garibaldi et al., 2016; Herlihey et al., 2017; Lenaghan & Schwedhelm, 2015; Wong et al., 2019; Zimring et al., 2018). However, the experience of patients with confirmed serious infectious diseases such as Ebola or COVID-19 who must undergo complete isolation received much less attention (Hsiao et al., 2021; Jung & Jun, 2020; Panchal et al., 2020).

In this qualitative study, we explore the actual reported experience of the patients treated for Ebola at a single BCU in the United States, as well as the experiences of critical care nurses who provided direct care to these patients. We argue that the physical environment plays an important role when it comes to the perception and experience of isolation. We propose specific design interventions that may relieve the adverse effects of isolation, contribute to the physical and psychological well-being of persons treated for highly infectious diseases, and support an approach to biocontainment care that focuses on the experience of the patient.

We argue that the physical environment plays an important role when it comes to the perception and experience of isolation. We propose specific design interventions that may relieve the adverse effects of isolation, contribute to the physical and psychological well-being of persons treated for highly infectious diseases, and support an approach to biocontainment care that focuses on the experience of the patient .

Patients’ Perception of Prolonged Isolation

Whereas little is known about the experience of isolation in BCUs (both immunocompromised patients, placed in protective or reverse isolation, and patients with infectious diseases, placed in source isolation), studies of other medical isolation settings have examined the demands and stressors on isolated patients (Catalano et al., 2003; Collins et al., 1989; Gammon, 1998; Gaskill et al., 1997; Jones, 2010; Knowles, 1993; Linda Barratt et al., 2011; Parkinson, 2006; Purssell et al., 2020; Rees et al., 2000; Shaban et al., 2020; Vottero & Rittenmeyer, 2012). The outbreak of COVID-19 has led to increased interest in the negative consequences of (prolonged) isolation of highly infectious patients (Hossain et al., 2020; Shaban et al., 2020). Four themes emerged from this literature: (a) perception of the physical environment; (b) psychological and physiological effects of isolation; (c) perception of social interactions in isolation; and (d) patients’ perception of care-delivery in isolation.

Patients’ perception of the physical environment

In the literature, patients in isolation have reported that the institutionalized room character was uninviting, and they preferred a more homelike setting (Stajduhar et al., 2000). The “novelty of the environment” was linked to a feeling of uncertainty and loss of control (Gammon, 1998). Studies found that the lack of space was frustrating; patients felt “imprisoned and shut-in” or confined, had a sense of being disconnected from the world outside, and they believed it hindered their recovery (Knowles, 1993; Shaban et al., 2020; Vottero & Rittenmeyer, 2012). In a recent study, some COVID-19 patients reported that the physical layout of the hospital rooms restricted their movement and opportunities for physical activity (Shaban et al., 2020). The ability to walk around the room was sometimes seen as a step toward recovery (Knowles, 1993). Patients reported that isolation made them feel “trapped like a caged animal” and punished for being ill (Stajduhar et al., 2000).

Isolated patients tend to develop a heightened sensory perception of their surroundings and extreme sensitivity to smells, touch, and noise (Gaskill et al., 1997). While patients did not have difficulty adapting to beeps from intravenous (IV) equipment, they perceived the background heating, ventilation, and air conditioning sound as noisy. Additionally, the cleanliness of the environment was essential for the patient’s experience (Campbell, 1999; Vottero & Rittenmeyer, 2012). Having a window with a view to the outside was considered helpful in coping with isolation, boredom, and feelings of loneliness, providing a great contrast to the immediate surroundings (“the world outside was full of animation and color”; Gaskill et al., 1997). Windows to corridors were considered important because they provided visual contact with staff and visitors. In contrast, a lack of view to the outside contributed to sensory deprivation (Linda Barratt et al., 2011). While in isolation, sleep is seen as a pleasant way to pass the time, and patients report feeling distressed by being woken for care activities that could be delayed (Campbell, 1999; Collins et al., 1989).

Patients considered the amenities in the room more important than the room’s dimensions or layout, which suggests that negative experiences of isolation might be at least partially relieved through bringing in items that promote independence and allow for control, like a coffee maker, refrigerator, or exercise bike (Gaskill et al., 1997; Linda Barratt et al., 2011; Stajduhar et al., 2000). Having a clock in the room allowed one to plan daily routines and created a sense of control while in isolation (Linda Barratt et al., 2011). Patients had different reactions to having framed prints in the unit: While some found them inspiring, others wanted the photographs changed every now and then. The importance of having privacy and control in the confined environment was frequently noted and recognized as successful coping strategies; for example, patients preferred quiet time with dimmed lights, the ability to close the blinds if the sunlight was too bright, and control over furniture placement (Collins et al., 1989; Gaskill et al., 1997; Linda Barratt et al., 2011).

Psychological and physiological effects of isolation

Isolation can have adverse psychological and physiological effects. Previous research found that even healthy human subjects placed in isolation for long periods experienced “abnormal perceptions and sensations” (Linda Barratt et al., 2011). For one COVID-19 patient, the adverse psychological effects became more significant as the duration of isolation increased (Shaban et al., 2020). Isolated patients are “physically, socially, and emotionally concealed from the external environment,” and they have much greater feelings of anxiety and depression, along with lower self-esteem and sense of control, compared to patients in routine hospitalization (Abad et al., 2010; Gammon, 1998; Gaskill et al., 1997; Hossain et al., 2020). Staff reported that patients demonstrated anxiety, agitation, regressive behavior, mood disturbance, depression, and sometimes even schizoid behavior. Concurrently, patients reported fear, stress, loneliness, abandonment, a low sense of control, a feeling of monotony, and low self-esteem (Knowles, 1993; Linda Barratt et al., 2011). These psychological effects can lead to worse physiological outcomes because anxiety can increase infection resistance and increase susceptibility to illness (Glaser & Kiecolt-Glaser, 2005).

Patients’ perception of social interactions

Physical separation contributes to social isolation, accompanied by feelings of abandonment and loneliness, which can prolong recovery (Linda Barratt et al., 2011). Patients feel socially and emotionally disconnected from their significant others (Cohen et al., 2001). This situation was described as a downward spiral; the “isolated patient feels depressed because of the situation and needs more contact, but in fact, receives less and thus becomes more depressed because his needs are not met” (Knowles, 1993). While generally being in touch with family and friends is crucial to providing emotional assistance in coping with the situation, some patients feel uncomfortable being seen in ill health, preferring to be left alone (Campbell, 1999; Cohen et al., 2001; Collins et al., 1989; Gaskill et al., 1997). Media, such as TV, radio, videos, and telephone, are considered to be “extensions to the world” and an “escape from the isolation,” and these diversions can help patients alleviate the feeling of social isolation, but they are also used as a pastime (Collins et al., 1989; Rees et al., 2000; Stajduhar et al., 2000; Vottero & Rittenmeyer, 2012). In addition to communication with family and friends, patients expressed the desire to interact with previously isolated patients who can empathize (Collins et al., 1989).

HCWs providing biocontainment care must wear full PPE, which often conceals their faces making it difficult for patients to recognize personnel (Clavelle et al., 2013). This was particularly highlighted during the COVID-19 pandemic when for many HCWs, the experience of engaging and communicating with patients with a highly contagious illness was entirely new (McCarthy et al., 2021). While facemasks are an effective preventive measure to mitigate pathogen transmission, especially the airborne transmission of SARS-CoV-2, they also present a “psycho-social” barrier to provider–patient interaction and communication (Padhy et al., 2020). Not being able to see the staff’s faces intensified feelings of “aloneness and abandonment,” increased stress levels, and aggravated social isolation and stigma by making patients feel “very dangerous for society” (Campbell, 1999; Gaskill et al., 1997; Knowles, 1993; Linda Barratt et al., 2011). Patients reported that they learned how to communicate by looking at expressions in the staff’s eyes alone (Collins et al., 1989). It was found that “not being touched” or not “being able to touch” was one of the biggest constraints for social interaction (Collins et al., 1989).

Patients’ perception of care-delivery in isolation

Previous studies found that while patients appreciate the care provided to them, they believe that nursing personnel lacks a complete understanding of their experience in isolation, focusing solely on medical aspects of care (Gaskill et al., 1997). Caring for isolated patients who are particularly vulnerable requires a “holistic” approach, considering their mind and spirit, as well as the body, and addressing detrimental psychosocial outcomes that occur as a result of isolation (Gammon, 1998; Vottero & Rittenmeyer, 2012).

Psychological needs are less important during the early days of isolation when treatment itself is so critical, and complications can prevail over the feeling of loneliness (Collins et al., 1989; Gaskill et al., 1997). The isolation setting results in increased dependency on nursing staff. Patients sometimes felt like infants, displaying different reactions to the situation, from regression to assertively trying to maintain self-autonomy (Collins et al., 1989). Those who took an active role in their own care reported feeling useful and therefore found it easier to reclaim their self-esteem (Gammon, 1998).

The identified themes provided insight into patients’ experiences in isolation and helped form a structure for organizing categories of patients’ responses. Some of the experiential aspects, but not all, can be addressed through the built environment.

Method

To assess the experiences of patients admitted to a BCU in the United States, we adopted an exploratory method relying on previous literature and qualitative information obtained from in-depth semi-structured interviews. The analyzed unit consists of two patient rooms that resemble intensive care unit (ICU) rooms, connected by a large anteroom in the middle. Each room has an exterior window and a window to the anteroom that (in addition to the built-in communication system) allows for patient observation, staff communication, and communication with family. The rooms have negative air pressure, include a private bathroom, and are equipped with standard ICU furniture (see Figure 1 and Figure 2).

Figure 1.
The layout of the analyzed biocontainment unit. The large anteroom (3) is in the middle. Each room has an exterior window (2) and a window to the anteroom (1). Each room has a private patient bathroom (4) and a standard intensive care unit hospital bed (5).

Figure 2.
The photos of the analyzed biocontainment unit. The large anteroom (3) is in the middle. Each room has an exterior window (2) and a window to the anteroom (1). Each room has a private patient bathroom (4) and a standard intensive care unit hospital bed (5).

Sample

Participants (N = 6) consisted of four patients treated for EVD during 2014 (two males and two females, ages 30–59 years at the time of admission to the BCU) and two critical care nurses who cared for the patients. Patients were in isolation between 14 and 40 days. Participants were accessed by convenience through the researchers’ professional network.

Data Collection

The research was approved by the Institutional Review Boards of Emory University and the Georgia Institute of Technology (protocol code H17465, approved on December 6, 2017). Participants received the description of the study and gave verbal consent. Consent included the right to stop the interview at any time. The interviews with the patients were conducted via phone, whereas the nurse interviews were conducted in person, and all subjects gave consent to being audio-recorded. The interviews were conducted from July to November 2018 and lasted approximately 1 hr. The recordings were transcribed and de-identified to protect participant identity. Study participants were then assigned a number in the order in which we interviewed them (Patient 1—P1; Nurse 1—N1) and not in the order in which they were hospitalized and treated for EVD.

The interview questions were organized according to the four themes identified from the literature scan: (a) perception of the physical environment of the unit; (b) psychological and physiological experience of isolation; (c) perception of social interactions with staff, friends, and family; and (d) perception of care-delivery (Table S1). HCWs were also asked to describe their experiences while providing care to patients. Since the focus of this study is built environment, we asked questions regarding the design of that particular unit and what, in their opinion, could help improve the patient experience.

Data Analysis

After transcribing all the audio recordings, we conducted a thematic analysis of the interview transcripts. Based on the literature review, four themes were defined a priori, thus adopting a deductive, top-down approach (Braun & Clarke, 2012).

Three researchers read the interview transcripts, and all interview quotes related to the four literature-based themes were selected and detached from the text. The quotes from each theme were then clustered in categories by meaning by four researchers in two 3-hr group meetings. In total, 13 categories of responses emerged from the interviews. Consensus was reached before assigning each quote to a specific category using triangulation (Seale, 1999). Researchers reviewed the set of quotations to ensure they were correctly classified and that themes were distinct in meaning. Quotes were reassigned to other themes when needed.

Results

Patients’ Perception of the Physical Environment

The quotes were grouped into 13 categories by the similarity of meaning, organized according to the four themes identified in the literature. The categories refer to patients’ experiences with an emphasis on the built environment of BCUs. Most of the categories were divided into subcategories to allow for easy identification of different nuances in our results (Figure 3; Table S1).

Figure 3.
Major themes identified through a literature scan and categories of responses of patients’ lived experiences while being treated for Ebola virus disease in a biocontainment unit.

The analysis revealed the way in which patients perceived the physical environment of the BCU changed during the course of their isolation (Table S1. Theme A). They reported a reduced awareness of the surroundings at first, as they were “too sick to care” about the design of the unit. One of the patients explained this feeling when asked how she felt about not being able to control the light in the room.
You know what, when you’re so sick like that, those kinds of things really don’t matter. (P2)

Some patients reported that once they started recovering, their level of situational awareness increased, and they began having trouble adapting to the BCU’s institutional and sterile character. Low room temperatures, noise from medical equipment, the smell of cleaning products (bleach and alcohol), electric lighting that never gets turned off, and the small size of the room became sources of negative experiences. Fragments from one of the interviews elucidate this theme:
I would get frustrated [with the temperature] because I was freezing from the very time I woke up…and was constantly freezing. […] [The noises were constant]. I remember actually in cold nights and the dark with a little bit of light and that dialysis machine beeping—that’s a strange feeling as well. […] I hated having [to smell] alcohol wipes, that feeling of your blood is about to get drawn or something; it almost was agony for some reason, that sensation. [The lighting of my room], like most hospitals, had fluorescent light. And then everything combines, especially when you’re seeing people in space suits, and technology is everywhere to give that general feel. It is a very white fluorescent light. [The room] was small and was quite full because there was a big dialysis machine right next to my bed. (P4)

Psychological and Physiological Effects of Isolation

In terms of psychological and physiological effects of isolation (Table S1. Theme B), results suggest five types of possible impacts: Three were identified as negative, one that reveals patients’ coping strategies, and one theme related to the recovery process. The first negative impact was spatial and temporal disorientation of isolated patients.
I think when I first woke up, it was a shock that that much time has passed. There was a whiteboard on the wall that had the day or number of days […] I remember my birthday happened while I was in the unit- that was a landmark. I wasn’t aware of this, but they had a cake, and I don’t think I was fully conscious yet. I remember having a birthday celebration so that, that was probably the landmark. (P4)

During isolation, the lack of agency that patients felt became evident in two senses: the subjective effect of feeling dependent and the objective fact of not being in control of their environment. These feelings were observed in P3’s interview:
I missed doing stuff for myself. Like regular stuff, like cooking, and laundry and washing dishes. Being able to move about like I want, like going outside, feeling fresh air and sunshine. (P3)

The isolation was perceived as confining, and patients reported that it felt like being in a zoo.
There was glass, one of the walls was like a window, and people could come in and kind of see and not really interact with me but look at me. (P3)

The overall experience was alienating since “the PPE is a terrible barrier to the normal kind of sacred interaction that happens at bedside between a healthcare provider and a patient” (P4). Only after patients became aware of the severity of their illness did they accept the need for isolation.

Patients used different tactics and strategies to cope with the isolation and regain fitness or muscle tone lost due to deconditioning, such as playing NERF basketball. Other methods were intellectual, including reading or using different media, primarily digital, to keep up with the news. Having a window with a view to the outside was another highly valued way to feel connected to the rest of the world, even though it was not always available. Additionally, faith was a way to cope with isolation, including activities such as reading the Bible. External indications of their progress, such as when nurses stepped down their PPE, had a positive effect on patients’ experience. Personalizing the space by bringing family photos or personal clothes and maintaining the normalcy of life contributed to progress. Despite the attempt to use these coping strategies, engaging in some activities was not always easy.
I tried to read, but reading was really difficult. I had some visual issues, and so it was hard to concentrate and to read. I tried to read, but that was about it. TV was my big distraction. (P2)

Patients’ Perception of Social Interactions

We have identified four categories of negative perceptions of social interactions (Table S1. Theme C). Some of the patients reported they were not always able to have a private conversation with loved ones or visual privacy for self-care and hygiene, and one of the nurses explained this:
Can you imagine having diarrhea and having to get up out of that bed, sit on a bedside commode, not only with another human in the room that you don’t know but other people out there, looking in? Oh gosh, it’s the sounds, it’s the smells, it’s the everything, it’s terribly dehumanizing. (N1)

The need to be socially and emotionally connected was a recurring theme in the interviews. The only type of human physical contact patients had was with the care providers; even the simplest acts of kindness were recognized and highly valued. Communication with family members and friends was an essential source of social interaction and support that helped reduce the feeling of isolation. Patients appreciated the communication with external contacts via phone or computer-based calls but found it unsatisfactory compared to the physical presence. Loved ones’ visits and visual contact were prized as the most meaningful type of interaction, even though it occurred through a glass window (Figure 2).

Contact with larger groups of people (e.g., family and friends) was more challenging to manage due to the limited space in the anteroom. Only one visitor could be in the anteroom at a time, so family members would stand together outside in the parking lot and wave and communicate with the patient through the exterior window. Due to the intense media interest in EVD patients, that window was subsequently frosted to protect the patient’s privacy.
All of my brothers and sisters came to visit, and there was no way that they could all go into the anteroom at the same time. They came in, one at a time, to visit me and talk on the phone intercom thing with me. But they could all be together out there in the parking lot and look up and talk to me, pass around the phone, and so that was cool. (P1)

Even though there were many opportunities for social interactions, patients missed tactile contact, noting that they were never touched without gloves. However, patients found some comfort in having mediated contact with their loved ones by placing their hands together on either side of the glass to the anteroom. This example was referred to as more pleasurable and meaningful than virtual contact.
When [my loved one] came, I walked to the window, and we put our hands on the window, and it was a really sweet moment that had we had the computer screen, that would not have been the same, I’m sure. (P2)

We identified conflicting feelings regarding being alone—on the one hand, the presence of another person was desired and provided comfort; on the other hand, patients were observed most of the time and felt they had no privacy. This was previously identified as a “dichotomy of aloneness” (Kelly-Rossini et al., 1996; Vottero & Rittenmeyer, 2012).
And at night, though, I hated it in some ways because it was freezing, and I was not sleeping. But there was something that was nice [because it felt good], just being more alone or being more private or a little quieter. (P4)

Patients’ Perception of Care-Delivery in Isolation

Two findings revealed patients’ perceptions of care delivery in isolation (Table S1. Theme D). First, there was a sense of security from having the physical presence of a care provider, being touched, and being reassured by HCWs. Even sounds like listening to music or poetry read to them provided comfort.
During the period of time, even when I was unconscious, my mom would come in. And they would play the music that I loved, and she would read poetry that I loved. (P4)

Second, patients also reported gratefulness for care providers who performed unpleasant tasks under arduous conditions; they recognized the discomfort the HCWs experienced wearing PPE for hours and valued their performance of repetitive procedures (e.g., cleaning human excrement and sterilization). The staff also verbalized how supportive they tried to be and provide compassionate care to patients.
So, there are times when we’re already cleaning somebody, and they’re like, “oh, I have to go again!” and I’m like, “I mean, that’s what I’m here for.” I’ll be here 12 hours; you’re fine, go ahead and go […] I agree that powerlessness can be very difficult. (N2)

While each of these quotes represents the perspective of individuals, they paint a very descriptive picture of the challenging conditions that these patients experienced. By seeing the BCU through their lenses, we were able to understand how the built environment contributed to those experiences.

Discussion

The interviewees highlighted several different ways in which the built environment affected them during their stay, providing a great starting point for using design to improve patients’ experience in isolation. We suggest physical environment interventions that address four major themes and 13 categories identified in published literature and information obtained from patients’ responses (Table S1).

The interviewees highlighted several different ways in which the built environment affected them during their stay, providing a great starting point for using design to improve patients’ experience in isolation .

When it comes to patients’ perception of the physical environment (Theme A), many findings echo the general experiences of ICU patients. Patients reported that the room environment compromised their comfort through the loud, reverberant soundscape and harsh lighting conditions. Constant bombardment by beeping and humming of medical equipment is stressful and particularly discomforting during the night when patients are attempting to sleep (DuBose & Hadi, 2016). Rooms should be designed to minimize the intrusion of external noises, and the care process needs to be tuned to limit noise at night (MacAllister et al., 2016). The introduction of positive and healing sounds such as music or nature sounds may improve the patient experience—keeping in mind how these will be controlled so as not to compromise autonomy, as discussed below. Dimmers and strategically placed lights can also provide adequate lighting for specific tasks throughout the night. Red lights can give HCWs the necessary visibility to monitor sleeping patients without disturbing them (Hadi et al., 2016).

The interviews highlighted some specific needs of isolated patients treated in the BCU that can be addressed with design interventions. Patients reported that the small room size resulted in a cluttered environment once necessary materials and equipment were brought in. One of the most common complaints was about the temperature in the room, which was kept cold for the comfort of the HCWs wearing Ebola-level PPE, and the high air exchange rates required for a BCU. One solution is to provide heat locally, in the patient’s area, such as a heated pad on the mattress. Another strategy for balancing the temperature difference is to design the bathroom to allow visualization of the shower from outside so that patients can enjoy hot showers without overheating the HCW in PPE.

In terms of the psychological and physiological effects of isolation (Theme B), patients valued having control of their schedule and environment. Promoting independence can be achieved by providing small items like a tea/coffee maker or refrigerator or even an exercise bike. However, bringing items into a BCU presents an additional challenge because all these items must be decontaminated and possibly discarded at discharge. Strategies include giving a higher level of independence to the patient, allowing personalizing the space through simple choices like the placement of the furniture, allowing for control of the amount of light in the room by opening blinds, and the ability to play music, enabling patients to maintain a sense of control.

When it comes to the perception of social interactions (Theme C), study participants valued the ability to directly see their friends and family through the window to the anteroom. The emotional support and reassurance they received were seen as “incredibly meaningful” (Patient 1). Isolation can result in detrimental long-term psychological effects that may be mitigated by maintaining contact with the outside world (Linda Barratt et al., 2011). BCU configuration that includes a waiting/conversation room dedicated to family visits with a full-length window to the patient’s room can enable uninterrupted visualization and communication. Having a window with a view to the outside and orienting the patient’s bed toward the window can help the patient cope with isolation by connecting them to the outside world and providing a positive distraction, in addition to affording access to natural daylight.

The lack of privacy that was frequently identified as a major concern in the BCU can be addressed by using electronic privacy blinds on all interior and exterior windows with patient-accessible controls. Additionally, PPE presented a physical barrier to social connectedness with nursing personnel, consistent with the findings previously reported by Wong et al. (2013). That challenge can be mitigated by selecting PPE with a large, clear face shield that allows for facial expressions to be seen or by wearing a preprinted large font adhesive sticker badge on the outside of the gown stating HCW’s name and role (Roderick et al., 2017).

Interviewees also expressed the desire for support from previous BCU patients, a finding which was also reported in a study with patients undergoing autologous bone marrow transplant procedure (Collins et al., 1989). At one point, there was a patient in each of the two BCU rooms, and they found comfort in seeing and communicating with each other via the windows into the anteroom. Another consideration is that reliable wireless internet access with a personal tablet, computer, or phone can enable a patient to frequently communicate with the outside world at their own convenience—this introduces a sense of individual agency.

Finally, in terms of patients’ perception of care-delivery in isolation (Theme D), staff can establish a better rapport if the patients can see the face of the HCWs either through a window to the anteroom before they don the PPE or by using PPE hoods with a larger, clear face shield.

This study has its limitations. Our qualitative study had a small sample size (four patients and two nurses). In 2014, 11 cases of EVD were reported in the United States, with two patients succumbing to the disease and nine patients recovering after receiving treatment in a BCU, and we interviewed four of them. All the interviewees were treated or worked in the same BCU, limiting the experience to a single context. Increasing the study’s sample size would improve the reliability of the data and increase the likelihood of identifying common topics and perceptions of isolation.

Conclusion

Dealing with seriously communicable diseases is a significant clinical challenge. Using the case of Ebola patients treated in the BCU, this study aimed to illustrate the experience of patients with high-consequence pathogens and their perceptions of being placed in isolation. This work completes previous studies that reported adverse effects of isolation in patients by identifying their holistic needs and means for addressing these unmet needs (Abad et al., 2010; Purssell et al., 2020; Sharma et al., 2020). Providing care in the BCU setting should not only include achievement of initial physiological homeostasis of the patient but also address their basic psychological needs, such as the need for agency, autonomy, social and emotional connectivity, and support, as well as specialized mental health support services (Shaban et al., 2020). Understanding patients’ perceptions is essential for identifying opportunities and areas for improvement as well as for informed decision making and value engineering during the design process for future BCUs. This can also provide insights for the nursing staff regarding how the patients experience care delivery and how their care priorities should change throughout the treatment process.

Providing care in the BCU setting should not only include achievement of initial physiological homeostasis of the patient but also address their basic psychological needs, such as the need for agency, autonomy, social and emotional connectivity, and support, as well as specialized mental health support services (Shaban et al., 2020) .

During the 2014 EVD outbreak, healthcare systems developed the ability to successfully isolate and treat very ill patients without the virus spreading to the community. However, very few studies examined the experiences of isolated patients during major infectious disease outbreaks (Deng et al., 2021; Fiore et al., 2021; Khan et al., 2020). A recent qualitative study of nine patients with COVID-19 in Taiwan highlighted that prolonged hospital isolation caused a psychological burden, increased the disease stigma, and intensified fear of returning to society (Hsiao et al., 2021). As this research has shown, the isolation of patients can take a toll on their physiological and psychological well-being even while recovering from the disease. Even fewer studies explicitly focused on how the built environment can contribute to the adverse effects of isolation, and as of this writing, no studies have examined how the isolation unit’s design impacted the physical and mental stress of hospitalized COVID-19 patients. We have begun the process by listing concrete steps that healthcare systems can take in the design and operation of their biocontainment and isolation units which can improve patients’ experience during isolation, mitigating the long-term effects of containment-based care. These findings may also be applied to ICU and other long-term care settings such as hospice or nursing homes for the elderly, where people may experience similar feelings of isolation.

As this research has shown, the isolation of patients can take a toll on their physiological and psychological well-being even while recovering from the disease .

The strategies provided in Table S1 are just a starting point based off known strategies from the field of evidence-based design. Now that we have called attention to these needs, future studies should do targeted research to develop and test effective and safe ways to enhance patients’ experience during extended stays in BCUs.

Implications for Practice

This qualitative study offers an enhanced understanding of the role of space in patients’ experience in BCUs, for both healthcare designers and nursing staff.

This research has revealed that isolation can take a toll on patients’ physiological and psychological well-being while they are recovering from the disease and that mitigating adverse effects of isolation is crucial for ensuring holistic care.

Healthcare systems can incorporate the proposed strategies into the design and operation of their biocontainment units in order to improve patients’ experience during isolation and mitigate the long-term effects of containment-based care.

This study findings may also be applied to intensive care units and other long-term care settings where people may experience similar feelings of isolation and loss of autonomy.

Supplemental Material

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Supplemental Material, sj-pdf-1-her-10.1177_19375867221128916 for Understanding Experience of Patients With Highly Infectious Diseases During Extended Isolation: A Design Perspective by Zorana Matić, Maria F. Wong Sala, Leandro Miletto Tonetto, Gabrielle Conrad Campiglia, Jill Morgan, Jennifer R. DuBose, Craig M. Zimring and Colleen S. Kraft in HERD: Health Environments Research & Design Journal

Supplemental Material

Supplemental Material, sj-pdf-2-her-10.1177_19375867221128916 - Understanding Experience of Patients With Highly Infectious Diseases During Extended Isolation: A Design Perspective

Supplemental Material, sj-pdf-2-her-10.1177_19375867221128916 for Understanding Experience of Patients With Highly Infectious Diseases During Extended Isolation: A Design Perspective by Zorana Matić, Maria F. Wong Sala, Leandro Miletto Tonetto, Gabrielle Conrad Campiglia, Jill Morgan, Jennifer R. DuBose, Craig M. Zimring and Colleen S. Kraft in HERD: Health Environments Research & Design Journal

Footnotes

Authors’ Note

Zorana Matić, PhD, Future Faculty Fellow, Northeastern University; Adjunct Faculty, Boston Architectural College.

Maria F. Wong Sala, MS, UX Researcher at Mailchimp.

Leandro Miletto Tonetto, PhD, Professor, Research Affiliate, SimTigrate Design Lab, Georgia Institute of Technology.

Gabrielle Conrad Campiglia, BME, Research Associate, SimTigrate Design Lab, Georgia Institute of Technology.

Jill Morgan, RN, Emory University Hospital in Atlanta.

Jennifer DuBose, MS, Executive Director, SimTigrate Design Lab, Georgia Institute of Technology.

Craig Zimring, PhD, Director, SimTigrate Design Lab, Professor, College of Design, Georgia Institute of Technology.

Colleen S. Kraft, MD, Department of Pathology and Laboratory Medicine, Emory University School of Medicine

Acknowledgments

We thank Rachel Dekom, student assistant in the SimTigrate Design Lab, for her support in interview transcription. The authors thank the patients and healthcare workers who participated in the research, as well as the hospital administrative teams.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received financial support for the research, authorship, and/or publication of this article: This research was funded by Grant No. GR10002643 from Emory University.

ORCID iDs

Zorana Matić

Gabrielle Conrad Campiglia

Jennifer R. DuBose

Supplemental Material

Supplemental material for this article is available online.

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