Patients’ Experiences of Care During Hospitalization for Acute Respiratory Failure During COVID-19: A Multi-Center Qualitative Study

Abstract

Background

An improved understanding of patients’ lived experiences can identify opportunities to advance patient-centered care, particularly during times of limited healthcare resources.

Objectives

To better understand the patient experiences of hospitalization and inform the development of hospital-level strategies to improve inpatient patient-centered care.

Methods

In this multicenter national qualitative study, we conducted semi-structured interviews of patients hospitalized with COVID-19. Using thematic analysis, we organized our findings around the Levels of Personhood conceptual model.

Results

We interviewed 47 adults, including 26 (55%) who identified as female, 14 (30%) as Black, and 19 (40%) as Hispanic/Latino. Median age was 61 (IQR 49-66) and 21% of patients had ICU admissions. We identified three themes: (1) Preserving biologic personhood is important to maintain autonomy; (2) Prioritizing individual personhood is crucial for healing and medical decision-making; (3) Maintaining sociologic personhood is necessary for recovery. We identified several in-hospital interventions aimed at improving patient-centered care.

Conclusions

We identified themes describing patients’ lived experiences of hospitalization and propose a modified model of personhood that can be leveraged to study and design interventions aimed at improving patient-centered hospital care.

Keywords

clinician-patient relationship patient / relationship-centered patient experience patient perspectives / narratives qualitative methods relationships in healthcare shared decision making

Introduction

Patient-centered care has been defined as care that is respectful of and responsive to individual preferences, needs, and values.¹ Because the provision of patient-centered care is considered a key element of high-quality care,¹ there have been a variety of efforts aimed at improving patient experience as a measure of patient-centered care.^2,3 For example, the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey was developed in the 2008 by the Agency for Healthcare Research and Quality as a way to quantify patients’ experience of care during hospitalization and inform efforts to improve the quality of care provided.⁴ Analyses of HCAHPS data performed over the last few decades have identified several modifiable factors associated with improved patient experience, including a higher ratio of nurses to patients, nurse education and skill mix, and quality of the environment in which care is provided.²

More recently, there is evidence that patients’ experience of care declined during the Coronavirus Disease 2019 (COVID-19) pandemic,^5,6 which placed unprecedented strain on the healthcare system and prompted changes in visitor policies, hospital organization, and care processes to accommodate surges of patients requiring hospitalization.^7-9 Specifically, several recent studies based on survey data found that patients’ perceptions of staff responsiveness and cleanliness declined significantly during the pandemic.^5,6 While surveys can quantify patients’ perceptions of their care, it is important to simultaneously understand how patients experience their care, including the contextual factors that are difficult to elicit through quantitative measures alone. Understanding these subjective and relational dimensions is crucial to identify opportunities to improve patient-centered care and requires a methodological approach that can capture narrative, context, and lived experience. Therefore, we conducted a qualitative study to better understand the experiences of patients hospitalized during COVID-19 and inform efforts to develop hospital-level strategies that improve patient-centered care, particularly during times of strain and resource limitation. Additionally, we sought to specifically include minoritized populations who were disproportionately impacted by the COVID-19 pandemic and are often underrepresented in clinical research.

Methods

We conducted a qualitative study of patients who were hospitalized with COVID-19, all of whom were participants in the prospective cohort study (Biology and Longitudinal Epidemiology: COVID-19 Observational. i.e. “BLUE CORAL”) conducted through the National Heart, Lung, and Blood Institute Prevention and Early Treatment of Acute Lung Injury Network between October 2020-December 2022. For this study, we recruited BLUE CORAL participants who spoke English or Spanish and were hospitalized between August 2020-July 2021 and survived to hospital discharge. We used purposive sampling to enrich for Black and Hispanic patients, as well as rural-residing residents, to ensure inclusion of populations who were disproportionately impacted by the pandemic and are often underrepresented in research.^10-12 Those who were unable to interact over telephone or video call in English or Spanish and those who were already disenrolled from BLUE CORAL were excluded. We sought to recruit up to 50 participants, including 10 primarily Spanish-speaking participants. We analyzed transcripts on a rolling basis and ended recruitment after information power was satisfactorily reached.^13-15 Each participant was reimbursed $60 for participation. This study was reviewed and approved by the Oregon Health & Science University Institutional Review Board (IRB #00021778).

Data Collection

Verbal informed consent was obtained from participants prior to their first interview. Three investigators (KCV, AAH and SEG) created an interview guide that focused on experiences of hospitalization, including impact of hospital rules, coping mechanisms, changes in relationships, and aspects of social identity that may have affected the hospital course (Supplement S1). To inform preliminary analysis and refine data collection, we pilot tested interview guides with two patients prior to the first interview; these interviews were not included in analyses. Semi-structured interviews were conducted by an experienced qualitative researcher (SEG) and trained research assistant (EL). Spanish-language interviews were conducted by EL, who is fluent in both English and Spanish. We conducted interviews by phone or WebEx between May-September 2022. Interviews ranged from 13-64 minutes and were recorded and transcribed verbatim by trained research staff.

Data Analysis

We conducted thematic analysis using deductive and inductive approaches using a team-based approach. After reviewing three transcripts, SEG created a transcript summary template, organized deductively by domains from the interview guide. The templates were tested for usability with a team member (CM) who summarized three of the interviews to verify consistency. The remaining interviews were then summarized separately by SEG and CM, with summaries shared with the larger interdisciplinary research team. During the initial round of data analysis, each member of the research team described their background and professional experiences to clarify positionality. Throughout each subsequent meeting, team members were encouraged and asked about their thoughts and interpretations of the data.¹⁶ Next, SEG and CM created a preliminary codebook based on deductive and emergent findings from the transcripts. The coding process allowed for the identification of themes that did not fit into interview guide domains. Four research team members (CM, NS, KCV, AH) each subsequently coded three interview transcripts with SEG. After each joint coding session, the codebook was revised by consensus. CM, SEG and NS continued three additional rounds of coding until the codebook was consistent across researchers.

Additionally, during data analysis, we simultaneously reviewed the literature to find a model that would help organize the emergent data. Through this process, we identified the Levels of Personhood conceptual model that describes different levels of personhood as: 1) biologic personhood, in which care is focused on meeting biologic/essential care needs of a person; 2) individual personhood, in which care is focused on knowledge of the person’s values and preferences; 3) sociologic personhood, in which care is focused on one’s social connections.^17,18 Although this conceptual model has been previously used in the context of dementia care, we felt that its framework was useful to organize our qualitative findings related to patients’ experiences of care during hospitalization and inform the development of hospital-level strategies designed to improve patient-centered care in the inpatient setting.¹⁷ To ensure reliability and consistency across coders, we defined personhood as “seeing people in terms of who they are rather than exclusively in terms of whatever ailment they have.”^19,20

We used ATLAS.ti Software (v22) to organize data within this framework, code transcripts, and track analytic decisions. The analytic team shared code summary reports with co-authors to ensure ongoing agreement with findings. We utilized the Consolidated Criteria for Reporting Qualitative Data (COREQ) checklist for qualitative studies (Supplement S2).²¹

Results

Of the 884 eligible patients identified from BLUE CORAL, 562 were contacted; 47 consented to participate. Ten interviews were conducted in Spanish, and the remaining 37 in English. In total, 26 (55%) participants identified as female; 20 (43%) identified as white, 14 (30%) as Black, and 19 (40%) as Hispanic/Latino. Ten (21%) were admitted to the ICU during their hospitalization and 4 (8%) received mechanical ventilation. The median participant age was 61 (IQR 49-66); median hospital length-of-stay was 6 days (IQR 4.5-12.5) (Table 1).

Table 1.

Participant Characteristics

Participants (N)	47
Gender
Female (%)	26 (55)
Male (%)	21 (45)
Age (median [IQR])	61 [49-66]
Race/ethnicity (%)
Hispanic	19 (40)
Black	14 (30)
White	13 (28)
Other	1 (2)
Primary Language
English	37 (79)
Spanish	10 (21)
ICU admission (%)	10 (21)

In initial analyses, the concept of personhood emerged as a central domain. Although participants were not explicitly asked about “personhood” in the interview guide, this concept was discussed spontaneously and frequently by all participants. As described above, we utilized the Levels of Personhood conceptual model¹⁷ to organize data. We identified three themes that influenced patients’ experiences of care during hospitalization and impacted their recovery (Figure 1). These themes were consistent across participants, except where noted below. Representative quotations can be found in Table 2.

Figure 1.

Themes organized by levels of personhood with proposed interventions

Table 2.

Representative Quotations

Theme 1: Preserving biologic personhood is important to maintain autonomy.
Patient ID*	Quotation number	Quote
14	1	It was so gross because…you have people coming into the room and…your hair is all greasy, it’s disgusting. You feel…you can’t do enough with just the cloth. And they’re like, ‘no, don’t worry about it.’ Don’t worry about it? [I thought]- no, I might see you out in the real world.
44	2	If you have someone who needs to use the little bed pan toilets next to the bed instead of the restroom, because they’re connected to the machines, maybe making sure the nurses just close the windows and stuff before… [the nurses] were super nice about that. I’d have to be like, “can you close the curtain? [laughs] that’s just a little thing, but yeah. It’s like, do I have to ask that? I’m already dealing with having to go to the restroom next my bed.
6	3	I didn’t like it, really, because I had to share a room with… three other COVID-positive people, and- yeah, we weren’t allowed to use showers, because they didn’t want us to spread it, obviously, so they just gave us little basins and stuff like that.
Theme 2: Prioritizing individual personhood is crucial for healing and medical decision-making.
1	4	My roommate’s IV would go off at odd hours…it would keep beeping forever…because they couldn’t always come in on time.
14	5	I felt like it was like, a fishbowl…where you had all of these windows and things like that. And I get it, but I was, like, ‘can we just close them a little bit, like the shades?’. And they’re like, yeah, we just have to be able to see a little bit of you just in case…you’re having any issues breathing.
53	6	[The hospital staff] was very nice to me and everything. The doctor came in, he talked to me. He made sure I understood what he was saying. And he told me couple of times, “if I don’t change start getting better, the next step would have been a life support” And I said “I didn’t want that.” I said, “I do not want to be put on nothing.” I don’t want a ventilator or nothing.” And he said, “Ok....”
26S	7	I think that in person and more doctors who speak Spanish is good.
Theme 3: Maintaining sociologic personhood is necessary for recovery.
31	8	…They wouldn’t let me have visitors. Well, actually, that was the worst part of it. Because I couldn’t see any family. They couldn’t come and visit me. That was, you know, the toughest part. And my phone, a smartphone, and prior to my going to the hospital it was only half filled up. I mean charged up. So once it went out I couldn’t contact anybody.
10	9	It was weird, because some of [the hospital staff] were dressing in the, like, E.T. outfit when they came in, and they were using all that stuff… with the fan and all that stuff, the breathing apparatus and stuff, and then some just had face shields, and then some just the mask and stuff.
47	10	I feel like sometimes people kind of treat you, everything, like they look at you like you’re not a person anymore, it becomes a job to them and… people get very, it’s like they’re numb to how other people feel. They don’t care if you’re in pain. They don’t care… if you’re suffering, you know?

*S denotes a Spanish-speaking participant.

Theme 1: Preserving Biologic Personhood Is Important to Maintain Autonomy

Patients discussed the importance of biologic self-care (i.e., care focused on biologic/essential care needs) in preserving their autonomy during hospitalization. Biologic care activities prioritized by patients included maintaining their own personal hygiene, toileting, grooming, dressing, and mobility (quotations 1-2). Many patients described the challenges of suddenly becoming dependent on others to perform these activities because of their illness during their hospitalization. One patient noted, “The thing that made it hard…in the hospital is…that I couldn’t move on my own...I needed help doing everything from getting up to scrub my teeth, getting up to go to the bathroom, and…it was just very difficult to do anything.”

Additionally, multiple patients described how the lack of access to showers and private bathrooms made them feel alienated from their identity outside the hospital and raised concerns about how they were perceived by others. For example, one patient stated: “[W]e didn’t have access to a shower. That’s the only thing that I would complain about. Like, it was literally a little sink and a toilet, and… I was feeling like I was treated like, oh my god, an alien or something.” Another patient noted: “[T]he one downside I didn’t like was I couldn’t take a shower…because it required two people to assist me. So, you know, I had the sponge bath from the bed. I had a porta potty…it’s a dignity issue for me.”

Theme 2: Prioritizing Individual Personhood Is Crucial for Healing and Medical Decision-Making

Patients valued efforts by the care team to prioritize their individual personhood (i.e., care focused on knowledge of the patient and their embodied experiences),¹⁷ despite the chaotic hospital environment. Patients frequently described experiences in the hospital that threatened their individual personhood, negatively impacting their ability to heal (quotations 3-5). For example, patients described how sharing hospital rooms negatively impacted their recovery through a variety of mechanisms, including lack of privacy and impaired sleep. One patient recalled the vulnerability they experienced using a pull-out toilet in their room, saying: “I felt exposed a little bit just because there were so many windows.” Other participants noted how the constant noise and alarms from their hospital roommate interfered with their healing. Sharing hospital rooms also exposed patients to the trauma of seeing others severely ill. For example, one patient recalled the impact of seeing their roommate die, stating “[A] woman in the bed across from me died and I saw the body bag and me, who suffers from depression and all that, that was terrorizing to me.”

Patients appreciated when their clinicians presented treatment options clearly while acknowledging patients’ care preferences (quotation 6). However, many patients described how a lack of clear understanding of prognosis and treatment options made them feel as though they lacked agency in their own care. Several desired more detailed discussions of their values, as well as transparency by clinicians, to enhance their participation in the medical decision-making process. For example, one patient stated: “[I wish we] had more discussions about some of those optional treatments, like… the monoclonal antibody, and just better [explanation]- ‘you’re not going to get this, and this is why.’” Another patient noted, “after hearing about those other medications, I’m wondering how come I didn’t get those medicines…I know it was something that people were getting…But I feel like maybe I should have gotten some type of treatment or something for COVID, but really I just got treatment for pneumonia.”

Moreover, some patients mentioned incidences in which clinicians discussed treatment options in a confusing or even threatening way. For example, one patient recalled thinking: “the high flow oxygen really wasn’t working as much as I would have thought…I kept saying, ‘I can’t breathe.’ One of the nurses said, ‘if you tell us that one more time, we’re going to have to intubate you.’”

Finally, some Spanish-speaking participants identified language barriers as a potential impediment to communication and barrier to maintaining individual personhood. Though most Spanish-speaking patients described positive experiences with interpreter services, some felt they could have benefited from greater availability of interpreter services so that they could better participate in their own care (quotation 7). For example, one patient explained, “[T]he only [complaint] is that sometimes there are people who translate- they don’t have enough. Or you have to wait in line for [online translators] to help….” The type of interpreter services also appeared to vary widely; while some patients had clinicians who were bilingual, others used interpreters over the phone or video service and others had their caregivers translate.

Theme 3: Maintaining Sociologic Personhood Is Necessary for Recovery

Patients emphasized the importance of maintaining sociologic personhood (i.e., care focused on social relationships and human interactions)¹⁸ as part of their recovery while hospitalized (quotation 8). In the setting of COVID-19, patients noted how physical isolation and visitor restrictions harmed their connection with both their loved ones and their treatment team. One patient recalled: “They put you inside and they lock you up and they would not give access to any friend or family member.” Cell phone and video capable devices became a vital part of patients’ connection with the outside world and their loved ones.

Furthermore, many patients described how being in physical isolation and the use of personal protective equipment by clinicians impacted the frequency and quality of interactions with their care team (quotations 9-10). Some patients felt neglected by their clinicians. For example, one patient recalled, “[Y]ou’re being ignored…if you call on the call bell, somebody should at least be trying to answer it, and…nobody will. Nobody will come…god forbid you have any kind of pain or anything you might need. They’re not checking on you…[the] way they should be.” The use of personal protective equipment also interfered with communication between clinicians and patients, further threatening their ability to establish therapeutic relationships during hospitalization. One patient noted, “They were all masked and they had face shields, and…the doctors would come in and start talking fast with muffled noises and so I had to make them repeat themselves a couple of times.”

Several participants expressed desire for more connection with their clinicians, seeking to be seen as a whole person beyond their illness. For example, when discussing how to improve therapeutic alliance with their care team, one participant stated: “[J]ust giving your patients some time to connect with you would be my 2 cents. I know that in the healthcare world, you guys are always busy, but giving that opportunity to connect with the person just makes the world of a difference.”

Discussion

In this qualitative study of patients hospitalized during COVID-19, we identified three themes derived from patients’ lived experiences of hospitalization. This study adds to the literature in several ways. First, our data suggest a slightly modified model of personhood within the inpatient setting that can be leveraged to study and design interventions aimed at improving patient-centered care during hospitalization. Rather than the previously-described hierarchical model of personhood in dementia care that focuses first on sociologic personhood and then progresses through individual and biologic personhood as the disease evolves,¹⁷ our findings reveal the interconnected nature of these constructs within the inpatient setting. In doing so, we identify several potential in-hospital interventions outlined below that may improve patients’ experiences of hospital care and potentially culminate in better outcomes, organized by the Levels of Personhood conceptual model (Figure 1).

We propose that clinicians better address biologic personhood for hospitalized patients by increasing opportunities for patients to participate in self-care and grooming.²² For example, one study found that nurse-occupational therapy meetings that prioritized supporting elderly patients in solving their own activities of daily living performance problems improved patient motivation and function.²³ Working with physical and occupational therapy to set mutually agreeable daily activity goals may also help preserve autonomy through increased mobility, while simultaneously enhancing collaboration and therapeutic alliances between patients and their treatment teams.²⁴ We also propose the systematic inclusion of less-commonly measured symptoms (e.g., hunger, thirst, temperature regulation, bed comfort, and noise concerns) into regular nursing assessments of patients. This may be particularly effective on general acute care wards, where the nurse-to-patient ratio is higher than in the ICU.

Next, we propose addressing individual personhood by increasing clinician training in patient-centered communication skills and involving patients in their own care through shared decision-making processes. Prior literature has demonstrated improved communication behavior among clinicians through implementation of a large-scale patient-centered communication skills training program.²⁵ Additionally, the use of decision aids, conversation tools, and written and audiovisual educational materials has been shown to increase the involvement of patients and their families in decision-making.^26,27 Hospitals could also consider expanding the role of interpreters to cultural mediator/broker and patient advocate to better involve patients with limited English proficiency in their own care.^28,29 Prioritizing physical privacy as allowed by physical space (e.g., use of privacy screens and/or private bathrooms) may also help maintain individual personhood among hospitalized patients.

Third, potential interventions to preserve sociologic personhood in the inpatient setting include improved availability of technology (e.g., phone chargers and video-capable devices) to ensure patients can communicate with loved ones. Providing photographs and descriptions of care team members to patients and families, particularly when personal protective equipment is utilized, can be a helpful strategy to help humanize clinicians for patients.^30,31 Finally, because visitor restrictions likely threaten social personhood among hospitalized patients, it is important to better quantify the risks and benefits of such restrictions before their widespread implementation policies during future public health emergencies.

Notably, the interventions identified by patients in this study are relatively simple, practical, and easy-to-implement (e.g., a curtain for privacy, a phone charger, enough translators to facilitate communication). Although our healthcare system is often designed and/or incentivized to deliver sophisticated medical interventions and technologies, our findings reveal how it often fails to provide such basic dignities desired by patients. In this way, our study highlights substantial opportunity to improve patients’ experience of care in the inpatient setting through relatively low-cost, easy-to-implement interventions.

Strengths of our study include its large sample size with geographic representation from U.S. hospitals. Additionally, our recruitment process was enriched for Black and Hispanic patients, as well as rural-residing residents, who are often underrepresented in research.^12,32,33 Our study also has limitations. First, we conducted interviews with each participant at a single point in time and cannot exclude the possibility of recall bias. Second, participants were recruited predominantly from academic hospitals. Third, while many of the proposed limitations are relatively simple and low-cost, potential barriers to their implementation may exist (e.g., staffing constraints). Finally, the main interviewer for English interviews was a white woman, which may have impacted participants’ responses.

Conclusion

In this qualitative study of patients hospitalized during the COVID-19 pandemic, we identified three themes describing patients’ lived experiences of hospitalization organized around the Levels of Personhood conceptual model. These include: (1) Preserving biologic personhood is important to maintain autonomy; (2) Prioritizing individual personhood is crucial for healing and medical decision-making; (3) Maintaining sociologic personhood is necessary for recovery. Our study highlights substantial opportunity to improve patient-centered care in the inpatient setting through relatively low-cost, easy-to-implement interventions, particularly during times of hospital strain and resource limitations.

Supplemental Material

Supplemental Material - Patients’ Experiences of Care During Hospitalization for Acute Respiratory Failure During COVID-19: A Multi-Center Qualitative Study

Supplemental Material for Patients’ Experiences of Care During Hospitalization for Acute Respiratory Failure During COVID-19: A Multi-Center Qualitative Study by Ye Eun G. Jung, Sara E. Golden, Courtney Maxcy, Aluko A. Hope, Katrina Hauschildt, Thomas S. Valley, Edlyn Wolwowicz, Nandini Sarma, Catherine L. Hough, Kelly C. Vranas in Journal of Patient Experience

Supplemental Material

Supplemental Material - Patients’ Experiences of Care During Hospitalization for Acute Respiratory Failure During COVID-19: A Multi-Center Qualitative Study

Footnotes

Acknowledgements

The Department of Veterans Affairs did not have a role in the conduct of the study; in the collection, management, or interpretation of data; or in the preparation of the manuscript. The views expressed in this article are those of the authors and do not necessarily reflect the position or policy of the Department of Veterans Affairs or the United States government.

ORCID iDs

Ye Eun G. Jung

Nandini Sarma

Ethical Considerations

This study was approved by Oregon Health & Science University Institutional Review Board #00021778. This study is reported using the Consolidated Criteria for Reporting Qualitative Data (COREQ) checklist. Verbal informed consent was obtained from participants prior to their first interview.

Author Contributions

YGJ is the guarantor of the content of this manuscript, including data and analysis. YGJ, SEG, CM, AAH, TSV, KH, EW, NS, CLH, KCV contributed substantially to the study design, data analysis, and interpretation and the writing of the manuscript.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: BLUE CORAL was supported by grant number U01HL123009, awarded to CLH by the National Institute of Health (https://www.nih.gov/). This study was supported by the American Lung Association (). The sponsors or funders did not play any role in the study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Declaration of Conflicting Interests

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

Supplemental Material

Supplemental material for this article is available online.

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