Listening to COVID-19 survivors: what they need after early discharge from hospital - a qualitative study

ABSTRACT Purpose This study aims to explore the post-discharge experience and needs of COVID-19 survivors. Methods A qualitative study was conducted. A total of 16 post-discharge COVID-19 patients aged 31–68 years were recruited. The semi-structured interviews were conducted by telephone one month after discharge and were analysed by Colaizzi’s 7-step method. Results The post-discharge experience of COVID-19 patients were classified into four categories and ten subcategories. Category I: physiological problems consisted of physical sequelae (such as fatigue, shortness of breath, sleep disorder, chest pain) and a lack of physical rehabilitation guidance. Category II: psychological issues included anxiety, depression, fear, and psychological trauma. Category III: social issues included social stigma and financial stress. Category IV: positive experience and change included gratitude to social support and cherishing life and family. Conclusions COVID-19 survivors urgently need guidance for physical rehabilitation and psychological growth, social support provisions, and protection from social stigma. The experience of COVID-19 survivors is significant for planning healthcare management systems and guiding public health prevention efforts.


Background
Coronavirus disease 2019 (COVID-19) is a highly contagious disease caused by severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2; Ahn et al., 2020). In China, COVID-19 was first identified in December 2019 in Wuhan and had quickly spread, and the number of infections and deaths caused by COVID-19 continues to rise to this day. While the epidemiology, clinical characteristics, and treatment of COVID-19 patients have been extensively studied and clearly described, the post-discharge problems faced by COVID-19 survivors remain unknown. Understanding the course of patients' recovery from COVID-19 is significant for planning healthcare management systems and guiding public health prevention efforts.
Wuhan, as the epicentre of COVID-19 in China, was hard-hit in the early stages. Although the Chinese government implemented a series of measures to contain the rapid spread of this virus, the medical system in Wuhan collapsed in the early stage of the outbreak. The prevention and treatment of COVID-19 were still in the exploration stage, and the patients' health deteriorated sharply. Therefore, patients experiencing COVID-19 at the early stage of the outbreak suffered more than those who contracted this disease later on. Hence, exploring the experience and needs of COVID-19 survivors after early discharge from the hospital in Wuhan may provide evidence for intervention in a population affected by  Clinical recovery is not equal to full recovery as a result of the long-term consequences of COVID-19. Beyond stresses inherent in the illness itself, various factors such as disruption of daily routine, inadequate information from public health officials, and stigmatization raise concerns about what COVID-19 survivors experience after discharge. Past studies indicate that an infectious disease impacts the well-being of the individual and the community, and these impacts can persist long after the outbreak (Lau et al., 2008). Based on the rapidly evolving COVID-19 pandemic and the psychosocial effects during past outbreaks of infectious diseases, it is critical to pay more attention to the experience of COVID-19 survivors to understand how we can better support them in dealing with the current situation. Most recent studies have used quantitative approaches to understand the physiological consequences experienced by COVID-19 survivors (Bellan et al., 2021;Halpin et al., 2021;Huang et al., 2021;Zhao et al., 2020). Only a few studies have been CONTACT Haixia Yang 704287382@qq.com The Second Affiliated Hospital of Xi'an Jiaotong University, No. 157, West Five Road, Xi'an, Shaanxi 710004, China conducted to comprehensively understand the needs of the survivors after early discharge from the hospital using qualitative methods. Therefore, our research aims to describe the experience of these COVID-19 survivors to support them effectively. Summarizing the post-discharge experience of COVID-19 survivors in Wuhan has an important practical significance for the medical staff, working together with other care providers, to cope with the impact of COVID-19.

Design and participants
We used a phenomenological method and conducted a qualitative study of post-discharge COVID-19 survivors from Wuhan in April 2020. Using a purposive sampling method, 16 survivors were recruited from the Sino-French New City Branch of Tongji Hospital in Wuhan. The study included individuals who (1) were confirmed to have COVID-19, (2) demonstrated good verbal expression, and (3) were willing to participate in this study. The sample size was determined when data saturation was reached, i.e., after 14 interviews, similar themes started emerging. Moreover, two participants were interviewed to increase the validity of data saturation.

Data collection
The interviewers were two nurses, one of whom was appointed to the Sino-French New City Branch of Tongji Hospital to care for COVID-19 survivors. Both the interviewers underwent unified training before conducting the interview to ensure consistent methods and procedure. The nursing manager of this hospital provided the interviewer with contact information for survivors who met the inclusion criteria. The discharged survivors were contacted by telephone. The purpose and procedures of the study were introduced to the participants in advance, and interviews were performed about one month after discharge via telephone or WeChat. The interview guide (see, Appendix) was developed by all the team members according to the research aims and relevant literature. Two pilot interviews were conducted to identify any unclear questions. The one-onone interviews were conducted by telephone due to the pandemic. Prior to the interview, the interviewer ensured that the participant was in a private and comfortable environment. Participants' age, gender, comorbid conditions, clinical classification, etc., were gathered from medical records. COVID-19 clinical classification was determined as mild, moderate, severe, and critical according to the "Guidelines for the diagnosis and treatment of COVID-19" released by the National Health Commission (NHC) of the People's Republic of China . Each interview lasted approximately 30-60 minutes.

Data analysis
Within 24 hours of each interview, the recording was transcribed verbatim. The NVivo 11 statistics software and Colaizzi's phenomenological analysis method were used for data analysis (Colaizzi, 1978). MG and HY read the transcripts carefully to familiarize themselves with the data and extracted significant statements related to the survivors' post-discharge experience. They identified meaning units from these significant statements and assigned codes. Themes and subthemes were then obtained from the codes. MG and HY completed the above steps independently, then conducted consistency checks and discussions. When interpretations differed, discussions were carried out with all team researchers, and a professor with qualitative research experience was consulted to reach a consensus. MG, HY, and MK formulated a detailed description of the postdischarge experience of the survivors. The findings were returned to the participants for verification. Table I is an example of the theme coding.

Trustworthiness
The trustworthiness of the data was confirmed based on the credibility, transferability, dependability, and confirmability in the following strategies (Lincoln & Guba, 1985). First, two different researchers independently analysed the data by applying the Colaizzi's analysis procedures systematically. If their interpretations differed, they discussed them until the most suitable interpretation was found. All transcripts of the interviews and the findings were sent to the participants for feedback. In addition, the purposive sampling method and a thorough description of the participants and the research process were used to ensure transferability. Results were then reviewed by researchers not involved in the initial analysis. We employed strategies to achieve bracketing in this research and asked non-leading questions to the participants about their experience throughout the semistructured interview. We kept a conscious and openminded attitude and wrote down our thoughts and feelings to avoid being guided by these presuppositions in the process of data analysis. The findings were also shared with the participants to verify whether their answers had been distorted and filtered.

Ethics
This study was approved by the Xi'an Jiaotong University Health Science Center (Ref: 2020-1331). All participants provided oral consent. We promised that anonymity would be protected, although the interviews would be audio-recorded, and participants were allowed to withdraw consent at any time without consequences. Only the researchers had access to the audio tapes and transcripts. Confidentiality was assured by using numbers instead of names (e.g., H1, H2, etc.) and removing identifying information from the transcripts.

Results
This study included 16 participants: 6 males and 10 females aged 31-68 years. Six survivors had experienced a severe case of COVID-19, four survivors had a moderate case, and six survivors had a mild case. Eight survivors had comorbid conditions. Three survivors lived alone after discharge, seven survivors lived with a spouse, and six survivors lived with family. Most survivors had one child. Table II outlines the characteristics of the participants. The interview revealed that although each respondent had subjective feelings about their experience with COVID-19, they also experienced many shared emotions. The results included four categories and ten subcategories (Table III).

Category I. Physiological problems
Survivors had some physical sequelae, including fatigue, shortness of breath, sleep disorders, poor appetite, chest pain, and dry cough. After discharge, they were not equipped with medical consultation channels or adequate guidance for rehabilitation.

Physical sequelae
Most respondents reported fatigue, sleep disorders, and poor appetite, and patients who had severe COVID-19 infection reported shortness of breath, chest pain, and dry cough.

Lack of guidance for physical rehabilitation
Survivors stated that few healthcare workers contacted them after they were discharged from the hospital. They wanted to know the cause of their residual symptoms and when they might recover, but did not know how to contact the healthcare staff. Participants were worried about COVID-19 reinfection; however, there was no medical staff available to assess chest CT images and test nucleic acids and antibodies regularly. They did not know what to do other than exercise and consume nutritious foods.

Category II. Psychological problems
A considerable proportion of survivors still had varying degrees of psychological distress after hospital discharge, including depression, anxiety, fear, and psychological trauma.

Depression
Participants reported that Wuhan's healthcare system was chaotic in the early days of the outbreak, with no standardized or regulated diagnostic and treatment procedures for COVID-19 and limited hospital beds. These conditions delayed the hospital's admission of COVID-19-infected patients and their family members. Six participants stated they had family members, who were also diagnosed with COVID-19, and three of them lost loved ones, making them feel dejected. Some survivors reported that they had done their best for self-protection and quarantine by wearing masks regularly and social distancing from others; however, they were unfortunate to be infected.

Anxiety
Almost all survivors experienced a certain degree of anxiety before and after discharge. According to the participants, the main reasons for their anxiety after leaving the hospital included residual physical symptoms, an uncertain prognosis, and fear of family members being infected.

Concerns about the prognosis of the disease
Concerns about the prognosis of the disease was one of the main causes of anxiety. Survivors were worried about the potential and irreversible damage caused by COVID-19 to their bodies or organs or a relapse. Insufficient evidence about the prognosis of COVID-19 infections, survivors' residual symptoms, and exaggerated information from social media contribute to survivors' concern about the COVID-19 prognosis.

Concerns about transmission to family members despite recovery
Although most respondents had adopted disinfection and self-isolation measures following hospital discharge,

Financial stress
The government reimbursed the medical expenses of COVID-19 patients, which solved part of their economic pressure. However, because of the implementation of COVID-19 prevention and control policies, the survivors were not allowed to return to work immediately after being discharged from the hospital, nor were they offered sick pay, and their family members were quarantined at home, generating financial crisis for the entire family. Some participants reported that they could not return to work because of residual physical symptoms and social discrimination. Particularly, if survivors had comorbidities or were the main income provider in the family with the responsibility of supporting older adults and children, the financial pressure is even more obvious.

Gratitude to social support
In the early stages of the outbreak, when Wuhan suffered from a shortage of medical staff, medical teams were dispatched from other provinces, bringing hope to patients in Wuhan. Almost all respondents expressed sincere appreciation to these medical teams and gratitude to the Chinese government for putting forward the principle of admitting and treating everyone and offering free treatment to all patients, which reduced their financial stress. Respondents claimed that family companionship and care played an important role in overcoming the disease.

Cherishing life and family
Survivors experienced intense physical and mental reactions in struggling with the disease and gradually gained some form of benefit from their experience. This pandemic made respondents realize that they had overlooked health issues in the past and that life is fragile. Therefore, they will cherish life, pay more attention to health, and spend more time with family.

Discussion
This study found that COVID-19 survivors experienced physical, psychological, and social problems, which fits the framework of the biopsychosocial model developed by George L. Engel (1977). This model focuses on the biological, psychological, and social factors and their complex interactions in understanding health, illness, and healthcare delivery. This study showed that the needs of COVID-19 survivors were not met post-discharge, highlighting the importance of continuous care. This study found that patients recovering from COVID-19 have residual physical symptoms, including fatigue, shortness of breath, sleep disorders, poor appetite, chest pain, and dry cough. These symptoms may be related to psychological stress or physical damage that has not been fully repaired due to the infection. This is in keeping with a recent quantitative study investigating the symptoms in survivors of COVID-19, highlighting that survivors experienced fatigue, breathlessness, psychological distress, cough, and loss of appetite after discharge (Halpin et al., 2021). Both studies in the UK and Wuhan showed fatigue and shortness of breath were the most common symptoms among COVID-19 survivors (Halpin et al., 2021;Huang et al., 2021). In this study, 10 of the participants had a moderate or higher degree of disease, and half of them had comorbidities, which may be one of the reasons for their poor postdischarge experience. Survivors with a severe degree of the disease during hospitalization or coexisting diseases have increased risks of more symptoms after discharge from hospitals . A systematic review reported that respiratory compromise, reduced exercise tolerance, and reduced quality of life were crucial issues in SARS and MERS survivors, and these can persist up to 12 months after discharge (Ahmed et al., 2020). As such, COVID-19 survivors need medical consulting channels or rehabilitation guidelines after hospital discharge. Therefore, it is necessary to identify the symptoms and implement rehabilitation services to manage these symptoms appropriately and maximize the functional return of survivors.
Survivors reported that few healthcare providers offered counselling or support for their continuing discomfort or prognosis information after discharge from the hospital. Even before the emergence of COVID-19, there was already a shortage of public health specialists. According to the 2020 China Health Statistical Yearbook, public health doctors accounted for barely 6.9% of the total medical practitioners (China Health Statistical Yearbook, 2019). Healthcare providers in China, particularly in Wuhan, were overwhelmed by the issues they were facing. When the outbreak reached its peak, there was an emergency shortage of healthcare resources. The limited number of healthcare workers were focused on treating hospitalized COVID-19 patients and were unable to provide adequate follow-up care. This could be one of the reasons for the lack of effective medical support for survivors' post-discharge. Humanistic care needs to be given to survivors whether or not they have physical symptoms after discharge. This study also highlighted the problem of the spread of distorted information through social media. Medical staff plays a critical role during a pandemic. In addition to providing treatment, care, close observation, and counselling to patients and survivors, they should also provide infection control education to correct any erroneous knowledge and avoid misunderstanding. Thus, increasing the reserve of the medical workforce should be considered, especially health emergency specialists.
The results of the study also showed that most respondents still had psychological distress after hospital discharge, which is consistent with recent research. Anxiety or depression was reported among 23% of discharged patients with COVID-19 in Wuhan (Huang et al., 2021). A recent study in Northern Italy found that 17.2% of COVID-19 survivors had posttraumatic stress symptoms four months after hospital discharge. In this study, the psychological distress of the respondents originated from many factors, including concerns about the recurrence of disease, physical sequelae, stigma, death of family members caused by COVID-19, concerns about children's health, and financial stress. Early, continuous, and professional psychological interventions can prevent physical and mental harm. Therefore, attention to the psychological aftermath of severe infectious diseases is warranted, and continuous psychological care and social support should be provided in accordance with the different causes of these negative emotions. In the context that face-to-face psychological intervention is not possible due to COVID-19 prevention and control measures, online intervention is feasible as most patients showed a positive attitude towards online mental health services (Bo et al., 2021).
Stigmatization is one of the main experiences of patients with contagious diseases, which is still evident even when the pandemic is over (Lee et al., 2005;Robertson et al., 2004). A review indicated several reasons for the stigma associated with COVID-19: misinformation, feeling of insecurity, fear of responsibility, administrative malfunction, and lack of trust in treatment (Mahmud & Islam, 2021). In this study, respondents were discriminated against by people who lived in the same community, friends, and even family members. Considering stigma can lead to more severe issues such as impaired physical and psychological health and difficulties controlling the disease outbreak (Liu et al., 2020;Mahmud & Islam, 2021), effective action should be taken to avoid fuelling this stigma. For example, using inclusive language and avoiding stigmatizing terminology when talking about COVID-19, collecting and spreading accurate facts to alleviate stigma caused by insufficient knowledge of disease transmission and treatment, and emphasizing the effectiveness of prevention and treatment measures. Additionally, there is an urgent need to amplify survivors' voices and emphasize to families and friends that their care and support are crucial to the survivors' recovery.
The results also found that survivors faced unemployment and accompanying financial stress after discharge from the hospital. It has been proven that unemployment is associated with anxiety, depression, and poor quality of life (Hodgson et al., 2018). Therefore, the unemployment and financial stress that survivors would experience after discharge is a significant social issue. Furthermore, the low-income group experienced more severe depression during the pandemic, possibly because people with low income or unpaid leave feel more likely to be affected by income loss during and after the pandemic than the high-income group (Brooks et al., 2020;Hawryluck et al., 2004). In the post-COVID -19 era, the health and workplace systems should assess the specific situations of survivors, and provide appropriate financial and work policies to those suffering the severe impacts of the COVID-19 pandemic.
During the early stage of the COVID-19 outbreak, a majority of the public had little knowledge about the virus. COVID-19's high hospitalization and casualty rates, as well as the uncertainty regarding the prognosis, increased survivors' anxiety and panic. Due to the rapidly increased cases and the shortage of hospital beds for COVID-19, some patients with mild or moderate symptoms had to stay home for isolation and observation (Zhuang et al., 2021). This resulted in some patients not receiving timely treatment, whereby their condition deteriorated rapidly. Moreover, by the time they were admitted to the hospital, the disease had worsened. Severe case survivors experienced higher physical sequelae and psychological trauma after being discharged from the hospital . Furthermore, home isolation exposed their family to the disease and prompted high intra-family infection rates (Lei et al., 2020), which exacerbated the survivors' negative psychological and social experiences.
Participants in this study were those who were infected during the early stage of the COVID-19 outbreak. During this period, Wuhan's healthcare systems showed flaws in their disaster control and prevention measures, including the inability to detect the virus early, overcrowding in public hospitals, and a severe shortage in personal protective equipment and healthcare personnel. Policymakers and hospitals did not have enough time to modify their responses to the abrupt fluctuations. The Chinese Center for Disease Control and Prevention failed to identify, inspect, and respond to outbreaks, putting disease prevention and control at risk. Many patients went to large public hospitals for treatment due to the antiquated diagnostic facilities and limited competency of physicians in community hospitals. As a result of this predicament, hospitals were overburdened with patients. The COVID-19 pandemic put China's health emergency system to the test. Although the Chinese government has won its fight against the virus by adopting innovative and professional strategies at the later stage, the severe effects of COVID-19 on survivors at the early stage remain. Inadequate long-term material reserves and health emergency personnel, the capacity of community hospitals, and the ability to recognize and respond to emergency medical situations are all issues that must be addressed.
This study also found some positive experiences and change among survivors. COVID-19 survivors rethink and redefine and cherish their lives more, which is one form of post-traumatic growth (PTG). PTG is manifested in many ways, including a greater appreciation for life, greater personal strength, and more meaningful relationships with others (Tedeschi & Calhoun, 1996). We found that patients who reported satisfying social support tend to report psychological growth, which is in keeping with previous studies (McDonough et al., 2014;Zhou et al., 2021). Some interventions, such as cognitive-behavioural therapy, mindfulness-based meditation intervention, and exposure therapy, have been used to strengthen PTG (Danhauer et al., 2013;Hagenaars & van Minnen, 2010;Hanley et al., 2015). Considering that the occurrence of PTG depends on how the event is processed, rather than the event itself, psychological techniques for improving PTG should be adopted to guide survivors to increase positive psychological change and promote physical and mental rehabilitation.

Limitations
Despite its valuable outcomes, this study had some limitations. First, this study only interviewed survivors from one hospital in Wuhan and did not include survivors from other hospitals, limiting the generalization of these findings. Second, because it was carried out during the pandemic, this study adopted the telephone interview method. The lack of face-to-face communication may have diminished the respondents' trust in the researcher and resulted in some bias. However, we used WeChat to establish a relationship with survivors to enhance trust.

Conclusion
COVID-19 survivors urgently need guidance for physical rehabilitation and psychological growth, social support provisions, and protection from social stigma. The experience of COVID-19 survivors is significant for health system planning and guiding public health prevention efforts.

Disclosure statement
No potential conflict of interest was reported by the author(s).

Funding
This work was partially supported by the grants from Shaanxi Provincial Key Research and Development Program [2020SF-278].