Disclosure Experience Among COVID-19-Confirmed Patients in China: A Qualitative Study

Abstract

Aim:

To understand COVID patients’ experiences and perspectives on disclosure, to explore and describe the factors affecting disclosure decisions among COVID patients in China.

Background:

Disease disclosure is a critical component of prevention and control of a virus outbreak, especially during the COVID-19 pandemic. Understanding COVID patients’ experiences and perspectives on disclosure could play a vital role in COVID management.

Design:

A Qualitative Study.

Methods:

A semi-structured interview guide was used to conduct qualitative in-depth interviews from April to June 2020. All the interviews were audio-recorded and transcribed. Later, a thematic analysis was conducted for the study and Standards for Reporting Qualitative Research (SRQR) was applied.

Results:

A total of 26 COVID-confirmed cases were recruited for the in-depth interviews. Four themes emerged from the thematic analysis on disclosure: Disclosure to whom, Reasons for disclosure, Reasons for non-disclosure and the Impact of disclosure. The participants disclosed their COVID diagnosis to different groups, including family, close friends, community and workplace. The main reasons for disclosure included: government policy, social responsibility, gaining support, and fear of being blamed for non-disclosure. However, some participants decided not to disclose to some groups for of stigma and discrimination, and to protect family members from external discrimination. Despite the potential benefits of obtaining support after disclosure, many participants also experienced stigma and discrimination, privacy exposure, psychological distress, and social isolation.

Conclusions:

Disclosure among COVID-confirmed individuals is affected by many factors. To prevent the spread of COVID-19 and reduce the potential risks of disclosure such as discrimination and privacy exposure, a balanced intervention should be designed to protect COVID cases, also, to secure the contract tracing. Therefore, discrimination can be decreased and patients’ confidentiality can be protected.

Relevance to clinical practice:

As the number of COVID patients increased, disclosure of an individual’s infectious status is encouraged by health departments. Despite the potential benefits of disclosure, discrimination and privacy exposure should not be ignored. Besides, a disclosure protocol is necessary to ensure patients’ privacy regarding COVID.

Introduction

Since the first case was reported in Wuhan, China, the Coronavirus Disease 2019 (COVID-19; COVID) has profoundly affected lives all over the world, (Huang et al., 2020; World Health Organization [WHO], 2020a) and has spread to 216 countries (WHO, 2020b); there are currently more than two million confirmed cases globally. To battle against and control this highly contagious disease, the WHO and local governments have published a series of guidelines and policies for contract restrictions, quarantine and isolation. China was the first country to close all connections within in the country and globally (air and land) (WHO, 2020c; National Health Commission [NHCa], 2020). As a result, this lockdown policy controlled the outbreak of COVID in China and the Chinese society is expected to gradually resume ([NHCb], 2020). However, all COVID-related issues, such as disclosure, stigma and discrimination, as well as psychological distress affect all individuals’ well-being (Yao et al., 2020).

Background

Disclosure is a stressful and anxious process because the information is shared with individuals who may be unaccepting and misunderstand the condition and bring a stigmatizing reaction (Evangeli & Wroe, 2017). People carefully choose whom they want to disclose to and weigh the benefits and risks of disclosure. Studies have also shown that people living with HIV were willing to disclosure their conditions to spouses and family members, but less likely to disclose to friends and co-workers (Zang et al., 2015). People choose the closeness of their relationships and those who might potentially provide support to disclose (Zang et al., 2015; Maman et al., 2014). One study indicated that people who disclosed to intimate networks could obtain more support instead of discrimination if the relationship is positive (Green et al., 2018).

Disease disclosure is a complex issue, especially in diseases, such as mental illnesses and sexually transmitted diseases such as HIV. Many researchers have described that ill individuals were unwilling to reveal the status of other persons (Adeoye-Agboola et al., 2016; Brohan et al., 2012); however, disclosing a disease has important implications for both patients and general populations. From a public health perspective, disclosure has been advocated due to its vital role in reducing transmission of the disease (O’Connell et al., 2015). Additionally, people who disclose their disease status are more likely to gain social support, reduce self-stigma, and adopt positive coping strategies to address the disease (Yonah et al., 2014; Mao et al., 2018; Ekama et al., 2012). Despite these potential positive outcomes, disclosure can also carry several risks, such as stigma and discrimination, violence, social marginalization, or loss of employment (Nachega et al., 2012; Syed et al., 2015; Siu et al., 2012; Kennedy et al., 2015). These negative outcomes not only take a toll on social relationships and adversely affect quality of life, but also discourage further disease disclosure (Adeoye-Agboola et al., 2016).

The outbreak of the COVID pandemic has brought anxiety, depression, worries, and stress among the general population (Dong & Bouey, 2020; Fegert et al., 2020). During the COVID threat, people tend to take action for self-protection, such as avoidance to contact patients with respiratory symptoms. People discriminate mostly against those who might bring COVID to the public, such as Asians (Eaton & Kalichman, 2020; Logie, 2020). In China, since Wuhan was where the first case was reported, people who came from Wuhan were also highly stigmatized (Huang, 2020; Nature’s editor, 2020). After the province lockdown, people held hostile attitudes and aggressive behaviors towards people from Wuhan and its vicinities, with prejudice and discrimination (WHO et al., 2020; Nature’s editor, 2020). Besides, stigma also happens after a person has recovered from COVID-19 or been released from home isolation or quarantine (CDC & National Center for Immunization and Respiratory Diseases (NCIRD), 2020). These kinds of public attitudes may have an impact on COVID disclosure among patients; however, patients’ perceptions and views on disclosure are still unclear. Although the use of a quantitative study exploring disclosure has predominated in the recent literature, it is seriously limited regarding the capture of patients’ experiences and perceptions in relation to disclosure (Geary et al., 2014; Vu et al., 2012). Since the experiences and responses to disclosure are complex, attaining a detailed understanding of COVID-19 patients’ views on disclosure necessitates a qualitative study method. Therefore, in this study, we aimed to explore COVID patients’ experiences and perspectives on disclosure, and to explore and describe the factors affecting disclosure decisions among COVID patients in Shanghai, China. With this data, healthcare providers can develop an appropriate intervention to assist individuals who are willing to disclose and protect their personal privacy during the process of disclosure.

Method

Aim

The aim of this article was to explore COVID-confirmed patients’ perceptions of disclosure, and describe the factors affecting disclosure decisions among COVID patients in China.

Study design and settings

We conducted 26 in-depth interviews with COVID-confirmed patients who received care at a designated hospital for COVID-suspected and -confirmed cases in Shanghai. There are currently more than 1,000 COVID-confirmed cases that were cared for by this designated hospital. Guidelines for good reporting of a qualitative study (SRQR) (O’Brien et al., 2014) were used in this paper (See Supplementary File 1).

Participants

The purposive sampling method was used to invite individuals who met the following inclusion criteria: (1) confirmed COVID-19, (2) 18 years of age or older, and (3) received care at the designated hospital in Shanghai. Since participants came from different cities in China and there were traffic blockages during the pandemic, in-depth interviews were carried out by Zoom or WeChat (a cell phone App). Seventy-three COVID patients were contacted and 26 cases were recruited after securing the study informed consents (36% acceptance rate). The recruitment was carried out from April to June 2020 and semi-structured in-depth interviews were conducted. After interviewing 26 participants, a saturation point was reached and no new information was obtained (Guest et al., 2006). Study participants received a small reimbursement for their participation.

Qualitative data collection

All the in-depth interviews were audio-recorded and conducted by two research nurses. Before interviewing, these two research nurses were trained for in-depth interview skills and role-play exercises to ensure consistence and inter-rater reliability. Then, each research nurse interviewed the same two study participants to compare the consistency and interview skills. The interview guide focused on the participants’ perceptions of their experiences regarding disease disclosure and mental status before and after the COVID-19 diagnosis. Sample questions were: “Please tell me how you know about your COVID diagnosis.” “Who do you talk to about your diagnosis? Why or why not?”, and “What are the impacts of COVID-19 infection after disclosure?” The details of the in-depth interviews were presented at See Table 1. The average interview took 40–60 minutes.

Table 1:

Interview Questions

Number	Questions
1	How do you know that you have COVID-19?
2	Please tell me what do you know about COVID-19?
3	When you knew you had COVID-19, what was the first thing that came to mind?
4	What are your concerns and worries before and after the diagnosis.
5	Who did you tell about your COVID-19 diagnosis? Why or why not?
6	After people know about that you have COVID-19, what did they do? Can you share one or two reactions with us?

Ethical considerations

The study was approved by the relevant institutional review boards of the involved university (IRB#20–000832) and the hospital (YZ-2020-S037–01). Participants were provided study consent forms before interview, informed and explained the right to withdraw from the study at any time without consequences. Interviews were conducted after securing the signed informed consent forms. Then, participants were assigned a study ID before the in-depth interviews to ensure anonymity and confidentiality. The linked name and study ID were kept in an encrypted computer and only accessed by the study PI.

Analysis

The data were analyzed with a thematic analysis approach (Braun & Clarke, 2006) by using NVivo 12 software (QRS International). All interviews were transcribed verbatim. Then, the study team analyzed these qualitative data. Initially, each case was read several times to get a sense of the content. Then, the study team developed the preliminary codebook specifically to COVID disclosure. Two of the research staff separately coded two transcripts and then compared these two cases. For coding with discrepancies, researchers discussed and achieved consensus for the coding. After confirming the coding reliability, the research staff started coding all the transcripts. The research team then examined the codes and themes to formulate the sub-themes and final themes. Last, researchers finalized the qualitative analysis and translated the selected quotes into English for publication.

Enhancing Trustworthiness

The Lincoln & Guba’s criteria (1985) were adopted in this study to ensure the quality of the study. First, the heterogeneity of investigators, such as research experiences and length of employment, was considered to enhance the credibility of the study. Before interviewing, all investigators were trained with the interview guide and pilot interviews were conducted. Second, to guarantee confirmability and dependability, the analysis preformed using researcher triangulation (Elo et al., 2014). Then all investigators met to discuss discrepancies in the coded data, then achieved consensus. Also, to enhance transferability, the context of the research, such as study sample, method and results, were described in detail below.

Results

Participant characteristics

Twenty-six participants were recruited with a mean age of 34 years (SD=9.3), ranging from 19 to 56 years of age; 12 were male (46.2%) and 14 were female (53.8%). Eighteen (69.2%) participants were from Shanghai, two (7.7%) from Zhejiang province, one (3.8%) from Fujian province, one (3.8%) from Guangdong province, and four (15.4%) from Hubei province. A total of 76.9% of the study participants (N=20) had an educational level above diploma. Most were employed (73.1%, N=19). Nearly 57.7% participants were married (N=15); the majority were living with family members (73.1%, N=19). Some of the participants’ family members were infected with COVID (19.2%, N=5). The detailed demographic characteristics of participants are shown in Table 2.

Table 2:

Demographic characteristics (N=26)

Characteristics	N	Mean (SD) or %
Gender (%)
Male	12	46.2
Female	14	53.8
Education (%)
Above diploma	20	76.9
Employment (%)
Employed	19	73.1
Unemployed	7	26.9
Residence (%)
Shanghai	18	69.2
Zhejiang province	2	7.7
Hubei province	4	15.4
Fujian province	1	3.8
Guangdong province	1	3.8
Marital status (%)
Unmarried	11	42.3
Married	15	57.7
Living with family members (%)
Yes	19	73.1
No	7	26.9
Family members infected with COVID
Yes	5	19.2
No	21	80.8
Age (years, mean)
Years old		34 (9.3)
Age range		19∼56

Thematic results

Four themes emerged from the analysis: Disclosure to whom, reasons to disclose, reasons for non-disclosure, and the impact of disclosure. We present the themes and sub-themes in Table 3).

Table 3:

Themes and Sub-themes

Themes	Sub-themes
Disclosure to whom	Family
	Intimate friends
	Community
	Workplace
	Children’s school
Reasons to disclose	Policy
	Responsibility for protecting others
	Gain social support
	Fear of being blamed for non-disclosure
Reasons for nondisclosure	Fear of stigma and discrimination
	Protecting family members
Impact of disclosure	Social support
	Stigma and discrimination
	Psychological distress
	Self-isolation
	Privacy exposure

Theme 1: Disclosure to whom

All participants disclosed their COVID diagnosis to others. We examined whether their disclosures included family, close friends, community, and workplace colleagues, and others. All the participants had disclosed to their family members (100%, N=26), many disclosed to the community (57.7%, N=15) and workplace colleagues (50.0%, N=13); some disclosed to close friends (46.2%, N=12); very few disclosed to their children’s schools (7.7%, N=2). Some parents were disinclined to report their COVID status to their children’s school. Just as one mother said that she didn’t want to let her children’s classmates know it, because she was afraid that her children would be marginalized by others.

A 24-year-old female described:

When I received the COVID diagnosis from the CDC, the first thing I did was inform my manager because I could not continue to work. Then I told my parents and boyfriend who was living with us. I also informed some of my colleagues with whom I had close contact.

Theme 2: Reasons to disclose

Policy.

Government policy was the most mentioned reason as to why participants disclosed their COVID status in this study. One participant (a 40-year-old male) described that the community he lived in post-notification of the special situation of all residents, such as home quarantine, medical observation, with names of the housing numbers was highlighted due to his COVID diagnosis. A 41-year-old female expressed:

I was informed that I needed to disclose my status to my workplace so the company can protect other workers’ safety. Therefore, I called my boss, as well as my colleagues in the office.

Responsibility for protecting others.

Some of the participants felt that they were responsible for disclosing to people with whom they had close contact, such as family members, friends. As the whole society was combating COVID, everyone needed to protect others’ safety. One male participant (28 years old) said:

Once diagnosed with COVID, the first thing I did was to disclose. If you hide it, it is irresponsible to others… I have an obligation to remind others. I contacted my friends and reminded them to make sure they were safe.

Gain social support.

Gaining social support was an important reason for disclosure, as all of the participants were quarantined during hospitalization when they could not see others. As one 31-year-old male described:

After diagnosed with COVID, I was placed in this designated hospital, where I cannot see my family. I need someone to help my wife and children to do a medical visit. I can only ask my manager for help, so I need to disclose my status.

Fear of being blamed for non-disclosure.

Being blamed for COVID infection was an important contributing factor to disclosure. Some participants were afraid that if they did not disclose, people who found out later would have negative attitudes toward them. One 41-year-old male stated:

If I don’t tell them and something happened, I would be complained about more and treated badly.

Theme 3: Reasons for non-disclosure

Fear of stigma and discrimination.

One of the most important reasons for participants to favor non-disclosure was the fear of being stigmatized and discriminated against due to the COVID infection. They believed that they would be treated differently as soon as others knew about their COVID diagnosis. As one 35-year-old female said:

I was afraid to tell others that I had COVID… I can imagine that I would be rejected when others knew my status… To avoid people looking at me with strange eyes, I would not proactively disclose.

Protecting family members.

A few participants feared that disclosure could marginalize their family members to the society, such as children and spouses. Keeping their COVID status to themselves was a way to protect their family. One mother (35 years old) expressed her worries as:

As I went back to Wuhan (from hospitalization in Shanghai), I avoided letting others know that I had been infected with COVID. I didn’t want to let my children’s classmates, their parents and neighbors in our community know about this because the rumors could influence how people react, especially children and their parents. My child would be marginalized and stigmatized by others, which would cause harm to him. I hide my diagnosis to protect my children.

Theme 4: Impact of disclosure

Social support.

Disclosure needs to happen before getting social support from others. A number of participants who disclosed to others reported that they received support from families, employers and community members. These supports included emotional support from families and friends, practical support from colleagues and neighbors during the quarantine period. One 24-year-old female study participant stated:

When I got a call from CDC that I was confirmed with COVID infection, I cried and couldn’t accept the truth. I told my parents, employer and colleagues this bad news. After they knew it, they comforted me. Then I gradually began to accept it and felt that I needed to cheer up.

Stigma and discrimination.

The majority of COVID patients in this study shared their experiences of stigma and discrimination in the workplace, community and society. They experienced being marginalized by the public, rejected to get services, driven out by the landlord, and forced to resign. A female (30 years old) expressed that her supervisor told her to resign after knowing her diagnosis. A 56-year-old male stated:

People felt so sacred when they contacted me. At a high school reunion, I was told that I couldn’t attend because they were scared. I was also told that I couldn’t return to work and should go back to my hometown. I felt I was discriminated against by the public.

Psychological distress.

The COVID diagnosis was stressful for many participants. They were considered virus carriers even after recovering and being discharged from the hospital. A number of patients described that they felt stress and anxiety contacting others who knew their status. One 31-year-old male expressed:

I have worked at home for two months. I did not know how to face my colleagues in the company. It made me stress out.

Self-isolation.

To avoid stigma and discrimination, most of the participants reduced their social activities and kept a distance from others. One 40-year-old female said:

After discharge from the hospital… I did not contact anyone. I am so afraid that my network cannot accept me.

Privacy exposure.

Contact tracing is a critical way to prevent and control the spread of COVID; therefore, disclosure can result in personal privacy exposure. One 41-year-old male described:

When I was diagnosed with COVID, my wife reported the situation to my children’s school, which was the school policy. When I found out that my personal information, my children’s names and level of the class were posted on the parents’ notification board, I was so angry. Later, my personal information was posted on the Internet.

Discussion

Disclosure is a critical component of prevention and treatment of infectious diseases (O’Connell et al., 2015). COVID disclosure is a complex decision that can carry the risk of stigma and privacy exposure and reduce potential support from others. In this qualitative in-depth interview with COVID patients, we explored COVID-confirmed patients’ experiences of disclosure, and described the factors affecting disclosure decisions among COVID patients in China. To the best of our knowledge, this is one of the first projects exploring the disclosure impact on COVID patients. This study will provide a basic understanding of patients’ viewpoints and perceptions regarding disclosure, which will direct the development of future interventions to assist in COVID disclosure and facilitate disclosure when needed.

Our findings indicate that Chinese policy and culture impact patients’ decisions concerning COVID disclosure. In this study, policy requirement was one of the main reasons for disclosure. At the beginning of the COVID-19 outbreak, the Chinese government implemented a series of rigorous control strategies to halt the spread of COVID-19, such as community-based “grid-closed management,” health codes, and student group management (Liu et al.,2020; Paul et al., 2020). In these prevent and control measures, COVID disclosure has been highlighted and advocated widely, which encourages people in the same networks to pay attention to symptoms and potential infection (McCullough et al., 2020). Under these policies advocating disclosure and implementing practical strategies, it proved to be effective in controlling the pandemic.

Apart from policies, Chinese culture also play a vital role in disclosure. On the one hand, it has a traditional context in China that the general public were required to follow the government orders without question (Wang et al., 2020). As a result, the COVID disclosure policy can be executed well by the public. On the other hand, the sense of social responsibility has taken root in the Chinese population who experienced long-term moral and ideological education in China (Zhang et al., 2016). Since COVID is a highly transmitted disease, and individuals who present with symptoms need to be under medical observation, to better protect others, infection disclosure is essential, which is the main reason for disclosure to family members, friends, colleagues, and the communities (NHC, 2020c; NHC, 2020d) However, confidentiality was not discussed in the governmental policy.

Similar to other studies of infectious disease diagnoses, to disclose or not disclose is a complex issue (Brohan et al., 2012; Adeoye-Agboola et al., 2016). Although there are many factors to facilitate COVID disclosure—policy requirements, social responsibility, gain support, and fear of being blamed—COVID patients still hesitate to disclose. Studies have shown that infectious disease disclosure (e.g., HIV), stigma and discrimination remain the primary reasons for non-disclosure (French et al., 2015). In this study, the expectation that an individual would be stigmatized when disclosing was more discussed, as most of the disclosures happened during hospitalization. In addition, the public stigma not only targets COVID patients, but also has an impact on patients’ family members, especially on children, and concerns the COVID patients the most. Protecting family members from public stigma is another factor for non-disclosure. Therefore, a decrease in public stigma is urgently needed, and people are more willing to alert the public regarding COVID exposure and prevention.

Disclosure of COVID status can impact social, emotional and practical support. COVID diagnosis can be a shocking and stressful event, and most likely, patients present with certain symptoms (e.g., flu-like symptoms, fever). Compared to HIV, HIV+ individuals can hide their serostatus without symptoms (Sanga et al., 2019). Also, people infected with COVID have been required to be quarantined and removed from societies, especially in China (WHO, 2020c; NHCd, 2020). During the course of the diseases, support from family members and friends become critical for a positive adjustment (Fegert et al., 2020). Also, for severe cases of patients with COVID, staying in an intensive care unit and a follow-up with self-quarantine, they would need to suspend their daily activities and rely on friends and family’s assistance. As such, practical support from their social networks plays a vital role in combating COVID. These study findings highlight the importance of social support in improving the well-being of people infected with COVID-19.

Disclosing one’s COVID status not only provides support for individual patients, but also creates a potential crisis for patients’ circle of social networks. As shown in this study, people infected with COVID experienced stigma, discrimination, and privacy exposure. These negative experiences caused psychological distress and self-isolation, which impacted their decisions to disclose. As disclosure is important to prevent and control COVID transmission, mandated disclosure should be followed by a thoughtful process, which will protect patients’ personal privacy (Kuhn A, 2020). After patients are discharged from healthcare facilities, they should be considered non-transmissible and should not be seen as patients. Also, during the period of hospitalization, patients with COVID should be evaluated regarding psychological distress and concerns about diagnosis disclosure. Stigma and misconceptions of COVID transmission should be discussed before patients are discharged. In addition, updated knowledge regarding COVID prevention and transmission in public is urgently need because this can create a safer and supportive environment for all people.

Limitations

There are some limitations in this study. First, due to the data and small sample of this qualitative research, the study participants cannot be representative of all COVID-infected patients in China or globally. Shanghai is one of the metropolitan areas in China that usually provides more resources than other cities. Chinese governmental COVID policies might not apply to other countries. Second, there may be potential bias due to the interviewers’ abilities, coding and analysis of the data. However, we have trained researchers to increase the inter-rater reliability. Third, the relatively young participants (19–56 years old) also bring potential bias to this study. Thus, future research should replicate by using a larger group sample and wider age range to explore the factors affecting COVID disclosure.

Conclusion

This study explored COVID-confirmed patients’ experiences of disclosure, and described the factors affecting disclosure decisions among COVID patients in Shanghai, China. To control the COVID pandemic, disclosure of an individual’s infectious status is encouraged by health departments; therefore, the concern regarding disclosure of COVID infection was high in our study participants. In this study, participants disclosed their confirmed status due to the requirement, social responsivity, fear of being blamed, and to gain social support. Others were concerned with the social stigma and discrimination after disclosure. After disclosure, COVID patients can obtain support to assist in coping with the disease. Despite this potential benefit, many patients have experienced stigma, discrimination, and privacy exposure. These can all cause psychological distress and self-isolation. As the pandemic might persist for a significant period of time, interventions should be designed to decrease public stigma and to establish a disclosure protocol to ensure patients’ privacy regarding COVID.

What does this paper contribute to the wider global clinical community?

• The study provides insights of COVID patients direct experiences regarding infectious disclosure and describes the factors affecting disclosure decisions among patients.

• The study identified some facilitators for COVID disclosure that could be considered in future studies.

• Given the importance of discrimination and confidentiality of the individuals in the process of COVID disclosure, it is important for future studies to establish disclosure protocols to ensure patients’ privacy.

Relevance to clinical practice.

From the findings of the present study, we can gain in-depth insights into the experiences and perceptions of COVID patients regarding disclosure. Many factors were identified in this study affecting COVID patients’ disclosure decision. As disclosure is important to prevent and control the COVID transmission, disclosure is encouraged by health departments; however, mandated disclosure should be followed by a thoughtful process that weighs the manifold impact of disclosure on patients. Thus, an appropriate intervention that is balanced to protect confidentiality of COVID cases as well as to trace for potential contact cases should be designed.