Disclosure experience among COVID‐19‐confirmed patients in China: A qualitative study

Abstract

Aim To understand COVID patients’ experiences of and perspectives on disclosure of their illness and 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, and this is especially true 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, and then, a thematic analysis was conducted. The Standards for Reporting Qualitative Research (SRQR) were applied to this study. Results A total of 26 COVID‐confirmed patients were recruited for the in‐depth interviews. Four themes emerged from the thematic analysis on disclosure: persons disclosed to, reasons for disclosure, reasons for nondisclosure and impact of disclosure. The participants disclosed their COVID diagnosis to different groups, including family, close friends, community members and workplace contacts. The main reasons for disclosure included the following: government policy, social responsibility, gaining support and fear of being blamed for nondisclosure. However, some participants decided not to disclose to some groups for fear of facing stigma and discrimination or to protect family members from discrimination. Despite the potential benefits of obtaining support after disclosure, many participants did experience stigma and discrimination, privacy exposure, psychological distress and social isolation. Conclusions An individual's decision as to whether to disclose their COVID‐positive status 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 patients and to secure any contact tracing. Therefore, the chances of discrimination could be decreased and patients’ confidentiality could be protected. Relevance to Clinical Practice As the number of COVID patients increases, 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. A disclosure protocol is necessary to ensure patients’ privacy regarding their COVID status.

Psychological experience of COVID-19 patients: A systematic review and qualitative meta-synthesis

“…Seven studies reported that patients felt ashamed; they thought that their failure to protect themselves caused more people to become infected, and their lack of opportunity to apologize to them, led to feelings of guilt [ 9 , 10 , 14 , 22 , 23 , 25 , [26] , [27] , [28] , 31 ]. .…”

“…Ten studies showed that the public's alienation of COVID-19 patients can affect the relationships of the cured at home and work, where they are sometimes asked to work in separate offices or homeschool their children [ 9 , 10 , 13 , 14 , 16 , 17 , 25 , 28 , 29 , 31 ] . Others associate survivors with the virus.…”

“…Doctors and nurses had the most contact with patients during isolation, and provided a sense of security during hospitalization. Patients in seven studies reported that the healthcare providers not only saved their lives but also boosted their morale and helped to manage negative emotions [ 10 , [12] , [13] , [14] , 17 , 29 , 31 ] . Equal respect and love were felt by everyone; discrimination against patients who had the virus was not experienced.…”

Social Support to Reduce Disease-Related Stigma: Lesson Learned from Corona Virus Disease-19

“…Several informants were open about their COVID-19 positive status since beginning with several reasons such as government policies, social responsibility, to get support, and fear of being blamed for keeping it a secret. The same thing was obtained in Sun's research, that more participants decided to be open about their status than to keep it a secret (W. Sun et al, 2020).…”

The Experience of Patients with COVID-19 in China: An Interpretative Phenomenological Analysis

“… 6 The COVID-19 pandemic and the public health measures critical to containing it were associated with three factors that are deleterious to mental health: fear, social isolation and stigma. 7 Social media exposure was also a risk factor for increased anxiety during the COVID-19 outbreak due to increased access to online content. Quarantine and isolation are used to protect people’s physical health when a risk of infectious diseases exists, but the mental health implications of the people experiencing these restrictions must be considered.…”