key: cord-1052966-4ygpjzqp authors: Fu, Leiwen; Wang, Bingyi; Fong Chan, Paul Shing; Luo, Dan; Zheng, Weiran; Ju, Niu; Hu, Yuqing; Xiao, Xin; Xu, Hui; Yang, Xue; Fang, Yuan; Xu, Zhijie; Chen, Ping; He, Jiaoling; Zhu, Hongqiong; Tang, Huiwen; Huang, Dixi; Hong, Zhongsi; Ma, Xiaojun; Hao, Yanrong; Cai, Lianying; Yang, Jianrong; Yuan, Jianhui; Chen, Yaoqing; Xiao, Fei; Wang, Zixin; Ye, Shupei; Zou, Huachun title: Associations between COVID-19 related stigma and sleep quality among COVID-19 survivors six months after hospital discharge date: 2021-10-21 journal: Sleep Med DOI: 10.1016/j.sleep.2021.10.020 sha: 6904c483a0f8bb6868f1ac856e0f66c0c70d4a41 doc_id: 1052966 cord_uid: 4ygpjzqp BACKGROUND: Many COVID-19 survivors reported stigmatization after recovery. This study investigated the association between stigma (discrimination experiences, self-stigma and perceived affiliate stigma) and sleep quality among COVID-19 survivors six months after hospital discharge. METHODS: Participants were recovered adult COVID-19 survivors discharged between February 1 and April 30, 2020. Medical staff of five participating hospitals approached all discharged COVID-19 period during this period. A total of 199 participants completed the telephone interview during July to September, 2020. Structural equation modeling was performed to test the hypothesize that resilience and social support would mediate the associations between stigma and sleep quality. RESULTS: The results showed that 10.1% of the participants reported terrible/poor sleep quality, 26.1% reported worse sleep quality in the past week when comparing their current status versus the time before COVID-19. After adjusting for significant background characteristics, participants who had higher number of discrimination experience, perceived stronger self-stigma and stronger perceived affiliate stigma reported poorer sleep quality. Resilience and social support were positively and significantly associated with sleep quality. The indirect effect of self-stigma on sleep quality through social support and resilience was significant and negative. Perceived affiliate stigma also had a significant and negative indirect effect on sleep quality through social support and resilience. CONCLUSIONS: Various types of stigma after recovery were associated with poor sleep quality among COVID-19 survivors, while social support and resilience were protective factors. Resilience and social support mediated the associations between self-stigma/perceived affiliate stigma and sleep quality. COVID-19 survivors encountered serious COVID-19 related stigma [1] [2] [3] [4] [5] . Disease characteristics (e.g., high infectivity, severe consequences, long incubation period, large number of asymptomatic patients, and survivors testing to be positive again for SARS-Cov-2 after recovery) as well as serious infodemic trigger great fear of COVID-19 among the general public [6] [7] [8] . Moreover, information exposure about the spread of the disease caused by non-compliance to the control measures may cause general public linked COVID-19 patients with negative stereotypes (e.g., irresponsibility or lack of moral sense) [6] [7] [8] . People tend to avoid and isolate groups who are at risk of COVID-19 transmission (e.g., people coming from epidemic centers, healthcare workers, COVID-19 survivors) 8 . Although the original purposes of these avoidance behaviors are for disease prevention, they may end up with discrimination and stigma against specific groups of people 9, 10 . Similar to survivors of previous infectious diseases outbreak (e.g., SARS, Ebola, and H1N1) 5 , many COVID-19 survivors reported stigmatization after recovery. Studies in Nepal, India and Saharan Africa reported that COVID-19 survivors experienced avoidance from other people after recovery, difficulties in service utilization and employment, and being insulted, shunned, marginalized, and rejected in other aspects of their lives [1] [2] [3] [4] . In China, some COVID-19 survivors experienced difficulties in employment (e.g., denied for job interview or fired without reasons), housing (e.g., landlords refused to rent them a place or being rejected by the communities) and relationship with others (e.g., avoidance from family, friends and neighbors, and verbal abuse and harassment) 7 . Moreover, there have been intentionally exposure of COVID-19 survivors' personal information (e.g., identity, telephone number, and address) 7 . COVID-19 survivors may endorse these negative reactions from the public, devalue themselves, and socially withdraw, which is referred to as internalized stigma or self-stigma 11, 12 . Stigma not only affects COVID-19 survivors but also those who are associated with them (e.g., their family members). Such stigma-in-association has been labeled as courtesy stigma, which refers to the perceived or experienced stigma against COVID-19 survivors' associates originated from the general public. The internalization of stigma among COVID-19 survivors is defined as perceived affiliate stigma 13, 14 . According to the minority stress model, internalized stigma is proximal minority stress and the most adverse consequence of being socially excluded and discriminated 15, 16 . Two meta-analysis studies revealed that internalized stigma have a significant negative effect on J o u r n a l P r e -p r o o f both mental and physical health 17, 18 and is related to participation in unhealthy and nonparticipation in healthy behaviors 17 . Good sleep is part of good quality of life. High quality and efficient sleep of adequate duration helps to consolidate memory, regulate the immune system, and coordinate neuroendocrine functions 19, 20 . In contrast, poor sleep quality leads to a board range of adverse outcomes, including cardiovascular diseases, poor mental health status, cognitive impairment, and even overall mortality 21, 22 . Emerging evidences showed poor sleep quality among COVID-19 survivors after hospital discharge 23, 24 . The results showed that 29.5% of COVID-19 survivors in Wuhan, China were bothered by sleeping disorder 23 , while 40% of COVID-19 survivors in Italy reported insomnia 24 . Self-stigma was associated with poor sleep quality among people living with HIV 25 . To our knowledge, there was a lack of studies investigating the association between stigma and sleep quality among COVID-19 survivors. Resilience is a personal protective factor, and refers to a stable trajectory of healthy functioning across time following adversity, which includes the capacity for the processes of generative experiences, cognitive flexibility, and positive emotions 26 . Resilience has been suggested to facilitate the "recovery" process for individuals to return to the state before trauma and enhance their mental health 27 . One study reported negative associations between resilience and poor mental health status among COVID-19 patients 28 . Social support from important others (e.g., family members and friends) may be vital external resources for survivors to cope with their stress and negative events. It is also a key source of resilience that can facilitate individuals' mental health 29 . The authors identified three studies investigating the association between social support and mental health among COVID-19 patients 23, 30, 31 . Only one study was conducted among COVID-19 survivors, and reported a significant negative association between social support and post-traumatic stress disorders 32 . Resilience and social support are potentially important protective factors of sleep quality among different population 33-38 , including general population during COVID-19 pandemic 38 . Researchers suggested that COVID-19-related stigma would lead to overall decreased resilience and social support 39, 40 . Mediating effects of social support and resilience on the associations between encountering adverse situations and their outcomes were demonstrated in numerous studies. For instance, two studies revealed their mediating effects on the associations between COVID-19-related stressful experiences and acute stress disorder among Chinese college students 41 , and between COVID-19-related fear and mental health (e.g. depression, anxiety and stress) among Turkish healthcare professionals 42 . In addition, mediation role of social support and resilience on the association between stigma and mental J o u r n a l P r e -p r o o f health was also shown in different groups of patients and minorities, such as people living with HIV 43, 44 , schizophrenic patients 45 transgender and cisgender sexual minorities 46 . In this study, we investigated the association between stigma (discrimination experiences, self-stigma and perceived affiliate stigma) and sleep quality among COVID-19 survivors six months after hospital discharge. We also hypothesized that resilience and social support would mediate the associations between stigma and sleep quality. This is a secondary analysis of a cross-sectional telephone survey investigating mental health status of COVID-19 survivors six months after hospital discharge. A total of 199 COVID-19 survivors completed the telephone interview during July to September, 2020. Five hospitals located in five cities in China (Wuhan, Shenzhen, Zhuhai, Dongguan and Nanning) were included as study sites. Among the five cities, Wuhan is the most affected by the pandemic whereas Nanning is the least affected. Shenzhen, Zhuhai, Dongguan had the moderate level of case load. As of November 9, 2020, the number of recovered COVID-19 patients in these Chinese cities was 46,475 in Wuhan, 72 in Nanning, 468 in Shenzhen, 109 in Zhuhai, and 100 in Dongguan 47 . Inclusion criteria were: 1) aged at least 18 years, 2) receiving confirmatory diagnosis of COVID-19, 3) being hospitalized, and 4) discharged from hospitals between February 1 and April 30, 2020. According to the COVID-19 treatment guidelines in China, recovered COVID-19 patients should be quarantined for 28 days after hospital discharge (14 days in designated facilities followed by another 14-day home-based quarantine). Medical staff who were responsible for following up discharged COVID-19 patients contacted all COVID-19 patients who were discharged between February 1 and April 30, 2020 listed in their registries. Prospective participants were screened for eligibility to join the study by the medical staff. There were 317 recovered COVID-19 patients in the registries of the five hospitals. Among these recovered patients, 27 were under 18 years old, 22 changed their telephone number, 1 deceased in car accident, and 68 refused to join the study. Consequently, a total of 199 eligible patients provided consent and completed the study. The response rate of the five study sites ranged from 63.3% to 77.8% and the overall response rate was 74.5% (199/267). The participants were briefed about the study information and invited for a telephone interview by the medical staff. Verbal informed consent was obtained, witnessed and formally recorded. Participants were assured that identifiable information would be kept confidential, and withdrawal from study would not affect their right to use any treatment services. Trained interviewers made appointments with the participants and confirmed their informed consent before conducting the telephone interview. Each interview lasted about 35 minutes. The study was conducted in accordance with the Declaration of Helsinki of 1975, as revised in 2008, and the protocol was approved by the Sun Yat-sen University (Shenzhen) (Ref#2020-031). A panel consisting of one epidemiologist, two public health researchers, a health psychologist, and a clinician was formed to develop the questionnaire used in the current study. Participants were asked to report on socio-demographics, such as age, gender, permanent residency status, highest educational level, relationship status, monthly personal income, employment status, and whether having a child. Characteristics of SARS-Cov-2 infection were retrieved from their medical records, including severity level of COVID-19 at hospital admission, days in hospital, ICU admission, and the use of invasive ventilation and corticosteroid therapy. In addition, participants were asked whether they had family member(s) with COVID-19 or died of COVID-19. Participants also reported mental health support services utilization during hospitalization and after hospital discharge. Global sleep quality over a 7-day recall period was assessed based on participants' rating by using the validated single-item Sleep Quality Scale (SQS) (from 0 to 10), with higher score indicating better sleep quality 48 . Different cut-off scores were assigned for different levels of sleep quality (0=terrible, 1-3=poor, 4-6=fair, 7-9=good, and 10=excellent) 48 . Compared with lengthier sleep questionnaires [e.g., the Pittsburgh Sleep Quality Index (PSQI), and the Morning Questionnaire-insomnia (MQI)], this scale possessed favorable measurement characteristics to assess sleep quality 48 . This scale has been used in numerous published studies which included those conducted among Chinese populations and it was shown to be a reliable and valid measure 49-53 . Participants were also instructed to compare their current sleep quality with that before SARS-Cov-2 infection based on the following response J o u r n a l P r e -p r o o f categories: 1=get worse, 2=no change, 3=get better. Furthermore, whether participants were bothered by sleep disorders was assessed by one item extracted from the PHQ-9 scale 54 . This item asked participants whether they had trouble falling or staying asleep, or sleeping too much in the past two weeks based on the following response categories: not at all, several days, more than half the days, and nearly every day. Participants were asked whether they had the following discrimination experiences, including being fired, being treated unfairly by employers, being socially excluded by co-workers, family members, friends, and neighbors/communities, being discriminated by healthcare providers, and whether there is someone who intentionally disclose their COVID-19 survivor identity (0=no and 1=yes). A composite indicator variable was constructed by counting the number of discrimination experience (ranging from 0 to 8). Self-stigma was measured by the validated Chinese version of the Self-Stigma Scale 55 . Sample items included "I fear that others would know that I was infected with SARS-Cov-2". Items were rated on Likert scale from 1 (strongly disagree) to 4 (strongly agree). The Cronbach's alpha was 0.94. One factor was identified by exploratory factor analysis, explaining for 67.3% of total variance. One factor was identified by exploratory factor analysis, explaining for 73.7% of total variance. Resilience was measured by the 2-item Connor-Davidson Resilience Scale (CD-RISC2) 57 . The two items ("Able to adapt to change" and "Tend to bounce back after illness or hardship") are rated on Likert scales, ranging from 1 (strongly disagree) to 5 (strongly agree). A higher total score indicates a higher level of psychological resilience. The Cronbach's alpha of the scale was 0.89 in the current sample. One factor was identified by exploratory factor analysis, explaining for 90.3% of total variance J o u r n a l P r e -p r o o f Social support was measured by four questions to measure the extent of received emotional and instrumental (e.g. financial) support from family and friends 29 . Items were rated on a 10-point Likert Scale ranging from 0 (none) to 10 (tremendous). The scale had good reliability in the current sample (Cronbach's alpha: 0.80). One factor was identified by exploratory factor analysis, explaining for 62.8% of total variance. Global sleep quality measured by score of the single-item SQS was used as the dependent variable. The associations between independent variables of interest (discrimination experience, self-stigma, perceived affiliate stigma, resilience and social support) and the dependent variable were tested using multivariate linear regression models, after adjusted for Slightly more than half of the participants were female (53.3%, n=106) and aged 41 years or older (53.8%, n=107). Regarding highest education attained, 43.2% of the participants attained college education (n=86), while 28.6% for senior high school (n=57) and 26.6% for junior high school or below (n=53). For employment status, 40.2% of the participants were full-time employed (n=80), 16.1% were freelancers (n=31), 7.5% were students (n=15), 27 .6% were retired (n=55), and 8.5% were unemployed (n=17). Most of the participants were married or cohabited with a partner (81.9%, n=163), without permanent residency of the city J o u r n a l P r e -p r o o f (73.4%, n=146), with personal income less than RMB 6,000 (approximately USD 900) per month (74.4%, n=148), and having at least one child (80.4%, n=160). According to their medical record, 55.8% of participants were at moderate level of severity at hospital admission (n=111), 57.3% spent no more than 28 days in hospital (n=114), 97.5% without ICU admission (n=194), and 96.5% and 87.9% did not undergo invasive ventilation (n=192) or corticosteroid therapy (n=175). Among the participants, 44.7% (n=89) reported having at least one family member infected with COVID-19, and 1.5% (n=3) had a family member died of COVID-19. Less than half of the participants received mental health support services during hospitalization (n=85, 42.7%) or after discharge (n=44, 22.1%). (Table 1 ) J o u r n a l P r e -p r o o f The mean score of global sleep quality measured by the single-item SQS was 6 J o u r n a l P r e -p r o o f Social Support Scale d 11.7 (5.5) a Self-stigma Scale, 9 items, Cronbach's alpha: 0.94, one factor was identified by exploratory factor analysis, explaining for 67.3% of total variance b Affective dimension of the Affiliate Stigma Scale, 7 items, Cronbach's alpha: 0.94, one factor was identified by exploratory factor analysis, explaining for 73.7% of total variance c The 2-item Connor-Davidson Resilience Scale, 2 items, Cronbach's alpha: 0.89, one factor was identified by exploratory factor analysis, explaining for 90.3% of total variance d Social Support Scale, 4 items, Cronbach's alpha: 0.80, one factor was identified by exploratory factor analysis, explaining for 62.8% of total variance 3.3 Discrimination experience, self-stigma, perceived affiliate stigma, resilience and social support Over 30% of the participants had experience of social exclusion from neighbors or communities (35.2%) or having others intentionally disclosing their COVID-19 survivor identity (37.7%). Relative fewer of them had other discrimination experiences, such as being fired (8.0%) or treated unfairly by employers (8.5%), being socially excluded by co-workers (12.6%), family members (7.5%) or friends (23.6%), or being discriminated by healthcare providers (9.0%). The mean scores and the standard deviation (SD) for the Self-Stigma Scale, the affective dimension of the Affiliate Stigma Scale, the CD-RISC2 Scale, and the Social Support Scale were presented in Table 2 . Self-stigma (B=-0.35, β=-0.25, P=0.001) and affective dimension of the perceived affiliate stigma (B=-0.30, β=-0.17, P=0.02) were significantly and negatively associated with social support. Self-stigma was negatively associated with resilience (B=-0.04, β=-0.15, P=0.08). Social support (B=0.04, β=0.15, P=0.02) and resilience (B=0.14, β=0.12, P=0.06) were positively associated with sleep quality. In addition, self-stigma was negatively associated with sleep quality (B=-0.10, β=-0.29, P<0.001). The indirect effect of self-stigma on sleep quality through social support and resilience was COVID-19 might have long-term impact on survivors' sleep quality. In this study, the prevalence of terrible/poor sleep quality was much higher than healthy Chinese factory workers during the pandemic (10% versus 3.7%) 6 . As compared to a group of COVID-19 survivors who were recently discharged from hospital, the prevalence of sleep disorders in the past two weeks was slightly higher in our sample (33.7% versus 29.2%) 54 . Moreover, about one quarter of the participants reported a decrease in sleep quality as compared to the time before they were hospitalized. In line with previous studies conducted in other population 33-38 , resilience and social support are two significant protective factors of sleep quality among COVID-19 survivors. Indeed, both resilience and social support are important coping resources that can help individuals to adaptively cope with difficulties and stress 65 . Consistent with our hypothesis, resilience and social support mediated the associations between self-stigma/ perceived affiliate stigma and sleep quality. Similar mediation effects were also observed in previous studies [43] [44] [45] [46] . It is possible that self-stigma and perceived affiliate stigma would diminish J o u r n a l P r e -p r o o f coping resources of COVID-19 survivors and hence lead to poor sleep quality. Enhancing resilience and social support may be useful to mitigate the effects of stigma on sleep quality among COVID-19 survivors. Strengths-based CBT may be a useful strategy to build up resilience 67 . It is also important to provide COVID-19 related health education to general public and family members of the survivors, so as to reduce unrealistic fears and stigma toward COVID-19 survivors. These approaches may improve social support for COVID-19 survivors. This was one of the first studies looking at associations between COVID-19 related stigma and sleep quality among COVID-19 survivors. It had the strengths of recruiting survivors in multiple Chinese cities. However, it also had some limitations. First, the relatively small sample size limited the statistical power. Second, COVID-19 survivors were recruited in five Chinese cities, generalization should be made cautiously to other geographic locations in China. Third, we were not able to collect information from survivors who refused to participate in the study. Those who refused to complete the survey may have different characteristics from the participants. Selection bias existed. Fourth, parts of the data were self-reported, and verification was not feasible. Recall bias may have occurred. Moreover, we did not collect information about history of psychiatric disorders, which was a significant factor of post-discharge sleep quality. Furthermore, this was a cross-sectional study and could not establish causal relationship. COVID-19 might have long-term impact on survivors' sleep quality. Number of discrimination experiences, self-stigma and perceived affiliate stigma were associated with poor sleep quality among COVID-19 survivors, while social support and resilience were protective factors. Resilience and social support mediated the associations between selfstigma/ perceived affiliate stigma and sleep quality. Reducing discrimination and stigma originated from general public, and reducing self-devaluation, improving resilience and social support among COVID-19 survivors might be useful strategies to improve sleep quality among COVID-19 survivors. 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