DOI: https://doi.org/10.21203/rs.3.rs-2107302/v1
Purpose: This study aimed to estimate the prevalence and severity level of stigma experienced by patients who recovered from COVID-19 in the post-vaccination period and to explore associated factors.
Methods: This study consisted of two phases. The first phase involved the translation and validation of the COVID-19-related stigma questionnaire (15 items). The second phase was a questionnaire-based cross-sectional survey conducted between January and February 2022. Questionnaires regarding stigma, negative emotions (Depression Anxiety Stress Scale-21), and personal and admission information were given to patients who recovered from COVID-19 in Thailand (N = 354).
Results: The prevalence of stigma among patients who recovered from COVID-19 was 50.8%. Slight, moderate, and high stigma levels were reported by 40.7%, 9.3%, and 0.8% of the total participants, respectively. Our study found that admission duration and recovery duration were inversely related to stigma. Whereas depression, anxiety and stress were directly correlated with stigma. Other associated factors included age, income and education level.
Conclusion: Social stigma related to COVID-19 existed even after vaccination and still took a toll on mental health. Stigma might decrease through time in patients who recovered from COVID-19, but not completely disappear. Our findings suggested providing appropriate assessment and help to patients who recovered from COVID-19, especially during the initial stage of their return to the community.
Since the emergence of the coronavirus disease-2019 (COVID-19), the world has been overwhelmed with fear [1]. Stigma has become a public concern, especially in the population who were at risk of contracting the disease [2, 3]. A meta-analysis published in 2022 calculated that the pool prevalence of COVID-19-related stigma was 35% across all population [3]. Among these groups, patients who recovered from COVID-19 and returned to their communities are one of the most vulnerable groups [4].
Stigmatization is conceptualized as a negative social process that is characterized by discrimination, exclusion, rejection, blame or devaluation as a result of a person’s undesirable characteristics [5]. This social issue has been addressed at the forefront by several world class organizations such as the World Health Organization, The United Nations Children's Fund, and the International Federation of Red Cross and Red Crescent Societies. Stigma has a prominent negative effect on mental health, both short term and long term [7]. Adverse psychological consequences caused by COVID-19 stigmatization included anxiety, depression, suicidal behaviour and diminished quality of life [8, 9]. Moreover, stigmatization causes resistance to enter a treatment system, and therefore might propagate disease transmission [3].
The success of vaccine development against COVID-19 has brought tremendous relief. Community vaccination significantly reduced stigma [10]. However, the stigmatization against COVID-19 is far from over [11]. In 2021, a study conducted in China found that the nationwide discrimination rate toward patients who recovered from COVID-19 was still high (62.26%) [12]. In 2022, under COVID Zero approach with strict lockdown, stigmatization in China continues to be apparent [13]. Nevertheless, this information might not represent the countries that endorse less strict policies. For example, in Thailand, a mixture of response is observed. Some population reported high stigma, whereas some reported slightly to none [14].
Given the uncertainty of the pandemic caused by the continuous evolution of new variants of the coronavirus and an ongoing report of Long COVID [11], despite the availability of vaccination coupled with human habituation process [15], stigmatization currently remains a focus. However, several factors can contribute to the disparity of reaction in the later waves. To provide optimal help and support to the population in need, gaining a better insight into COVID-19 stigmatization in the subsequent phase is necessary. To date, limited information is available regarding the issue. Thus, this study aimed to estimate the prevalence and severity of stigma and explore factors associated with stigmatization among patients who recovered from COVID-19 and return to their society during the post-vaccination period.
This study consisted of two phases. The first phase involved the translation and validation of COVID-19-related stigma questionnaire. The second phase was a cross sectional study using a set of questionnaires to estimate the severity of stigma in patients who recovered from COVID-19 and stigma-associated factors.
The study protocol was approved by Vajira Institutional Review Board, faculty of medicine, Vajira Hospital, Navamindradhiraj University (COA 218/2564).
The first step of the translation involved identifying a pre-existing questionnaire of interest. Our criteria for consideration were as follows: 1) questions specifically inquire about stigma resulting from having COVID-19, 2) contain both enacted and perceived domains of stigma, 3) available in English language, 4) validated by an expert committee and a pilot population, 5). has an acceptable level of reliability (indicated by Cronbach’s alpha of at least 0.7 [16] and 6) has an appropriate length (< 20 min to complete [17]). According to these considerations, a questionnaire developed by Dar et al. was eligible [18]. This questionnaire was originally adapted from Ebola-related stigma questionnaire [19]. It consisted of 15 items on a 4-point Likert scale. The stigma domains covered were enacted stigma (ES), internalized stigma (IS), perceived external stigma (PES), and disclosure concerns (DC). This COVID-19-related stigma questionnaire was used in assessing COVID-19 survivors who were discharged from the hospital. In this study, the coefficient of Cronbach’s alpha was 0.92.
After contacting the author and obtaining permission to translate the pre-existing questionnaire, the next steps included the following: 1) forward translation from English to Thai by two independent translators (a professional translator and a bilingual Thai psychiatrist), 2) discussion and making a decision on the best version of each item by 3 members in our team (two psychologists and one psychiatrist), 3) backward translation from Thai to English and 4) sending the backward translated version to the original author for approval. The backward translated version is presented in Table 1.
| Enacted stigma |
|---|
| 1. I feel upset to see the reactions of people around me who know I had COVID-19. |
| 2. I have stopped socializing with those who have reactions toward me when they know I have COVID-19. |
| 3. I have lost some friends because I had COVID-19 infection. |
| Disclosure concerns |
| 4. I am very careful to tell others that I had COVID-19 infection |
| 5. I worry that those who know I had COVID- 19 infection will tell others. |
| Internalized stigma |
| 6. I feel that I am not as good as others because I had COVID-19 infection. |
| 7. COVID-19 infection makes me feel like a bad person. |
| 8. I feel guilty because I had COVID-19 infection. |
| Perceived external stigma |
| 9. Most people think COVID-19 patients are disgusting. |
| 10. Most people are afraid of those with COVID-19 infection. |
| 11. Most people with COVID-19 infection will be rejected if other people know about it. |
| 12. People I know may treat COVID-19 patients like an outcast. |
| 13. People I know may feel uncomfortable to be around COVID-19 patients |
| 14. People I know may reject COVID-19 patients |
| 15. People I know do not want COVID-19 patients to be around their children |
After the translated version was approved, a pilot test of the Thai version was conducted on 10 Thai patients with COVID-19 who were discharged from the hospital. No change in the questionnaire was required. Thereafter, the content validity was measured by the content validity index (CVI) rated by five experts (three psychiatrists and two psychologists). Each item had CVI > 0.79 [20] and the average CVI of the questionnaire was 0.95. The reliability measured by the coefficient of Cronbach’s alpha conducted in 300 participants was 0.91.
Phase 2: Cross-sectional study of the severity of stigma and associated factors in patients who recovered from COVID-19
Participants
The calculated sample size was 354. Our inclusion criteria were as follows: 1) had a positive confirmatory test of COVID-19, 2) admitted and discharged from Vajira Hospital system (main hospital, field hospital, designated hotels for mild symptoms and home isolation) between June 1, 2021 and February 28, 2022 and 3) were at least 18 years old. The exclusion criteria were refusal to participate and nonfluency in the Thai language.
Instruments
The set of questionnaires consisted of three sections. The first part was the personal data (age, sex, education, occupation, income, marital status, number of children, type of house, and underlying medical or psychiatric illness) and admission data (disclosure of infection status, admission setting, frequency of contact with relatives or friends, admission duration and recovery duration, i.e., length between discharge and survey date).
The second section was the COVID-19-related stigma questionnaire (translated version). It comprised 15 items, which covered four stigma domains (Table 1), namely enacted stigma (ES), disclosure concerns (DC), internalized stigma (IS) and perceived external stigma (PES). A 4-point Likert scale was used. Regarding the result interpretation, a higher score indicates a higher stigma level. Since the original study did not provide levels of classification, in the present study, we divided the total score of 60 into five intervals as follows 1) not at all (0 -7.49), 2) slightly (7.5 -22.49), 3) moderately (22.5 -37.49), 4) very (37.5 -52.49) and 5) extremely stigmatized (52.5–60) [21].
The last section included the Depression Anxiety Stress Scale (DASS-21) Thai version [22]. This self-report questionnaire measures negative emotional states, which include depression, anxiety and stress. The scale has a total of 21 questions and each emotion has seven questions. This questionnaire had Cronbach’s alpha coefficient of 0.75. The resulting score was classified into five levels; normal, mild, moderate, severe and extremely severe. A higher score indicated a more severe condition.
This cross-sectional study was conducted in January to February 2022. During the survey, 66% -70% of the Thai population had already received 2 doses of vaccines [23]. Simple random sampling was performed from the list of patients who were admitted and discharged between June 2021 and February 2022. The data collection was conducted after discharge via chat application and/or telephone. After obtaining informed consent, our research team asked the participants to complete the set of questionnaires based on their experience at the time of survey. No incentive was offered to the participants.
Descriptive statistics was used in this study. Categorical data were analyzed and presented as frequency and percentage. Continuous data were summarized and reported in mean, standard deviation and range. We calculated the correlation of categorical variables with the chi-square and Fisher’s exact test. In the investigation of the differences of the mean among groups of categorical variables, we used the t-test and analysis of variance (ANOVA). Pearson’ s correlation coefficient was used to determine the relationship between continuous variables. Post-hoc analysis was performed with Turkey’s honest significant difference (HSD) test and Scheffé test. P-value < 0.05 indicated significance. This analysis used IBM SPSS statistics version 28 (IBM Corp., Armonk, NY, USA).
A total of 354 recovered patients participated in the study. Table 2 depicts the characteristics of the participants and information regarding admission. Approximately two-thirds (67.2%) were female. The age of the participants ranged from 18 to 85, and the median age was 37 years old. The majority of the respondents disclosed their infection status to non-family acquaintances (78%) and contacted relatives or friends every day (90%). The duration of admission ranged from 3 to 15 (mean = 11) days. Approximately half (49.7%) of the survey took place later than 3 months after discharge. All participants had mild to moderate symptoms and did not require ventilator. We did not report the information regarding the admission setting because of its changeability within the hospital system.
| Variables | Category | Frequency N (%) |
|---|---|---|
| Demographic data | ||
| Sex | Male Female | 116 (32.8) 238 (67.2) |
| Age (years) | 18–30 31–40 41–50 51–60 > 60 | 155 (43.79) 72 (20.34) 50 (14.12) 44 (12.43) 33 (9.32) |
| (Mean = 37.17, S.D. = 14.76, Min = 18, Max = 85) | ||
| Marital status | Single Married/live together Divorced/separated | 189 (53.4) 130 (36.7) 35 (9.9) |
| Number of children | None 1 2 > 2 | 199 (56.2) 50 (14.1) 67 (18.9) 38 (10.7) |
| Education | No formal education Primary school High school Diploma Bachelor’s degree Master’s degree or higher | 9 (2.5) 54 (15.3) 88 (24.9) 37 (10.5) 154 (43.5) 12 (3.4) |
| Occupation | Unemployed Students Civil servant Company employee Freelancer Business owner | 52 (14.7) 34 (9.6) 72 (20.3) 95 (26.8) 54 (15.3) 47 (13.3) |
| Income | 0–5,000 THB 5,001–10,000 THB 10,001–15,000 THB 15,001–20,000 THB 20,001–25,000 THB > 25,000 THB | 76 (21.5) 47 (13.3) 81 (22.9) 57 (16.1) 28 (7.9) 65 (18.4) |
| Type of house | Detached house/ semi-detached house Town house/ town home Commercial building Flat/dormitory/apartment Condominium Slum | 90 (25.4) 50 (14.1) 40 (11.3) 82 (23.2) 24 (6.8) 68 (19.2) |
| Underlying medical illness | Absent Present (*can select multiple answers) Hypertension Diabetes mellitus Allergy Others | 249 (70.3) 105 (27.9) 42 (11.9) 21 (5.9) 18 (5.1) 24 (6.8) |
| Underlying psychiatric illness | Absent Present (*can select multiple answers) Depressive disorder Anxiety disorder Psychotic disorder Other | 344 (97.2) 10 (2.8) 3 (0.8) 4 (1.1) 2 (0.6) 1 (0.3) |
| Family history of psychiatric disorder | Absent Present (*can select multiple answers) Depressive disorder Anxiety disorder Psychotic disorder Others | 347 (98.0) 7 (2.0) 3 (0.8) 4 (1.1) 0 (0) 0 (0) |
| Data regarding admission | ||
| Disclosure of infection status to non-family acquaintances | No Yes | 78 (22.0) 276 (78.0) |
| Frequency of contact with relatives or friends during admission | Never Every 3–4 days Every 1–2 days Everyday | 3 (0.8) 25 (7.1) 5 (1.4) 321 (90.7) |
| Admission duration | 1–7 days 8–14 days > 14 days | 43 (12.2) 309 (87.3) 2 (0.6) |
| (Mean = 11.35, S.D.= 2.85, Min = 3, Max = 15) | ||
| Recovery duration (Length between discharge and survey date) | 1–7 days 8–14 days 15–28 days 28–90 days > 90 days | 22 (6.2) 58 (16.4) 59 (16.7) 40 (11.3) 176 (49.7) |
| (Mean = 91.83, S.D. = 78.20, Min = 2, Max = 219) | ||
Table 3 displays the level of depression, anxiety and stress measured by DASS-21 at the time of survey. The majority of the participants were in normal emotional states. Data shows that 15.25%, 19.2% and 13.84% of the participants experienced at least mild level of depression, anxiety and stress respectively.
| Level | Depression | Anxiety | Stress |
|---|---|---|---|
| N (%) | N (%) | N (%) | |
| Normal | 300 (84.75) | 286 (80.80) | 305 (86.16) |
| Mild | 21 (5.93) | 23 (6.50) | 20 (5.65) |
| Moderate | 12 (3.39) | 12 (3.39) | 13 (3.68) |
| Severe | 10 (2.82) | 12 (3.39) | 8 (2.26) |
| Extremely severe | 11 (3.11) | 21 (5.93) | 8 (2.26) |
Figure 1 illustrates data regarding the severity level of stigmatization experienced by the study participants. In this study, approximately half (50.8%, N = 180) of the sample reported some degree of stigma. The major portion of this group experienced slight stigmatization (N = 144). Whereas none reported extreme stigmatization. From the total score of 60, the results ranged from 15 to 45 with a mean score of 24.57 (SD = 9.34), which fell into the lower zone of moderate stigmatization.
Results for each stigma domain were summarized and reported in score percentage (mean score/full score) and S.D: ES, 38.67% (4.52/12), SD = 2.05, DC: 38.38% (3.07/8), SD = 1.59, IS: 32.17% (3.86/12), SD = 1.70 and PES: 46.89% (13.13/28), SD = 6.04.
As regards the personal characteristics of the participants, the stigma level was significantly associated with the number of children (p = 0.040), education level (p = 0.036), and income (p = 0.024). No significant difference was found according to the post-hoc analysis of each factor on the overall level of stigma. Regarding the relationship with negative emotions measured by DASS-21, the overall level of stigma was also moderately correlated with stress (r = 0.583, p < 0.001), anxiety (r = 0.506, p < 0.001) and depression (r = 0.528, p < 0.001).
Regarding factors concerning admission, the correlation analysis revealed a very weak inverse correlation between the overall level of stigma and duration of admission (r = − 0.151, p = 0.001) and a weak inverse correlation with recovery duration (r = − 0.222, p = 0.001). A similar pattern of relationship was observed between the duration of admission/recovery and negative emotions measured by DASS-21 (Table 4).
| Variables | Stress | Anxiety | Depression | Total stigma | ||||
|---|---|---|---|---|---|---|---|---|
| r | p-value | r | p-value | r | p-value | r | p-value | |
| Admission duration | − .107 | .045 | − .119 | .025 | − .105 | .049 | − .151 | .004 |
| Recovery duration | − .111 | .038 | − .056 | .291 | − .117 | .028 | − .222 | 0.00** |
The one-way ANOVA revealed significant effects of the education level (F (5, 348) = 2.24, p = 0.044) and number of children (F (3, 350) = 2.63, p = 0.03) on the PES domain. According to HSD post-hoc test on these two factors, the only significant difference was between having 2 children and having no children (p = 0.029). The age of the participants was inversely related to the DC domain (r = − 0.175, p = 0.001).
Concerning admission data, admission duration was inversely correlated with the DC domain (r = − 0.181, p = 0.001) and PES (r = − 0.149, p = 0.005). The length between the date of discharge and survey was inversely correlated with all four domains of stigma: ES (r = − 0.183, p = 0.001), DC (r = − 0.178, p = 0.001), IS (r = − 0.122, p = 0.022) and PES (r = − 0.201, p = 0.000).
This study confirms that COVID-19-related stigma still exists even in the post-vaccination period. Nevertheless, a downward trend of the risk of stigmatization was found compared with previous research before vaccination. We analysed the tendency of stigmatization in two dimensions: prevalence and severity level. Although no major change concerning the prevalence of stigmatization was observed but the severity decreased significantly.
In this study, the prevalence of stigma experienced by patients who recovered from COVID-19 was 51.8%. In previous studies, the prevalence ranged from 29.4–84.5% in survivor-reported studies [4, 6, 25–27] and 45.9% − 64% in public-reported study [12, 24, 25]. Therefore, the value of 51.8% reported in this study still fell within the former range. However, various stigma measurement tools were used in these surveys.
In terms of the change in the stigmatization level, we analysed the tendency using three methods. First, we compared it with the study by Dar et al. [18], which used the original version of the questionnaire. The mean stigma score in Dar et al. was 28.5, whereas, in this study, the mean score was 24.6. Second, we compared our results with the study that classified stigma into levels. Among the survivor-reported studies, only the study by Wahyuhadi et al.4 presented the level of stigma. Wahyuhadi et al. found that 83.55% of the survivors experienced moderate-to-high stigmatization, whereas, only 19.9% reported moderate-to-high levels of stigma in this study, Third, the comparison was made to studies within Thailand. Since no other study has focused on recovered patients, we compared our results with a study conducted by Ruengorn et al. [14] which stated that the prevalence of moderate-to-high COVID-19 related public stigma was 75.8%. Accordingly, from these three means of comparison, less severity of stigmatization was observed.
This study also highlighted the presence of mental health problems related to COVID-19 stigmatization even in the post-vaccinated period. Our findings showed that stigma was related to stress, depression, and anxiety. This information was well aligned with previous knowledge regarding stigma and mental health [4, 7, 26]. Stigmatization usually peaked in the initial stage after patients’ return to the community [7] since stigmatized survivors often had to endure an extended period of home isolation, which resulted in a heightened sense of loneliness, discrimination or guilt [7].
Our results indicated that stigma decreased through time. Longer duration of admission and recovery were associated with a lower level of stigma. However, it did not disappear completely. Given that approximately 40% of the survey took place within 1 month after discharge, 50% of the participants experienced stigmatization; therefore, stigma existed beyond 1 month after recovery. This was possibly caused by the image of the infected individuals as having substandard hygiene and therefore were more likely to have re-infection and spread the disease [24]. Moreover, COVID-19 in the post-vaccination era remains a stigma because of the growing reports of Long COVID conditions, emergence of new variants, and breakthrough deaths of vaccinated people [6, 28, 29].
In this study, other factors that were associated with stigma included participants’ age, number of children, education, and income. The age of the survivors was inversely related the DC domain. The elder people are considered vulnerable, as they have a poorer prognosis, and higher rates of hospitalization and death [29]. Accordingly, they might not be willing to share their infection status among seniors in the community. Another factor was the number of children of the participants. The post-hoc analysis found that patients who have > 1 child tend to have higher stigma than childless ones. Children were also viewed as vulnerable because they lack immunization. During the survey, COVID-19 vaccination for children > 5 years old had just started [30]. Moreover, parents were reluctant to have their children vaccinated [31]. Therefore, most children were not vaccinated at the time. Fear of transmission to the children might contribute to stigma. The two remaining factors were the levels of education and income. These two variables were found to be associated with stigma severity in several previous studies [24, 25, 32]. A possible explanation is that the level of education was linked to the level of knowledge about COVID-19. People who have a low knowledge levels about COVID-19 tend to experience more stigma [24, 25, 33]. On the contrary, income might be related to income reduction from having to isolate themselves if infected [34].
Regarding clinical implications, since stigmatization and negative emotions are likely to peak in the initial stage after the return to the community, appropriate assessment and help should be emphasized in this period. Special attention should be paid to the older population, children, and people with a low socioeconomic status.
This study is among the first studies that focused mainly on post-vaccination period stigma. Moreover, unlike other surveys, we included patients with a wide range of recovery period. Therefore, this allowed us to examine the relationship between time and stigma.
This study has some limitations. First, this study could not examine causal relationships between factors and stigma. Second, we did not explore the occurrence and relationship with Long COVID condition, which might confound the relationship with other factors. Lastly, generalizability might be limited to some extent because the studied population were restricted to patients with mild-to-moderate conditions and within the context of Thailand. Accordingly, cross-contextual studies are encouraged [35].
Social stigma related to COVID-19 still exists and takes a toll on mental health even after the availability of vaccines. Stigma might decrease through time in patients who recovered from COVID-19 patients, but not completely disappear. Our findings suggest providing appropriate assessment and help to the patients who recovered from COVID-19, especially in the initial stage of their return to the community.
Statements and Declarations
The authors declare no conflict of interest.
Acknowledgement
This research received funding from the National Research Council of Thailand.