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Experienced stigma and self-stigma in Chinese patients with schizophrenia
General Hospital Psychiatry 35 (2013) 83–88
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Experienced stigma and self-stigma in Chinese patients with schizophrenia Ying Lv, Ph.D. a, b, Achim Wolf c, Xiaoping Wang a,⁎ a b c
Mental Health Institute of the Second Xiangya Hospital, Central South University, Changsha Hunan 410011, China Forensic Psychiatry Department of Nanjing Brain Hospital, Nanjing Medical University, Nanjing Jiangsu 210029, China Department of Psychiatry, Warneford Hospital, University of Oxford, Warneford Lane, Headington, Oxford, OX3 7JX, United Kingdom
a r t i c l e
i n f o
Article history: Received 11 May 2012 Accepted 17 July 2012 Keywords: Schizophrenia Psychiatric stigma Self-stigma
a b s t r a c t Objective: To investigate experienced stigma and self-stigma in patients with schizophrenia in mainland China. Methods: Ninety-five patients with schizophrenia, enrolled between January 2011 and March 2011, completed Chinese versions of two self-report questionnaires: the Internalized Stigma of Mental Illness (ISMI) scale and the Modified Consumer Experiences of Stigma Questionnaire (MCESQ). They also completed two other self-report questionnaires: the Social Support Rating Scale (SSRS) and the World Health Organization Quality of Life (WHOQOL-BREF) questionnaire. Patients were also assessed by a senior psychiatrist using the Scale for Assessment of Positive Symptoms (SAPS) and the Scale for Assessment of Negative Symptoms (SANS). All analyses were performed using SPSS 17.0 and included descriptive statistics, correlation analysis and multiple linear regression. Results: On the ISMI, the percentage of participants who rated themselves above the mid-point of 2.5 (meaning high level of self-stigma) on subscales and overall score was 44.2% (n=42) for alienation, 14.7% (n=14) for stereotype endorsement, 25.3% (n=24) for perceived discrimination, 32.6% (n=31) for social withdrawal and 20.0% (n=19) on the overall score. On the MCESQ, the percentage of participants who rated themselves above the mid-point of 3.0 on subscales and overall score was 24.2% (n=23) for stigma, 1.1% (n= 1) for discrimination and 1.1% (n=1) on the overall score. Some socioeconomic variables, but not positive or negative symptoms, were related to the severity of psychiatric stigma. Conclusions: Results document the seriousness of experienced stigma and self-stigma in persons with schizophrenia. Strategies are needed to improve how governments and persons with schizophrenia cope with stigma. © 2013 Elsevier Inc. All rights reserved.
1. Introduction Many factors influence stigma in patients with mental disorders, and cultural context plays an essential role in its formation. Deeply held cultural and philosophical beliefs can promote stigma and act as a barrier to rehabilitation and recovery. In China, traditional cultural values, such as Confucianism, Taoism and Buddhism, strongly influence patients' and society's understanding and interpretation of mental illness and associated stigma. The core virtue in Confucianism, which has shaped Chinese culture for over 2000 years, is filial piety [1]. Filial piety encourages individuals to show respect for their elders and ancestors and to act in an ethical way, in harmony with the self, family, society and the universe. The extreme importance of social harmony and its maintenance take precedence over the expression of one's own opinions and values [2]. People are seen as living first and foremost in a strict network of social interaction (or guanxi). The maintenance of guanxi is dependent on the reciprocal returning of ⁎ Corresponding author. Tel.: +86 0731 85292182; fax: +86 0731 85360162. E-mail address: [email protected] (X. Wang). 0163-8343/$ – see front matter © 2013 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.genhosppsych.2012.07.007
favors [3] which is itself directly related to the concept of “face” (or mianzi). Face is a crucial aspect of social identity and represents power and standing in Chinese social hierarchy. Thus, preserving face or mianzi is a part of daily life. Diagnosis of schizophrenia results in a “loss of face” for the individual [4], and suffering from mental illness is equated with extreme shame in Chinese society. A review of the literature around the social and cultural history of medicine [5,6] reveals that psychiatric stigma has existed in Europe since the times of Ancient Greece and the Middle Ages. Such stigma continues to be prevalent in Western countries [7]. Psychiatric stigma not only leads to negative stereotyping and to discriminatory behavior towards those affected by mental illness [8,9], but causes feelings of shame in patients, both of which result in decreased life satisfaction and self-esteem [10]. Rehabilitation in schizophrenia patients is often hampered by stigma-related difficulties [11]. Stigma refers to the experience of discrimination by patients and the resulting limited social participation [12]. Selfstigma mainly refers to the internalization of public stigma. Corrigan [13] defines self-stigma as the internalizing of shame, blame, hopelessness, guilt and fear of discrimination associated with
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mental illness. It has also been described as a process, wherein the patient alters both what they expect of themselves and how they expect to be treated by society [14]. It is very common for those with mental illnesses to experience discrimination, as reported in findings in Hong Kong [15,16], Mainland China [17,18], as well as in the Western literature [9,19]. However, the extent and nature of stigma and self-stigma in schizophrenia patients in China are still largely understudied. In particular, previous research has used nonstandardized questionnaires, making between-study comparisons difficult. For these reasons, our study measured stigma in a Chinese setting using two standardized questionnaires and describes the characteristics of stigma, self-stigma and other relevant factors. We discuss recommendations for policy around stigma prevention, especially related to patients' reintegration into society. 2. Methods 2.1. Participants A nonprobabilistic sampling method was used to recruit participants. The participants were inpatients or outpatients with schizophrenia receiving treatment in the Second Xiangya Hospital between January and March 2011. For inclusion, the patients had to be (1) diagnosed with schizophrenia. Patient assessments were done by a psychiatrist using the DSM-IV criteria (American Psychiatric Association, 1994), and diagnoses were independently confirmed by a psychologist in a structured clinical interview (MiniInternational Neuropsychiatric Interview); (2) aged between 17 and 60; (3) not drug or alcohol dependent; (4) able to understand the questionnaires. Patients with organic brain syndrome or mental retardation were excluded. Patients who did not complete the questionnaires or refused participation were excluded. The survey was conducted between January, 2011, and March, 2011. All subjects and their guardians gave written consent to participate in the study. Ethical approval for this study was obtained from the Research Ethics Committee of the Second Xiangya Hospital at the Central South University. 2.2. Methods 2.2.1. Demographic data A questionnaire, designed by the authors, was used to collect basic demographic data as well as information on the patient's symptoms and included age, gender, level of education, age of onset, duration of illness, frequency of hospitalization, family history, employment status and relationship status. 2.2.2. Stigma 2.2.2.1. Self-stigma. Self-stigma was assessed using the Internalized Stigma of Mental Illness Inventory scale (ISMI) [20]. This scale contains 29 items, scored on four-point Likert scales (1 = strongly disagree to 4 = strongly agree) and grouped into five subscales: alienation (patient's experience of limited participation in society), stereotype endorsement (tendency to agree with common stereotypes about people with mental illness), perceived discrimination (experience of unfair treatment by others), social withdrawal (actively avoiding social interaction) and stigma resistance (ability to deflect or resist stigma). Based on previous work in the field [21,22], we combined the first four subscales (i.e., excluding stigma resistance) to calculate an overall stigma score (higher scores suggesting more severe experiences of stigma). Good internal consistency, factorial and convergent validity, and test-retest reliability have
been reported previously [20,23]. In our study, the internal consistency of the 24-item ISMI was α= .826. 2.2.2.2. Experience of stigma. Experience of stigma was measured using the Modified Consumer Experiences of Stigma Questionnaire (MCESQ), which has two sections covering stigma and discrimination experiences. The original version (CESQ) was developed by Wahl [9] in 1999 and modified by Dickerson et al. [7] in 2002 replacing the term “consumers” with “persons with mental illness,” “persons who have a psychiatric disorder” and “persons who use psychiatric services” as appropriate [7]. The instrument consists of 19 items, scored on fivepoint Likert scales and grouped into two subscales: stigma experiences and discrimination experiences. The former represents interpersonal experiences of dealing with others' negative attitudes toward their mental illness. The latter measures patients' experiences of discrimination in various parts of life, including employment, housing and pursuing volunteer activities. This questionnaire has been used in Western countries and has been shown to have good reliability and validity [23]. In our study, the internal consistency of the MCESQ was α= .635. 2.2.3. Social support Social support was measured using the Social Support Rating Scale (SSRS) developed by Xiao [24]. This instrument measures the social support received by participants and consists of 10 items grouped into three subscales: objective support, subjective support and support availability. Items were mostly scored on four-point Likert scales (excluding questions asking for total number of “sources of support”). The internal consistency of the SSRS was α= .614. 2.2.4. Quality of life Quality of life was measured using the World Health Organization Quality Of Life questionnaire (WHOQOL-BREF). The WHOQOL-BREF is a shorter version of the WHOQOL-100 instrument (developed for cross-cultural validity and includes 100 items) and contains a total of 26 items, scored on five-point Likert scales and grouped into four domains: physical health, psychological health, social relationships and environment. Various studies have reported high validity and reliability [25]. In our study, the internal consistency of the WHOQOLBREF was α= .903. 2.2.5. Severity of psychotic symptoms Chinese versions of the Scale for the Assessment of Negative Symptoms (SANS) and the Scale for the Assessment of Positive Symptoms (SAPS) [26,27] were used for the assessment of negative and positive schizophrenia symptoms. The SANS and SAPS consist of 24 and 34 items, respectively, scored on six-point Likert scales (from 0 = not present to 5 = severe). The SANS contains five subscales: affective blunting, alogia (impoverished thinking), avolition/apathy, anhedonia/asociality and attention. The SAPS has four subscales: hallucinations, delusions, bizarre behavior and positive formal thought disorder. Scores measure severity of negative and positive symptoms. The Chinese versions of the two scales have good reliability and validity [28]. 2.3. Analytic strategy All statistical analyses were performed using SPSS version 17.0 for Windows. Statistical analyses included descriptive statistics, correlation analysis and multiple linear regression. The ISMI is scored on a four-point Likert scale with possible scores ranging from 1 to 4, and higher scores indicate higher levels of a particular attribute. Previous research has defined a high level of selfstigma as an average score above the midpoint of 2.5 [20,29]. Other studies have reported ISMI scores as follows: minimal stigma b 2, low
Y. Lv et al. / General Hospital Psychiatry 35 (2013) 83–88 Table 1 Sociodemographic and clinical characteristics of participants n Gender Male Female Age in years, mean±S.D. Employment status Employed Unemployed Relationship status Single Married Divorced Education level Did not complete high school Completed high school Age (years) of first episode, mean±S.D. Duration (years) of mental illness, mean±S.D. Family history of mental disorder Yes No Hospitalizations b3 times ≥3 times
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Table 3 Highly-scored items of MCESQ (%)
58 37 26.27±7.83
61.1% 38.9%
61 33
64.2% 34.7%
65 26 4
68.4% 27.4% 4.2%
30 65 21.76±6.22 4.51±3.87
31.6% 68.4%
19 73
20.0% 76.8%
69 26
72.6% 27.4%
Never Have you avoided telling others outside of your immediate family that you have received psychiatric treatment? Were friends understanding and supportive after learning that you receive psychiatric treatment?
Seldom Sometimes Often
Very often Mean±S.D.
11 18 (11.6) (18.9)
28 (29.5)
21 17 (22.1) (17.9)
3.16±1.26
12 33 (12.6) (34.7)
31 (32.6)
12 7 (12.6) (7.4)
2.67±1.09
Values are shown as n (%).
Not all respondents answered all questions; therefore the number of responses does not total 95 and the percentages do not add to 100.
stigma 2–2.5, moderate stigma 2.5–3 and high stigma N3 points [21]. The MCESQ is scored on a five-point Likert scale with possible scores ranging from 1 to 5. As above, a higher total score indicates a higher level of perceived stigma and discrimination. Descriptive statistics were calculated for all scale and subscale scores. The correlation between self-stigma and discrimination was examined using bivariate analysis. The relationships between selfstigma and sociodemographic and clinical characteristics, psychiatric symptoms, social support and quality of life were further explored using multiple linear regression.
3. Results
tion, 32.6% (n=31) for social withdrawal and 20.0% (n= 19) for the overall score. The overall score was also subdivided into four categories [21], with the following levels of self-stigma: 28.4% (n=27) reported minimal, 48.4% (n=46) reported mild and 20.0% (n= 19) reported moderate levels of self-stigma. 3.2.2. Level of experienced stigma Mean scores for the MCESQ scale were as follows: 2.50 for stigma experiences (S.D.=0.59) (i.e., between “seldom” and “sometimes”), 1.71 for discrimination experiences (S.D.=0.39) (between “never” and “seldom”) and 2.08 for the overall score (S.D.=0.39) (between “seldom” and “sometimes”). The percentage of participants who rated themselves above the mid-point of 3.0 on subscales and overall score was 24.2% (n=23) for stigma, 1.1% (n= 1) for discrimination and 1.1% (n= 1) for the overall score.
3.2. Stigma
3.2.3. Highly scored items of Internalized Stigma of Mental Illness Inventory Over 50% “agreed” or “strongly agreed” to the following: “Living with a mental illness has made me a tough survivor” (68.4%, n= 65); “Having a mental illness has spoiled my life” (63.2%, n= 60); “I don't talk about myself much because I don't want to burden others with my mental illness” (54.7 %, n= 52); and “I feel out of place in the world because I have a mental illness” (52.7%, n= 50) (Table 2).
3.2.1. Level of self-stigma Mean scores on the ISMI were as follows: 2.29 for alienation (S.D.=0.49), 2.07 for stereotype endorsement (S.D.=0.44), 2.15 for discrimination experience (S.D.=0.45) and 2.19 for social withdrawal (S.D.=0.46) The mean overall score was 2.17 (S.D.=0.38). The percentage of participants who rated themselves above the mid-point of 2.5 on the subscales and total scores of the ISMI (i.e., high level of self-stigma) was 44.2% (n=42) for alienation, 14.7% (n=14) for stereotype endorsement, 25.3% (n= 24) for perceived discrimina-
3.2.4. Highly Scored Items of Modified Consumer Experiences of Stigma Questionnaire A total of 69.5% (n= 66) of participants answered “sometimes”, “often” or “very often” when asked “Have you avoided telling others outside of your immediate family that you have received psychiatric treatment?”; 52.6% (n= 50) of participants answered “never”, “seldom” or “sometimes” when asked “Were friends understanding and supportive after learning that you receive psychiatric treatment?” (Table 3).
3.1. Participants' characteristics An overview of the participants' sociodemographic and clinical characteristics is shown in Table 1.
Table 2 Highly scored items of the ISMI
I feel out of place in the world because I have a mental illness. I don't talk about myself much because I don't want to burden others with my mental illness. Having a mental illness has spoiled my life. Living with a mental illness has made me a tough survivor. Values are shown as n (%).
Strongly disagree
Disagree
13 (13.7) 5 (5.3) 10 (10.5) 6 (6.3)
32 38 25 24
(33.7) (40.0) (26.3) (25.3)
Agree 41 48 51 43
(43.2) (50.5) (53.7) (45.3)
Strongly agree
Mean±S.D.
9 (9.5) 4 (4.2) 9 (9.5) 22 (23.2)
2.48±.85 2.54±.67 2.62±.81 2.85±.85
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Table 4 Correlation between experience of stigma and self-stigma n
Alienation Stereotype endorsement Perceived discrimination Social withdraw Total score of self-stigma
Stigma experiences
93 93 93 93 92
r
P
0.44** 0.26** 0.38** 0.33** 0.43**
.000 .001 .000 .001 .000
n
94 93 93 92 91
Discrimination experiences
n
r
P
0.11 0.24** 0.15 0.13 0.16
.295 .002 .160 .206 .131
Total score of experience of stigma
93 92 92 92 91
R
P
0.36** 0.29** 0.35** 0.31** 0.40**
.000 .004 .001 .003 .000
Asterisks indicate significance of correlation.
3.2.5. Associations between experience of stigma and self-stigma Results of the bivariate analyses between experience of stigma and self-stigma are shown in Table 4. The discrimination experience subscale of the MCESQ was not significantly related to ISMI overall or subscale scores except for stereotype endorsement (P= .002).
logical well-being (in WHOQOL-BREF). This model explains 39% of the variance in self-stigma. As previous studies reported significant relationships between self-stigma and severity of psychiatric symptoms, we adjusted for both positive and negative symptoms in our model (Table 6).
3.3. Severity of psychiatric symptoms
4. Discussion
Scores of positive symptoms and negative symptoms of participants are shown in Table 5.
Our study aimed to explore psychiatric stigma among Chinese patients with schizophrenia and factors influencing such stigma. In this study, nearly 70% of respondents reported mild or moderate selfstigma. Although this is comparable to findings in Spain [32] , a study including 14 European countries found higher levels of self-stigma, with 41.7% reporting moderate or high levels of self-stigma [33]. On the ISMI, over 60% of patients “agreed” or “strongly agreed” with “Living with a mental illness has made me a tough survivor” and “Having a mental illness has spoiled my life”. Respondents also reported considerable social withdrawal. Over 50% “strongly agreed” or “agreed” with the statement: “I don't talk about myself much because I don't want to burden others with my mental illness”, similar to findings in Iran [34]. Almost 50% “strongly agreed” or “agreed” with “I feel out of place in the world because I have a mental illness”, higher than that in Iran [34]. Both in our study and in the Iranian study, over 50% of patients “strongly disagreed” or “disagreed” with “People with mental illness make important contributions to society”. Our findings show that psychiatric stigma is widespread among Chinese patients with schizophrenia and has important adverse effects on their lives. On the MCESQ, average scores for “Were friends understanding and supportive after learning that you receive psychiatric treatment?” were between “sometimes” and “often”, highlighting the importance of a social support network, a finding similar to comparable research done abroad [7] [35]. Despite cultural differences between Eastern and Western countries, patients reported similar levels of support from friends, suggesting some cross-cultural consistency.
3.4. Social support and quality of life Mean scores for the Social Support and Quality of Life questionnaire were 33.82 for the overall score (S.D.=8.30), 8.01 for objective support (S.D.=2.66), 18.06 for subjective support (S.D.=5.59) and 7.71 for availability of support (S.D.=2.12). Mean quality of life scores were 58.09 for physical health (S.D.= 16.31), 56.05 for psychological health (S.D.=16.96), 55.29 for social relationships (S.D.=18.99) and 55.21 for the environment subscale (S.D.=16.45). 3.5. Relative factors of self-stigma Because of substantial similarities between the MCESQ and ISMI questionnaires [23], only overall ISMI scores were used as a dependent variable in multivariate linear regression analysis. In contrast to previous studies [30,31], linear regression reported that the severity of psychiatric symptoms was nonsignificantly related to self-stigma (r=0.165, P= .117 for positive symptoms; r= 0.056, P=.597 for negative symptoms). In a multivariate model, self-stigma was significantly associated with level of education, duration of illness, employment status, total number of hospitalizations, availability of social support and psychoTable 5 Severity of positive symptoms and negative symptoms n
Total scores of positive symptoms Hallucinations Delusions Bizarre behavior Positive formal thought disorder Total scores of negative symptoms Affective flattening or blunting Alogia Avolition and apathy Anhedonia–asociality Attention
95 95 95 95 95 94 95 95 95 95 95
Mean±S.D.
23.18±15.92 1.21±1.52 2.34±1.33 .97±1.11 1.15±1.23 38.51±21.28 2.02±1.04 1.38±1.03 1.92±1.10 2.06±1.16 1.88±1.04
Scores of global rating item of subscale: above 3 n
%
– 24 46 9 17 – 30 11 28 40 26
– 25.3 48.4 9.5 17.9 – 31.6 11.6 29.5 42.1% 27.4%
Table 6 Relevant factors of self-stigma
Education level Duration of mental illness Employment status Times of psychiatric hospitalization Positive symptoms Negative symptoms Utility of support Psychological R R2 P
Nonstandard coefficient
Standard coefficient
β
S.E.
β′
T
−0.20 0.02 −0.16 0.15 0.00 0.00 −0.05 −0.04 0.62 0.39 .000
0.07 0.01 0.07 0.08 0.00 0.00 0.02 0.01
−0.25 0.23 −0.20 0.18 −0.04 −0.01 −0.26 −0.27
−2.79 2.49 −2.18 1.89 −0.38 −0.07 −2.93 −2.98
P
.007 .015 .032 .062 .709 .945 .004 .004
Y. Lv et al. / General Hospital Psychiatry 35 (2013) 83–88
In contrast to findings in Western countries [7], or even in Hong Kong [4], participants with schizophrenia in our Chinese study had lower average scores on the discrimination experience subscale of the MCESQ. This could be caused by cultural differences between China and Western countries. In a Chinese sociocultural context, experiences of discrimination may have little influence on levels of selfstigma. Instead, self-stigma could be the result of internalized negative stereotypes. Subjective experiences of stigma are shaped by a country's social and cultural environment, and, in recent years, the “Modified Labeling Theory” [36] has gained in popularity. According to this theory, negative stereotypes of mental illness in society take on new meaning for patients as treatment is sought and labeling begins to take place. Patients adopt strategies of secrecy and withdrawal to anticipate, and cope with, social rejection. Negative labeling may result in limited employment and career prospects [37,38]. High ISMI stereotype endorsement scores reflect the extent of negative stereotyping in the community. As discussed in the Introduction, Confucianism has influenced Chinese culture for over 2000 years, and the preservation of “face” is an important part of people's daily lives. Personal relationships highlight the importance of filial piety and fraternity, as each member of the society follows Confucian principles to maintain social order and harmony. In Confucian culture, a diagnosis of schizophrenia results in a “loss of face” for the individual [4] and is associated with extreme feelings of shame. As a result, relatives of psychiatric patients will often try to keep the diagnosis secret. As previous research indicated, many people are prejudiced against those with mental illness, and society often perceives them as dangerous and disruptive [15,39,40]. When a patient comes to accept their diagnosis, they begin to internalize stereotyping and discrimination. Patients suffering from stigma lose their mianzi (or “face”), which leads to lower self-esteem and damages their social identity. Our study suggests that, even without actual discrimination, patients living with schizophrenia can still internalize society's prejudices against psychiatric patients and develop high levels of self-stigma. As a coping strategy, and in an attempt to preserve mianzi, a significant proportion of patients and their relatives choose to keep their psychiatric problems private. This idea is supported by our findings, as nearly 70% of participants “sometimes”, “often” or “very often” avoided telling others outside of their immediate family that they had received psychiatric treatment. This is in contrast to previous studies in Hong Kong and Beijing [16,39]. Similar rates have been reported in Poland [35] and lower rates in other Western studies [7]. In our study, psychiatric symptoms were not significantly related to the severity of self-stigma, an area where previous research had shown mixed results [37,41,42]. Despite their mental illness, patients usually have good social cognition and can therefore be sensitive to discriminatory stereotypes in the community and often gradually internalize such views. Relatives of psychiatric patients also suffer from high levels of stigma, as reported by previous studies [17–19,43]. Research on other conditions has found that stigma is widespread among AIDS and hepatitis B patients [44] and psoriasis patients [45], suggesting that medical stigma is not limited to psychiatric diagnoses. In this article, self-stigma was found to be significantly negatively correlated with availability of social support and psychological wellbeing, supporting previous research in Western countries [41]. Even in Western countries, where more emphasis is put on the value of individuals, social support networks still have an important role to play in decreasing stigma in patients with mental illnesses. Thus, in recent decades, public education campaigns have focused on stigma associated with mental illness and, to some extent, negative stereotyping of mental health patients has decreased [46]. Our findings on social support and quality of life as protective factors against self-stigma could help shape public policy aiming to decrease stigma among patients with mental illness. In Western countries, groups such as StigmaBusters (National Alliance of Mental Illness,
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USA), BASTA (Alliance for Mentally Ill People, Germany) and the World Psychiatric Association [47] started campaigns to fight stigma and discrimination related to schizophrenia and other psychiatric conditions. Our findings suggest several policy implications for Chinese settings: improve awareness and education of the general public on the nature of schizophrenia, to increase social acceptance of patients and their families; improve employment opportunities for schizophrenia patients; and improve care and reintegration into society. Further prospective case-control studies are needed to confirm our findings. Unlike previous empirical research [17,31], we found self-stigma to be significantly positively correlated with level of education and employment status, suggesting some degree of cultural difference. Although level of education here refers to formal education, education about symptoms may help combat self-stigma in patients with schizophrenia. Even patients whose condition is well managed suffer from discrimination by potential employers. Nevertheless, as patients reintegrate society, providing employment opportunities is likely to help reduce self-stigma and improve quality of life. In factor analysis, duration of mental illness and total number of hospitalizations were significantly correlated with self-stigma. Although duration of mental illness and number of hospitalizations were also correlated to each other, those two factors do have unique characteristics. Higher numbers of hospitalization mean long stays in closed hospitals. China's laws around mental health mean that Chinese patients are often hospitalized involuntarily. A patient's discharge is dependent on their legal guardian, usually a family member. Psychiatric hospital or psychiatric wards of general hospitals in China are custodial, and patients are isolated from the outside world, take their medication usually under surveillance and cannot refuse prescribed treatment. Such inhumanity would, in itself, make the patients feel shame and stigma would likely increase with each hospitalization. These findings suggest that, in both hospital and community settings, patient empowerment is crucial. This includes the development of life skills necessary to live in society (e.g., decision-making skills) and the ability to discuss their condition with their psychiatrist as well as have influence on their treatment. China's National Mental Health Law is due to be implemented, under which voluntary hospitalization is encouraged. This could help recovery and reintegration of patients with mental disorders. There are some methodological limitations to this study. Participants were not selected randomly but came from a convenience sample of schizophrenia patients receiving treatment in the Second Xiangya Hospital during the study period. Findings from this nonrepresentative sample should therefore be interpreted with caution. Our sample size was small, and findings must be regarded as preliminary. As some of the scales used in this study were only recently translated into Chinese, we discussed only validation studies done on original versions. This should improve as further research is done on the translated versions.
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General Hospital Psychiatry journal homepage: http://www.ghpjournal.com
Experienced stigma and self-stigma in Chinese patients with schizophrenia Ying Lv, Ph.D. a, b, Achim Wolf c, Xiaoping Wang a,⁎ a b c
Mental Health Institute of the Second Xiangya Hospital, Central South University, Changsha Hunan 410011, China Forensic Psychiatry Department of Nanjing Brain Hospital, Nanjing Medical University, Nanjing Jiangsu 210029, China Department of Psychiatry, Warneford Hospital, University of Oxford, Warneford Lane, Headington, Oxford, OX3 7JX, United Kingdom
a r t i c l e
i n f o
Article history: Received 11 May 2012 Accepted 17 July 2012 Keywords: Schizophrenia Psychiatric stigma Self-stigma
a b s t r a c t Objective: To investigate experienced stigma and self-stigma in patients with schizophrenia in mainland China. Methods: Ninety-five patients with schizophrenia, enrolled between January 2011 and March 2011, completed Chinese versions of two self-report questionnaires: the Internalized Stigma of Mental Illness (ISMI) scale and the Modified Consumer Experiences of Stigma Questionnaire (MCESQ). They also completed two other self-report questionnaires: the Social Support Rating Scale (SSRS) and the World Health Organization Quality of Life (WHOQOL-BREF) questionnaire. Patients were also assessed by a senior psychiatrist using the Scale for Assessment of Positive Symptoms (SAPS) and the Scale for Assessment of Negative Symptoms (SANS). All analyses were performed using SPSS 17.0 and included descriptive statistics, correlation analysis and multiple linear regression. Results: On the ISMI, the percentage of participants who rated themselves above the mid-point of 2.5 (meaning high level of self-stigma) on subscales and overall score was 44.2% (n=42) for alienation, 14.7% (n=14) for stereotype endorsement, 25.3% (n=24) for perceived discrimination, 32.6% (n=31) for social withdrawal and 20.0% (n=19) on the overall score. On the MCESQ, the percentage of participants who rated themselves above the mid-point of 3.0 on subscales and overall score was 24.2% (n=23) for stigma, 1.1% (n= 1) for discrimination and 1.1% (n=1) on the overall score. Some socioeconomic variables, but not positive or negative symptoms, were related to the severity of psychiatric stigma. Conclusions: Results document the seriousness of experienced stigma and self-stigma in persons with schizophrenia. Strategies are needed to improve how governments and persons with schizophrenia cope with stigma. © 2013 Elsevier Inc. All rights reserved.
1. Introduction Many factors influence stigma in patients with mental disorders, and cultural context plays an essential role in its formation. Deeply held cultural and philosophical beliefs can promote stigma and act as a barrier to rehabilitation and recovery. In China, traditional cultural values, such as Confucianism, Taoism and Buddhism, strongly influence patients' and society's understanding and interpretation of mental illness and associated stigma. The core virtue in Confucianism, which has shaped Chinese culture for over 2000 years, is filial piety [1]. Filial piety encourages individuals to show respect for their elders and ancestors and to act in an ethical way, in harmony with the self, family, society and the universe. The extreme importance of social harmony and its maintenance take precedence over the expression of one's own opinions and values [2]. People are seen as living first and foremost in a strict network of social interaction (or guanxi). The maintenance of guanxi is dependent on the reciprocal returning of ⁎ Corresponding author. Tel.: +86 0731 85292182; fax: +86 0731 85360162. E-mail address: [email protected] (X. Wang). 0163-8343/$ – see front matter © 2013 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.genhosppsych.2012.07.007
favors [3] which is itself directly related to the concept of “face” (or mianzi). Face is a crucial aspect of social identity and represents power and standing in Chinese social hierarchy. Thus, preserving face or mianzi is a part of daily life. Diagnosis of schizophrenia results in a “loss of face” for the individual [4], and suffering from mental illness is equated with extreme shame in Chinese society. A review of the literature around the social and cultural history of medicine [5,6] reveals that psychiatric stigma has existed in Europe since the times of Ancient Greece and the Middle Ages. Such stigma continues to be prevalent in Western countries [7]. Psychiatric stigma not only leads to negative stereotyping and to discriminatory behavior towards those affected by mental illness [8,9], but causes feelings of shame in patients, both of which result in decreased life satisfaction and self-esteem [10]. Rehabilitation in schizophrenia patients is often hampered by stigma-related difficulties [11]. Stigma refers to the experience of discrimination by patients and the resulting limited social participation [12]. Selfstigma mainly refers to the internalization of public stigma. Corrigan [13] defines self-stigma as the internalizing of shame, blame, hopelessness, guilt and fear of discrimination associated with
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mental illness. It has also been described as a process, wherein the patient alters both what they expect of themselves and how they expect to be treated by society [14]. It is very common for those with mental illnesses to experience discrimination, as reported in findings in Hong Kong [15,16], Mainland China [17,18], as well as in the Western literature [9,19]. However, the extent and nature of stigma and self-stigma in schizophrenia patients in China are still largely understudied. In particular, previous research has used nonstandardized questionnaires, making between-study comparisons difficult. For these reasons, our study measured stigma in a Chinese setting using two standardized questionnaires and describes the characteristics of stigma, self-stigma and other relevant factors. We discuss recommendations for policy around stigma prevention, especially related to patients' reintegration into society. 2. Methods 2.1. Participants A nonprobabilistic sampling method was used to recruit participants. The participants were inpatients or outpatients with schizophrenia receiving treatment in the Second Xiangya Hospital between January and March 2011. For inclusion, the patients had to be (1) diagnosed with schizophrenia. Patient assessments were done by a psychiatrist using the DSM-IV criteria (American Psychiatric Association, 1994), and diagnoses were independently confirmed by a psychologist in a structured clinical interview (MiniInternational Neuropsychiatric Interview); (2) aged between 17 and 60; (3) not drug or alcohol dependent; (4) able to understand the questionnaires. Patients with organic brain syndrome or mental retardation were excluded. Patients who did not complete the questionnaires or refused participation were excluded. The survey was conducted between January, 2011, and March, 2011. All subjects and their guardians gave written consent to participate in the study. Ethical approval for this study was obtained from the Research Ethics Committee of the Second Xiangya Hospital at the Central South University. 2.2. Methods 2.2.1. Demographic data A questionnaire, designed by the authors, was used to collect basic demographic data as well as information on the patient's symptoms and included age, gender, level of education, age of onset, duration of illness, frequency of hospitalization, family history, employment status and relationship status. 2.2.2. Stigma 2.2.2.1. Self-stigma. Self-stigma was assessed using the Internalized Stigma of Mental Illness Inventory scale (ISMI) [20]. This scale contains 29 items, scored on four-point Likert scales (1 = strongly disagree to 4 = strongly agree) and grouped into five subscales: alienation (patient's experience of limited participation in society), stereotype endorsement (tendency to agree with common stereotypes about people with mental illness), perceived discrimination (experience of unfair treatment by others), social withdrawal (actively avoiding social interaction) and stigma resistance (ability to deflect or resist stigma). Based on previous work in the field [21,22], we combined the first four subscales (i.e., excluding stigma resistance) to calculate an overall stigma score (higher scores suggesting more severe experiences of stigma). Good internal consistency, factorial and convergent validity, and test-retest reliability have
been reported previously [20,23]. In our study, the internal consistency of the 24-item ISMI was α= .826. 2.2.2.2. Experience of stigma. Experience of stigma was measured using the Modified Consumer Experiences of Stigma Questionnaire (MCESQ), which has two sections covering stigma and discrimination experiences. The original version (CESQ) was developed by Wahl [9] in 1999 and modified by Dickerson et al. [7] in 2002 replacing the term “consumers” with “persons with mental illness,” “persons who have a psychiatric disorder” and “persons who use psychiatric services” as appropriate [7]. The instrument consists of 19 items, scored on fivepoint Likert scales and grouped into two subscales: stigma experiences and discrimination experiences. The former represents interpersonal experiences of dealing with others' negative attitudes toward their mental illness. The latter measures patients' experiences of discrimination in various parts of life, including employment, housing and pursuing volunteer activities. This questionnaire has been used in Western countries and has been shown to have good reliability and validity [23]. In our study, the internal consistency of the MCESQ was α= .635. 2.2.3. Social support Social support was measured using the Social Support Rating Scale (SSRS) developed by Xiao [24]. This instrument measures the social support received by participants and consists of 10 items grouped into three subscales: objective support, subjective support and support availability. Items were mostly scored on four-point Likert scales (excluding questions asking for total number of “sources of support”). The internal consistency of the SSRS was α= .614. 2.2.4. Quality of life Quality of life was measured using the World Health Organization Quality Of Life questionnaire (WHOQOL-BREF). The WHOQOL-BREF is a shorter version of the WHOQOL-100 instrument (developed for cross-cultural validity and includes 100 items) and contains a total of 26 items, scored on five-point Likert scales and grouped into four domains: physical health, psychological health, social relationships and environment. Various studies have reported high validity and reliability [25]. In our study, the internal consistency of the WHOQOLBREF was α= .903. 2.2.5. Severity of psychotic symptoms Chinese versions of the Scale for the Assessment of Negative Symptoms (SANS) and the Scale for the Assessment of Positive Symptoms (SAPS) [26,27] were used for the assessment of negative and positive schizophrenia symptoms. The SANS and SAPS consist of 24 and 34 items, respectively, scored on six-point Likert scales (from 0 = not present to 5 = severe). The SANS contains five subscales: affective blunting, alogia (impoverished thinking), avolition/apathy, anhedonia/asociality and attention. The SAPS has four subscales: hallucinations, delusions, bizarre behavior and positive formal thought disorder. Scores measure severity of negative and positive symptoms. The Chinese versions of the two scales have good reliability and validity [28]. 2.3. Analytic strategy All statistical analyses were performed using SPSS version 17.0 for Windows. Statistical analyses included descriptive statistics, correlation analysis and multiple linear regression. The ISMI is scored on a four-point Likert scale with possible scores ranging from 1 to 4, and higher scores indicate higher levels of a particular attribute. Previous research has defined a high level of selfstigma as an average score above the midpoint of 2.5 [20,29]. Other studies have reported ISMI scores as follows: minimal stigma b 2, low
Y. Lv et al. / General Hospital Psychiatry 35 (2013) 83–88 Table 1 Sociodemographic and clinical characteristics of participants n Gender Male Female Age in years, mean±S.D. Employment status Employed Unemployed Relationship status Single Married Divorced Education level Did not complete high school Completed high school Age (years) of first episode, mean±S.D. Duration (years) of mental illness, mean±S.D. Family history of mental disorder Yes No Hospitalizations b3 times ≥3 times
85
Table 3 Highly-scored items of MCESQ (%)
58 37 26.27±7.83
61.1% 38.9%
61 33
64.2% 34.7%
65 26 4
68.4% 27.4% 4.2%
30 65 21.76±6.22 4.51±3.87
31.6% 68.4%
19 73
20.0% 76.8%
69 26
72.6% 27.4%
Never Have you avoided telling others outside of your immediate family that you have received psychiatric treatment? Were friends understanding and supportive after learning that you receive psychiatric treatment?
Seldom Sometimes Often
Very often Mean±S.D.
11 18 (11.6) (18.9)
28 (29.5)
21 17 (22.1) (17.9)
3.16±1.26
12 33 (12.6) (34.7)
31 (32.6)
12 7 (12.6) (7.4)
2.67±1.09
Values are shown as n (%).
Not all respondents answered all questions; therefore the number of responses does not total 95 and the percentages do not add to 100.
stigma 2–2.5, moderate stigma 2.5–3 and high stigma N3 points [21]. The MCESQ is scored on a five-point Likert scale with possible scores ranging from 1 to 5. As above, a higher total score indicates a higher level of perceived stigma and discrimination. Descriptive statistics were calculated for all scale and subscale scores. The correlation between self-stigma and discrimination was examined using bivariate analysis. The relationships between selfstigma and sociodemographic and clinical characteristics, psychiatric symptoms, social support and quality of life were further explored using multiple linear regression.
3. Results
tion, 32.6% (n=31) for social withdrawal and 20.0% (n= 19) for the overall score. The overall score was also subdivided into four categories [21], with the following levels of self-stigma: 28.4% (n=27) reported minimal, 48.4% (n=46) reported mild and 20.0% (n= 19) reported moderate levels of self-stigma. 3.2.2. Level of experienced stigma Mean scores for the MCESQ scale were as follows: 2.50 for stigma experiences (S.D.=0.59) (i.e., between “seldom” and “sometimes”), 1.71 for discrimination experiences (S.D.=0.39) (between “never” and “seldom”) and 2.08 for the overall score (S.D.=0.39) (between “seldom” and “sometimes”). The percentage of participants who rated themselves above the mid-point of 3.0 on subscales and overall score was 24.2% (n=23) for stigma, 1.1% (n= 1) for discrimination and 1.1% (n= 1) for the overall score.
3.2. Stigma
3.2.3. Highly scored items of Internalized Stigma of Mental Illness Inventory Over 50% “agreed” or “strongly agreed” to the following: “Living with a mental illness has made me a tough survivor” (68.4%, n= 65); “Having a mental illness has spoiled my life” (63.2%, n= 60); “I don't talk about myself much because I don't want to burden others with my mental illness” (54.7 %, n= 52); and “I feel out of place in the world because I have a mental illness” (52.7%, n= 50) (Table 2).
3.2.1. Level of self-stigma Mean scores on the ISMI were as follows: 2.29 for alienation (S.D.=0.49), 2.07 for stereotype endorsement (S.D.=0.44), 2.15 for discrimination experience (S.D.=0.45) and 2.19 for social withdrawal (S.D.=0.46) The mean overall score was 2.17 (S.D.=0.38). The percentage of participants who rated themselves above the mid-point of 2.5 on the subscales and total scores of the ISMI (i.e., high level of self-stigma) was 44.2% (n=42) for alienation, 14.7% (n=14) for stereotype endorsement, 25.3% (n= 24) for perceived discrimina-
3.2.4. Highly Scored Items of Modified Consumer Experiences of Stigma Questionnaire A total of 69.5% (n= 66) of participants answered “sometimes”, “often” or “very often” when asked “Have you avoided telling others outside of your immediate family that you have received psychiatric treatment?”; 52.6% (n= 50) of participants answered “never”, “seldom” or “sometimes” when asked “Were friends understanding and supportive after learning that you receive psychiatric treatment?” (Table 3).
3.1. Participants' characteristics An overview of the participants' sociodemographic and clinical characteristics is shown in Table 1.
Table 2 Highly scored items of the ISMI
I feel out of place in the world because I have a mental illness. I don't talk about myself much because I don't want to burden others with my mental illness. Having a mental illness has spoiled my life. Living with a mental illness has made me a tough survivor. Values are shown as n (%).
Strongly disagree
Disagree
13 (13.7) 5 (5.3) 10 (10.5) 6 (6.3)
32 38 25 24
(33.7) (40.0) (26.3) (25.3)
Agree 41 48 51 43
(43.2) (50.5) (53.7) (45.3)
Strongly agree
Mean±S.D.
9 (9.5) 4 (4.2) 9 (9.5) 22 (23.2)
2.48±.85 2.54±.67 2.62±.81 2.85±.85
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Table 4 Correlation between experience of stigma and self-stigma n
Alienation Stereotype endorsement Perceived discrimination Social withdraw Total score of self-stigma
Stigma experiences
93 93 93 93 92
r
P
0.44** 0.26** 0.38** 0.33** 0.43**
.000 .001 .000 .001 .000
n
94 93 93 92 91
Discrimination experiences
n
r
P
0.11 0.24** 0.15 0.13 0.16
.295 .002 .160 .206 .131
Total score of experience of stigma
93 92 92 92 91
R
P
0.36** 0.29** 0.35** 0.31** 0.40**
.000 .004 .001 .003 .000
Asterisks indicate significance of correlation.
3.2.5. Associations between experience of stigma and self-stigma Results of the bivariate analyses between experience of stigma and self-stigma are shown in Table 4. The discrimination experience subscale of the MCESQ was not significantly related to ISMI overall or subscale scores except for stereotype endorsement (P= .002).
logical well-being (in WHOQOL-BREF). This model explains 39% of the variance in self-stigma. As previous studies reported significant relationships between self-stigma and severity of psychiatric symptoms, we adjusted for both positive and negative symptoms in our model (Table 6).
3.3. Severity of psychiatric symptoms
4. Discussion
Scores of positive symptoms and negative symptoms of participants are shown in Table 5.
Our study aimed to explore psychiatric stigma among Chinese patients with schizophrenia and factors influencing such stigma. In this study, nearly 70% of respondents reported mild or moderate selfstigma. Although this is comparable to findings in Spain [32] , a study including 14 European countries found higher levels of self-stigma, with 41.7% reporting moderate or high levels of self-stigma [33]. On the ISMI, over 60% of patients “agreed” or “strongly agreed” with “Living with a mental illness has made me a tough survivor” and “Having a mental illness has spoiled my life”. Respondents also reported considerable social withdrawal. Over 50% “strongly agreed” or “agreed” with the statement: “I don't talk about myself much because I don't want to burden others with my mental illness”, similar to findings in Iran [34]. Almost 50% “strongly agreed” or “agreed” with “I feel out of place in the world because I have a mental illness”, higher than that in Iran [34]. Both in our study and in the Iranian study, over 50% of patients “strongly disagreed” or “disagreed” with “People with mental illness make important contributions to society”. Our findings show that psychiatric stigma is widespread among Chinese patients with schizophrenia and has important adverse effects on their lives. On the MCESQ, average scores for “Were friends understanding and supportive after learning that you receive psychiatric treatment?” were between “sometimes” and “often”, highlighting the importance of a social support network, a finding similar to comparable research done abroad [7] [35]. Despite cultural differences between Eastern and Western countries, patients reported similar levels of support from friends, suggesting some cross-cultural consistency.
3.4. Social support and quality of life Mean scores for the Social Support and Quality of Life questionnaire were 33.82 for the overall score (S.D.=8.30), 8.01 for objective support (S.D.=2.66), 18.06 for subjective support (S.D.=5.59) and 7.71 for availability of support (S.D.=2.12). Mean quality of life scores were 58.09 for physical health (S.D.= 16.31), 56.05 for psychological health (S.D.=16.96), 55.29 for social relationships (S.D.=18.99) and 55.21 for the environment subscale (S.D.=16.45). 3.5. Relative factors of self-stigma Because of substantial similarities between the MCESQ and ISMI questionnaires [23], only overall ISMI scores were used as a dependent variable in multivariate linear regression analysis. In contrast to previous studies [30,31], linear regression reported that the severity of psychiatric symptoms was nonsignificantly related to self-stigma (r=0.165, P= .117 for positive symptoms; r= 0.056, P=.597 for negative symptoms). In a multivariate model, self-stigma was significantly associated with level of education, duration of illness, employment status, total number of hospitalizations, availability of social support and psychoTable 5 Severity of positive symptoms and negative symptoms n
Total scores of positive symptoms Hallucinations Delusions Bizarre behavior Positive formal thought disorder Total scores of negative symptoms Affective flattening or blunting Alogia Avolition and apathy Anhedonia–asociality Attention
95 95 95 95 95 94 95 95 95 95 95
Mean±S.D.
23.18±15.92 1.21±1.52 2.34±1.33 .97±1.11 1.15±1.23 38.51±21.28 2.02±1.04 1.38±1.03 1.92±1.10 2.06±1.16 1.88±1.04
Scores of global rating item of subscale: above 3 n
%
– 24 46 9 17 – 30 11 28 40 26
– 25.3 48.4 9.5 17.9 – 31.6 11.6 29.5 42.1% 27.4%
Table 6 Relevant factors of self-stigma
Education level Duration of mental illness Employment status Times of psychiatric hospitalization Positive symptoms Negative symptoms Utility of support Psychological R R2 P
Nonstandard coefficient
Standard coefficient
β
S.E.
β′
T
−0.20 0.02 −0.16 0.15 0.00 0.00 −0.05 −0.04 0.62 0.39 .000
0.07 0.01 0.07 0.08 0.00 0.00 0.02 0.01
−0.25 0.23 −0.20 0.18 −0.04 −0.01 −0.26 −0.27
−2.79 2.49 −2.18 1.89 −0.38 −0.07 −2.93 −2.98
P
.007 .015 .032 .062 .709 .945 .004 .004
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In contrast to findings in Western countries [7], or even in Hong Kong [4], participants with schizophrenia in our Chinese study had lower average scores on the discrimination experience subscale of the MCESQ. This could be caused by cultural differences between China and Western countries. In a Chinese sociocultural context, experiences of discrimination may have little influence on levels of selfstigma. Instead, self-stigma could be the result of internalized negative stereotypes. Subjective experiences of stigma are shaped by a country's social and cultural environment, and, in recent years, the “Modified Labeling Theory” [36] has gained in popularity. According to this theory, negative stereotypes of mental illness in society take on new meaning for patients as treatment is sought and labeling begins to take place. Patients adopt strategies of secrecy and withdrawal to anticipate, and cope with, social rejection. Negative labeling may result in limited employment and career prospects [37,38]. High ISMI stereotype endorsement scores reflect the extent of negative stereotyping in the community. As discussed in the Introduction, Confucianism has influenced Chinese culture for over 2000 years, and the preservation of “face” is an important part of people's daily lives. Personal relationships highlight the importance of filial piety and fraternity, as each member of the society follows Confucian principles to maintain social order and harmony. In Confucian culture, a diagnosis of schizophrenia results in a “loss of face” for the individual [4] and is associated with extreme feelings of shame. As a result, relatives of psychiatric patients will often try to keep the diagnosis secret. As previous research indicated, many people are prejudiced against those with mental illness, and society often perceives them as dangerous and disruptive [15,39,40]. When a patient comes to accept their diagnosis, they begin to internalize stereotyping and discrimination. Patients suffering from stigma lose their mianzi (or “face”), which leads to lower self-esteem and damages their social identity. Our study suggests that, even without actual discrimination, patients living with schizophrenia can still internalize society's prejudices against psychiatric patients and develop high levels of self-stigma. As a coping strategy, and in an attempt to preserve mianzi, a significant proportion of patients and their relatives choose to keep their psychiatric problems private. This idea is supported by our findings, as nearly 70% of participants “sometimes”, “often” or “very often” avoided telling others outside of their immediate family that they had received psychiatric treatment. This is in contrast to previous studies in Hong Kong and Beijing [16,39]. Similar rates have been reported in Poland [35] and lower rates in other Western studies [7]. In our study, psychiatric symptoms were not significantly related to the severity of self-stigma, an area where previous research had shown mixed results [37,41,42]. Despite their mental illness, patients usually have good social cognition and can therefore be sensitive to discriminatory stereotypes in the community and often gradually internalize such views. Relatives of psychiatric patients also suffer from high levels of stigma, as reported by previous studies [17–19,43]. Research on other conditions has found that stigma is widespread among AIDS and hepatitis B patients [44] and psoriasis patients [45], suggesting that medical stigma is not limited to psychiatric diagnoses. In this article, self-stigma was found to be significantly negatively correlated with availability of social support and psychological wellbeing, supporting previous research in Western countries [41]. Even in Western countries, where more emphasis is put on the value of individuals, social support networks still have an important role to play in decreasing stigma in patients with mental illnesses. Thus, in recent decades, public education campaigns have focused on stigma associated with mental illness and, to some extent, negative stereotyping of mental health patients has decreased [46]. Our findings on social support and quality of life as protective factors against self-stigma could help shape public policy aiming to decrease stigma among patients with mental illness. In Western countries, groups such as StigmaBusters (National Alliance of Mental Illness,
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USA), BASTA (Alliance for Mentally Ill People, Germany) and the World Psychiatric Association [47] started campaigns to fight stigma and discrimination related to schizophrenia and other psychiatric conditions. Our findings suggest several policy implications for Chinese settings: improve awareness and education of the general public on the nature of schizophrenia, to increase social acceptance of patients and their families; improve employment opportunities for schizophrenia patients; and improve care and reintegration into society. Further prospective case-control studies are needed to confirm our findings. Unlike previous empirical research [17,31], we found self-stigma to be significantly positively correlated with level of education and employment status, suggesting some degree of cultural difference. Although level of education here refers to formal education, education about symptoms may help combat self-stigma in patients with schizophrenia. Even patients whose condition is well managed suffer from discrimination by potential employers. Nevertheless, as patients reintegrate society, providing employment opportunities is likely to help reduce self-stigma and improve quality of life. In factor analysis, duration of mental illness and total number of hospitalizations were significantly correlated with self-stigma. Although duration of mental illness and number of hospitalizations were also correlated to each other, those two factors do have unique characteristics. Higher numbers of hospitalization mean long stays in closed hospitals. China's laws around mental health mean that Chinese patients are often hospitalized involuntarily. A patient's discharge is dependent on their legal guardian, usually a family member. Psychiatric hospital or psychiatric wards of general hospitals in China are custodial, and patients are isolated from the outside world, take their medication usually under surveillance and cannot refuse prescribed treatment. Such inhumanity would, in itself, make the patients feel shame and stigma would likely increase with each hospitalization. These findings suggest that, in both hospital and community settings, patient empowerment is crucial. This includes the development of life skills necessary to live in society (e.g., decision-making skills) and the ability to discuss their condition with their psychiatrist as well as have influence on their treatment. China's National Mental Health Law is due to be implemented, under which voluntary hospitalization is encouraged. This could help recovery and reintegration of patients with mental disorders. There are some methodological limitations to this study. Participants were not selected randomly but came from a convenience sample of schizophrenia patients receiving treatment in the Second Xiangya Hospital during the study period. Findings from this nonrepresentative sample should therefore be interpreted with caution. Our sample size was small, and findings must be regarded as preliminary. As some of the scales used in this study were only recently translated into Chinese, we discussed only validation studies done on original versions. This should improve as further research is done on the translated versions.
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