Beijing Hui Long Guan Hospital, Beijing, China
Department of Social Work and Social Administration, University of Hong Kong, Hong Kong Special Administrative Region, China
Beijing Hu Long Guan Hospital, Beijing, China
Anding Hospital, Beijing, China
Colombia University, New York, USA
Correspondence: Dr M. R. Phillips, Director, Research Center of Clinical Epidemiology, Beijing Hui Long Guan Hospital, Beijing 100096, People's Republic of China
See editorial, pp.
466467, this issue.
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ABSTRACT |
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Aims To explore the factors that mediate patients' emotional and cognitive responses to stigma.
Method Based on responses to 10 open-ended questions about stigma appended to the Chinese version of the Camberwell Family Interview, trained coders rated the effect of stigma on both patients and family members in 1491 interviews conducted with 952 family members of 608 patients with schizophrenia at 5 sites around China from 1990 to 2000.
Results Family members reported that stigma had had a moderate to severe effect on the lives of patients over the previous 3 months in 60% of the interviews, and on the lives of other family members in 26% of the interviews. The effect of stigma on patients and family members was significantly greater if the respondent had a high level of expressed emotion, if the patient had more severe positive symptoms, if the respondent was highly educated and if the family lived in a highly urbanised area.
Conclusions Clinicians should assess the effect of stigma as part of the standard work-up for patients with mental illness, and help patients and family members reduce the effect of stigma on their lives.
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INTRODUCTION |
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METHOD |
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Definition
The overall effect of stigma and discrimination on the lives of patients
and their family members was operationally defined as the combined effects of
four stigma-related experiences:
Including self-restriction of activities and fear of stigma makes it possible to assess the effect of stigma even when the illness has been kept a secret (a common situation in China).
Questions
Based on this definition, 10 open-ended questions (see Appendix) were added
to the Chinese version of the Camberwell Family Interview (CFICV)
(Phillips & Xiong, 1995).
The CFICV is a 90-minute interview administered to family members of
patients with schizophrenia, that obtains detailed information about their
responses to the patient's illness over the previous 3 months. The questions
on stigma and discrimination typically took 5-8 minutes, near the end of the
interview; interviewers probed for further detail if they felt this necessary.
The audiotaped interviews were transcribed and then coded by trained coders
according to the instructions in a detailed coding manual.
Answers
Based on respondents' answers to the 10 questions (and other information
spontaneously provided about stigma in the earlier parts of the interview),
coders rated the overall magnitude of the effect of stigma and discrimination
in the previous 3 months on the life of the patient and, separately, on the
lives of the patient's family members. This rating was made on a 4-point scale
(0=no effect, 1=mild effect, 2=moderate effect, 3=severe effect). If the
respondent stated that the effects of stigma on different family members
differed, the effect on the most severely affected family member was
coded.
Interviews
A total of 1491 interviews conducted with 952 family members of 605
patients with schizophrenia were included in this study. Respondents'
perceptions of patient and family discrimination often change with the
severity and duration of the patient's illness, so it was important to include
assessments taken at different points in the course of the illness. Of the
interviews, 61% (n=903) were conducted at the time of the patient's
admission to hospital (641 of these were at the first admission); the
remainder were follow-up interviews conducted while the patient was in
remission, 12 to 60 months after the index admission. These interviews come
from a number of completed and ongoing projects:
Among the 1240 CFICV interviews that were independently rated by two coders, the intraclass correlation coefficients (ICCs) for the magnitude of the effect of stigma and discrimination on patients and on family members were 0.68 and 0.67, respectively. In cases where two coders independently rated the effect of stigma and discrimination, the mean of the two scores was employed in subsequent analyses.
Rating scales
These five studies also obtained detailed demographic information on the
patients, their family members and the respondents to the CFICV
interview. Chinese versions of the 18-item Brief Psychiatric Rating Scale
(BPRS) (Phillips et al,
1990), the Scale for the Assessment of Negative Symptoms
(SANSCV) (Phillips et al,
1991) and the Global Assessment of Functioning (GAF)
(Wu & Wang, 1990) were
administered at the same time as the CFICV interviews. At all sites,
the interviews and coding were conducted by attending-level psychiatrists or
senior psychiatric nurses who were extensively trained by the first author in
the use of the scales. All of the studies obtained written informed consent
from both patients and family members.
Characteristics of the family member respondents
Of the 952 family member respondents, 50% (478) were male; 635 (66.7%) were
parents, 222 (23.3%) were spouses and 95 (10.0%) were other relatives. At the
time of the examination, respondents' mean (s.d.) age was 49.5 (12.1) years,
mean duration of formal schooling was 8.8 (4.4) years, and mean face-to-face
contact time with the patient was 40.9 (29.8) hours per week; 93% of
respondents lived with the patient.
Characteristics of patients
Of the 608 patients, 52% (317) were male. Their mean (s.d.) age of onset
was 26.4 (7.6) years. At the time of the CFICV interview, patients'
mean (s.d.) age was 28.8 (7.5) years; mean duration of schooling 11.0 (2.9)
years; median (interquartile range) duration of illness 2.9 (1.5-4.3) years;
mean (s.d.) BPRS total score 34.4 (12.4); mean SANSCV total score 18.3
(15.1); mean GAF score 48.0 (22.3); 72.6% had had only one hospital admission;
60.1% had never married; 60.8% lived in urban centres, 19.2% in suburban
areas, 4.6% in county towns and 16.4% in rural villages; the mean (s.d.) per
capita family income as a proportion of the national urban per capita income
(adjusted for changing income levels in different years) was 83% (68%).
Statistical methods
There were substantial differences in the characteristics of subjects and
some differences in coding practices across sites (the assessed effect of
stigma on patients and family members at Anding Hospital was significantly
higher than that reported at the other four sites), so all results were
adjusted for differences between the sites. The relationship of patient and
respondent characteristics to the reported magnitude of the effect of stigma
on patients and family members was assessed using F-tests for
categorical characteristics and partial ranked correlation coefficients for
continuous characteristics. High expressed emotion was considered present in
CFICV interviews in which six or more critical comments, hostility, or
at least a moderate level of emotional overinvolvement were coded; the ICC for
the determination of high v. low expressed emotion was 0.82.
To identify factors independently related to the effect of stigma on patients and family members, two multiple regression equations were constructed that adjusted for the effect of the five study locations (by entering four dummy variables) and simultaneously considered 13 potential predictors: respondents' age, gender, duration of schooling and level of expressed emotion (low v. high); patients' gender, duration of schooling and marital status (never married v. ever married); age at onset of the illness, duration of the illness (using a log transformation) and severity of positive and negative symptoms at the time of the CFICV interview; the mean per capita income of family members (adjusted for year, log transformation); and the level of urbanisation of the location of residence (inner city, suburbs, town or village). Patient age was not included in the regression models because it overlapped with age at onset and duration of illness; GAF score, time of the examination (at admission or after discharge) and type of respondent (parent, spouse or other) were excluded because they were highly correlated with other variables (i.e. multicolinearity). The final models included data from all 1491 examinations.
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RESULTS |
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Univariate results
A wide variety of patient and respondent characteristics was significantly
related to the reported effect of stigma on both patients and family members
(Tables 2 and
3). Female respondents,
respondents with a higher social status (i.e. high mean family income and
higher educational level), respondents from more densely populated city
districts, respondents interviewed at the time of the patient's hospital
admission and respondents with high expressed emotion (particularly high
emotional overinvolvement with the patient) reported greater effects of stigma
and discrimination on the lives of both patients and their family members. As
expected, the severity of patients' positive and negative symptoms and the
patients' overall level of functioning at the time of the CFICV
interview were positively correlated with the effect of stigma on patients and
on family members. Stigma and discrimination have a greater effect on younger
patients who have an earlier age at onset, on unmarried patients, on
well-educated patients and on male patients.
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Multivariate results
After adjusting for location and the 13 potential predictive factors
(Table 4), 7 factors remained
significantly related to the reported effect of stigma on the lives of
patients in the 3 months before the interview. The reported effect was higher
if: the respondent had high expressed emotion, was more educated or was
female; and if the patient had an early age of onset, severe positive
symptoms, lived in a more urbanised location or was male. Five factors were
independently related to the reported effect of stigma on family members: high
expressed emotion and higher education in the respondent; and more severe
positive symptoms, living in a more urbanised location, and a longer duration
of illness in the patient.
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DISCUSSION |
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The current study found that in China several factors were independently related to the perceived magnitude of the effect of stigma on both the patient and the family. The perceived effect of stigma was greater if the patient had more prominent positive symptoms, if the respondent had a relatively high educational level and if the family lived in a highly urbanised location. Patients who were more acutely ill probably generated more negative responses from their associates and the community at large; in China such negative responses are often directed at the family because the family is morally and legally responsible for controlling the behaviour of its members. The finding that better-educated family members had an increased sensitivity to stigma is consistent with previous findings (Angermeyer et al, 1987; Phelan et al, 1998); such family members may feel that they have more to lose. The relationship of perceived stigma with level of urbanisation may be due to a higher level of external supervision of patients' behaviour in the more densely populated urban districts, or a lack of close (supportive) ties in high-rise urban environments where neighbours are frequently strangers.
The effect of stigma on the lives of patients was greater for male patients and for patients with a younger age at onset of the illness. In China, urban patients with schizophrenia who fall ill earlier are less likely to obtain satisfactory (government-sponsored) employment and have much greater difficulty finding a spouse, so they are considered socially inferior because they often never achieve these minimal requirements of adult status. Moreover, the social expectations for men are greater than for women, so the effect of stigma is greater on men: women who marry but do not work are in the acceptable role of house-wife, but men must be both married and family breadwinner to attain social status. Female respondents reported greater effects of stigma on patients than male respondents; mothers and wives are more attuned to the negative consequences of stigma on the emotional and social lives of their family members with mental illness than are fathers and husbands.
The effect of stigma on healthy family members was also greater in families in which the patient had a longer duration of illness. The longer the illness persisted, the more difficult it was for families to keep the family secret; as more community members became aware of the illness, the negative social consequences for the family (both feared and actual) increased.
Links between expressed emotion and stigma
The work on expressed emotion assumes that high expressed emotion about the
patient among family members reflects a pattern of interaction within the
family that is stressful for the patient
(Leff et al, 1983;
Koenigsberg & Handley,
1986; Kavanagh,
1992). Expressed emotion has been investigated primarily as a
construct predicting patient relapse; its links to other constructs, such as
stigma, have not yet been explored. Stigma, as a negative societal attitude
directed towards the individual and family, may further stress relationships
in the family system and thus magnify high levels of expressed emotion in the
family (Greenley, 1986).
Conversely, family members' levels of expressed emotion could influence their
perception and response to stigma and discrimination. For example, relatives
with low expressed emotion, who are not over-anxious in their response to the
patient's illness (Vaughn & Leff,
1981), may tend to perceive stigma in ways that are less
threatening and harmful to the patient or the family; relatives with high
expressed emotion, who respond to the patient's illness in a highly anxious
and fearful manner, may experience stigma more acutely.
The most remarkable finding of this study was the extremely strong relationship between high expressed emotion and the reported effect of stigma on both the patient and the family. After controlling for a wide range of predictive variables, the level of expressed emotion of the respondent remained the most important predictor of the perceived magnitude of the effect of stigma on the lives of patients and other family members. Given the correlational nature of the study, it is impossible to ascertain the causal link between these two variables or to identify a common precursor condition for both factors, but we hypothesise that high expressed emotion and enhanced sensitivity to the effects of stigma are mutually reinforcing. Interventions that aim to reduce family members' levels of expressed emotion may also reduce perceived stigma, and thus the destructive internalisation of negative self-images. Conversely, directly addressing the cognitive processes that facilitate the internalisation of stigmatised valuations could decrease family members' high expressed emotion and, potentially, patients' relapse rates. One report on patients with depression (Sirey et al, 2001) suggests that clinical interventions aimed at addressing patients' perceived stigma could improve treatment adherence and outcomes.
Combating stigma
These results highlight an important point that has not been emphasised in
traditional anti-stigma campaigns: namely, that stigma and discrimination are
usually experienced and interpreted at the level of the individual patient and
at the level of the family unit, not at the level of the community.
Individuals and family units respond differently to actual or feared stigma
and discrimination, depending on their internal characteristics and personal
history. Interventions aimed at reducing the negative effects of stigma must,
therefore, include components that are specifically focused on patients and
patients' family members. Health professionals have the most direct contact
with patients and their families, so they are the appropriate group to provide
these interventions. Health professionals should openly discuss the problem of
stigma with patients and families, assess the ways in which it is affecting
their self-esteem and quality of life and encourage them to externalise stigma
as society's ignorance rather than internalising it. They may also encourage
patients and families to join with others in a similar situation to find
mutual support, affirmation and, possibly, to become active in the consumer
movement. Any and all of these measures would help patients and families find
alternative identities to overcome society's negative labelling.
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Clinical Implications and Limitations |
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LIMITATIONS
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APPENDIX |
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ACKNOWLEDGMENTS |
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These studies were supported by Novartis Pharmaceutical Company (the Beijing Hui Long Guan Hospital study), the Keswick Foundation and Kadoorie Charitable Foundations (the Anding Hospital study), the National Alliance for Research on Schizophrenia and Depression (the Guangji Hospital and Jilin Provincial Hospital studies) and the Rockefeller Foundation (the Jingzhou City Psychiatric Hospital study).
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Received for publication June 5, 2001. Revision received January 23, 2002. Accepted for publication January 25, 2002.
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