Experience of stigma among Chinese mental
health patients in Hong Kong
*K. F.
Chung
http://pb.rcpsych.org/cgi/content/full/28/12/451
Assistant Professor,
Department of Psychiatry, University of Hong Kong, Pokfulam
Road, Hong Kong, China
M. C. Wong
Senior Medical Officer,
Department of Psychiatry, Queen Mary Hospital, Hong Kong, China
(tel: 852 2855 4487; fax: 852 2855 1345; e-mail:
kfchung@hkucc.khu.hk
)
Abstract
AIMS AND METHOD
The study was intended to rectify the lack of data on how
Chinese people experience the stigma of mental
illness. A questionnaire on perceived stigmatisation,
experiences of rejection and ways of coping with
stigma was completed by 193 persons attending a
psychiatric out-patient clinic in Hong Kong.
RESULTS
Most of the participants were aware of the stigma associated
with mental illness, but experiences of rejection were
relatively less frequent. Eleven per cent of the
respondents indicated that they were neglected by
health care professionals and 8% had been avoided by
family members. The most frequently reported coping
method was maintaining secrecy about the illness.
CLINICAL IMPLICATIONS
In China, people with mental health problems experience
stigma in various degrees. However, some of the
people surveyed expressed feelings of relief that
others were supportive and sympathetic towards their
illness. Mental health professionals should maintain
optimism in helping their patients to cope with the stigma.
Introduction
The stigma attached to a label of ‘mental illness’
can have a lasting impact on the person so labelled. The
expectation and actual experience of stigmatisation
can result in lowering of self-esteem (Link et al,
2001) and quality of life (Rosenfield, 1997),
persistent depression (Link et al, 1997), impairment
in social relationships (Perlick et al, 2001) and
early treatment discontinuation (Sirey et al,
2001). Coping with the stigma by avoidance,
withdrawal and secrecy is common, but may result in
demoralisation, social isolation and lost opportunities
for education, employment and housing (Link et al,
1991).
Clausen (1981) saw stigma as ‘a buzz word that aroused
emotionalism’. Based on the results of a long-term study
of mental health service users and their families, Clausen
concluded that,
‘the patient’s fear of rejection, coupled
with uncertainty about ability to function in
everyday roles, is a far more significant barrier to
full social participation than is anything
appropriately called stigma’ (Clausen, 1981).
First-person accounts showed that some people developed
coping strategies to deal with the stigma of mental
illness and were able to lead a satisfactory life (Lundin,
1998; Camp et al, 2002).
We conducted a cross-sectional survey on the perception and
experience of stigmatisation among Chinese people
receiving mental health care in the community.
Method
The survey took place at the out-patient clinic of the
Department of Psychiatry at the University of Hong
Kong. The first 200 out-patients who met the
following criteria were recruited:
- the patient was literate and gave
informed consent;
- the patient was aged 18-60
years;
- based on assessment by the authors,
the patient was in remission or not
severely ill.
The authors reviewed the psychiatric record to establish the
primary DSM-IV Axis I diagnosis (American Psychiatric
Association, 1994).
A self-report questionnaire assessed beliefs about
discrimination against individuals with mental
illness, rejection experiences and ways of coping
with stigma, characterised as secrecy, avoidance and
withdrawal, and advocacy and confrontation. The questionnaire
(in Chinese) was modified from versions previously used in
Western studies (Link et al, 1991, 1997; Wahl,
1999). We included items that were relevant in a
Chinese society, and modified the wording and
sentence structures to make the questions easy to
understand. This questionnaire had earlier been piloted
with the help of 10 outpatients whose mental illness was
in remission.
Participants rated the section on perceived stigmatisation
using a four-point response scale (Table 1). Items
assessing rejection experiences (see Table 2) and
coping strategies (see Table 3) asked whether the
respondents ‘ever’ experienced the form of rejection
or employed the coping strategy described.
Participants answered using a yes/no response, and were advised
to answer ‘don’t know’ if they had not encountered
the relevant situation, to avoid overestimating negative
responses.
Table 1. Perceptions of stigmatisation (n=193)
|
Item1
|
Strongly disagree n (%)
|
Slightly disagree n (%)
|
Slightly agree n (%)
|
Strongly agree n (%)
|
|
Most people believe that
someone with a previous mental illness is
untrustworthy |
30 (15.5) |
46 (23.8) |
88 (45.6) |
29 (15.0) |
|
Most people would not
marry someone who has a history of mental
illness |
17 (8.8) |
49 (25.4) |
75 (38.9) |
52 (26.9) |
|
Most people believe that
someone with a previous mental illness is
dangerous |
24 (12.4) |
39 (20.2) |
85 (44.0) |
45 (23.3) |
|
Most people would take
the opinion of someone with a previous mental
illness less seriously |
28 (14.5) |
37 (19.2) |
86 (44.6) |
42 (21.8) |
|
Most people look down on
people who have a history of mental illness |
22 (11.4) |
30 (15.5) |
79 (40.9) |
62 (32.1) |
|
Most people think that
someone with a previous mental illness is less
intelligent than the average person |
35 (18.1) |
56 (29.0) |
65 (33.7) |
37 (19.2) |
|
Most employers would not
hire a person who has a history of mental
illness |
22 (11.4) |
25 (13.0) |
82 (42.5) |
64 (33.2) |
|
Most people avoid someone
who has a history of mental illness |
23 (11.9) |
43 (22.3) |
81 (42.0) |
46 (23.8) |
|
Most people would not
accept someone with previous mental illness as a
close friend |
22 (11.4) |
63 (32.6) |
68 (35.2) |
40 (20.7) |
|
Most people believe that
receiving psychiatric treatment is a sign of
personal failure
|
36 (18.7)
|
73 (37.8)
|
48 (24.9)
|
36 (18.7)
|
|
1.English translation of
the Chinese questionnaire |
|
Table 2. Experiences of
rejection (n=193)
|
Item
|
No n (%)
|
Don’t know1 n (%)
|
Yes n (%)
|
|
Have some of your friends
ever treated you differently after they knew you
had a history of mental illness? |
90 (46.6) |
49 (25.4) |
54 (28.0) |
|
Have some of your
neighbours, colleagues and relatives ever
avoided you because they knew you had a history
of mental illness? |
97 (50.3) |
61 (31.6) |
35 (18.1) |
|
Have your family members
ever avoided you because of your previous mental
illness? |
163 (84.5) |
15 (7.8) |
15 (7.8) |
|
Have people used the fact
that you have a history of mental illness to
hurt your feelings? |
103 (53.4) |
41 (21.2) |
49 (25.4) |
|
Have you ever seen or
read anything in the mass media (e.g. magazines,
newspapers, television and radio broadcasting
and advertisements) about persons with mental
illness that you found hurtful or offensive?
|
65 (33.7) |
33 (17.1) |
95 (49.2) |
|
Have you ever been turned
down for a job for which you were qualified when
your history of mental illness was revealed?
|
50 (25.9) |
104 (53.9) |
39 (20.2) |
|
Have you ever been
treated as less competent by others when they
learnt you had a history of mental illness? |
63 (32.6) |
64 (33.2) |
66 (34.2) |
|
Have you ever experienced
the break-up of a love relationship because of
your history of mental illness? |
83 (43.0) |
82 (42.5) |
28 (14.5) |
|
Have you ever been asked
to resign by your employer because of your
history of mental illness? |
102 (52.8) |
73 (37.8) |
18 (9.3) |
|
Have you ever been
neglected by a health care professional because
of your history of mental illness?
|
137 (71.0)
|
35 (18.1)
|
21 (10.9)
|
|
1.Participants were
advised to answer ‘don’t know’ for experiences
they had not encountered |
|
Table 3. Coping strategies (n=193)
|
Item
|
No n (%)
|
Don’t know1 n (%)
|
Yes n (%)
|
|
Secrecy |
|
|
|
|
Do you try your best
to hide the fact that you have a history of
mental illness? |
62 (32.1) |
22 (11.4) |
109 (56.5) |
|
Do you think it is a
good idea to keep a history of mental illness
secret? |
46 (23.8) |
23 (11.9) |
124 (64.2) |
|
Would you advise a
close relative or friend who had been a patient
with mental illness not to tell anyone about it?
|
60 (31.1) |
37 (19.2) |
96 (49.7) |
|
Do you wait until you
know a person well before you tell them you have
a history of mental illness? |
44 (22.8) |
21 (10.9) |
128 (66.3) |
|
Do you try to prevent
your colleagues and employers knowing that you
have had a mental health problem? |
57 (29.5) |
27 (14.0) |
109 (56.5) |
|
Do you avoid telling
the health care professionals that you have had
a history of mental illness? |
147 (76.2) |
15 (7.8) |
31 (16.1) |
|
You are given an
application form that requires you to provide
information of your history of mental illness:
do you leave that item out or reply that you
have no history of mental illness? |
50 (25.9) |
42 (21.8) |
101 (52.3) |
|
Avoidance and withdrawal
|
|
|
|
|
Do you avoid applying
for a job if you know the employer does not like
to hire people with previous mental illness?
|
59 (30.6) |
29 (15.0) |
105 (54.4) |
|
Do you resign from a
job if you know the employer does not like to
hire people with previous mental illness? |
114 (59.1) |
31 (16.1) |
48 (24.9) |
|
Do you avoid dating
and setting up a family because you have a
history of mental illness? |
113 (58.5) |
40 (20.7) |
40 (20.7) |
|
Do you prefer to make
friends with patients with previous mental
illness? |
72 (37.3) |
58 (30.1) |
63 (32.6) |
|
After receiving
psychiatric treatment, do you avoid making new
friends? |
150 (77.7) |
22 (11.4) |
21 (10.9) |
|
After receiving
psychiatric treatment, do you avoid going out
with friends? |
147 (76.2) |
18 (9.3) |
28 (14.5) |
|
Do you avoid a friend
because you know he or she will look down on
someone with a previous mental illness? |
66 (34.2) |
31 (16.1) |
96 (49.7) |
|
Advocacy and
confrontation |
|
|
|
|
Do you attempt to
correct your friends if they hold negative views
on people with mental illness? |
41 (21.2) |
33 (17.1) |
119 (61.7) |
|
Do you fight for
equality (e.g. speak up, write to newspapers,
complain to urban/legislative councillors) if
you or other patients with previous mental
illness are unfairly treated? |
81 (42.0) |
42 (21.8) |
70 (36.3) |
|
Do you complain to or
seek help from self-help organisations for
people with mental illness if you or other
patients with previous mental illness are
unfairly treated? |
62 (32.1) |
60 (31.1) |
71 (36.8) |
|
Do you participate in
some social activities related to mental illness
(e.g. educating the general public about mental
illness)? |
76 (39.4) |
56 (29.0) |
61 (31.6) |
|
Do you refuse to
resign from a job if you are asked to do so
because of a history of mental illness?
|
63 (32.6)
|
49 (25.4)
|
81 (42.0)
|
|
1.Participants were
advised to answer ‘don’t know’ for experiences
they had not encountered |
|
Results
Sample characteristics
Seven eligible patients did not complete their questionnaire,
and hence data from 193 respondents were used for further
analysis. There were 97 women and 96 men in the final
sample. The mean age was 39 years (range 20-58
years). Most of these participants were single (62%),
29% were married, 8% divorced and 1% widowed. Nearly
half were employed full-time (43%), 35% were unemployed,
8% were employed part-time, 8% were homemakers and 7%
worked in sheltered workshops or supported
employment. A majority lived with family members
(79%), 14% lived independently and 8% lived in
supervised hostels. Three-quarters of the sample had
had a previous admission to a psychiatric unit: 22% of
the 193 participants on one occasion, 36% two to four
times and 17% more than four times. Nearly half of
the sample had a diagnosis of schizophrenia or
another psychotic disorder (48%), 21% had bipolar
affective disorder, 13% major depression and 14%
anxiety disorder.
Responses to the questionnaire items
Most respondents felt that people with a history of mental
illness were discriminated against in various ways
(Table 1). Three-quarters of them agreed that ‘most
employers would not hire a person who has a history
of mental illness’.
The most common rejection experience was an encounter with a
hurtful or offensive media portrayal of mental illness,
reported by half the sample (Table 2). Actual
rejection was less frequently experienced. The
majority of the respondents (85%) affirmed that they
had not been rejected by their family members, and
71% answered that they had not been neglected by health care
professionals. Disclosure of the respondents’ mental
illness history to friends did not in most cases lead to
rejection: 28% of the respondents reported that their
friends treated them differently after they knew
about the history of mental illness, but 47% of the
sample did not experience such rejection. The item
generating the greatest proportion of ‘don’t know’
responses (54%) was that enquiring about rejection
experiences at job interview. Possibly, the respondents had
kept their history of mental illness a secret, or were not
required to reveal their state of health at the
interview.
The use of secrecy was the most frequently endorsed way of
coping with stigma, followed by the use of
confrontation and avoidance (Table 3). However, few
respondents hid their mental illness history from
health care professionals (16%) or avoided making new
friends after receiving psychiatric treatment (11%). More
than half of the sample said that they attempted to
correct their friends who held negative views about
people with mental illness (62%).
We used the chi-squared test to compare the stigma
experiences of those with a psychotic disorder and of
those with another psychiatric diagnosis. There was
no significant difference between the two groups,
except for one item: a greater proportion of people
with a psychotic disorder replied that they had been
turned down for a job for which they were qualified because
of their psychiatric history (29% v. 12%, 2=11.1,
d.f.=2, P=0.004).
Discussion
Our survey indicates that many mental health care patients feel
that they have experienced stigma and discrimination. On
the other hand, some respondents were not unfairly
treated when their mental illness history was
disclosed. A survey conducted in the USA among people
with schizophrenia receiving out-patient treatment
found that stigma experiences were common, but actual
discrimination was relatively less frequent (Dickerson et al,
2002). Half of those surveyed replied to the item ‘Have
you been treated as less competent by others when they
learned you had received psychiatric treatment?’ as
occurring ‘sometimes’, ‘often’ or ‘very
often’. The proportions who similarly endorsed the items
on being turned down for a job, difficulty in renting an
apartment, denial of educational opportunities and
exclusion from voluntary activities were 24%, 16%, 5%
and 9%, respectively. These respondents indicated
that they were generally treated fairly by others.
This contrasts with a report, based on responses from 556 UK
mental health care users, which showed that 56%
experienced discrimination within the family, 51%
from friends, 47% in the workforce and 44% from
general practitioners (Mental Health Foundation, 2000).
It is noteworthy that the UK survey had a
relatively low return rate of 13%, which might have resulted
in a self-selected bias. In our survey, the high level of
functioning might partly account for the infrequent
experience of rejection. Another explanation is that
the respondents had avoided disclosing their mental
illness history until they were confident of acceptance.
A significant proportion of our sample said they coped
with the stigma by advocacy and confrontation;
however, their replies did not necessarily indicate
actual behaviour.
Interpretation of the findings of our study is limited by its
non-random sampling method. Personal experiences of stigma
might have influenced study participation. It was our
impression that very few of those eligible refused to
participate, although the precise proportion could
not be determined. We cannot exclude the possibility
that the relatively infrequent report of actual
rejection was due to the respondents’ denial. The use
of a self-report questionnaire in this study avoided the risk
that the interpersonal setting of an interview might have
limited the disclosure of experiences that were
emotionally distressing; on the other hand, an
interview might facilitate the emotional expression
and reporting of stigma experiences. Another limitation
is that our findings cannot be extrapolated to Chinese
mental health users in other countries because of
differences in societal attitudes towards both
Chinese people and people with mental illness.
Our findings agree with published research that people with
mental illness are faced with problems of stigma and
struggle to cope with it every day (Wahl, 1999; Camp
et al, 2002; Dickerson et al, 2002;
Schulze & Angermeyer, 2003). However, we talked with
some of the study participants after they had completed
the questionnaire, and were encouraged by hearing of a few
examples of cordial acceptance following disclosure of the
participant’s mental illness history. One person
reported,
‘I had never imagined my senior to be so
supportive! One of my colleagues knew of my mental
illness and looked down on me. During my recent
admission to hospital, I told my senior about my
illness. Not only did my senior accept my illness, my
senior talked with the colleague who looked down on me and
asked the colleague not to discriminate against people
with mental illness.’
Many psychiatrists avoid telling patients with schizophrenia
their diagnosis (Ono et al, 1999; Clafferty et
al, 2001). This reluctance to impart the
diagnosis may come from psychiatrists’ paternalistic
concern that the subsequent labelling could seriously
harm the patient. Avoiding discussion of the diagnosis cannot
help in tackling the problems related to psychiatric
stigma. A major implication of our study is that
mental health professionals can present a less gloomy
picture of the public reaction towards people with
mental illness. Patients should be given hope and
advice on coping with the stigma. Cognitive-behavioural
therapies and fostering empowerment are strategies
that can assist individuals dealing with the
self-stigma and social stigma of mental illness
(Dickerson, 1998; Holmes & River, 1998).
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