Experience of stigma among Chinese mental health patients in Hong Kong

AIMS AND METHOD

The study was intended to rectify the lack of data on how Chinesepeople experience the stigma of mental illness. A questionnaireon perceived stigmatisation, experiences of rejection and waysof coping with stigma was completed by 193 persons attendinga psychiatric out-patient clinic in Hong Kong.

RESULTS

Most of the participants were aware of the stigma associatedwith mental illness, but experiences of rejection were relativelyless frequent. Eleven per cent of the respondents indicatedthat they were neglected by health care professionals and 8%had been avoided by family members. The most frequently reportedcoping method was maintaining secrecy about the illness.

CLINICAL IMPLICATIONS

In China, people with mental health problems experience stigmain various degrees. However, some of the people surveyed expressedfeelings of relief that others were supportive and sympathetictowards their illness. Mental health professionals should maintainoptimism in helping their patients to cope with the stigma.

Introduction

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Introduction

The stigma attached to a label of ‘mental illness’can have a lasting impact on the person so labelled. The expectationand actual experience of stigmatisation can result in loweringof self-esteem (Link et al, 2001) and quality of life (Rosenfield, 1997),persistent depression (Link et al, 1997), impairmentin social relationships (Perlick et al, 2001) and early treatmentdiscontinuation (Sirey et al, 2001). Coping with the stigmaby avoidance, withdrawal and secrecy is common, but may resultin demoralisation, social isolation and lost opportunitiesfor education, employment and housing (Link et al, 1991).

Clausen (1981) saw stigma as ‘a buzz word that arousedemotionalism’. Based on the results of a long-term studyof mental health service users and their families, Clausen concludedthat,

‘the patient’s fear of rejection, coupled with uncertainty about ability to function in everyday roles, is a far moresignificant barrier to full social participation than is anythingappropriately called stigma’ (Clausen, 1981).

First-person accounts showed that some people developed copingstrategies to deal with the stigma of mental illness and wereable to lead a satisfactory life (Lundin, 1998; Camp et al,2002).

We conducted a cross-sectional survey on the perception andexperience of stigmatisation among Chinese people receivingmental health care in the community.

Method

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Method

The survey took place at the out-patient clinic of the Departmentof Psychiatry at the University of Hong Kong. The first 200out-patients who met the following criteria were recruited:

the patient was literate and gave informed consent;
the patientwas aged 18-60 years;
based on assessment by the authors,the patient was in remissionor not severely ill.

The authors reviewed the psychiatric record to establish theprimary DSM-IV Axis I diagnosis (American Psychiatric Association, 1994).

A self-report questionnaire assessed beliefs about discriminationagainst individuals with mental illness, rejection experiencesand ways of coping with stigma, characterised as secrecy, avoidanceand withdrawal, and advocacy and confrontation. The questionnaire(in Chinese) was modified from versions previously used inWestern studies (Link et al, 1991, 1997; Wahl, 1999). Weincluded items that were relevant in a Chinese society, andmodified the wording and sentence structures to make the questionseasy to understand. This questionnaire had earlier been pilotedwith the help of 10 outpatients whose mental illness was inremission.

Participants rated the section on perceived stigmatisation usinga four-point response scale (Table 1). Items assessing rejectionexperiences (see Table 2) and coping strategies (see Table 3)asked whether the respondents ‘ever’ experiencedthe form of rejection or employed the coping strategy described.Participants answered using a yes/no response, and were advisedto answer ‘don’t know’ if they had not encounteredthe relevant situation, to avoid overestimating negative responses.

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Table 1. Perceptions of stigmatisation (n=193)

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Table 2. Experiences of rejection (n=193)

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Table 3. Coping strategies (n=193)

Results

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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 meanage was 39 years (range 20-58 years). Most of these participantswere 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% workedin sheltered workshops or supported employment. A majoritylived with family members (79%), 14% lived independently and8% lived in supervised hostels. Three-quarters of the samplehad had a previous admission to a psychiatric unit: 22% ofthe 193 participants on one occasion, 36% two to four timesand 17% more than four times. Nearly half of the sample hada diagnosis of schizophrenia or another psychotic disorder(48%), 21% had bipolar affective disorder, 13% major depressionand 14% anxiety disorder.

Responses to the questionnaire items
Most respondents felt that people with a history of mental illnesswere discriminated against in various ways (Table 1). Three-quartersof them agreed that ‘most employers would not hire aperson who has a history of mental illness’.

The most common rejection experience was an encounter with ahurtful or offensive media portrayal of mental illness, reportedby half the sample (Table 2). Actual rejection was less frequentlyexperienced. The majority of the respondents (85%) affirmed that they had not been rejected by their family members, and71% answered that they had not been neglected by health careprofessionals. Disclosure of the respondents’ mentalillness history to friends did not in most cases lead to rejection:28% of the respondents reported that their friends treated themdifferently after they knew about the history of mental illness,but 47% of the sample did not experience such rejection. Theitem generating the greatest proportion of ‘don’tknow’ responses (54%) was that enquiring about rejectionexperiences at job interview. Possibly, the respondents hadkept their history of mental illness a secret, or were not requiredto reveal their state of health at the interview.

The use of secrecy was the most frequently endorsed way of copingwith stigma, followed by the use of confrontation and avoidance (Table 3). However, few respondents hid their mental illnesshistory from health care professionals (16%) or avoided makingnew friends after receiving psychiatric treatment (11%). Morethan half of the sample said that they attempted to correcttheir friends who held negative views about people with mentalillness (62%).

We used the chi-squared test to compare the stigma experiencesof those with a psychotic disorder and of those with anotherpsychiatric diagnosis. There was no significant differencebetween the two groups, except for one item: a greater proportionof people with a psychotic disorder replied that they had beenturned down for a job for which they were qualified becauseof their psychiatric history (29% v. 12%, ${chi}$ ²=11.1, d.f.=2,P=0.004).

Discussion

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Discussion

Our survey indicates that many mental health care patients feelthat they have experienced stigma and discrimination. On theother hand, some respondents were not unfairly treated whentheir mental illness history was disclosed. A survey conductedin the USA among people with schizophrenia receiving out-patienttreatment found that stigma experiences were common, but actualdiscrimination was relatively less frequent (Dickerson et al, 2002). Half of those surveyed replied to the item ‘Haveyou been treated as less competent by others when they learnedyou had received psychiatric treatment?’ as occurring‘sometimes’, ‘often’ or ‘veryoften’. The proportions who similarly endorsed the itemson 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 respondentsindicated that they were generally treated fairly by others.This contrasts with a report, based on responses from 556 UKmental health care users, which showed that 56% experienceddiscrimination within the family, 51% from friends, 47% inthe workforce and 44% from general practitioners (Mental Health Foundation, 2000).It is noteworthy that the UK survey hada relatively low return rate of 13%, which might have resultedin a self-selected bias. In our survey, the high level of functioningmight partly account for the infrequent experience of rejection.Another explanation is that the respondents had avoided disclosingtheir mental illness history until they were confident of acceptance.A significant proportion of our sample said they coped withthe stigma by advocacy and confrontation; however, their repliesdid not necessarily indicate actual behaviour.

Interpretation of the findings of our study is limited by itsnon-random sampling method. Personal experiences of stigmamight have influenced study participation. It was our impressionthat very few of those eligible refused to participate, althoughthe precise proportion could not be determined. We cannot excludethe possibility that the relatively infrequent report of actual rejection was due to the respondents’ denial. The useof a self-report questionnaire in this study avoided the riskthat the interpersonal setting of an interview might have limitedthe disclosure of experiences that were emotionally distressing;on the other hand, an interview might facilitate the emotionalexpression and reporting of stigma experiences. Another limitation is that our findings cannot be extrapolated to Chinese mentalhealth users in other countries because of differences in societalattitudes towards both Chinese people and people with mentalillness.

Our findings agree with published research that people withmental illness are faced with problems of stigma and struggleto cope with it every day (Wahl, 1999; Camp et al, 2002; Dickerson et al, 2002;Schulze & Angermeyer, 2003). However, wetalked with some of the study participants after they had completedthe questionnaire, and were encouraged by hearing of a fewexamples of cordial acceptance following disclosure of the participant’smental illness history. One person reported,

‘I had never imagined my senior to be so supportive! Oneof my colleagues knew of my mental illness and looked downon me. During my recent admission to hospital, I told my seniorabout my illness. Not only did my senior accept my illness,my senior talked with the colleague who looked down on me andasked the colleague not to discriminate against people withmental illness.’

Many psychiatrists avoid telling patients with schizophreniatheir 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 seriouslyharm the patient. Avoiding discussion of the diagnosis cannothelp in tackling the problems related to psychiatric stigma.A major implication of our study is that mental health professionalscan present a less gloomy picture of the public reaction towardspeople with mental illness. Patients should be given hope andadvice on coping with the stigma. Cognitive-behavioural therapiesand fostering empowerment are strategies that can assist individualsdealing with the self-stigma and social stigma of mental illness(Dickerson, 1998; Holmes & River, 1998).

References

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