Sharing the vision epilepsy: life’s turning point Gavin Dimitri

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THE EPILEPSY REPORT OCTOBER 2008

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                          THE EPILEPSY REPORT OCTOBER 2008

E

pilepsy is one of the commonest 

neurological disorders. In addition 

to suffering recurrent seizures and 

long-term treatment, the patients with 

epilepsy (PWE) have to bear a severe 

psychosocial burden. Stigma is one of 

the psychosocial problems faced by the 

patients with epilepsy. Reducing sigma 

for the PWE is a very important task and 

a key factor to improving

 

the lives of the 

patients.

Objective

To investigate beliefs about the causes, 

mechanism and impact of stigma of 

PWE in urban and rural in Beijing, 

which would provide practical evidence 

and theory for the later intervention 

study.

Methods

We investigated beliefs about the 

causes, course, and treatment of 

epilepsy and its impact on quality of 

life (QOL) in key target groups, using 

‘‘mini-ethnographies’’ involving rapid 

appraisals

 

to inform subsequent detailed 

qualitative studies (in-depth interviews 

and focus group discussions) with 

identified relevant informant groups, 

and reviewed local literature and media 

reports. Mini-ethnographies were 

proposed as focusing on and interpreting 

a specific set of cultural phenomena 

and related human experiences, in the 

present case, epilepsy and the medical 

and social practices relating to it. Our 

study involved 141 in-depth interviews 

and 12 focus groups in Beijing, China.

Twenty four patients with epilepsy 

and 24 family members who had lived 

in urban Beijing at least 5 years and the 

same number of PWE and their family 

members in rural Beijing were involved 

in the study. Five trained researchers 

interviewed the patients and their family 

members at their homes. The contents 

of the questionnaire included four 

aspects: the knowledge of epilepsy and 

the recognition of epilepsy, the process 

of epilepsy treatment, the influence of 

epilepsy on PWE and their families, the 

reaction of the PWE and their family 

members to the public’s attitude toward 

epilepsy.

Interviews were conducted in 

informants’ homes; focus groups 

were conducted in local health or 

community facilities or places of 

work. All interviews and focus groups 

were conducted by local research 

teams. In this study, all encounters 

were tape-recorded (with permission 

from informants), the recordings were 

then transcribed. We used qualitative 

research methods to analyze the data, 

code key words, probe the connection 

among key words and conclude the 

model of stigma.

 

Results

Most of the patients experienced 

more or less stigma. The stigma of 

PWE included the feelings as follows: 

feeling that some people looked down 

on them, feeling that some people were 

uncomfortable when together with him/

her and feeling a lower self-esteem. The 

causes of stigma included five aspects: 

social prejudice and cultural aesthetics, 

lack of employment opportunity, 

failure of marriage, economic burden, 

coach effects and overprotection from 

their families. One third of the PWE 

mentioned that the public had a wrong 

perception of epilepsy. Some people 

thought epilepsy was a kind of mental 

disease and looked upon epilepsy 

patients as ‘madmen’. Some others 

thought epilepsy patients were mentally 

retarded or fools. Because of these 

reasons, the epilepsy patients suffered 

the public’s avoidance and ridicule, and 

faced social rejection. It’s also very 

embarrassing for epilepsy patients to 

be surrounded by people and ridiculed 

in public when the patients suffered 

seizure.

About 30% of the patients (≥18-50 

years) in this group had a job. PWE were 

represented as somehow unreliable and 

“less competent” employees because 

of their possibility to have seizures 

during his/her work. They were also 

seen as physically weaker and liable to 

have seizures particularly undertaking 

heavy physical work or “brainwork” 

and so unsuited to the demands of paid 

employment. 75% of the PWE who had 

a job had never told their employers that 

they had epilepsy. Almost all of them 

WZ Wang; HC Yang; JZ Wu; XL Du; B Jiang; Ann Jacoby; Gus Baker.

.

A study on reducing stigma 

for patients with epilepsy in 

Beijing: 

causes, mechanism and impact

had an experience of the dismissal from 

employment when they were found to 

have had epilepsy. 

Some male PWE had never married. 

On the other hand, most married PWE 

had a bad quality of marriage. A view 

common among Chinese informants was 

that although there were no technical 

restrictions on marriage, the lesser 

desirability of a partner with epilepsy 

was self-evident and prospective partners 

would inevitably be hesitant, because 

“everyone wants a healthy partner.” The 

logic of this argument was followed by 

widespread acceptance that PWE would 

be well-advised to conceal their condition 

from prospective partners and that even 

if able to marry without deception, such 

marriages were more likely to end in 

divorce because of the resultant burdens 

to the partners. It was also generally 

accepted that those who did marry 

without concealing their condition were 

likely to marry less well.

Almost 90% of patients considered 

that economic pressure was their main 

difficulty. Epilepsy was understood to 

be chronic, not curable, but controllable, 

and was seen as an enormous financial 

burden for the patients and their families. 

Unemployment also aggravates the 

financial burden. 

Concealment and secrecy, worry 

about unprovoked seizures and changes 

of psychology and personality were 

the impacts of stigma on PWE. Non-

disclosure of epilepsy was endorsed as 

an appropriate management strategy, 

clearly linked to the belief that to reveal 

it would lead to differential treatment 

and discrimination, hence, potentially 

major impacts for the quality of life. 

PWE and their family members in China, 

particularly those living in the rural 

areas, appeared more likely to support a 

policy of non-disclosure or only partial 

disclosure. This appeared rooted in 

Chinese thinking of seizures as breaching 

‘‘social etiquette’’ and extremely 

shameful; and the strong conviction 

among Chinese informants that revealing 

their condition to others would lead them 

to be looked down on and suffer ‘‘loss 

of face.’’ As a result, non-disclosure 

extended even to close relatives, including 

prospective marriage partners, spouses, 

children, and siblings.

Conclusions

Stigma is one of the most important 

psychosocial burdens for PWE. The 

efficacy of treatment and its impact 

on the quality of life of PWE have 

been neglected seriously by society 

and the public in China. Unpacking 

the underpinning beliefs and practical 

realities of epilepsy stigma should allow 

more precise definition of the required 

focus for future interventions aimed 

at reduction of epilepsy associated 

burden, and of the appropriate outcomes. 

Education to the public, patients and their 

family members should be strengthened 

from now on to ensure that epilepsy is no 

longer deemed as a social label. 

Researcher interviewing a patient in Beijing.

At the recent Asian and Oceanian Epilepsy Congress held in Xiamen, China in May, 

the issue of stigma was high on the agenda at both the scientific meeting and the IBE 

meeting for people with eplepsy where Dr Wang presented an overview of his study. 

Denise Chapman caught up with Dr Wang to discuss his findings and The Epilepsy 

Report is pleased to present this summary of his work. 

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