1.Overcoming the stigma of epilepsy
Neurology Asia 2010;15(Supplement 1):21-24
A prime diffi culty facing all people with epilepsy is dealing with the stigma which is associated with
it in almost all societies. Stigma arises from the perception of difference from the norm, particularly
powerful when that difference is not understood. This arises from the uniquely human need for
predictability, resulting from the ability to think abstractly, and thus to surmise the future. A failure
of expectation, or the uncertainty caused by an inability to predict, causes insecurity, or a “fear of the
unknown”, which we try to reduce by rejecting its perceived cause. Stigma can be attached to themselves
or their epilepsy by the person with epilepsy, as well as by others about them. Such discomfort is
accentuated by perceived inconsistency between the familiar and unfamiliar. Discrimination occurs as
a result of stigma, causing people with epilepsy to be preoccupied with epilepsy and expending much
psychological energy on disclosure anxiety, vigilance and a consequent uncertainty of identity. This
can result in lower self-esteem, self-fulfi lling prophecies, self-blame and self-rejection, and ultimately
dehumanisation. The most effective means of overcoming stigma is by contact between people with
epilepsy and those holding the stigma against them. Such contact must be on an equal status footing,
repeated and consistent, require interdependence, be socially approved and enjoyable, contradict the
stereotypes held, and be with individuals seen as representative of the out-group as a whole. Hence
familiarity, rather than breeding contempt, produces the predictability and consequent comfort and
acceptability of the normal.
2.The psychological and social impact of epilepsy
Neurology Asia 2007;12(Supplement 1):10-12
Epilepsy has many non-medical effects on the people with epilepsy, their family and community. To
ensure that epilepsy is fully controlled requires a specialist neurologist or paediatrician with up-todate
detailed knowledge to diagnose and prescribe treatment, a general practitioner to supervise dayto-day
medical management and an epilepsy specialist community worker to provide psychosocial
support, information and education to help maintain quality of life. By working together as a team,
the specialist, the general practitioner and the epilepsy specialist community worker can ensure that
the psychological and social impact of epilepsy is reduced to a minimum.
3.Community care for people with epilepsy in a modern society: The New Zealand model
Neurology Asia 2007;12(Supplement 1):39-41
The Epilepsy New Zealand Field Officer scheme is a model for the provision of community care for
people with epilepsy. Epilepsy New Zealand is a voluntary organization. It runs the community care
service by employing 27 Field Officers throughout the country. The Officers provide support and
information to people with epilepsy, their family and the general public. It is estimated that the service
covers about 10% of epilepsy patients in New Zealand. All Field Officers are required to study for
nationally recognized Certificate and Diploma in Epilepsy Care qualifications. The funding for this
service is by a grant from the Government, charitable trusts and other fund-raising activities.
4.Chinese Public Attitudes Toward Epilepsy (PATE) scale: translation and psychometric evaluation
Kheng Seang Lim ; Wan Yuen Choo ; Cathie Wu ; Michael D Hills ; Chong Tin Tan
Neurology Asia 2013;18(3):261-270
Introduction: None of the quantitative scale for public attitudes toward epilepsy was translated to Chinese
language. This study aimed to translate and test the validity and reliability of a Chinese version of the
Public Attitudes Toward Epilepsy (PATE) scale. Methods: The translation was performed according to
standard principles and tested in 140 Chinese-speaking adults aged more than 18 years for psychometric
validation. Results: The items in each domain had similar standard deviations (equal item variance),
ranged from 0.85-0.95 in personal domain and 0.75-1.04 in general domain. The correlation between an
item and its domain was 0.4 and above for all, and higher than the correlation with the other domain.
Multitrait analysis showed the Chinese PATE had a similar variance, floor and ceiling effects, and
relative relationship between the domains, as the original PATE. The Chinese PATE scale showed
a similar correlation with almost all demographic variable except age. Item means were generally
clustered in the factor analysis as hypothesized. The Cronbach’s α values was within acceptable range
(0.773) in the personal domain and satisfactory range (0.693) in the general domain.
Conclusion: The Chinese PATE scale is a validated and reliable translated version in measuring the
public attitudes toward epilepsy.