May 2008 - Epilepsy Australia

life (QOL) of people with epilepsy(Jacoby, et al, 1996; Baker et al, 1997).Hermann et al (1990) found that stigmais one of seven key predictor variableswhen studying significant causes andprocesses in the development of mentalillness (psychopathology). Perceivedstigma was ranked fourth in importancein predicting quality of life, afterpsychological stress, loneliness andadjustment (Surmaijer et al, (2001).Stigma is also associated with reducedself-esteem, anxiety, depression, andhelplessness (Jacoby, 1994; Dilorio et al,2003; Westbrook et al, 1992)Educating people on the true causesof epilepsy is the key to address theissue of stigma associated with thisdisorder. Knowledge gaps have thepotential for discriminatory behaviour.Misunderstandings coupled with ancientmythologies surrounding epilepsy hauntmany parts of resource poor countries.The social value of people with epilepsyhas been so devalued for so long. Weneed to cut across the message thatepilepsy is not a disease and it is adisorder that is not contagious. Peoplewith epilepsy can lead normal livesand work regular jobs. A crucial partof getting rid of epilepsy stigma is toraise public and professional awarenesstogether with changes in legislationwhich reinforces fear and discrimination(WHO, 2001). The role of the mediain this noble exercise is paramount,perhaps in collaboration with healthprofessionals, especially GPs andneurologists.ReferencesEpilepsy social research in Australiais ‘uncharted waters’ where noinvestigation into knowledge of, andattitudes towards, epilepsy or epilepsystigma in either the general public orspecific significant populations such asteachers, nurses or employers has beencarried out. As Brown (2006) indicatesAustralian social research into epilepsyhas been a ‘shadow-dweller’ for toolong. We are lagging behind even somedeveloping countries such as India,Zambia, Kenya, Vietnam or Brazil interms of social research into epilepsy.Research program at theEpilepsy Foundation ofVictoria (EFV)The EFV has already initiated a majorresearch program into Australian’sknowledge of and attitudes towardsepilepsy together with many othersocial and applied research projects.To begin with, the EFV will adopt a‘micro’ research approach focussing on‘small sample studies’ in Victoria beforeadopting a ‘macro’ research approachfocusing on wider national surveys infuture.The EFV’s ResearchParticipant Register (RPR)The RPR founded by Dr Kevin Brown,reached the 548 mark by the end ofMarch 2008. This is the only register ofits type in Australia and we have not sofar learned of another anywhere else inthe world. We are very hopeful that wewill be able to achieve our target of 1000before the end of 2008. The RPR is avoluntary cohort of people with epilepsyand their carers who have expressedtheir willingness to participate in socialresearch into epilepsy and it will providethe basis for a series of psychosocialresearch projects into epilepsy andseizure in future.The EFV has already completed abaseline survey on ‘Characteristicsof the Research Register ParticipantsLiving with Epilepsy in Victoria. InApril 2007, we sent out a short survey toeveryone who had registered (N=520),just to capture some basic details aboutyour lives. This data will be our baselineinformation giving us a ‘snapshot’ ofwhat life with epilepsy is like in 2007.Three hundred and thirty eight (N=338)surveys have been returned, a responserate of 65%.Out of 338 respondents, 212 wereclients, 95 were carers, 6 were carersand/or clients and 15 were concerned.50% of the respondents graduated fromhigh school (year 12 or equivalent)and 38% had diploma or universitydegree. 25 % of persons with epilepsywere employed full time and 43%were unemployed. 46% of those whoanswered the survey informed that theirweekly income is less than 400 dollars.About 62% of people with epilepsy owntheir home and 24% were renting. Out of212 clients, only 118 persons (57%) hada driving licence. The number of women(60.8%) who were living with epilepsywas significantly higher than the numberof men (38.7%). A more detailed surveydata analysis will be produced in thenext edition of The Epilepsy Report.Baker GA, Jacoby A, Buck D et al (1997) Quality of life of people with epilepsy; A European study. Epilepsia, 38, 353-62Baker GA, Brooks J, Buck D, Jacoby A (2000) The stigma of epilepsy: a European perspective. Epilepsia, 41(1), 98-104Britten N, Wadsworth ME, Fenwick PB (1984) Stigma inpatients with early epilepsy; a national longitudinal study. Journal of Epidemiology and CommunityHealth, 38(4) 291-5Brown, K (2006) Social research and epilepsy in Australia. The Epilepsy Report, 4-5Dilorio C, Obborne, SP, Letz R, Henry T, Schomer DL, Yeager K, (2003) The association of stigma with self-management and perceptions of health careamong adults with epilepsy. Epilepsy & Behaviour, 4(3), 259-267Goffman E (1969) Stigma: notes on the management of spoiled identity. New Jersey, Prentice HallHermann BP, Whitman S, Wyler AR et al (1990) Psychosocial predictors of psychopathology in epilepsy. British Journal of Psychiatry. 156, 98-105Jacoby A (1994) Felt versua enacted stigma: a concept revisited. Evidence from a study of people with epilepsy in remission. Social Science & Medicine,38(2), 269-74Jacoby A, Baker GA, Steen N Potts P, Chadwick D (1996) The clinical course of epilepsy and its psychosocial correlates; findings from a UK communitystudy, Epilepsia, 37, 148-61Lee SA, Yoo HJ, Lee BJ, (2005) Factors contributing to the stigma of epilepsy. Seizure, 14(3), 157-163Link B and Phelan J (2001) Conceptualizing stigma, Annual Review of Sociology, 27, 363-385Ratsepp M, Oun A, Haldre s, Kaasik AE (2000) Felt stigma and impact of epilepsy on employment status among Estonian people: exploratory study.Seizure, 9(6), 394-401Suurmeijer TPBM, Reuvekamp MF Aldenkamp BP (2001) Social functioning, psychological functioning and quality of life in epilepsy, Epilepsia, 42,1160-68Walker C (2007) Researching the personal impact of epilepsy. Epilepsy Australia,Westbrook LE, Bauman LJ, Shinnar S (1992) Applying stigma theory to epilepsy; a test of a conceptual model. J Pediatric Psychology, 17, 633-49WHO (2001) Epilepsy: social consequences and economic aspects, Fact sheet No 166, World Health Organisation, GenevaFernandes PT. Salgado PC. Noronha AL. de Boer HM. Prilipko L. Sander JW. Li LM. Epilepsy stigma perception in an urban area of a limited-resourcecountry. Epilepsy & Behaviour. 11(1):25-32, 200712 THE EPILEPSY REPORT MAY 2008