May 2008 - Epilepsy Australia

An invitation from theEpilepsy Foundationof VictoriaThe Epilepsy Foundation of Victoria (EFV) invites you to become anoccasional participant in the Epilepsy Foundation’s ongoing researchprogramme into the social effects of living with epilepsy and caring for thosewith epilepsy. We need people to tell us about their experiences and views ofliving with epilepsy.What is EFV Research Participant Register (RPR)?The Epilepsy Foundation of Victoria’s Research Participant Register is anongoing initiative created in 2006 to establish a unique research sourcefrom which we can learn much valuable information about epilepsy that canbe used to improve the lives of people affected by this condition. This is theonly register of its kind in Australia and we have not so far learned of anotheranywhere else in the world.Why is it important to join in this register?The World Health Organisation has stated that: the social consequences ofepilepsy are often more difficult to overcome than the seizures themselves.They are talking about issues like finding and keeping a job, transport anddriving and the attitudes of other people towards epilepsy. Yet in Australia,there is hardly any reliable research into these social consequences. If theEpilepsy Foundation of Victoria gathers detailed factual evidence of this kind,we will be even more successful in lobbying governments for a better deal anda fairer go for all those living with epilepsy.Who is eligible to join in RPR?Following individuals are eligible to join the register.o Individuals who have epilepsy/seizure disordero Carers who look after someone with epilepsy/seizure disorderAre there risks to me as a research register participant?This is not a medical or clinical research register. From time to time, we mightcontact you and ask if you would be prepared to answer some questionsover the phone or fill in a mailed questionnaire. Sometimes there will be smallgroup meetings of participants at the Foundation’s office in Camberwell or aregional centre to which you might be invited.Does putting my name in the RPR obligate to participate infuture research projects?Putting your name does not obligate you in any way. You may be too busyor just not feel like participating at that time – that’s fine! But if you do, anyinformation you provide will be confidential, anonymous, safeguard and onlyused for specified research purposes.How would I benefit by joining the register?There may be opportunities to talk with people living with epilepsy and thosewho work with them. Most importantly, this is an opportunity to be part of alongitudinal study of living with epilepsy – the first of its kind.If you are interested in learning more about thisresearch contact:Dr Jaya PinikahanaPrincipal Social ResearcherPhone: (03) 9805 9125 Fax: (03) 9882 7159jpinikahana@epilepsy.asn.auParticipants soughtfor epilepsy researchprojectMartin Raffaele is currently studying for his Mastersin Psychology at The University of Sydney. His researchproject is titled:An exploration of the psychosocial effects that schoolagechildren with Childhood Onset Absence Epilepsy(CAE) experience when their condition is misdiagnosed asAttention Deficit-Hyperactivity Disorder (ADHD).Project OverviewThe aim of this research is to create an understandingof the psychosocial effects on school-age children withchildhood onset absence epilepsy (CAE) when theircondition is misdiagnosed as attention deficit-hyperactivitydisorder (ADHD). The nature of psychosocial effectsthat are evident in CAE children when misdiagnosis andinappropriate labelling is experienced will be explored.The aim is to understand the reactions of those closest tothe child with childhood onset absence epilepsy (CAE)at the time of the attention deficit-hyperactivity disorder(ADHD) diagnosis and sequentially, and how these reactionsaffects/affected the child with CAE psychosocially will beinvestigated.ParticipationI am seeking five adolescents/young adults with childhoodonset absence epilepsy (CAE), whose condition at an earlierage was misdiagnosed as attention deficit-hyperactivitydisorder (ADHD) to participate in the study. Theidentification of the participants will remain confidential.In-depth personal interviews will be of approximately onehour duration. A second interview can be made available iffurther time is needed to discuss the experiences and answerfurther questions. Each interview will be audio-recordedwith participants’ consent. Based on the decision of eachparticipant, the interview/s will take place either at theirresidence or in a private office at The University of Sydney.The parent (guardian) of each participant will also beinterviewed on what effect they feel the diagnosis of ADHDand the later correct diagnosis of CAE played on the child atthe time of diagnosis. The result of these interviews will beshared with the participants for their approval.This research study has been approved by the HumanEthics Research Committee, The University of Sydney.For more information please contact:Martin RaffaeleBA. GradDipPsych.Faculty of Education and Social WorkBuilding A35.518University of Sydney NSW 2005martin.raffaele@gmail.com16 THE EPILEPSY REPORT MAY 2008