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Latest Report: Out of the Shadows: needs, perceptions and experiences of people living with epilepsy in Australia. Findings from Wave 2 of the Longitudinal Study survey, April 2012.
Australia's first longitudinal study of epilepsy looking at needs, perceptions and experiences of people living with epilepsy is underway. This project has been made possible through the innovative direction undertaken by the Epilepsy Foundation of Victoria in 2006 in establishing a psychosocial research program aimed at providing an evidence base to argue for improved policies and services at the government and community levels.
The aims of this research are:
To describe the perceptions, experiences and attitudes of people living with epilepsy
To assess, within specific demographic groups, the personal and social impact of epilepsy with a specific focus on stigma and social exclusion
To identify health and social support needs of people living with epilepsy with specific reference to access to health care, information, parenting, employment, education and physical activities
To identify financial non-financial barriers that may account for any observed inequalities in access to health care experienced by people in specific demographic groups
To establish prevalence of physical and psychiatric morbidity in persons with epilepsy and to evaluate the impact of epilepsy and co-morbidity on quality of life measures
To identify potential strategies to meet the personal, social and health needs of people living with epilepsy.
This unique research project will enable us to learn valuable information about epilepsy that can be used to improve the lives of people affected by this condition.
With the information gathered from the study, the epilepsy service providers in Australia will be better placed to assist people with epilepsy, other service providers and government to make better decisions about the health and social supports that people living with epilepsy require. It will also raise awareness of the challenges people with epilepsy face in their day to day lives.
This study is expected to continue for at least 10 years, on an annual basis, to establish the changing pattern of the true impact of living with epilepsy. The project has received human research ethics approval from Deakin University in Victoria.
If you are a person living with epilepsy or the carer of a person living with epilepsy and are interested in taking part in the survey, please contact the Epilepsy Foundation of Victoria on 03 9805 9111 or email research@epilepsy.asn.au to join the Research Register and an application form will be sent to you.
Your personal details will remain totally confidential. We will not ask for your name on the survey but a project identification number will be printed on the survey to give Epilepsy Foundation researchers the ability to follow-up from time to time and measure the changing impact of epilepsy on your life over time.
For further information please contact Pat McGuirk (03) 9805 9111 or email research@epilepsy.asn.au
Out of the Shadows: needs, perceptions and experiences of people living with epilepsy in Australia. Findings from Wave 2 of the Longitudinal Study survey
Epilepsy Australia National Help Line 1300 852 8653
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