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.
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
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.
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
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 email@example.com 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 firstname.lastname@example.org
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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More than 15,000 copies of a book that brings together global expertise
on SUDEP will have been distributed to epilepsy communities around the
world by the end of the 66th annual American Epilepsy Society conference.
Epilepsy Australia, in partnership with Flinders University is conducting an online survey exploring the experiences and needs of people who have been bereaved by epilepsy.
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