Report prepared by:Dr Christine Walker, Chronic Illness Alliance Victoria
The Wave 2 survey of 2010 had 343 from 621 research register participants (response rate 55%).
report examines the findings of Australia's largest nationwide survey
conducted amongst people with epilepsy and their carers that aimed to
quantify the true impact living with epilepsy has on individuals.
This survey was widely distributed through Epilepsy Australia Affiliates as members of JECA.
The Life with Epilepsy
Report provides valuable insight into what it means to live with
epilepsy and helps to improve understanding of the current issues faced
by those living with the condition.
findings include: the impact of epilepsy on the ability to undertake
day-to-day activities such as working or studying; avoiding public
transport for fear of seizures thus relying on friends or family to get
around; the generally heightened costs of living with a chronic illness
combined with the inability for many people with epilepsy to gain full
time employment, significantly higher levels of psychological distress
among people with epilepsy than the general population, transport issues
Download the Life with Epilepsy report here.
Copies of this report are freely available from all Epilepsy Australia Affiliates or by emailing firstname.lastname@example.org
project was undertaken by The Chronic Illness Alliance in partnership
with The Epilepsy Foundation of Victoria [EFV] to research the social
and emotional issues that impact on the lives of people with epilepsy
and to use the results of the survey to:
were held throughout Victoria with a range of areas identified by
participants as important to them and where they would like to see more
research undertaken. In priority these are: community awareness,
mobility issues, employment and education, disclosure, quality of life
issues, sports, costs and information.
Recommendations arising from the project:
The project was not able to reach all groups of people with epilepsy to consult with them. This project recommends that:
project be undertaken to consult with people with epilepsy from other
culturally and linguistically diverse groups, prisoners and ex-prisoners
with epilepsy and indigenous people with epilepsy. This will help to
meet the needs of these communities as identified by JECA.
Download Researching the personal impact of epilepsy report here
Printed copies of this report are freely available from Epilepsy Australia Affiliates or by emailing email@example.com
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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