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8 August 2012
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.
"Reducing Epilepsy Deaths: exploring the experiences and needs of people bereaved by epilepsy"
Principal Investigator: Dr Michelle Bellon Disability and Community Inclusion, School of Medicine, Flinders University Board of Directors, Epilepsy Australia (08) 8201 3645 michelle.bellon@flinders.edu.au
Epilepsy-related deaths can be sudden and unexpected, causing profound, widespread effects. We would like to know how well health and community services respond to the needs of the bereaved at this difficult time. We would also like to know whether families and friends feel that particular factors contributed to the deaths, and what resources they have been able to access to help them cope with this event. This information will be used to make recommendations for sensitive service provision, through policy and training improvements. It will also help to improve community awareness of epilepsy-related risks.
If you have lost a friend or family member to epilepsy, and you are aged over 18 years, you are invited to fill out a 20 minute online survey. It is fine for several people to fill out individual questionnaires about the same person with epilepsy. In one family, people may have different ideas to share. We hope that you will gain some satisfaction from this opportunity to inform us about your experience, knowing that your ideas will help to improve support services for those bereaved by epilepsy. Please be assured that your response will remain confidential. You will not be individually identified in the final summary which is published, or in any articles which refer to this research.
To participate in the survey click here
For further information about this study please email Dr Rosey Panelli or call 0438931120.This research project has been approved by the Flinders University Social and Behavioural Research Ethics Committee (Project number 5658). For more information regarding ethical approval of the project the Executive Officer of the Committee can be contacted by telephone on (08)8201 3116, by fax on (08)8201 2035 or by email human.researchethics@flinders.edu.au
Epilepsy Australia National Help Line 1300 852 8653
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