What is this survey about?
Epilepsy Australia aims to explore the experiences and needs of people bereaved by epilepsy through the Reducing Epilepsy Deaths online research survey. 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.
What am I asked to do?
If you have lost a friend or family member to epilepsy, and you are aged over 18 years, you are invited to fill out this 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.
How do I complete this survey?
You can read through the questions before you enter any data if you wish. The only compulsory questions are at the end of the survey where we need to collect the name, gender and age of the person who has died, your date of birth and postcode. We do this to check that the information on the questionnaire only relates to real people.The information is only available to the researchers (Dr Michelle Bellon and Dr Rosey Panelli). ***Please remember to click on to the second page of the survey to complete all questions.
What do I do if I have questions about the survey?
Please try to answer all questions and, as you answer, just say what you feel is right for you. If you are not sure of an answer (such as an age or a date), just tell us what you can remember. If completing the survey should cause you upset or anxiety and you wish to talk to someone about this, please feel free to call the free Epilepsy Australia helpline (Tel.1300 852 853). Lifeline provides a 24 hour crisis service (Tel 13 1114). If you need more information about this study you can contact Dr Rosey Panelli on 0438 931 120 or email firstname.lastname@example.org. For information about the services of Epilepsy Australia in all states please visit (http://www.epilepsyaustralia.net/).
Thank you so much for participating in this survey. The final research report will be available to view on the Epilepsy Australia webpage in early 2013.