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Experiences of Epilepsy Bereavement during Coronavirus/COVID-19
Introduction and Consent
Procedure Participating in this research involves completing a questionnaire that is split into three main sections: - General Information - Well-being - Experiences during the COVID-19/Coronavirus pandemic
The questionnaire includes multiple-choice and free-text response formats and completing the questionnaire should take no more than 15-20 minutes. If you need additional assistance to participate in this research for any reason (including completing a version of the questionnaire by phone), please contact the Epilepsy Deaths Register (EDR) Team at team@epilepsydeathsregister.org.
Benefits and Risks Benefits of participation include the knowledge that your anonymised data will be used to further understand the impact of COVID-19/coronavirus on people affected by epilepsy-related death. The research will also help us inform governments and other decision-makers so they can begin to understand better the true burden of SUDEP and epilepsy mortality. It is important for this impact that we hear from people bereaved many years ago as well as people who are recently bereaved.
Questions in this questionnaire are, necessarily, quite sensitive in nature as they relate to your experiences of bereavement following someone’s death. If you do not wish to provide a response to any question, please leave it blank and move on to the next question. For more information about support services or to speak to someone, please email us at team@epilepsydeathsregister.org or call our support line between the hours of 8:30-16:00 (Mon-Thurs) on 0330 088 1220 (UK local rate call).
Confidentiality All information collected through this questionnaire is anonymised and no identifiable information will be used in any reports produced. You may withdraw your data at any time whether partially-completed or at any time after completing the questionnaire in full. Any of your data which has already been analysed and used in study publications cannot be removed but will not be included in any future publications. Please contact the EDR team at team@epilepsydeathsregister.org if you wish to have your data withdrawn and this will be actioned without question.
