Why Support Caregivers Of Those With A Developmental & Epileptic Encephalopathy? Eden Robertson, UNSW, Australia
Podcast:
Behavioural scientist Eden Robertson from UNSW, Australia, shares with us her work into improving the lives of caregivers of children with a Developmental & Epileptic Encephalopathy, with clear messages: the Developmental & Epileptic Encephalopathies awfully impact caregivers, who must be provided with education and support. This is part one of two with Eden.
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Intro to Eden
What are Developmental & Epileptic Encephalopathies?
Why do caregivers need support when it comes to DEEs?
How is support achieved?
The GenE Compass project
Common questions & guilt felt by caregivers
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Eden is a Behavioural Scientist & Post-doc Research Fellow at the University of New South Wales (UNSW) School of Clinical Medicine; leading the GenE Compass project as part of the CoGENeS team. She is a also a Research & Evaluation Manager at the Starlight Children’s Foundation and a Fulbright Future Scholar.
Eden has a Honours degree in Psychology, a Graduate Certificate in Adolescent and Young Adult Health and Wellbeing, and a Ph.D. in Medicine. She has spent several years training as a behavioural scientist, dedicated to improving the wellbeing of children and young people with a serious illness. Her main research activities focus on supporting caregivers and young people to understand complex medical information and make difficult treatment decisions.
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Twitter: eden_robertson
LinkedIn: linkedin.com/in/dr-eden-robertson
CoGENeS: cogenes-collaboration-genetic-epilepsy-neurogenetics
University: UNSW
Papers: ResearchGate
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