How Do We Understand The Researchers - And the Patients?! - Georgia Cook, Oxford Brookes University, UK
Research Fellow Georgia Cook chats about the importance of effective communication between researchers and lay-people in epilepsy research - using the CASTLE study as a great example! She speaks of how the way that patients and families think and prioritise can be different to that of researchers, the vicious cycle between sleep disruption and epileptic seizures, the impacts of COVID upon the study, and why clinicians - neurologists, epileptologists, and epilepsy nurses - must pay attention to sleep in PWE! This is part 1 of 2 with Georgia.
Reported by Torie Robinson | Edited and produced by Carrot Cruncher Media.
Podcast
-
Georgia Cook is a Chartered Psychologist and with over a decade of research experience in helping people snooze better!
Based at the Oxford Institute of Applied Health Research at Oxford Brookes University, Georgia’s work focuses on assessing understanding and treating sleep problems, with a special interest in the sleep of children and families. Her research isn’t just about understanding sleep and supporting people to sleep better it’s about creating real-world solutions to improve health and well-being. She’s all about designing, testing, and rolling out practical interventions. Today she is going to be talking the result of a trial which aimed to ‘Unlock Better Sleep for Children with Epilepsy and their Parents’. Specifically the impact of a newly developed online behavioural which sought to support and improve sleep and a range of other health and wellbeing outcomes in children with epilepsy and their parents.
-
LinkedIn: georgiacook
Castle Study: georgia-cook
Oxford Brookes georgia-cook
ResearchGate: Georgia-Cook-4
-
Main trial paper/outcomes – currently being written up – coming soon!
Survey of healthcare professionals about the topics children and young people with epilepsy and their parents raise in clinical consultations (including sleep): https://www.epilepsybehavior.com/article/S1525-5050(23)00462-6/fulltext
Qualitative interview study about parents experiences of the types of sleep problems their child with epilepsy has experienced, approaches to managing sleep in their child and the lack of help and support available to support families of children with epilepsy around sleep https://onlinelibrary.wiley.com/doi/10.1111/hex.13694
Two papers reporting the findings from interviews with parents about what they would want from an online behavioural sleep intervention and the development of the final intervention (COSI, Castle Online Sleep Intervention): https://www.frontiersin.org/journals/psychology/articles/10.3389/fpsyg.2021.628605/full, and; https://www.frontiersin.org/journals/psychology/articles/10.3389/fpsyg.2021.679804/full