Listen "Carers in Epilepsy: Quality of Life, Hidden Costs & Research - Dr. Florien Boele"
Episode Synopsis
How much do carers really contribute to epilepsy care, & why are their struggles so often invisible? 💜
Dr. Florien Boele, a researcher in psychosocial oncology & caregiving, talks about the essential but often overlooked role of unpaid carers for adults with epilepsy.
Florien talks with Torie about:
Who carers are
The staggering £184 billion value that carers add to the UK economy
The personal costs of caregiving - sleep, stress, health, finances & relationships
Why epilepsy research rarely includes carers (compared with other diseases)
The importance of measuring carer outcomes through core outcome sets
Florien’s study to define what truly matters most to carers
👉🏻 Tune in to hear how research is beginning to highlight carers’ voices & why supporting them means supporting people with epilepsy too.
🔗 More about episode 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/florien-boele-quality-of-life-carers-epilepsy
🤩 More about Florien 👇🏻
https://www.torierobinson.com/guests/florien-boele
👕 Join the Epilepsy Sparks community with our merch 👇🏻
https://epilepsy-sparks.creator-spring.com
🌐 More Epilepsy Sparks Insights 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights
🎧 Watch episode on YouTube 👇🏻
https://www.youtube.com/@EpilepsySparksInsights
🔤 Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻
https://www.epilepsysparks.com/glossary
📲 Connect with us 👇🏻
Website https://www.epilepsysparks.com
LinkedIn https://www.linkedin.com/company/epilepsy-sparks
Bluesky https://bsky.app/profile/epilepsysparks.bsky.social
Instagram https://www.instagram.com/epilepsysparks
Facebook https://www.facebook.com/epilepsysparks
TikTok https://www.tiktok.com/@epilepsysparks
Dr. Florien Boele, a researcher in psychosocial oncology & caregiving, talks about the essential but often overlooked role of unpaid carers for adults with epilepsy.
Florien talks with Torie about:
Who carers are
The staggering £184 billion value that carers add to the UK economy
The personal costs of caregiving - sleep, stress, health, finances & relationships
Why epilepsy research rarely includes carers (compared with other diseases)
The importance of measuring carer outcomes through core outcome sets
Florien’s study to define what truly matters most to carers
👉🏻 Tune in to hear how research is beginning to highlight carers’ voices & why supporting them means supporting people with epilepsy too.
🔗 More about episode 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/florien-boele-quality-of-life-carers-epilepsy
🤩 More about Florien 👇🏻
https://www.torierobinson.com/guests/florien-boele
👕 Join the Epilepsy Sparks community with our merch 👇🏻
https://epilepsy-sparks.creator-spring.com
🌐 More Epilepsy Sparks Insights 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights
🎧 Watch episode on YouTube 👇🏻
https://www.youtube.com/@EpilepsySparksInsights
🔤 Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻
https://www.epilepsysparks.com/glossary
📲 Connect with us 👇🏻
Website https://www.epilepsysparks.com
LinkedIn https://www.linkedin.com/company/epilepsy-sparks
Bluesky https://bsky.app/profile/epilepsysparks.bsky.social
Instagram https://www.instagram.com/epilepsysparks
Facebook https://www.facebook.com/epilepsysparks
TikTok https://www.tiktok.com/@epilepsysparks