Carers in Epilepsy: Quality of Life, Hidden Costs & Research - Dr. Florien Boele

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 👇🏻 Dr. Florien Boele | Family caregiving, quality of life, & the epilepsies — Torie Robinson   👕 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://youtu.be/7F7N3TvnMjM    🔤 Learn key terms related to the epilepsies and neuroscience here 👇🏻 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

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