Carers in Epilepsy: Quality of Life, Hidden Costs & Research - Dr. Florien Boele
Description
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
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🌐 More Epilepsy Sparks Insights 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights
🎧 Watch episode on YouTube 👇🏻
https://youtu.be/7F7N3TvnMjM
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https://www.epilepsysparks.com/glossary
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