Epilepsy Sparks Insights

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

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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
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      Epilepsy Sparks InsightsBy Torie Robinson
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