August 29, 2019

Epilepsy and the Family: Caregiver Stress and Sibling Experiences

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Seizures and their consequences affect every aspect of a caregiver’s world: their physical health, emotional health, psychological health, social relationships, education, employment, finances and futures. These multiple effects often result in stress and anxiety.

A 2019 study in Epilepsia Open examined seizure burden in young children and the effects on parents. The study concluded:

1. Seizure unpredictability is an important contributor to seizure burden.

2. Seizure unpredictability creates a constant state of impending or actual crisis.

3. Parents experience the long?term effects of their children’s seizures as a type of chronic traumatic stress disorder.

And yet, it’s still largely unacceptable for parents to acknowledge how stressful and exhausting it can be to care for, love and live with someone who has epilepsy.

“It’s hard for many parents to recognize or admit, because it can feel as though they are betraying their child by doing so,” said Devine. “If we can realize that we can love our children immensely and also recognize that parenting can be a traumatic experience due to their illness, that is the first step towards recovery and reclaiming health of body, mind, and spirit.”

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