By F. Saada, Z. S. Wang, R.E.D Bautista. Epilepsy & Behavior 50(2015): 10-13

Much is known about how epilepsy affects individuals; however, our knowledge about the impact of epilepsy on families is lacking.

Purpose

A new study published in Epilepsy & Behavior looks at how epilepsy in an adult may influence family members. Examples of how epilepsy affected family members’ psychological and social well-being, satisfaction with their social situations, and perceived level of support were examined.

Description of Study

A review of published literature found 17 articles that addressed some aspect of quality of life of family members of adult people with epilepsy.

Summary of Study Findings

  • Negative aspects of epilepsy that affect people with seizures can also affect family members. One study of 44 families found that stress and dissatisfaction with social situations was a big concern for people considered primary caregivers. Poor emotional adjustment of caregivers also correlated with severity of epilepsy in many people.
  • Caregivers and parents often lack accurate information about epilepsy that can affect their attitudes. Negative attitudes and stigma of epilepsy among family members could contribute to problems for people with epilepsy.
  • The unpredictability of epilepsy affects families in many ways, such as planning family activities. Over-protectiveness by family members can also have negative effects on the person with epilepsy.
  • Worry, fear, and helplessness were identified by many siblings of adults with epilepsy.
  • Marital relationships have important influences. One study found that people with active epilepsy (uncontrolled seizures) had more marital problems than people with controlled seizures. Yet another study found marital stress higher in people with epilepsy overall.
  • Marriage also has positive influences for people with epilepsy and adds to social support and quality of life.
  • Epilepsy in an adult can yield positive influences, for example, increased support and closeness among family members and adapting to support each other.
  • Practices that can improve quality of life for people with epilepsy and their families may include:
    • Maximizing family involvement
    • Education of people with epilepsy and families to enhance accurate understanding and reduce stigma
    • Family support groups
    • Emotional and medical help to individual family members

What does this mean?

Caring for adults with epilepsy must include assessment, as well as care of family members and other caregivers. Living with epilepsy is a family affair that will affect people differently depending on their age, role, and the severity of epilepsy. Developing family coping skills and identifying needs early can mean faster intervention and can improve the quality of life for both the individual with epilepsy and their loved ones.

Abstract: September 2015

Article Published in Epilepsy & Behavior, September 2015

Authored By: 
Patty Obsorne Shafer RN, MN
Authored Date: 
09/2015