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S. Pembroke, A. Higgins, N.Pender, N. Elliott. Epilepsy & Behavior 2017; 70: 217-23.

Purpose

Receiving a diagnosis of epilepsy, a complex chronic disease with a spectrum of impact, can be a life-changing experience, and the full effect of a diagnosis of epilepsy is realized over time.

The objective of the study was to explore how people with epilepsy reach a stage of being comfortable with their diagnosis. The process of coming to accept a diagnosis is important in a person’s ability to develop effective self-management.

Description of Study

This was a qualitative study that examined people’s perceptions and lived experiences about their epilepsy.

  • 49 adults with epilepsy who reported feeling comfortable with their epilepsy were part of the study.
  • Data was collected using one-to-one interviews to get in-depth personal accounts of their experience in adjusting to their diagnosis of epilepsy.

Information from the interviews was reviewed and analyzed by two researchers to ensure the findings were verified and validated.

Summary of Study Findings

Three key categories emerged from this study that best demonstrated the journey people experience after receiving a diagnosis of epilepsy.

  • Meaning of “my” epilepsy diagnosis
  • Useful strategies used to become comfortable with diagnosis
  • Accepting and being comfortable with “my” epilepsy

What does this mean?

  • This study demonstrates that a person dealing with a new diagnosis of epilepsy goes through three stages to come to terms with their epilepsy.
    • The first stage allows them to process feelings, reactions, and concerns they have when first diagnosed.
    • The second stage identifies the strategies people use to help them become comfortable with their diagnosis.
    • The third stage of the journey accounts for the frame of mind people with epilepsy reach once they accept their diagnosis.
  • This study is important in providing a way to think about the individual personal experiences people go through after receiving a diagnosis of epilepsy. A number of strategies useful in helping one accept their epilepsy are highlighted.
  • Studies that look at the measure of resilience have identified being comfortable with one’s diagnosis of epilepsy is an important way of improving quality of life.
  • This study is helpful for healthcare professionals and family members to recognize that a new diagnosis of epilepsy is a journey – not a one step process. There will be separate stages people may go through in coming to terms with their epilepsy, accepting the diagnosis, and finding comfort to disclose their diagnosis.
  • Providing resources (education, support groups, ways of sharing experiences, and practice telling someone about the diagnosis) to people with newly diagnosed epilepsy is important.

Article published in Epilepsy & Behavior, May 2017

Authored By: 
Elaine Kiriakopoulos MD, MSc
Authored Date: 
06/2017
Reviewed By: 
Patty Obsorne Shafer RN, MN
on: 
Sunday, July 30, 2017