The Shared Experiences and Thoughts of People Living with Epilepsy

The Shared Experiences and Thoughts of People Living with Epilepsy

The Shared Experiences and Thoughts of People Living with Epilepsy

Part of my job on the Personalized Internet-Assisted Underserved Self-management of Epilepsy (PAUSE) study is to lead weekly one-on-one video calls with participants. These video calls provide a unique opportunity for participants to share stories about living with epilepsy.

During a recent poster session at the American Epilepsy Society (AES) 2016 Annual meeting, I focused on experiences of people with epilepsy and shared negative and positive quotes that participants shared during their first video call. This information helped the PAUSE study team identify issues that needed to be addressed by healthcare providers and caregivers, and problems that needed to be targeted through self-management education.

I noticed two themes throughout the PAUSE video calls. The first was that participants disliked using the word “seizure”, replacing it with terms like “event”, “episode”, or “not feeling well”. The second theme I noticed was that most participants were thankful for the opportunity to talk to someone who listened and asked questions about their epilepsy. “Thank you for listening to me,” said one participant, “it makes me happier.”

There were other topics that came up frequently during the video calls. For example, many PAUSE participants chose to talk about relationships. They shared stories about their relationships with family members, friends, coworkers, classmates, and significant others. Some stories were positive and encouraging, while others were negative and visibly upsetting for the study’s subjects. Several participants were afraid to talk to their loved ones about their epilepsy. Others shared more positive thoughts during their video calls, perhaps because they had a stronger understanding of seizures and how to apply epilepsy self-management skills.

Several participants talked about their positive experiences with transportation. Transportation can be difficult and stressful for people with epilepsy, so hearing participants overcame something that was so often seen as a challenge was inspiring.

Despite some PAUSE participants focusing on the problems they faced during their first few video calls, many began  talking more about their progress, what they’ve learned, and new self-management skills and tools that they’ve used while advancing through the study. This is exactly the type of development that we hoped to see through PAUSE. Ultimately, our goal is for PAUSE participants to feel confident managing their epilepsy so they can improve their quality of life and have more positive experiences, thoughts, and relationships.

About the image. The Managing Epilepsy Well (MEW) Network during their meeting at the AES 2016 Annual Meeting.

ABOUT THE AUTHOR

When Nadia Nabulsi isn’t working on PAUSE or studying for her Master’s in Public Health degree, she enjoys participating in group fitness classes, taking salsa and bachata lessons, playing the piano, painting, volunteering with child mentorship programs, and exploring Chicago!

PAUSE research assistant, Nadia Nabulsi, presenting her research poster, entitled “Common self-management challenges and positive versus negative thoughts in people with epilepsy”, at the AES 2016 Annual Meeting