Authors :
Presenting Author: Meenal Khandaker, BA – Boston Medical Center
Paula Jurado, BA – Boston Medical Center; Madeline Niemann, BA – Boston Medical Center; Rinat Jonas, MA – Boston Medical Center, Boston University School of Medicine; Laurie Douglass, MD – Boston Medical Center, Boston University School of Medicine
Rationale:
Stigma is a major issue for people with epilepsy, but there is a lack of research on anti-stigma interventions for youth with epilepsy (YWE). An established study team from a large, urban safetynet hospital partnered with youth advocates to implement an Instagram campaign that utilizes the CDC framework of anti-stigma messaging and investigate its impact on YWE and other community members. We examined data from youth leaders and Instagram to identify engagement trends and lessons for other campaigns. Content was developed based on anti-stigma intervention strategies from the CDC framework. Pre-campaign data was collected between January and February 2023 and continuous engagement data collection began on February 13.
Methods:
Campaign Preparation:
Focus groups and in-depth interviews (IDIs) were conducted to receive feedback from YWE on campaign materials. Twelve participants (ages 13-26) were recruited by research assistant visits to pediatric neurology appointments and outreach to two YWE-led organizations. Participants completed surveys on their social media use, demographics, and digital health literacy. Inclusion criteria included an active epilepsy diagnosis for at least six months at the time of participation and leadership experience. Participants were compensated $75. Questions were designed using the CDC framework to see whether participants felt the anti-stigma strategies were successful. Interview transcripts were coded based on a system determined by three coders to identify trends.
Promotion:
Flyers were distributed in a pediatric neurology clinic and local colleges. Profile links were sent to epilepsy organizations. A youth ambassador program was created to involve YWE over age eighteen in creating content.
Engagement:
Metrics including likes are being collected from Instagram and stored in REDCap. Incentives such as polls are being implemented to receive user feedback and increase engagement.
Results:
Transcript coding revealed facilitators and barriers to successful anti-stigma messaging for each CDC strategy. The most common trend was a need for personal stories from YWE. Youth desired reliable sources to be provided but also expressed they believe everything they view on social media. We created thirty-two video and photo posts based on CDC anti-stigma strategies most relevant to social media and feedback.Conclusions:
Personal stories are important for resisting epilepsy-related stigma on social media as they provide support and diversity in experiences. Countering misinformation on social media is systemic; simply providing accurate information is insufficient.
Those who care for YWE could implement lessons from this project, such as providing content with personal stories of lived experiences to youth. To our knowledge, this is the first Instagram advocacy project used to study YWE’s reactions to the content produced. Future work should involve youth and caregivers without epilepsy to understand how our campaign could de-stigmatize epilepsy for those without lived experiences.
Funding:
Epilepsy Foundation of New England and Federal Health Resource and Services Administration’s Maternal and Child Health Bureau.