Background Stigma is a major concern for youth with epilepsy (YWE), contributing to psychosocial difficulties, poor mental health outcomes, and reduced health-related quality of life. While several studies have described how stigma is measured, few have described interventions actively partnering with youth to address stigma at a population level. Social media is a potential tool to address stigma in public health. Objective An established study team from a large, urban hospital partnered with YWE advocates to implement an epilepsy-based Instagram campaign utilizing a public health framework of anti-stigma messaging. Methods A mixed-methods approach was used to collect data and included youth interviews and focus groups, Instagram engagement analytics, follower surveys, and an ambassadorship program. Using community-based participatory research principles, youth advocates with epilepsy co-designed an Instagram campaign guided by the matrix of anti-stigma messaging. YWE reviewed campaign materials and provided feedback, which the study team implemented into the creation of 36 posts, including educational materials and personal narratives. Engagement data was collected from Instagram from February-August 2023 to evaluate exposure and interest. Polls were given to campaign followers to receive feedback. Results The account had 36 posts and 142 followers and reached 5,452 accounts. We identified personal narratives as a key facilitator to reducing stigma on social media. Posts featuring personal stories from youth ambassadors received the highest interaction of all posts. However, it was found that use of anti-stigma strategies did not correlate to increased engagement. Conclusions Youth co-designed social media campaigns are feasible and may address epilepsy-related stigma by increasing contact, visibility, and accurate knowledge. Personal stories are important for resisting epilepsy-related stigma on social media. 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. We identified key strategies for developing a youth-centered anti-stigma social media campaign.
Khandaker et al. (Sun,) studied this question.