Abstracts

Rationale: Healthcare transition is a significant public health concern for youth with epilepsy (YWE) due to gaps in medical care, low social support, and underdeveloped self-management skills. These issues correlate with poor treatment adherence, increased seizure risks, and diminished overall well-being. A successful transition program for YWE should foster self-care skills and hope for the future, which are essential for managing a chronic condition effectively. However, constraints on healthcare providers and YWE alike make it difficult to develop synchronous skill-development programs. To address this, a large safety net hospital team developed "Empowerment Together," an asynchronous online Transition program on the social media platform Mighty Networks. Based on feedback from a patient community needs assessment, the 8-week program features wellness themes that incorporate pop culture references and humor to engage youth. It aims to enhance self-management skills through the program's use of social-emotional learning theory putting emphasis on self-awareness, building relationships, and effective communication. This pilot study evaluated the effectiveness of the "Empowerment Together" program in improving self-care skills and overall well-being among YWE.


Methods: Seven YWE participated in the 8-week intervention. Staff and volunteer moderators solicited weekly engagement and provided support through direct messaging. The frequency of site visits, clicks, likes, and comments of all participants was collected weekly. Pre and post-intervention scores on the Esteem/Emotional and Informational categories of the Online Social Support Survey, the Hopeful Future Expectations Survey, and the Child Neurology Foundation Safe-Care Assessment (CNF) were collected and analyzed using ANOVA F-tests.


Results: The pilot intervention yielded encouraging results, as depicted in Figure 1. Emotional Esteem and Informational Support scores increased pre/post intervention, indicating a positive shift towards transition readiness. Healthy Future Expectations showed a notable rise in safety scores, although not statistically significant. Particularly noteworthy was the statistically significant improvement in responses to the question, 'How CONFIDENT do you feel about your ability to care for your own health?' from the CNF survey.


Conclusions: The statistically significant improvement in health confidence, particularly in self-care abilities, highlights the “Empowerment Together” program's possible effectiveness in enhancing self-efficacy during the healthcare transition for YWE. These findings indicate that online communities may be able to effectively support individuals with similar conditions, enhancing their perceived support, well-being, and confidence in transitioning successfully. Future transition programs should consider incorporating some synchronous activities to potentially increase engagement.


Funding: Grant funding provided by the Health Resource and Services Administration’s Maternal and Child Health Bureau.