Abstracts

Rationale: Although the role of positive coping has been looked at with regard to both youth and illness; rarely has it been discussed regarding potential effects on chronic disease management and long term outcomes. It is worthwhile to examine the possibility that Posttraumatic Growth (PTG) may be helpful in mitigating potential stressors for youth living with Epilepsy and also may improve more specific developmental goals such as problem solving, self-regulation and executive functioning capabilities in youth that feel supported during adolescence. PTG may increase sense of autonomy which could be helpful in facilitating positive transition experiences for youth living with Epilepsy.  This concept may be used as a framework for youth to use positive coping as chronic disease management. Methods: Youth (24) ages 13-24 with Epilepsy, and parents (25) recruited from clinical and community organizations participated in one of nine focus groups (5 youth, 4 parent groups) in 2015-16. Focus groups were conducted to identify youth-reported challenges and facilitators to living with Epilepsy and being healthy. Despite the original purpose, participants cited positive or growth experiences specifically attributed to their Epilepsy. The focus groups were recorded and transcribed. Two authors independently identified and then reconciled growth experience comments and categorized into one of five PTG theory-based areas- 1) New Opportunities 2) Change in Relationships 3) Increased Self-Strength 4) Greater Appreciation for Life and 5) Spiritual or Religious Domain. Only the first three categories were included in analysis due to low incidence in the last two. Results: Researchers identified 43 unique expressions of personal growth in youth and parent transcripts. The most common PTG domain was Change in Relationships. Youth focus groups yielded 14 mentions and parent focus groups yielded 2 mentions of relationship growth. A youth stated “[Epilepsy] has made our family closer...” A parent echoed the sentiment- “you have to almost be all together in that because you need each other… so it brings the family together.” The second most common domain was Increased Self-Strength. Youth yielded 18 mentions and parent groups yielded 1. A youth reported “[Epilepsy] made me a much more responsible person overall than what I probably would be right now...”. A parent responded similarly. The final domain indicated was New Opportunities. Youth yielded 7 mentions and parent groups yielded none. One youth reported “Epilepsy made me more interested in neurology...knowing how much we don’t know about Epilepsy..the brain...it really steered my academic goals.” Conclusions: Despite facing challenges, youth growing up with Epilepsy and their families report positive growth experiences because of their Epilepsy. Using Posttraumatic Growth (PTG) has potential to improve long-term chronic disease management and outcomes for youth with Epilepsy. More research is required to understand additional implications of this framework. Funding: This work is supported by Cooperative Agreement Number 1U48DP005022-01 from the Centers for Disease Control and Prevention.