P3A085: What Matters Most for Mental Health Decision-making: Outcomes of a Qualitative Community Needs Assessment Including Providers, Caregivers, and Youth with Epilepsy

Background: Youth with epilepsy (YWE) are 5 times more likely than their peers to develop anxious and depressive disorders during adolescence, but fewer than 20% follow up when provided a referral to social, psychiatric, or spiritual interventions. This trend persists even when supports are available and affordable. Research into the decisional factors influencing YWE, their carers/supporters (CSPs) and their healthcare providers is highly limited. During the process of developing a novel patient decision aid (PtDA), our study team conducted a rigorous, multiphasic needs assessment to determine which consultation strategies best support informed, effective decision-making in YWE regarding their mental health.

Methods: We adapted the Ottawa Research Institute’s Decision Support Framework (ODSF) to design a triple-armed, qualitative community needs assessment implemented over a period of 4 months. Inclusion and exclusion criteria for each group specified credentials, experience types, and/or medical history. Physicians and community experts, including local foundation leaders and public school educators, first participated in several 60-minute, semi-structured expert panels (n=13) to discuss their own decisional needs and the perceived needs of YWE and CSPs. YWE (n=10) and CSPs (n=15) participants were respectively separated into in-depth interview groups, facilitated by trained moderators in 60-90 minute sessions, after completing several surveys assessing participant demographics. All panels and interviews were recorded over Zoom and later manually transcribed by researchers. Content analysis was performed to identify key themes and decisional factors per the publicly available ODSF coding manual.

Results: Content analyses revealed several areas of disconnect between providers and YWE, CSPs regarding saliency and appropriateness of available prevention and/or treatment options. All three subgroups identified the potential of a novel decision aid to either mitigate or exacerbate the negative influence of stigma on decisional outcomes. A preference for medication as a first-line intervention also emerged across participants of all groups, contrary to the findings of prior research. Implementing empathic inquiry strategies over the entirety of a youth’s care may be particularly useful for pediatric providers counseling YWE and their CSPs. Conversations about mental health in adolescent populations may also best be framed as a long-term, relationship-oriented process with a reduced emphasis on traditional referral outcomes.

Conclusion: In light of today’s adolescent mental health crisis, it is more important than ever that pediatric providers are equipped to have culturally, developmentally, and medically tailored consultations with their youth patients. An effective PtDA has the potential to reduce decisional barriers to care for YWE and their CSPs reporting early signs of common mental health comorbidities. Future work should include a repeated community needs assessment process inclusive of non-English speaking YWE and CSPs, who are likely to have different needs and priorities than those identified here.