Expanding PACES: Comparing the Perspectives of Bilingual Teens with Epilepsy
Abstract number :
2.058
Submission category :
13. Health Services (Delivery of Care, Access to Care, Health Care Models)
Year :
2024
Submission ID :
631
Source :
www.aesnet.org
Presentation date :
12/8/2024 12:00:00 AM
Published date :
Authors :
Presenting Author: Beck Reyes, CPNP, CNRN – University of California Los Angeles
Mary Grace Asirot, MPH – University of Washington
Edward Novotny, MD – University of Washington School of Medicine
Erica Johnson, PhD, FAES, CRC – University of Washington
Rationale: The Program for Active Consumer Engagement in Self-management (PACES) in Epilepsy is a consumer generated epilepsy self-management (ESM) program shown to reduce depression and improve self-management, self-efficacy, and quality of life in adults (Johnson et al., 2020). PACES was adapted for the needs of vulnerable sub-populations such as veterans and Spanish speakers but has not been adapted for adolescents (AWE), who have unique needs and perspectives (Mooney et al, 2018). Although ESM programs are developed for Spanish-speaking adults, the needs and preferences of Hispanic teens have not been characterized (Smith et al., 2020). The purpose of this study was to examine the ESM needs of AWE and their parents/caregivers emphasizing Hispanic-only groups for cultural consideration.
Methods: Prospective focus group research with (a) AWE aged 14-15; (b) AWE aged 16-18; and (c) parents of AWE aged 14-18). Participants were posed 7-11 open-ended questions to solicit qualitative data as to epilepsy-related life problems; epilepsy learning needs; and self-management program structure and design preferences. Bilingual (Spanish-English) participants were queried specifically as to the impact of care from providers who did not speak their primary language. Groups conducted consecutively until content saturation reached (n=6 groups).
Results: Adolescents aged 14-15 (n=10) indicate problems driving and independence; safety; impact of level of participation (school, sports, extracurricular activities); medication management; and stress. Adolescents aged 16-18 (n=16) indicate problems with seizure management and medication side effects; cognition; mental health; social/interpersonal relationships; education/school; future planning; and hobbies/leisure activities. They would like a peer-based group offered by a medical center or community stakeholders. This program would be led by an epilepsy professional and trained young adult peer with epilepsy who meet periodically in-person or virtually. Topics they would like addressed are education on epilepsy; how to plan for the future; medication and side effects; and how to manage stress and emotions. Themes were not different between cohorts (predominantly Caucasian vs sole bilingual first generation Hispanics).
Conclusions: Adolescents in different age cohorts express different self-management needs, aligning with a developmental perspective. Hispanic teens acknowledge the impact of healthcare disparities but do not differ in terms of program content priorities. Results of this study have been used to inform the “Teen PACES” program. Content has been modified for developmental appropriateness relative to the adult program; information volume has been reduced and problem-solving training added; a parent guide has been developed to reinforce skill development between sessions. The intervention, to be tested by randomized controlled trial, aims to elucidate the impact of PACES on adolescents with epilepsy.
Funding: Health Promotion and Disease Prevention Research Center supported by Cooperative Agreement Number U48DP006398 from the Centers for Disease Control and Prevention.
Health Services (Delivery of Care, Access to Care, Health Care Models)