Rationale:
The self-management needs of Spanish-speaking adults with epilepsy are under-researched. To effectively address healthcare access, co-morbidity, and psychosocial adjustment to chronic illness/disability, more specialized interventions are needed. The Program for Active Consumer Engagement in Self-management (PACES) in Epilepsy is an 8-session group-based intervention that was evaluated in urban and rural settings with primarily white adult patients. RCT data of both in-person and telephone delivery showed immediate and longer-term (12-month) effects on epilepsy self-management and self-efficacy, and quality of life. Minimal self-management research to date has specifically focused on the epilepsy self-management needs and preferences of Spanish-speaking adults. This presentation details translation and focus group research aimed at program content, format elements, and presentation adaptations for this sub-population with epilepsy.
Method:
PACES was developed in a multi-phase, multi-method approach, via needs assessment surveys, focus groups, and RCT evaluation of an 8-week, professional and peer-lead, group-based program. PACES en español will evolve in 3 phases:
(1) Translation of core intervention documents (participant and facilitator manuals; outcomes measures);
(2) Teleconference focus groups (to accommodate Covid-19 restrictions) with Spanish-speaking adults to review PACES content and evaluate for linguistic and culturally relevant changes to information and program format. Final subject count is dependent on reaching content saturation;
(3) Translated content review by n=3 epilepsy professionals experienced with treating Spanish-speaking adults.
Hypothesis: Programmatic adaptations for Spanish-speaking adults with epilepsy will be distinct in content and process (e.g., family involvement, access to, and format of self-management groups). Results
•Materials translation:
•Written materials translated into Spanish and back-translated into English with discrepancies resolved by consensus panel of
•Spanish-speaking adults (2 health providers and 1 certified translator);
•Adjusted overall reading level from 8thgrade to 4th grade reading level as measured in MS Word to accommodate population heterogeneity related to compulsory education, nation(s) of origin, and socioeconomic status;
•Changed pictures to better represent Spanish-speaking patients with epilepsy.
• Focus group and content review data are pending and will be complete prior to presentation. Expect to present participant clinical and socioeconomic features, quantitative data related to program relevance, and programmatic adaptation data by thematic content.
Conclusion:
PACES requires adaptation unique to the cultural and linguistic needs of Spanish-speaking adults with epilepsy. The findings are significant for increasing access to culturally tailored interventions to improve epilepsy-related problem-solving, quality of life, and psychosocial adjustment in this unique population. Future directions involve implementing revisions of PACES en español and testing the adapted intervention in an RCT.
Funding:
:This poster is a product of a Health Promotion and Disease Prevention Research Center supported by Cooperative Agreement Number U48DP006398 from the Centers for Disease Control and Prevention.