Abstracts

Rationale: Hispanic adults with epilepsy are known to experience health disparities (e.g., less insurance coverage, experience greater risk for depression, and receive fewer ASMs and antidepressant medications) (Nathan, 2018). The Program for Active Consumer Engagement in Self-management (PACES) in Epilepsy is a consumer generated epilepsy self-management (ESM) program that reduces depression and improves self-management, self-efficacy, and quality of life in adults, including monolingual Spanish speakers (Johnson, 2020; Smith, 2023). Adolescents with epilepsy (AWE) are a vulnerable population, given the normative and disease-related developmental difficulties that can arise during this period. Hispanic, bilingual AWE and their monolingual parents (dubbed “Generations 1.5 and 2.0”) have not been studied specifically and may be at even greater risk for health disparities. This study aims to understand this unique subgroup’s perspectives in order to adapt culturally informed ESM.


Methods: Telehealth-based, prospective focus group research separately with (a) bilingual AWE aged 14-15; (b) bilingual AWE aged 16-18; and (c) predominantly (75%) monolingual parents of AWE aged 14-18). Participants were verbally posed 7-11 open-ended questions by bilingual research staff to elicit qualitative data as to epilepsy-related life problems; epilepsy learning needs; and self-management program structure and design preferences. AWE were queried specifically as to the impact of care from providers who do not speak their primary language. Groups were conducted consecutively until content saturation was reached (n=6 groups). Thematic content analysis of qualitative data was conducted to examine the experience of Spanish speaking AWE and their parents.


Results: AWE across age cohorts described (1) role burden due to cultural and linguistic barriers in the healthcare environment; (2) disparities in effective communication and access to resources from the same; (3) intersectionality (e.g., experiences influenced by both SES and varying levels of acculturation); (4) disparities related to varying acculturation; (5) resilience and positive disability identity (e.g., seeing aspects of their epilepsy and related experiences as sources of personal growth and emotional adjustment; (6) religion and spirituality (e.g., invoking faith to understand their epilepsy and cope with uncontrollable events); and (7) positive emotion (hope, optimism, and gratitude). Parents emphasized ESM programming in the community where it is more linguistically accessible.


Conclusions: The findings of this study illuminated the experiences of generation 1.5/2.0, and their predominantly monolingual parents. The themes identified reveal the risk for inequitable healthcare and social access, which can be addressed in ESM program development (e.g., PACES sessions focused on assertive communication, care management, and community resources). Further research is required with this subpopulation to improve culturally informed therapies.


Funding: Health Promotion and Disease Prevention Research Center supported by Cooperative Agreement Number U48DP006398 from the Centers for Disease Control and Prevention.