Genetic counseling for adult-onset neurogenetic conditions in Hispanic/Latine communities: A qualitative study of barriers and facilitators from Hispanic/Latine genetic counselors' perspectives

Abstract

Hispanic/Latine (H/Le) individuals, despite being at higher risk for certain adult-onset neurological conditions (AONCs) compared to non-Hispanic white individuals, experience delays in accessing neurologic health services and are significantly underrepresented in clinical research for conditions such as Alzheimer's disease and Parkinson's disease. While existing studies have highlighted barriers to genetic health services for H/Le groups, there is limited research on their experiences with adult-onset conditions beyond cancer. This study aimed to explore the perspectives of H/Le genetic counselors on factors that influence adult neurogenetic counseling (NGC) access for H/Le individuals, and suggestions for expanding access as subject matter experts of both genetic counseling and their respective communities. Using a constructivist paradigm, semi-structured interviews were conducted with six H/Le genetic counselors who have counseled H/Le patients on non-cancer adult-onset conditions, followed by iterative coding of interview transcripts. Codes were grouped into six overarching themes: (1) Participants described familial and personal reasons for pursuing evaluation for AONCs; (2) Barriers to pursuing evaluations for AONCs include limited health literacy, family communication patterns, cultural beliefs, and systemic factors; (3) H/Le patients experience challenges communicating with healthcare providers due to language or cultural expectations; (4) Healthcare providers have limited knowledge about genetics and genetic counseling; (5) Finances influenced access to adult NGC for H/Le communities; and (6) Suggested strategies to increase access to adult NGC. The clinical implications addressed in this study may contribute to ongoing efforts toward improving neurologic health outcomes for H/Le adults.