Exploring Conversations of Genetic Risk in Latino Families With Huntington’s Disease (HD)
Lina Shammas1, Mariann A. Tobar2, Adys Mendizabal1, Naghmeh Dorrani1, Michelle Fox1, Philip Sayegh1
1UCLA, 2UCLA, UCLA
Objective:

This qualitative study explores how Latino cultural values influence conversations about genetic risk in families impacted by HD.

Background:

 Huntington’s disease is a genetic neurodegenerative condition that presents communication challenges in families. Little is known about how Latino families communicate about HD and its genetic risk within their family.

Design/Methods:
Ten semi-structured interviews (6 English, 4 Spanish) were conducted with Latino families living with HD. Data was analyzed by Braun and Clarke’s reflexive thematic analysis.
Results:

Four interconnected themes emerged:(1) Gaps in Knowledge, (2) Silence, (3)Cultural Values, and (4) Acculturation. Limited access to HD-trained providers, language barriers and low health literacy widened knowledge gaps and hindered communication about genetic risk. In contrast, US born participants showed openness and acted as family educators. Additionally, access to genetic counseling, HD trained providers and HD resources helped decreased knowledge gaps.

Conclusions:

Findings highlight the role of cultural and systemic factors in genetic risk communication within Latino families. Expanding culturally competent care and HD education is crucial to improve communication and decision-making.

10.1212/WNL.0000000000216584
Disclaimer: Abstracts were not reviewed by Neurology® and do not reflect the views of Neurology® editors or staff.