Navigating Discrimination Based on Unique Symptomology: A Qualitative Study of Caregivers' Perspectives on Huntington's Disease Patients' Experiences
Sydnee Leaver
Co-Presenters: Individual Presentation
College: College of Health Professions and Human Services
Major: MS.GENTICOUNSLNG
Faculty Research Mentor: Pervola, Josie
Abstract:
Title: Navigating Discrimination Based on Unique Symptomology: A Qualitative Study of Caregivers' Perspectives on Huntington's Disease Patients' ExperiencesAuthor: Sydnee Leaver, Department of Genetic Counseling, Kean UniversityAbstract:Huntington’s disease (HD) is a progressive, life-limiting neurodegenerative genetic disorder with autosomal dominant inheritance. While genetic discrimination affecting individuals with HD and those at-risk individuals has been well-documented, less is known about how the disease’s observable symptoms contribute to experiences of discrimination. Purpose: This study aims to identify areas of discrimination felt by those with a diagnosis of Huntington’s disease through the lens and experiences of their caregivers. Methods: Semi-structured virtual interviews were conducted with seven Huntington’s disease caregivers. Interviews explored caregiver-observed discrimination across multiple domains, including law enforcement, the general public, healthcare, employment, and insurance. Participants were also asked to identify strategies that could reduce discrimination and improve support from genetic counselors and other healthcare professionals. Interviews were thematically analyzed using ATLAS.ti . Results: Caregivers identified chorea as the most prominent physical symptom contributing to discrimination (86%), followed by speech abnormalities such as the slurring of speech (71%). Discrimination was most frequently observed in interactions with law enforcement (86%), strangers or the general public (71%), and insurance companies (57%). All seven respondents shared helpful tips, such as advocating for their loved ones to reduce discrimination but agreed that more needs to be done to reduce the stigma around Huntington’s disease and the symptoms that may be observed due to the condition. Conclusion: These findings provide updated insight into symptom-related discrimination experienced by individuals with HD in the United States and highlight the need for increased awareness among healthcare providers and families, particularly regarding interactions with law enforcement and the general public. This knowledge may inform anticipatory guidance and supportive counseling strategies, enabling providers and caregivers to better prepare and advocate for individuals with HD throughout the disease trajectory.Keywords: Genetic counseling, Huntington’s disease, healthcare, discrimination