Deaf Individuals' Attitudes and Perceptions of Genetic Counseling and Genetic Testing

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dc.contributor.advisor Schneider, Gretchen Howell, Julie 2019-05-24T17:27:39Z 2019-05-24T17:27:39Z 2019
dc.description.abstract Deaf Americans face linguistic and cultural barriers around access to public services and medical care, including genetic counseling and genetic testing. Healthcare providers’ cultural competency and communication accommodation for Deaf patients directly impact patient care; however, most providers have little knowledge of how to interact with this population. As genetic testing increasingly becomes part of routine clinical care, more Deaf individuals will be referred for genetic counseling. To provide quality care, it is essential for genetic counselors to understand Deaf patients' perspectives. The purpose of this qualitative study was to document attitudes and opinions of Deaf individuals regarding genetic counseling and genetic testing. Six semi-structured interviews were completed with culturally Deaf adults who primarily use American Sign Language (ASL) to explore personal experiences with medicine and genetics, opinions on genetic testing in different scenarios, and suggestions for providers. Interviews were coded based on emergent themes and analyzed with an inductive approach. Identified themes included: personal experiences influence perception of all providers; participants have low expectations for providers and value provider familiarity with Deaf patients; participants had more exposure to non-medical genetic concepts than medical genetic testing; and Deaf individuals support the availability of genetic testing for all. Participant recommendations included: accommodate for preferred communication methods by using interpreters and simplifying jargon; respect patient choices by presenting options without bias; and be open minded to Deaf culture by acknowledging the cultural model of deafness and advocating for positive change within the medical community. This study supports and adds nuance to prior research, emphasizing the importance of cultural competency and communication accommodation for genetic counselors working with Deaf patients. Continued efforts to understand Deaf culture and perspectives are essential to improve relationships with and provide quality healthcare to this population.
dc.format.mimetype application/pdf
dc.language English
dc.language.iso eng
dc.publisher Brandeis University
dc.relation.ispartofseries Brandeis University Theses and Dissertations
dc.rights Copyright by Julie Howell 2019
dc.subject Deaf Awareness
dc.subject Cultural Competency
dc.subject Genetic Counseling
dc.subject Genetic Testing
dc.subject American Sign Language
dc.subject Deaf Culture
dc.subject Carrier Screening
dc.title Deaf Individuals' Attitudes and Perceptions of Genetic Counseling and Genetic Testing
dc.type Thesis
dc.contributor.department Graduate Program in Genetic Counseling MS Masters Genetic Counseling Brandeis University, Graduate School of Arts and Sciences
dc.description.esploro 2

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