Date of Award

Spring 2019

Document Type

Open Access Thesis

Department

Genetic Counseling

First Advisor

Janice Edwards

Abstract

The Amish are a population with a high concentration of genetic disorders who have informed our understanding of several genetic conditions. This culturally unique group has special need for genetic services. While clinics have been established to care for Amish individuals, such as the Community Health Clinic in Indiana, little research has been done on Amish perspectives of these services, specifically genetic counseling. Amish individuals who received genetic counseling from the Community Health Clinic were sent recruitment letters and a questionnaire via mail. The questionnaire consisted of demographic questions, a 7-item adapted Genetic Counseling Satisfaction Scale (GCSS), and open-response questions. Thirty-three individuals completed the questionnaire. The majority of participants were aware they were receiving genetic counseling (81.8%), and most participants received genetic counseling from a genetic counselor (54.5%) versus a geneticist (39.4%). The mean satisfaction scores for each 5-point Likert-scale question showed that overall, participants were satisfied with their experience with genetic counseling, with mean scores ranging from 4.58 to 4.77. Descriptive and univariate statistics showed some statistically significant differences in satisfaction when comparing males versus females, referral type, and whether the participant saw a genetic counselor or a geneticist. Open-ended responses also showed that participants were satisfied with their genetic counseling. These responses centered around three themes: rapport-building aspects of the session, cultural appropriateness of the session, and the impact of the session on medical decision-making. In this first study to explore Amish perceptions of a genetics clinic tailored to their particular way of life, we found that the Amish served by the Community Health Clinic felt respected, that their care was culturally sensitive, and they were satisfied with the genetic services they received.

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