Date of Award

1-1-2013

Document Type

Open Access Thesis

Department

Genetic Counseling

First Advisor

Ruth Abramson

Abstract

Hereditary degenerative brain disorders (HDBDs) are a unique class of genetic conditions that result in progressive loss of function within the nervous system, many of which present during adulthood. Given this, the diagnosis of a HDBD can be daunting for both the patient and the genetic counselor assisting in medical care. The purpose of this study was to find themes among genetic counselors who see this patient population and help provide a framework to counselors entering this field by recognizing verified methods of HDBD counseling. Sixteen genetic counselors who routinely see patients at-risk for HDBDs were interviewed concerning how they prepared for and engaged with their patients, how they handled the complex emotions frequently associated with presymptomatic HDBD counseling, and how they perceived the stress levels and coping mechanisms of their patients. The results of this study showed that genetic counselors who see patients at-risk for HDBDs utilize agendas and/or protocols in preparing for and directing sessions. Additionally, these genetic counselors perceive their HDBD patients as capable of coping with their own presymptomatic testing results. There was not enough evidence from this study to determine if genetic counselors who see patients at risk for HDBDs are at any greater risk for compassion fatigue than other genetic counselors. Overall, the genetic counselors who see patients at risk for HDBDs are more similar to than different from genetic counselors who do not see this patient population. Given that a significant number of people are living at risk for HDBDs, experiences in case observation and counseling alongside expert HDBD counselors could benefit genetic counselors and the patients they serve.

Rights

© 2013, Stephen John White

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