Date of Award

6-30-2016

Document Type

Open Access Thesis

Department

Health Services and Policy Management

Sub-Department

School of Medicine

First Advisor

Emily Jordon

Abstract

Patients seen in genetics clinics often endure a diagnostic odyssey in their search for answers for their medical symptoms. This time is not only challenging for patients and their families, but also for the genetic counselors who are trying to help the patients. Previous research has shown that parents of children with undiagnosed medical disorders have specific goals and reasons for wanting to find a diagnosis, and there are many difficulties faced by these parents. Genetic counselors often serve as a prominent figure during the diagnostic odyssey, but little known research has assessed the current practices of and impact that the diagnostic odyssey has on genetic counselors. This study surveyed pediatric genetic counselors to assess their current practices and thoughts about the diagnostic odyssey. This was assessed utilizing a questionnaire, which included both multiple choice and short answer questions. We identified current genetic counseling practices including communication methods and resources provided to patients. Counselors reported a possible need to share the responsibility of communication with their patients and a lack of resources specific to patients on the diagnostic odyssey. Genetic counselors also reported feeling personally impacted by patients on the diagnostic odyssey, and described the positive and negative feelings they experience, in addition to strategies to cope with their frustrations. In conclusion, the diagnostic odyssey is a complex process for patients, and similarly challenging for the counselors who are involved in the patients’ care. Genetic counselors have an opportunity to provide additional support, resources, and hope to families during the diagnostic odyssey, although these roles may not be strictly defined in the counselors’ responsibilities.

Rights

© 2016, Amelia Cordell Wardyn

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