Date of Award

2015

Document Type

Open Access Thesis

Department

Genetic Counseling

First Advisor

Janice Edwards

Abstract

The proposed Reciprocal-Engagement Model of genetic counseling is comprised of five core tenets with the relationship between the genetic counselor and patient being central to the process and success of genetic counseling. This study sought to explore the relationship between the genetic counselor and patient during and after a prenatal diagnosis of a “life-limiting” diagnosis that resulted in a major loss (termination, stillbirth/miscarriage, or neonatal death). Eight genetic counselor and patient pairs were individually/separately interviewed about their mutual relationship and asked about the development and maintenance of the relationship, the contributing factors, and the long-term effects on both the genetic counselor and patient. The length of these relationships ranged from four months to fourteen years following their initiation. All clinical relationships established required extensive follow-up via multiple modes of communication with more frequent communication in the beginning and less as the relationship evolved with more equal initiation of communication over time. The content of conversation expanded to include more personal elements from both the genetic counselor and the patient perspectives. Most participant pairs fell somewhere on a spectrum of professional relationship to deeply personal relationship as one pair maintained an exclusively personal relationship. The support offered by the genetic counselor during the time of crisis was both essential and unique to the patient compared to other healthcare providers and family/friends. Strategies employed and/or characteristics of the genetic counselor and patient did contribute to the development and vi maintenance of the relationship as did the life-limiting nature of the diagnosis, which was thought to overall strengthen the connection. The long-term effects on participants reveal clinical implications for genetic counseling. This exploratory study highlights the unique service of support offered by genetic counselors, as well as potential avenues for future research and training implications.

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