The Psychosocial Implications of Hereditary Diffuse Gastric Cancer

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dc.contributor.advisor Tsipis, Judith Beaston-Casey, Marcina 2014-05-19T15:12:05Z 2014-05-19T15:12:05Z 2014
dc.description.abstract The unique journey families face with hereditary cancers warrants investigation as it impacts quality of life and survival in ways that are different from experiences in families with sporadic cancer. With hereditary diffuse gastric cancer (HDGC), this stems from the discovery of a mutation known to predispose to gastric cancer as well as the prophylactic total gastrectomy (TG) necessary to reduce risk. Few studies have looked at the psychosocial ramifications of the identification of a hereditary predisposition for gastric cancer in a family and the necessary prophylactic surgery that follows. The purpose of this qualitative study was to explore the psychosocial journey facing families with members found to carry the mutation known to cause a predisposition for HDGC. Eighty-four individuals completed a survey, offering advice for those stepping into the experience and for the professionals guiding them. We used qualitative content analysis to interpret responses to five open ended questions. From the 84 survey respondents, the following should be considered in the guidance of individuals and families facing the experience of HDGC: (1) Physicians need to be better educated about the physical and emotional aspects of dealing with HDGC. (2) Dieticians need information about the unique dietary requirements associated with TG. (3) Genetic counselors should be prepared to educate and provide resources for entire families, including those individuals who are not at risk. This study shows those dealing with HDGC are in need of help from the medical community, including genetic counselors. This highly motivated group is eager to educate and share their experiences with others. The implications for genetic counseling services and also for pre and post surgical services for those facing a TG will be discussed.
dc.description.sponsorship Brandeis University, Graduate School of Arts and Sciences
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 Marcina Beaston-Casey 2014
dc.subject hereditary diffuse gastric cancer
dc.subject psychosocial implications
dc.subject total gastrectomy
dc.title The Psychosocial Implications of Hereditary Diffuse Gastric Cancer
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 yes

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