2.50
Hdl Handle:
http://hdl.handle.net/10755/162127
Category:
Abstract
Type:
Presentation
Title:
Living with presymptomatic genetic test results
Author(s):
Hamilton, Rebekah J.
Author Details:
Rebekah J. Hamilton, PhD, RN, University of Pittsburgh, Pittsburgh, Pennsylvania, USA, email: hamilr@pitt.edu
Abstract:
Purpose: To describe the experience of living with presymptomatic genetic test results for the Huntington disease mutation and the BRCA1/2 mutations over time and to develop a substantive mid-range theory of decision making after genetic testing. Background: Presymptomatic genetic testing has been available for around two decades. However, there are few longitudinal studies that are aimed at increasing understanding of how individuals live with this knowledge. Individuals at risk for Huntington disease (HD) and hereditary breast and ovarian cancer (HBOC) were re-interviewed at approximately 2.5-3 years from the time of the initial interview. Questions were asked about their health, health care choices, consequences of choices previously made and family interaction. Methods (Design, Participants, Setting, Data Collection, Analytic approach): This longitudinal study used grounded theory to plan, guide and analyze in-depth interviews with 21 individuals representing a 72% return participation after approximately 2.5-3 year interval. The final sample in this phase of the study included 14 participants who were at risk for HBOC and seven who were at risk for HD. Results: The mid-range grounded theory developed is called: "The theory of knowing about and living with genetic vulnerability" and is composed of five concepts: (a) Experiencing the family disease, (b) Testing for a mutation, (c) Foregrounding inherited disease risk, (d) Responding to knowledge of genetic vulnerability and (e) Altering or avoiding the family experience of inherited disease. Conclusions and Implications: Presymptomatic genetic testing provides information that can be used to make health behavior decisions. Longitudinal grounded theory studies of this population will increase our understanding of the complexities that arise for individuals and their families with genetic testing. Future planned interviews with this sample and another larger sample of young women with BRCA mutations will allow the ongoing adaptation of the theory of knowing about and living with genetic vulnerability.
Repository Posting Date:
27-Oct-2011
Date of Publication:
27-Oct-2011
Conference Date:
2007
Conference Name:
19th Annual Scientific Sessions
Conference Host:
Eastern Nursing Research Society
Conference Location:
Providence, Rhode Island, USA
Description:
Conference theme: Building Communities of Scholarship and Research, held April 12-14, 2007 at The Westin Providence.
Note:
This is an abstract-only submission. If the author has submitted a full-text item based on this abstract, you may find it by browsing the Virginia Henderson Global Nursing e-Repository by author. If author contact information is available in this abstract, please feel free to contact him or her with your queries regarding this submission. Alternatively, please contact the conference host, journal, or publisher (according to the circumstance) for further details regarding this item. If a citation is listed in this record, the item has been published and is available via open-access avenues or a journal/database subscription. Contact your library for assistance in obtaining the as-published article.

Full metadata record

DC FieldValue Language
dc.type.categoryAbstracten_US
dc.typePresentationen_GB
dc.titleLiving with presymptomatic genetic test resultsen_GB
dc.contributor.authorHamilton, Rebekah J.en_US
dc.author.detailsRebekah J. Hamilton, PhD, RN, University of Pittsburgh, Pittsburgh, Pennsylvania, USA, email: hamilr@pitt.eduen_US
dc.identifier.urihttp://hdl.handle.net/10755/162127-
dc.description.abstractPurpose: To describe the experience of living with presymptomatic genetic test results for the Huntington disease mutation and the BRCA1/2 mutations over time and to develop a substantive mid-range theory of decision making after genetic testing. Background: Presymptomatic genetic testing has been available for around two decades. However, there are few longitudinal studies that are aimed at increasing understanding of how individuals live with this knowledge. Individuals at risk for Huntington disease (HD) and hereditary breast and ovarian cancer (HBOC) were re-interviewed at approximately 2.5-3 years from the time of the initial interview. Questions were asked about their health, health care choices, consequences of choices previously made and family interaction. Methods (Design, Participants, Setting, Data Collection, Analytic approach): This longitudinal study used grounded theory to plan, guide and analyze in-depth interviews with 21 individuals representing a 72% return participation after approximately 2.5-3 year interval. The final sample in this phase of the study included 14 participants who were at risk for HBOC and seven who were at risk for HD. Results: The mid-range grounded theory developed is called: "The theory of knowing about and living with genetic vulnerability" and is composed of five concepts: (a) Experiencing the family disease, (b) Testing for a mutation, (c) Foregrounding inherited disease risk, (d) Responding to knowledge of genetic vulnerability and (e) Altering or avoiding the family experience of inherited disease. Conclusions and Implications: Presymptomatic genetic testing provides information that can be used to make health behavior decisions. Longitudinal grounded theory studies of this population will increase our understanding of the complexities that arise for individuals and their families with genetic testing. Future planned interviews with this sample and another larger sample of young women with BRCA mutations will allow the ongoing adaptation of the theory of knowing about and living with genetic vulnerability.en_GB
dc.date.available2011-10-27T11:01:22Z-
dc.date.issued2011-10-27en_GB
dc.date.accessioned2011-10-27T11:01:22Z-
dc.conference.date2007en_US
dc.conference.name19th Annual Scientific Sessionsen_US
dc.conference.hostEastern Nursing Research Societyen_US
dc.conference.locationProvidence, Rhode Island, USAen_US
dc.descriptionConference theme: Building Communities of Scholarship and Research, held April 12-14, 2007 at The Westin Providence.en_US
dc.description.noteThis is an abstract-only submission. If the author has submitted a full-text item based on this abstract, you may find it by browsing the Virginia Henderson Global Nursing e-Repository by author. If author contact information is available in this abstract, please feel free to contact him or her with your queries regarding this submission. Alternatively, please contact the conference host, journal, or publisher (according to the circumstance) for further details regarding this item. If a citation is listed in this record, the item has been published and is available via open-access avenues or a journal/database subscription. Contact your library for assistance in obtaining the as-published article.-
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