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Disclosure of genetic risk to dating partners among young adults with von Hippel-Lindau disease

Disclosure of genetic risk to dating partners among young adults with von Hippel-Lindau disease Individuals with genetic disease face unique challenges related to navigating dating relationships. While previous studies have explored the impact of hereditary breast and ovarian cancer syndrome on dating, research investigating psychosocial implications for young adults with early-onset multi-organ tumor predisposition syndromes such as von Hippel-Lindau disease (VHL) is scarce. This study assessed young adults’ attitudes towards dating and decisions related to disclosing a diagnosis of VHL to a dating partner. Twenty-six young adults with VHL participated in semi-structured interviews exploring this issue, using a guide informed by the literature in consultation with providers and an individual with VHL. Interviews were coded with a primarily deductive approach using codes derived from the literature, with inductive coding employed for perspectives unique to VHL. Our results support previous findings that genetic disease contributes to fear of rejection due to decreased desirability. However, participants report that partners’ reactions to VHL uniquely exacerbate this concern due to unfamiliarity with VHL and a perception that it is exceptionally serious, leading to different strategies in disclosure. While many cited negative reactions from partners, participants also described how disclosure can strengthen relationships by deepening trust. Participants discussed a desire for healthcare providers to offer support in this context and described the benefit of speaking with peers about their dating experiences and approaches to disclosure. Our findings provide insight into the diverse needs of young adults with VHL as they approach romantic relationships and decision-making regarding disclosure and highlight the importance of patient-centered support from providers and patient organizations. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Familial Cancer Springer Journals

Disclosure of genetic risk to dating partners among young adults with von Hippel-Lindau disease

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References (67)

Publisher
Springer Journals
Copyright
Copyright © The Author(s), under exclusive licence to Springer Nature B.V. 2022. Springer Nature or its licensor holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.
ISSN
1389-9600
eISSN
1573-7292
DOI
10.1007/s10689-022-00311-2
Publisher site
See Article on Publisher Site

Abstract

Individuals with genetic disease face unique challenges related to navigating dating relationships. While previous studies have explored the impact of hereditary breast and ovarian cancer syndrome on dating, research investigating psychosocial implications for young adults with early-onset multi-organ tumor predisposition syndromes such as von Hippel-Lindau disease (VHL) is scarce. This study assessed young adults’ attitudes towards dating and decisions related to disclosing a diagnosis of VHL to a dating partner. Twenty-six young adults with VHL participated in semi-structured interviews exploring this issue, using a guide informed by the literature in consultation with providers and an individual with VHL. Interviews were coded with a primarily deductive approach using codes derived from the literature, with inductive coding employed for perspectives unique to VHL. Our results support previous findings that genetic disease contributes to fear of rejection due to decreased desirability. However, participants report that partners’ reactions to VHL uniquely exacerbate this concern due to unfamiliarity with VHL and a perception that it is exceptionally serious, leading to different strategies in disclosure. While many cited negative reactions from partners, participants also described how disclosure can strengthen relationships by deepening trust. Participants discussed a desire for healthcare providers to offer support in this context and described the benefit of speaking with peers about their dating experiences and approaches to disclosure. Our findings provide insight into the diverse needs of young adults with VHL as they approach romantic relationships and decision-making regarding disclosure and highlight the importance of patient-centered support from providers and patient organizations.

Journal

Familial Cancer – Springer Journals

Published: Apr 1, 2023

Keywords: Von Hippel-Lindau; VHL; Dating; Disclosure; Young adulthood; Psychosocial support; Genetic

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