Bond Elysa, Yashar Beverly, Else Tobias, Osborne Jenae, Marvin Monica
Department of Human Genetics, University of Michigan, Ann Arbor, MI, USA.
Department of Medicine, Division of Hematology, Oncology, and Cell Therapy, Rush University Medical Center, Chicago, IL, USA.
Fam Cancer. 2023 Apr;22(2):203-215. doi: 10.1007/s10689-022-00311-2. Epub 2022 Aug 19.
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.
患有遗传疾病的人在处理恋爱关系时面临着独特的挑战。虽然之前的研究探讨了遗传性乳腺癌和卵巢癌综合征对约会的影响，但针对患有早发性多器官肿瘤易感性综合征（如冯·希佩尔-林道病，VHL）的年轻人的心理社会影响的研究却很少。本研究评估了年轻人对约会的态度以及与向恋爱伴侣披露VHL诊断相关的决定。26名患有VHL的年轻人参与了探索这一问题的半结构化访谈，访谈指南参考了文献并咨询了医疗服务提供者以及一名VHL患者。访谈编码主要采用演绎法，使用从文献中得出的编码，对于VHL特有的观点则采用归纳编码。我们的研究结果支持了之前的发现，即遗传疾病会因吸引力下降而导致对被拒绝的恐惧。然而，参与者报告称，由于对VHL不熟悉且认为其异常严重，伴侣对VHL的反应会特别加剧这种担忧，从而导致在披露方面采取不同的策略。虽然许多人提到了伴侣的负面反应，但参与者也描述了披露如何通过加深信任来加强关系。参与者讨论了希望医疗服务提供者在这方面提供支持，并描述了与同龄人谈论他们的约会经历和披露方式的好处。我们的研究结果深入了解了患有VHL的年轻人在处理恋爱关系以及关于披露的决策时的各种需求，并强调了医疗服务提供者和患者组织以患者为中心提供支持的重要性。
