Abstract：
OBJECTIVE: Hereditary cancer risks can be effectively managed if at-risk relatives enroll in surveillance and preventive care. Family-mediated risk disclosure has internationally been shown to be incomplete, selective and leave over a third of eligible at-risk individuals without access to genetic counseling. We explored patients handling of cancer risk information in practice.
METHODS: We conducted twelve semi-structured interviews with patients who had completed their genetic counseling and been asked to disclose risk information to relatives. Questions were designed to investigate lived experiences of communicating hereditary risk and focused on disclosure strategies, intrafamilial interactions and emotional responses.
RESULTS: Qualitative content analysis yielded five categories. These span personal fears, shared responsibilities, feeling of empowerment, innovative solutions and unmet needs. Patients put high value on collaboration with their genetic healthcare professionals but also solicited better overview of the counseling process and more personalized, case-tailored information.
CONCLUSIONS: Our results add novel insights about the practical strategies employed by genetic counselees and their motivations behind disclosing hereditary risk information to relatives.
CONCLUSIONS: A patient-centered cancer genetics care would clarify roles and responsibilities around risk disclosure, inform counselees about the process upfront and tailor information to offer case-specific data with the family\'s inheritance pattern explained.
METHODS: We conducted twelve semi-structured interviews with patients who had completed their genetic counseling and been asked to disclose risk information to relatives. Questions were designed to investigate lived experiences of communicating hereditary risk and focused on disclosure strategies, intrafamilial interactions and emotional responses.
RESULTS: Qualitative content analysis yielded five categories. These span personal fears, shared responsibilities, feeling of empowerment, innovative solutions and unmet needs. Patients put high value on collaboration with their genetic healthcare professionals but also solicited better overview of the counseling process and more personalized, case-tailored information.
CONCLUSIONS: Our results add novel insights about the practical strategies employed by genetic counselees and their motivations behind disclosing hereditary risk information to relatives.
CONCLUSIONS: A patient-centered cancer genetics care would clarify roles and responsibilities around risk disclosure, inform counselees about the process upfront and tailor information to offer case-specific data with the family\'s inheritance pattern explained.
摘要：
目的：如果有风险的亲属参加监测和预防护理，可以有效控制遗传性癌症风险。家庭介导的风险披露在国际上已被证明是不完整的，有选择性，并使超过三分之一的符合条件的高危个体无法获得遗传咨询。我们探索了患者在实践中处理癌症风险信息的方法。
方法：我们对完成遗传咨询并被要求向亲属披露风险信息的患者进行了12次半结构化访谈。问题旨在调查传达遗传风险的生活经验，并侧重于披露策略，家族内互动和情绪反应。
结果：定性内容分析产生了五个类别。这些跨越个人的恐惧，分担责任,赋权的感觉，创新的解决方案和未满足的需求。患者高度重视与遗传医疗保健专业人员的合作，但也要求对咨询过程进行更好的概述，并更加个性化。案例定制信息。
结论：我们的结果为遗传咨询师采用的实际策略及其向亲属披露遗传风险信息的动机提供了新的见解。
结论：以患者为中心的癌症遗传学护理将澄清围绕风险披露的角色和责任，提前告知顾问该过程并定制信息，以提供特定于案例的数据，并解释家庭的继承模式。
方法：我们对完成遗传咨询并被要求向亲属披露风险信息的患者进行了12次半结构化访谈。问题旨在调查传达遗传风险的生活经验，并侧重于披露策略，家族内互动和情绪反应。
结果：定性内容分析产生了五个类别。这些跨越个人的恐惧，分担责任,赋权的感觉，创新的解决方案和未满足的需求。患者高度重视与遗传医疗保健专业人员的合作，但也要求对咨询过程进行更好的概述，并更加个性化。案例定制信息。
结论：我们的结果为遗传咨询师采用的实际策略及其向亲属披露遗传风险信息的动机提供了新的见解。
结论：以患者为中心的癌症遗传学护理将澄清围绕风险披露的角色和责任，提前告知顾问该过程并定制信息，以提供特定于案例的数据，并解释家庭的继承模式。
