Health Soc Work. 2021 Nov 16;46(4):299-307. doi: 10.1093/hsw/hlab032.
Li-Fraumeni syndrome (LFS) is a rare hereditary cancer syndrome in which individuals have a significantly increased risk of developing multiple cancers throughout the life span. An LFS diagnosis may shift the individual's sense of self and tolerance of cancer risk as they engage in cancer screening and cancer prevention activities. This study examined the impact of family identity on health decision making, communication, and role function. Forty-five families completed one or more interviews during an annual, protocol-specific cancer screening study. An interdisciplinary team analyzed 66 interviews using interpretive description and modified grounding theory. Thematically, identity emerged as an evolving construct regarding self and/or family, embedded in historical and ongoing experiences with LFS. Notions of individual and shared family identities guided decision making related to healthcare and influenced interpersonal communication and role function between supportive networks and families. Alignment between individual, family, and generational identities may shape engagement in genetic testing, risk management, and family life. Medical teams that are unequipped to address the psychosocial challenges that LFS populations face may include mental health professionals on interprofessional care teams to navigate risk management and consequential familial conflict.
李-佛美尼综合征（Li-Fraumeni syndrome，LFS）是一种罕见的遗传性癌症综合征，患者一生中发生多种癌症的风险显著增加。LFS 的诊断可能会改变个体对自我的认知和对癌症风险的容忍度，从而影响他们进行癌症筛查和癌症预防活动。本研究探讨了家族认同对健康决策、沟通和角色功能的影响。45 个家庭在一项年度特定癌症筛查研究中完成了一次或多次访谈。一个跨学科团队使用解释性描述和改进的扎根理论对 66 次访谈进行了分析。从主题上看，身份是一个关于自我和/或家庭的不断发展的概念，嵌入在与 LFS 相关的历史和持续的经历中。个体和共同的家庭认同的概念指导与医疗保健相关的决策，并影响支持网络和家庭之间的人际沟通和角色功能。个体、家庭和代际认同之间的一致性可能会影响遗传测试、风险管理和家庭生活的参与。没有能力解决 LFS 人群所面临的心理社会挑战的医疗团队可能会在跨专业护理团队中加入心理健康专业人员，以应对风险管理和随之而来的家庭冲突。
