Females with a BRCA1/2 (BRCA) pathogenic variant have high lifetime risks for cancer. Regularly updated guidelines are in place that recommend screening and/or surgery to monitor and/or significantly reduce breast or ovarian cancer risk. Follow-up care decision making among this population is important to explore to understand the multi-faceted influences guiding cancer screening behaviors and risk-reducing surgery decisions. Using lived-experience theory and cognitive anthropology, this study explored emotional and social influences on decision making and behavioral adherence to guideline recommendations among twenty-seven female BRCA carriers. Ethnographic data from in-depth interviews were analyzed in parallel with self-reported survey data on perceived threat, response efficacy, and self-efficacy constructs. Survey results demonstrated high rates of adherence to guideline recommendations and high levels of perceived threat and response efficacy with lower levels of self-efficacy, while interview data revealed multi-faceted motivators and challenges associated with behavioral adherence. These findings unearth complex lived-experiences within the context of perceived threat, response efficacy, and self-efficacy and explore the cognitive relationship between motivators and challenges to inherited cancer follow-up care decision making and behavioral adherence. This study demonstrates how anthropological practice can aid in inherited cancer research and be used to support the development of interventions that consider cognitive influences on behavior.

中文翻译：

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使用人类学视角探索有遗传性癌症风险的女性 BRCA1/2 携带者后续护理决策的动机和挑战

具有 BRCA1/2 (BRCA) 致病性变异的女性终生患癌症的风险很高。定期更新的指南建议进行筛查和/或手术以监测和/或显着降低乳腺癌或卵巢癌的风险。该人群的后续护理决策对于探索指导癌症筛查行为和降低风险的手术决策的多方面影响非常重要。本研究使用生活体验理论和认知人类学，探讨了情绪和社会对 27 名 BRCA 女性携带者的决策和行为遵守指南建议的影响。来自深度访谈的人种学数据与自我报告的关于感知威胁、响应效率和自我效能结构的调查数据同时进行分析。调查结果表明，对指南建议的遵守率很高，感知到的威胁和响应效率水平很高，而自我效能水平较低，而访谈数据显示了与行为依从性相关的多方面动机和挑战。这些发现在感知威胁、反应效能和自我效能感的背景下发掘了复杂的生活体验，并探索了激励因素与遗传性癌症后续护理决策和行为依从性挑战之间的认知关系。这项研究展示了人类学实践如何帮助遗传癌症研究，并用于支持考虑认知对行为影响的干预措施的发展。