Women's Perceptions of Journeying Toward an Unknown Future With Breast Cancer: The 'Lives at Risk Study'

Rapport Frances; Khanom Ashrafunnesa; Doel Marcus A.; Hutchings Hayley A.; Bierbaum Mia; Hogden Anne; Shih Patti; Braithwaite Jeffrey; Clement Clare

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Women's Perceptions of Journeying Toward an Unknown Future With Breast Cancer: The 'Lives at Risk Study'

机译：妇女对患有乳腺癌未知未来未知未知的知情：“生活在风险研究中”

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Breast cancer risk classifications are useful for prognosis, yet little is known of their effect on patients. This study clarified women's understandings of risk as they journeyed through the health care system. Breast cancer patients and women undergoing genetic investigation were recruited (N = 25) from a large UK Health Board, 2014-2015, completing a Book of Experience, and Bio-photographic elicitation interviews. Stakeholder and Participant Feedback Forums were undertaken with key stakeholders, including patients, oncologists, funders, and policy developers, to inform team understanding. Thematic and visual frameworks from multidisciplinary analysis workshops uncovered two themes: Subjective Understandings of Risk and Journeying Toward an Unknown Future. Breast cancer patients and women undergoing investigation experienced risk intuitively. Statistical formulations were often perplexing, diverting attention away from concrete life-and-death facts. Following risk classification, care must be co-defined to reduce patients' foreboding about an unknown future, taking into consideration personal risk management strategies and aspirations for a cancer-free future.

机译：乳腺癌风险分类对预后有用，但对其对患者的影响知之甚少。这项研究澄清了女性在医疗体系中对风险的理解。乳腺癌患者和接受基因调查的女性（N=25）于2014-2015年从一家大型英国卫生委员会招募，完成了一本经验书和生物摄影启发访谈。与关键利益相关者（包括患者、肿瘤学家、资助者和政策制定者）举行利益相关者和参与者反馈论坛，以告知团队理解。多学科分析研讨会的主题和视觉框架揭示了两个主题：对风险的主观理解和走向未知未来。乳腺癌患者和接受调查的女性直观地感受到了风险。统计公式往往令人困惑，将注意力从具体的生死攸关的事实上转移开。根据风险分类，必须共同定义护理，以减少患者对未知未来的预感，同时考虑个人风险管理策略和对无癌症未来的期望。

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来源
《Qualitative health research》 |2018年第1期|共17页
作者
Rapport Frances; Khanom Ashrafunnesa; Doel Marcus A.; Hutchings Hayley A.; Bierbaum Mia; Hogden Anne; Shih Patti; Braithwaite Jeffrey; Clement Clare;
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作者单位

Macquarie Univ Australian Inst Hlth Innovat Hlth Implementat Sci Sydney NSW Australia;

Swansea Univ Sch Med Swansea W Glam Wales;

Swansea Univ Geog Swansea W Glam Wales;

Swansea Univ Sch Med Hlth Serv Res Swansea W Glam Wales;

Macquarie Univ Implementat Sci Stream Sydney NSW Australia;

Macquarie Univ Implementat Sci Stream Sydney NSW Australia;

Macquarie Univ Implementat Sci Stream Sydney NSW Australia;

Macquarie Univ Australian Inst Hlth Innovat Sydney NSW Australia;

Univ Bristol Sch Social &

Community Med Randomised Trials Methodol Bristol Avon England;

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原文格式 PDF
正文语种 eng
中图分类保健组织与事业（卫生事业管理）;
关键词
breast cancer; psychosocial aspects; risk; journeying; multi-stage qualitative methods; Wales; UK;

机译：乳腺癌;心理社会方面;风险;旅行;多阶段定性方法;威尔士;英国;

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1. Clinical practice guidelines for risk assessment to identify women at high risk of breast cancer:Chinese Society of Breast Surgery(CSBrS)practice guidelines 2021 [J] . Fei Wang, Xue-Ning Duan, Rui Ling, 中华医学杂志（英文版） . 2021,第014期
2. THE STUDY ON RISK FACTORS ASSOCIATED WITH BREAST CANCER AMONG WOMEN IN TIANJIN,CHINA AND ADELAIDE,AUSTRALIA [J] . 中国癌症研究（英文版） . 1989,第005期
3. Knowledge, Attitudes and Perception of Moroccan Women about Breast Cancer [J] . Nadia Benaicha, Hafida Charaka, Ousmane Desire, 健康科学：英文版 . 2016,第006期
4. Women's Perceptions of Journeying Toward an Unknown Future With Breast Cancer: The "Lives at Risk Study" [J] . Rapport Frances, Khanom Ashrafunnesa, Doel Marcus A., Qualitative health research . 2018,第1期

机译：妇女对患有乳腺癌未知未来未知未知的知情：“生活在风险研究中”
5. Risk perception and cancer worry: an exploratory study of the impact of genetic risk counselling in women with a family history of breast cancer. [J] . Hopwood P, Shenton A, Lalloo F, Journal of Medical Genetics . 2001,第2期

机译：风险感知和癌症担忧：遗传风险咨询对有乳腺癌家族史的女性的影响的探索性研究。
6. Relationships among breast cancer concern, risk perceptions, and interest in genetic testing for breast cancer susceptibility among African-American women with and without a family history of breast cancer. [J] . Lipkus IM, Iden D, Terrenoire J, Cancer epidemiology, biomarkers and prevention: A publication of the American Association for Cancer Research . 1999,第6期

机译：患有和不患有乳腺癌家族史的非裔美国人女性对乳腺癌的担忧，风险认知以及对乳腺癌易感性基因检测的兴趣之间的关系。
7. Serum Concentrations of Polybrominated Diphenyl Ethers (PBDEs) and Breast Cancer Risk in Young Women: Results from the Ontario Environment and Health Study [C] . Linda Kachuri, Paul Villeneuve, Shabana Siddique, Joint annual meeting of the International Society of Exposure Science and the International Society for Environmental Epidemiology . 2018

机译：多溴联苯醚的血清浓度和年轻女性患乳腺癌的风险：安大略省环境与健康研究的结果
8. Psychosocial aspects of risk perceptions for cardiovascular disease, breast cancer, and lung cancer in younger and older women [D] . Hamilton, Jada Gabrielle. 2009

机译：男女对心血管疾病，乳腺癌和肺癌的风险感知的社会心理方面
9. Risk perception and cancer worry: an exploratory study of the impact of genetic risk counselling in women with a family history of breast cancer [O] . P HOPWOOD, A SHENTON, F LALLOO, 2001

机译：风险感知和癌症担忧：遗传风险咨询对有乳腺癌家族史的女性的影响的探索性研究
10. Women’s Perceptions of Journeying Toward an Unknown Future With Breast Cancer: The “Lives at Risk Study” [O] . Hutchings, Hayley 2017

机译：女性对乳腺癌未知的未来旅行的看法：“生命危险研究”
11. Future Research Needs To Reduce the Risk of Primary Breast Cancer in Women. Future Research Needs Paper No. 5 [R] . Guise, J. M., Nakamoto, E. K., LaBrant, L., 2010

机译：未来的研究需要降低女性原发性乳腺癌的风险。未来的研究需要第5号文件

Women's Perceptions of Journeying Toward an Unknown Future With Breast Cancer: The 'Lives at Risk Study'

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