Women's Perceptions of the Personal and Family Impact of Genetic Cancer Risk Assessment: Focus Group Findings

Women's Perceptions of the Personal and Family Impact of Genetic Cancer Risk Assessment: Focus Group Findings
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DOI:
10.1007/s10897-009-9267-3
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发表时间:
2010-04-01
影响因子:
1.9
通讯作者:
Ferrell, Betty
Ferrell, Betty
中科院分区:
医学4区
文献类型:
--
作者:
MacDonald, Deborah J.;Sarna, Linda;Ferrell, Betty

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有乳腺癌或卵巢癌个人或家族病史的妇女越来越多地提出进行遗传癌症风险评估(GCRA)。为了探讨GCRA对个人和家庭的影响,对接受风险评估的妇女进行了四个焦点小组的研究。参与者主要是22名有乳腺癌或卵巢癌个人或家族病史的非拉丁裔白人女性。对数据的分析确定了与平衡吸收风险信息的时间与及时做出医疗保健决定的需要、医生缺乏足够的遗传知识以及对女儿的关心(无论女儿的年龄)有关的新主题。其他主题涉及保护他人、知识赋权、重新评估癌症风险的个人归因、管理不确定性、重新评估身体形象,以及经历不同家庭对癌症风险和医疗保健决策的沟通反应。了解GCRA对个人和家庭的影响可以使遗传学专业人员调整他们的咨询工作,以更好地满足这些妇女的需求。需要进一步的研究来扩展这些发现,并确定支持GCRA积极结果的干预措施。
Women with a personal or family history of breast or ovarian cancer are increasingly presenting for genetic cancer risk assessment (GCRA). To explore the personal and family impact of GCRA, four focus groups were conducted of women seen for risk assessment. Participants were 22 primarily non-Latina White women with a personal or family history of breast or ovarian cancer. Analysis of the data identified new themes related to balancing time to assimilate risk information with the need to make timely healthcare decisions, physicians' lack of sufficient genetic knowledge, and concern for daughters regardless of the daughters' age. Other themes related to protecting others, knowledge as empowerment, reassessing personal attribution of cancer risk, managing uncertainty, reappraising body image, and experiencing divergent family responses to communication of cancer risk and healthcare decisions. Understanding the personal and family impact of GCRA may enable genetics professionals to tailor their counseling efforts to better meet the needs of these women. Additional research is needed to extend these findings and identify interventions to support positive outcomes of GCRA.