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影响家庭成员间分享癌症遗传结果决策的因素:亚洲背景下女性的深入访谈研究。

Factors influencing the decision to share cancer genetic results among family members: An in-depth interview study of women in an Asian setting.

机构信息

Cancer Genetics Service, Division of Medical Oncology, National Cancer Centre Singapore, Singapore.

Sociology, School of Social Sciences, Nanyang Technology University, Singapore.

出版信息

Psychooncology. 2018 Mar;27(3):998-1004. doi: 10.1002/pon.4627. Epub 2018 Jan 24.

DOI:10.1002/pon.4627
PMID:29314485
Abstract

OBJECTIVE

Reluctance to share hereditary cancer syndrome genetic test results with family is reported among Asian patients. This study aims to explore patient factors influencing result sharing with family, to improve overall testing uptake.

METHODS

Participants were women with a personal/family history of breast and/or ovarian cancer who received a positive, negative, or variant of uncertain significance test result. In-depth interviews were conducted to theme saturation to explore facilitators and barriers for sharing results with family. Grounded theory with thematic analysis was applied in analysis and interpretation.

RESULTS

Twenty-four women participated. Three themes representing facilitators emerged for all results categories: family closeness, involvement of families in the testing process, and perception of low emotional impact of results. In the positive result category, 2 facilitator themes emerged: presence of actionable results and perception of family members' acceptance. In the negative and variant of uncertain significance result categories, 2 themes representing barriers to sharing emerged: perception of no genetic or medical implication for family and result ambiguity.

CONCLUSION

Facilitators and barriers for result sharing are similar to those among Western women. A framework to explain Asian patients' decision-making process identifies optimal counselling opportunities to enhance communication with family.

摘要

目的

据报道,亚洲患者不愿与家人分享遗传性癌症综合征基因检测结果。本研究旨在探讨影响与家人分享结果的患者因素,以提高整体检测率。

方法

参与者为有乳腺癌和/或卵巢癌个人/家族史的女性,她们接受了阳性、阴性或意义不明的变异检测结果。进行深入访谈以达到主题饱和,以探讨与家人分享结果的促进因素和障碍。采用扎根理论和主题分析进行分析和解释。

结果

24 名女性参与。所有结果类别都出现了 3 个代表促进因素的主题:家庭亲密程度、家庭参与检测过程以及对结果低情绪影响的感知。在阳性结果类别中,出现了 2 个促进因素主题:存在可采取行动的结果和对家庭成员接受程度的感知。在阴性和意义不明的变异结果类别中,出现了 2 个代表分享障碍的主题:对家庭无遗传或医学意义的感知和结果的模糊性。

结论

促进因素和分享障碍与西方女性相似。解释亚洲患者决策过程的框架确定了最佳的咨询机会,以加强与家人的沟通。

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