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产前筛查中知情选择的解读:一项跨文化的 Q 方法学研究。

Interpretations of informed choice in antenatal screening: a cross-cultural, Q-methodology study.

机构信息

Leeds Institute of Health Sciences, University of Leeds, Leeds, West Yorkshire LS2 9LJ, UK.

出版信息

Soc Sci Med. 2012 Apr;74(7):997-1004. doi: 10.1016/j.socscimed.2011.12.021. Epub 2012 Jan 25.

Abstract

Informed choice is internationally recognised and accepted as an important aspect of ethical healthcare. In the U.K., NHS antenatal screening policies state that their primary aim is to facilitate reproductive informed choices. These policies, implemented within a multiethnic population, are largely guided by the ethical principle of autonomy. This study was carried out in 2009 in the U.K. and used Q-methodology to explore diversity in the value attached to autonomous informed choice in antenatal screening for genetic disorders and similarities and differences in this value in women from different ethnic origins. Ninety-eight participants of African, British White, Caribbean, Chinese and Pakistani origin completed a 41-statement Q-sort in English, French, Mandarin or Urdu. Q-Factor analysis produced five statistically independent viewpoints of the value of informed choice: choice as an individual right; choice informed by religious values; choice as a shared responsibility; choice advised by health professionals; and choice within the family context. The findings show that women hold a variety of views on the nature of informed choice, and that, contradictory to policies of autonomous informed choice, many women seek and value the advice of health professionals. The findings have implications for the role of health professionals in facilitating informed choice, quality of care and equity of access.

摘要

知情选择已被国际认可和接受为医疗保健伦理的一个重要方面。在英国,NHS 产前筛查政策规定,其主要目标是促进生殖知情选择。这些政策在多民族人口中实施,主要受到自主原则的指导。本研究于 2009 年在英国进行,采用 Q 方法学探讨了在遗传疾病产前筛查中对自主知情选择的重视程度的多样性,以及不同族裔背景的女性对这种价值观的相似性和差异性。98 名来自非洲裔、英国白人、加勒比裔、华裔和巴基斯坦裔的参与者用英语、法语、普通话或乌尔都语完成了 41 项陈述的 Q 分类。Q 因子分析得出了对知情选择价值的五个独立观点:选择作为个人权利;选择受宗教价值观的影响;选择作为共同责任;选择由健康专业人员建议;以及在家庭环境中进行选择。研究结果表明,女性对知情选择的性质持有多种观点,而且与自主知情选择政策相悖的是,许多女性寻求并重视健康专业人员的建议。这些发现对健康专业人员在促进知情选择、护理质量和公平获得方面的作用产生了影响。

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