Menzies School of Health Research, Charles Darwin University, Australia.
Menzies School of Health Research, Charles Darwin University, Australia; Yalu Marnggithinyaraw Centre, Elcho Island, Australia.
Soc Sci Med. 2013 Dec;98:351-60. doi: 10.1016/j.socscimed.2012.10.031. Epub 2012 Dec 20.
This cross-cultural qualitative study examined the ethical, language and cultural complexities around offering fetal anomaly screening in Australian Aboriginal communities. There were five study sites across the Northern Territory (NT), including urban and remote Aboriginal communities. In-depth interviews were conducted between October 2009 and August 2010, and included 35 interviews with 59 health providers and 33 interviews with 62 Aboriginal women. The findings show that while many providers espoused the importance of achieving equity in access to fetal anomaly screening, their actions were inconsistent with this ideal. Providers reported they often modified their practice depending on the characteristics of their client, including their English skills, the perception of the woman's interest in the tests and assumptions based on their risk profile and cultural background. Health providers were unsure whether it was better to tailor information to the specific needs of their client or to provide the same level of information to all clients. Very few Aboriginal women were aware of fetal anomaly screening. The research revealed they did want to be offered screening and wanted the 'full story' about all aspects of the tests. The communication processes advocated by Aboriginal women to improve understanding about screening included community discussions led by elders and educators. These processes promote culturally defined ways of sharing information, rather than the individualised, biomedical approaches to information-giving in the clinical setting. A different and arguably more ethical approach to introducing fetal anomaly screening would be to initiate dialogue with appropriate groups of women in the community, particularly young women, build relationships and utilise Aboriginal health workers. This could accommodate individual choice and broader cultural values and allow women to discuss the moral and philosophical debates surrounding fetal anomaly screening prior to the clinical encounter and within their own cultural space.
本跨文化定性研究考察了在澳大利亚原住民社区提供胎儿异常筛查时所涉及的伦理、语言和文化复杂性。研究在北领地（NT）的五个地点进行，包括城市和偏远的原住民社区。2009 年 10 月至 2010 年 8 月期间进行了深入访谈，包括 59 名卫生提供者的 35 次访谈和 62 名原住民妇女的 33 次访谈。研究结果表明，尽管许多提供者认为在获得胎儿异常筛查方面实现公平机会非常重要，但他们的行为与这一理想并不一致。提供者报告说，他们经常根据客户的特点调整自己的做法，包括客户的英语水平、对妇女对测试的兴趣的看法以及基于风险概况和文化背景的假设。卫生提供者不确定是根据客户的具体需求定制信息更好，还是向所有客户提供相同水平的信息。很少有原住民妇女了解胎儿异常筛查。研究表明，她们确实希望接受筛查，并希望了解测试各个方面的“完整情况”。原住民妇女倡导的改善对筛查理解的沟通过程包括由长者和教育者领导的社区讨论。这些过程促进了以文化定义的信息共享方式，而不是在临床环境中向个人提供信息的个体化、生物医学方法。引入胎儿异常筛查的一种不同的、可以说是更符合伦理的方法是，与社区中适当的妇女群体（尤其是年轻妇女）展开对话，建立关系并利用原住民卫生工作者。这可以适应个人选择和更广泛的文化价值观，并允许妇女在临床接触之前在自己的文化空间内讨论围绕胎儿异常筛查的道德和哲学辩论。
