Fitzpatrick Emily F M, Carter Maureen, Oscar June, Lawford Tom, Martiniuk Alexandra L C, D'Antoine Heather A, Elliott Elizabeth J
Discipline of Child and Adolescent Health, University of Sydney Medical School, Sydney, Australia.
Discipline of Child and Adolescent Health, Sydney Children's Hospitals Network Randwick and Westmead, Sydney, Australia.
BMJ Open. 2017 Dec 28;7(12):e018452. doi: 10.1136/bmjopen-2017-018452.
Research with Indigenous populations is not always designed with cultural sensitivity. Few publications evaluate or describe in detail seeking consent for research with Indigenous participants. When potential participants are not engaged in a culturally respectful manner, participation rates and research quality can be adversely affected. It is unethical to proceed with research without truly informed consent.
We describe a culturally appropriate research protocol that is invited by Aboriginal communities of the Fitzroy Valley in Western Australia. The Picture Talk Project is a research partnership with local Aboriginal leaders who are also chief investigators. We will interview Aboriginal leaders about research, community engagement and the consent process and hold focus groups with Aboriginal community members about individual consent. Cultural protocols will be applied to recruit and conduct research with participants. Transcripts will be analysed using NVivo10 qualitative software and themes synthesised to highlight the key issues raised by the community about the research process. This protocol will guide future research with the Aboriginal communities of the Fitzroy Valley and may inform the approach to research with other Indigenous communities of Australia or the world. It must be noted that no community is the same and all research requires local consultation and input. To conduct culturally sensitive research, respected local people from the community who have knowledge of cultural protocol and language are engaged to guide each step of the research process from the project design to the delivery of results.
Ethics approval was granted by the University of Sydney Human Research Ethics Committee (No. 2012/348, reference:14760), the Western Australia Country Health Service Ethics Committee (No. 2012:15), the Western Australian Aboriginal Health Ethics Committee and reviewed by the Kimberley Aboriginal Health Planning Forum Research Sub-Committee (No. 2012-008). Results will be disseminated through peer review articles, a local Fitzroy Valley report and conference presentations.
针对原住民群体的研究并非总是在设计时考虑到文化敏感性。很少有出版物详细评估或描述在征得原住民参与者同意进行研究方面的情况。当没有以尊重文化的方式让潜在参与者参与进来时,参与率和研究质量可能会受到不利影响。在没有真正获得知情同意的情况下进行研究是不道德的。
我们描述了一个由西澳大利亚菲茨罗伊山谷的原住民社区所邀请的符合文化规范的研究方案。图片访谈项目是与当地也是首席研究员的原住民领袖建立的研究伙伴关系。我们将采访原住民领袖,了解研究、社区参与和同意过程,并与原住民社区成员就个人同意问题举行焦点小组讨论。文化规范将应用于招募参与者并开展研究。将使用NVivo10定性软件分析访谈记录,并综合主题以突出社区提出的关于研究过程的关键问题。该方案将指导未来对菲茨罗伊山谷原住民社区的研究,并可能为澳大利亚或世界其他原住民社区的研究方法提供参考。必须指出的是,没有哪个社区是完全相同的,所有研究都需要进行当地咨询并获取当地意见。为了开展具有文化敏感性的研究,要邀请社区中了解文化规范和语言的受尊重的当地人来指导从项目设计到结果汇报的研究过程的每一步。
悉尼大学人类研究伦理委员会(编号:2012/348,参考编号:14760)、西澳大利亚乡村卫生服务伦理委员会(编号:2012:15)、西澳大利亚原住民健康伦理委员会批准了伦理审查,金伯利原住民健康规划论坛研究小组委员会(编号:2012 - 008)也进行了审核。研究结果将通过同行评审文章、菲茨罗伊山谷当地报告以及会议发言进行传播。