Researching health inequalities with Community Researchers: practical, methodological and ethical challenges of an 'inclusive' research approach.
Researching health inequalities with Community Researchers: practical, methodological and ethical challenges of an 'inclusive' research approach.
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与社区研究人员一起研究健康不平等：“包容性”研究方法的实践、方法和伦理挑战。
DOI：
10.1186/s40900-015-0009-4
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发表时间：
2015
影响因子：
--
通讯作者：
Ferguson B
中科院分区：
文献类型：
--
作者：
Salway S;Chowbey P;Such E;Ferguson B
公共卫生研究有时使用社区成员作为研究人员。这些人被称为社区研究人员。使用社区研究人员的优势是，它使居住在社区的人能够通过设计研究、收集数据和参与分析来参与研究。这种“参与式”方法也有可能接触到原本可能不包括在研究中的社区。很少有研究报道社区研究人员参与此类研究的经历。这项研究通过探索社区研究人员在英国伦敦东部种族混杂地区的健康和贫困研究中面临的问题和挑战，帮助填补了这一空白。通过12名研究人员的描述，这项研究揭示了作为社区“内部人士”的优势：许多人认为他们能够赢得受访者的信任，并为原本可能会错过的研究接触到人们。然而，社区研究人员的角色很难管理，因为一些研究人员感到他们的角色和他们对社区中那些人的生活的了解的增加给他们带来了负担。除了社区研究人员面临的个人挑战外，研究结果还提出了在参与性研究中需要考虑的各种伦理和方法问题。背景：公共卫生研究人员越来越多地采用包容性研究方法。最近的方法论发展包括社区研究人员(CRS)的参与，他们利用他们的知识和网络来促进与他们认同的社区的研究。很少有研究探讨CRS在研究过程中的经验，这是对此类研究努力的利弊进行全面评估的重要因素。我们在这里报道CRS参与了一项关于英国伦敦种族多元化和贫困地区的健康不平等和贫困的研究。方法总结12例慢性阻塞性肺疾病的经验。生成、分析和综合了两组数据：在整个18个月的研究过程中进行汇报/积极反思，以及在项目结束时对研究和研究中心进行个别定性访谈(n = 9)。使用NVivo10组织数据，并使用迭代开发的框架逐行编码。综合和口译是通过一系列反思性团队练习实现的，涉及4个CRS的投入。主要主题的最后合并工作由社会保障司和经济司进行。结果作为社区的“局内人”给研究过程带来了明显的优势，但也产生了复杂性。CRS强调，如果没有他们的参与，将会失去一些东西，但在收集和分析数据方面仍然面临挑战。一些CRS发现很难练习反身性，并暴露出种族刻板印象的问题。作为社区成员和调查员的角色之间的冲突有时是有问题的。这种方法促进了个人赋权的某些方面，但CRS对这项研究在地方一级的有限影响感到沮丧。结论与CRS合作为公共卫生研究人员提供了明显的实用、伦理和方法论优势，但这些优势受到一系列挑战的限制，这些挑战与“封闭性”、正统的研究结构和实践以及动态身份的复杂性有关。为使这类研究充分发挥其潜力并避免危害，需要认真支持CRS，并需要资助者、研究机构和社区之间的长期参与。
Public health research sometimes uses members of communities as researchers. These are called Community Researchers. The advantage of using Community Researchers is that it enables people who live in communities to participate in research by designing the research, gathering data and being involved in analysis. This ‘participatory’ approach also has the potential to reach communities that might otherwise not be included in research. There are few studies that report the experiences of Community Researchers who take part in such research. This study helps fill this gap by exploring the issues and challenges faced by Community Researchers involved in a study of health and poverty in ethnically mixed areas of east London, UK. Through the accounts of 12 researchers, the study reveals that being a community ‘insider’ had advantages: many felt they had been able to gain the trust of respondents and access people for the research that would have otherwise been missed. The role of Community Researcher was, however, difficult to manage with some researchers feeling burdened by their role and the increased knowledge they had about the lives of those in their community. In addition to the personal challenges for the Community Researchers, the findings raise various ethical and methodological issues that need consideration in participatory research. Background Inclusive research approaches are increasingly employed by public health researchers. Recent methodological development includes the engagement of Community Researchers (CRs), who use their knowledge and networks to facilitate research with the community with which they identify. Few studies have explored the experiences of CRs in the research process, an important element of any comprehensive assessment of the pros and cons of such research endeavours. We report here on the experiences of CRs engaged in a study of health inequalities and poverty in ethnically diverse and disadvantaged areas of London, UK. Methods We draw on the experiences of 12 CRs. Two sets of data were generated, analysed and integrated: debriefing/active reflection exercises throughout the 18-month research process and individual qualitative interviews with CRs, conducted at the end of the project (n = 9). Data were organised using NVivo10 and coded line-by-line using a framework developed iteratively. Synthesis and interpretation were achieved through a series of reflective team exercises involving input from 4 of the CRs. Final consolidation of key themes was conducted by SS and ES. Results Being an ‘insider’ to the communities brought distinct advantages to the research process but also generated complexities. CRs highlighted how ‘something would be lost’ without their involvement but still faced challenges in gathering and analysing data. Some CRs found it difficult to practice reflexivity, and problems of ethnic stereotyping were revealed. Conflict between roles as community members and investigators was at times problematic. The approach promoted some aspects of personal empowerment, but CRs were frustrated by the limited impact of the research at the local level. Conclusions Working with CRs offers distinct practical, ethical and methodological advantages to public health researchers, but these are limited by a range of challenges related to ‘closeness’, orthodox research structures and practices and the complexities of dynamic identities. For research of this type to meet its full potential and avoid harm, there is a need for careful support to CRs and long-term engagement between funders, research institutions and communities.