Salway Sarah, Chowbey Punita, Such Elizabeth, Ferguson Beverly
Health Equity and Inclusion Research Group, School of Health & Related Research, University of Sheffield, Sheffield, UK.
Centre for Health and Social Care Research, Sheffield Hallam University, Sheffield, UK.
Res Involv Engagem. 2015 Aug 13;1:9. doi: 10.1186/s40900-015-0009-4. eCollection 2015.
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.
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. 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 ( = 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. 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. 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.
公共卫生研究有时会将社区成员用作研究人员。这些人被称为社区研究人员。使用社区研究人员的优势在于,它能使社区居民通过设计研究、收集数据以及参与分析来参与研究。这种“参与式”方法还有可能触及那些原本可能不会被纳入研究的社区。很少有研究报告参与此类研究的社区研究人员的经历。本研究通过探究参与英国伦敦东部种族混合地区健康与贫困研究的社区研究人员所面临的问题和挑战,填补了这一空白。通过12位研究人员的叙述,该研究表明身为社区“内部人士”具有优势:许多人觉得他们能够赢得受访者的信任,并接触到那些否则可能会被遗漏的人以进行研究。然而,社区研究人员的角色难以管理,一些研究人员感到自身角色以及他们对社区居民生活了解的增加给自己带来了负担。除了社区研究人员面临的个人挑战外,研究结果还提出了参与式研究中需要考虑的各种伦理和方法问题。
公共卫生研究人员越来越多地采用包容性研究方法。最近的方法学发展包括让社区研究人员(CRs)参与其中,他们利用自己的知识和网络来推动与其认同的社区进行研究。很少有研究探讨社区研究人员在研究过程中的经历,而这是全面评估此类研究利弊的任何综合评估的重要组成部分。我们在此报告参与英国伦敦种族多样且处境不利地区健康不平等与贫困研究的社区研究人员的经历。我们借鉴了12位社区研究人员的经历。生成、分析并整合了两组数据:在为期18个月的研究过程中的汇报/积极反思练习,以及在项目结束时对社区研究人员进行的个人定性访谈(n = 9)。使用NVivo10对数据进行整理,并使用迭代开发的框架逐行编码。通过一系列有4位社区研究人员参与的反思团队练习实现了综合与解读。SS和ES对关键主题进行了最终整合。作为社区的“内部人士”给研究过程带来了明显优势,但也产生了复杂性。社区研究人员强调了没有他们的参与“会失去某些东西”,但在收集和分析数据方面仍面临挑战。一些社区研究人员发现难以做到自我反思,并且揭示了种族刻板印象的问题。社区成员与调查人员角色之间的冲突有时会造成问题。该方法促进了个人赋权的某些方面,但社区研究人员对研究在地方层面的有限影响感到沮丧。与社区研究人员合作给公共卫生研究人员带来了明显的实践、伦理和方法优势,但这些优势受到一系列与“亲近性”、传统研究结构和实践以及动态身份的复杂性相关的挑战的限制。为了使这类研究充分发挥潜力并避免危害,需要对社区研究人员给予仔细的支持,以及资助者、研究机构和社区之间的长期合作。