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Opportunities and challenges in public and community engagement: the connected for cognitive health in later life (CHILL) project
Research Involvement and Engagement Pub Date : 2018-11-19 , DOI: 10.1186/s40900-018-0127-x
Caroline Lee 1 , Tom Mellor 2 , Peggye Dilworth-Anderson 3 , Tiffany Young 4 , Carol Brayne 5 , Louise Lafortune 5
Affiliation  

Two goals of public health research are to understand what causes disease and ill health, and what can be done to prevent it. To develop appropriate and effective actions, we need to know what resources are available to communities, and what are the beliefs and values that influence behaviour. This means that research needs to be carried out close to the people it affects, to better understand context and environment, as well as people’s understandings and interpretations of health and health risk. Connected for Cognitive Health in Later Life (CHILL) was a project developed to test whether engaging local residents in research might be a good way of firstly: raising awareness of research findings in the community; and secondly, affecting mid-life behaviours in favour of ageing well and reducing risk of dementia. We investigated perceptions of ageing and how to age ‘well’ in a town whose population health is ranked worse than the regional average. Project activities involved: identifying and engaging with stakeholders; conducting ‘mini’ street interviews; holding community workshops; and taking part in a large community event. This paper describes the process of carrying out the research, and presents a flavour of some of the information captured on context and local understanding of dementia risk. It then goes on to discuss in more depth some of the challenges in attempting to involve people in shaping research and intervention development, before offering some conclusions and suggested next steps for researchers. Background Identifying risk of disease and ill health, and developing prevention strategies, are key objectives in public health research. However, poor understanding of the impact of local context, including cultural and ethnic differences, challenges our ability to develop actions that are acceptable and meaningful to local communities. This suggests a need for research embedded in sub-populations, seeking to better understand context, understanding and interpretation of health and health risk. Methods Against a backdrop of wide inequalities in health, the Connected for Cognitive Health In Later Life (CHILL) project began work in a locality with worse than regional average health outcomes aiming to co-develop a project investigating perceptions of ageing and how to age ‘well’. Another goal was to test the potential for using Community Based Participatory Research (CBPR) as a way of communicating research knowledge, raising awareness and understanding amongst community members of mid-life risk factors for developing dementia. A four-part scoping study was embarked on, including: stakeholder identification and engagement; street interviews; community workshops; and a wider public engagement event. Results Whilst the project was able to stimulate interest, gain involvement from a small group of residents, and successfully engage members of the public, it was not possible, within the relatively short timescale of the scoping project, to achieve the depth of community involvement necessary to co-design and seek additional funding for collaborative research activities. Conclusions A number of challenges were encountered in scoping CBPR on this particular topic and location. Potential explanations include lack of ‘readiness’ or ‘capacity’ amongst the local population, and a very limited timescale for the scoping research to adapt and respond to this. This has significant implications in terms of time and effort necessary to build infrastructure to support research partnerships if researchers wish to engage successfully with members of the public on population health in the future.

中文翻译:

公众和社区参与的机遇和挑战:晚年认知健康连接 (CHILL) 项目

公共卫生研究的两个目标是了解导致疾病和健康状况不佳的原因,以及可以采取哪些措施来预防它。为了制定适当和有效的行动,我们需要了解社区可以使用哪些资源,以及影响行为的信念和价值观是什么。这意味着研究需要在其影响的人群附近进行,以更好地了解背景和环境,以及人们对健康和健康风险的理解和解释。Connected for Cognitive Health in Late Life (CHILL) 是一个项目,旨在测试让当地居民参与研究是否是一种好方法,首先:提高社区对研究结果的认识;其次,影响中年行为,有利于老龄化和降低痴呆症的风险。我们调查了人口健康排名低于区域平均水平的城镇对老龄化的看法以及如何“健康”地老龄化。所涉及的项目活动:识别利益相关者并与之互动;进行“迷你”街头采访;举办社区研讨会;并参加大型社区活动。本文描述了开展研究的过程,并介绍了在背景和当地对痴呆风险的理解中捕获的一些信息的味道。然后,它继续更深入地讨论一些试图让人们参与塑造研究和干预发展的挑战,然后提供一些结论并为研究人员提出下一步建议。背景 识别疾病和健康不佳的风险,并制定预防策略,是公共卫生研究的关键目标。然而,对当地环境影响(包括文化和种族差异)的了解不足,挑战了我们制定当地社区可接受和有意义的行动的能力。这表明需要对亚人群进行研究,以寻求更好地理解背景、理解和解释健康和健康风险。方法 在健康广泛不平等的背景下,晚年认知健康连接 (CHILL) 项目开始在一个健康状况低于区域平均水平的地区开展工作,旨在共同开发一个项目,调查对老龄化和如何老龄化的看法。好吧'。另一个目标是测试使用基于社区的参与式研究 (CBPR) 作为交流研究知识、提高社区成员对发展为痴呆的中年风险因素的认识和理解的一种方式的潜力。开始了一项由四部分组成的范围研究,包括:利益相关者的识别和参与;街头采访;社区研讨会;以及更广泛的公众参与活动。结果 虽然该项目能够激发兴趣,获得一小部分居民的参与,并成功地吸引公众成员参与,但在范围界定项目相对较短的时间范围内,不可能达到必要的社区参与深度共同设计并为合作研究活动寻求额外资金。结论 在针对这一特定主题和地点确定 CBPR 的范围时遇到了许多挑战。潜在的解释包括当地人口缺乏“准备”或“能力”,以及范围界定研究适应和应对这一问题的时间非常有限。如果研究人员希望在未来就人口健康问题与公众成功接触,那么这对于建立基础设施以支持研究伙伴关系所需的时间和精力具有重大意义。
更新日期:2018-11-19
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