Brizay Ulrike, Golob Lina, Globerman Jason, Gogolishvili David, Bird Mara, Rios-Ellis Britt, Rourke Sean B, Heidari Shirin
International, AIDS Society, Geneva, Switzerland;
International, AIDS Society, Geneva, Switzerland.
J Int AIDS Soc. 2015 Jan 27;18(1):19354. doi: 10.7448/IAS.18.1.19354. eCollection 2015.
Community involvement in HIV research has increased over recent years, enhancing community-academic partnerships. Several terms have been used to describe community participation in research. Clarification is needed to determine whether these terms are synonymous or actually describe different research processes. In addition, it remains unclear if the role that communities play in the actual research process follows the recommendations given in theoretical frameworks of community-academia research.
The objective of this study is to review the existing terms and definitions regarding community-academic partnerships and assess how studies are implementing these in relation to conceptual definitions.
A systematic literature review was conducted in PubMed. Two reviewers independently assessed each article, applying the following inclusion criteria: the article must be published in English before 2013; it must provide an explicit definition and/or defining methodology for a term describing research with a community component; and it has to refer to HIV or AIDS, reproductive health and/or STDs. When disagreements about the relevance of an article emerged, a third reviewer was involved until concordance was reached. Data were extracted by one reviewer and independently verified by a second. Qualitative data were analyzed using MaxQDA for content and thematic analyses while quantitative data were analyzed using descriptive statistics. Community feedback on data analysis and presentation of results was also incorporated.
In total, 246 articles were retrieved, 159 of which fulfilled the inclusion criteria. The number of studies that included community participation in the field of HIV research increased between 1991 and 2012, and the terms used to describe these activities have changed, moving away from action research (AR) to participatory action research (PAR), community-based research (CBR) and community-based participatory research (CBPR), with the latter being the most commonly used term. While definitions of all terms had common characteristics (e.g. participation of community in research process), they varied with regard to the emphasis placed on these characteristics. The nature of community participation in reviewed studies differed considerably from that described in theoretical models.
This study indicates the increase of participatory approaches in HIV research and underlines the need for clarification of terms and a framework providing orientation to community-academia partnerships.
近年来，社区参与艾滋病病毒研究的情况有所增加，加强了社区与学术界的伙伴关系。人们使用了几个术语来描述社区参与研究的情况。需要加以澄清，以确定这些术语是同义词，还是实际上描述了不同的研究过程。此外，社区在实际研究过程中所发挥的作用是否遵循社区 - 学术界研究理论框架中给出的建议，这一点仍不明确。
本研究的目的是回顾有关社区 - 学术界伙伴关系的现有术语和定义，并评估各项研究在概念定义方面是如何实施这些术语和定义的。
在PubMed上进行了系统的文献综述。两名评审员独立评估每篇文章，应用以下纳入标准：文章必须在2013年之前以英文发表；它必须为描述包含社区成分的研究的术语提供明确的定义和/或定义方法；并且它必须提及艾滋病病毒或艾滋病、生殖健康和/或性传播疾病。当对某篇文章的相关性出现分歧时，会引入第三位评审员，直至达成一致。数据由一名评审员提取，并由另一名评审员独立核实。定性数据使用MaxQDA进行内容和主题分析，而定量数据则使用描述性统计进行分析。还纳入了社区对数据分析和结果呈现的反馈。
总共检索到246篇文章，其中159篇符合纳入标准。1991年至2012年间，艾滋病病毒研究领域中包含社区参与的研究数量有所增加，用于描述这些活动的术语也发生了变化，从行动研究（AR）转向参与式行动研究（PAR）、基于社区的研究（CBR）和基于社区的参与式研究（CBPR），后者是最常用的术语。虽然所有术语的定义都有共同特征（例如社区参与研究过程），但在对这些特征的强调方面存在差异。在综述研究中，社区参与的性质与理论模型中所描述的有很大不同。
本研究表明艾滋病病毒研究中参与式方法有所增加，并强调需要澄清术语以及为社区 - 学术界伙伴关系提供指导的框架。
