Frankena Tessa Kim, Naaldenberg Jenneken, Cardol Mieke, Linehan Christine, van Schrojenstein Lantman-de Valk Henny
Radboud university medical center, Department of Primary and Community Care - Intellectual Disabilities and Health, P.O. Box 9101 (route 68), 6500 HB Nijmegen, The Netherlands.
University of Applied Sciences, Research Centre Innovations in Care, P.O. Box 25035, 3001 HA Rotterdam, The Netherlands.
Res Dev Disabil. 2015 Oct-Nov;45-46:271-83. doi: 10.1016/j.ridd.2015.08.004. Epub 2015 Aug 26.
Actively involving people with intellectual disabilities (ID) in health research, also known as inclusive health research, is increasingly popular. Currently, insight into experiences of this type of research is scarce. To gain insight into this topic, a structured literature review was conducted focussing on (1) existing theories, (2) inclusive methods, (3) added value and (4) barriers and facilitators. Literature published between January 2000 and January 2014 was included covering keywords related to ID and inclusive health research. Searches were performed in Pubmed, CINAHL, PsycINFO, EMBASE and MEDLINE databases, resulting in 26 included papers. Papers were quality assessed and analysed using qualitative data analysis software. Four theories were often simultaneously addressed: participatory research, emancipatory research, inclusive research and Arnstein's ladder. Barriers and facilitators could be divided into preparing, undertaking and finalising phases of research. Authors indicated that their motivation to conduct inclusive health research was based on demands by policy and funding bodies or was based on ethical considerations (i.e., ethical notions and giving people with ID a voice). Upon completion, authors perceived increased quality and validity of their research and several benefits for stakeholders (i.e., people with ID, researchers and healthcare professionals). Overall, there was consistency in their perception of the most important aspects of inclusive health research. Based on the analysis of included papers, four recommendations of inclusive health research with people with ID were found. Inclusive health research should be: (1) tailoring to the specific study; (2) anticipating all stakeholders; (3) considering its added value; and (4) providing insight into its process.
让智障人士积极参与健康研究，即所谓的包容性健康研究，正越来越受到欢迎。目前，对于这类研究的经验了解甚少。为了深入了解这一主题，我们进行了一项结构化文献综述，重点关注：（1）现有理论；（2）包容性方法；（3）附加值；（4）障碍和促进因素。纳入了2000年1月至2014年1月期间发表的涵盖与智障和包容性健康研究相关关键词的文献。在PubMed、CINAHL、PsycINFO、EMBASE和MEDLINE数据库中进行了检索，最终纳入26篇论文。使用定性数据分析软件对论文进行质量评估和分析。有四种理论经常同时被提及：参与式研究、解放性研究、包容性研究和阿恩斯坦的阶梯理论。障碍和促进因素可分为研究的准备、开展和完成阶段。作者指出，他们开展包容性健康研究的动机基于政策和资助机构的要求，或者基于伦理考量（即伦理观念以及让智障人士发声）。研究完成后，作者认为研究的质量和有效性有所提高，并且对利益相关者（即智障人士、研究人员和医疗保健专业人员）有诸多益处。总体而言，他们对包容性健康研究最重要方面的看法具有一致性。基于对纳入论文的分析，得出了针对智障人士进行包容性健康研究的四条建议。包容性健康研究应：（1）根据具体研究进行调整；（2）考虑所有利益相关者；（3）考虑其附加值；（4）深入了解其过程。
