Department of Public Health, Food Studies and Nutrition and the Burton Blatt Institute, Syracuse University, Syracuse, NY 13244, USA.
J Intellect Disabil Res. 2013 Mar;57(3):216-25. doi: 10.1111/j.1365-2788.2011.01527.x. Epub 2012 Feb 1.
Persons with intellectual and developmental disabilities have had regrettably few opportunities to voice their opinions on aspects of research with which they have had direct experience. Understanding and responding to these views can contribute to policies and practices that increasingly treat people as they desire to be treated.
We conducted individual interviews and focus groups with 16 adults with intellectual and developmental disabilities to examine their perspectives on participating in research.
Our analysis indicates that adults with intellectual and developmental disabilities want to engage in research to improve their quality of life and to have greater access to a worthwhile activity through more active participation. Our results also highlight trust as a critical ingredient in the success of research with this group.
Our findings suggest that despite ethical challenges, researchers can and should pursue research that has the potential to improve the lives of persons with intellectual and developmental disabilities. Such research is more likely to be both ethical and successful if researchers pay attention to enhancing autonomy and person-centredness, while at the same time engendering participant trust.
智障和发育障碍人士在直接参与的研究方面表达意见的机会少之又少，令人遗憾。了解并回应这些意见有助于制定政策和实践，使人们越来越能按照他们所期望的方式被对待。
我们对 16 名智障和发育障碍成人进行了个人访谈和焦点小组讨论，以探讨他们对参与研究的看法。
我们的分析表明，智障和发育障碍成人希望参与研究，以改善他们的生活质量，并通过更积极地参与获得更有意义的活动。我们的研究结果还突出了信任是该群体研究成功的关键因素。
我们的研究结果表明，尽管存在伦理挑战，但研究人员可以并且应该开展有可能改善智障和发育障碍人士生活的研究。如果研究人员注意增强自主性和以人为本，同时赢得参与者的信任，那么这种研究更有可能是符合伦理且成功的。
