A quantitative study of attitudes toward the research participation of adults with intellectual disability: Do stakeholders agree?
A quantitative study of attitudes toward the research participation of adults with intellectual disability: Do stakeholders agree?
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DOI：
10.1016/j.dhjo.2017.12.004
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发表时间：
2018-07-01
影响因子：
4.5
通讯作者：
Olick, Robert S.
中科院分区：
文献类型：
--
作者：
McDonald, Katherine E.;Conroy, Nicole E.;Olick, Robert S.
背景资料：对智障成年人参与研究的态度告知研究政策和实践，影响对研究参与的兴趣和支持，并促进或阻止新知识的产生，以促进智障成年人的健康。然而，我们对公众和科学界的这些信念知之甚少。目的/假设：我们定量研究了智力残疾的成年人，家人和朋友，残疾服务提供者，研究人员和机构审查委员会（IRB）成员的态度。我们预测，智力残疾的成年人和研究人员会支持与残疾人权利最一致的观点，而IRB成员，以及在较小程度上的家庭，朋友和服务提供者，会支持更多的保护性views.Methods：我们调查了五个参与者利益相关者群体的512名成员对智力残疾成年人参与研究的态度。我们发现，对智力残疾人的研究得到了广泛的支持，尽管对他们直接参与其中的支持略有缓和。一般来说，IRB成员和在某种程度上有智力残疾的成年人比其他人更不赞成直接参与。我们还发现，智力残疾的成年人坚信他们的consent capability.Conclusions：资源应针对健康相关的研究与智力残疾的成年人，干预措施应追求解决道德挑战，促进信仰符合人权。(C)2017爱思唯尔公司All rights reserved.
Background: Attitudes toward the research participation of adults with intellectual disability inform research policy and practice, impact interest in and support for research participation, and promote or discourage the generation of new knowledge to promote health among adults with intellectual disability. Yet we know little about these beliefs among the public and the scientific community.Objective/Hypothesis: We quantitatively studied attitudes among adults with intellectual disability, family and friends, disability service providers, researchers, and Institutional Review Board (IRB) members. We predicted that adults with intellectual disability, and researchers would espouse views most consistent with disability rights, whereas IRB members, and to a lesser degree family, friends, and service providers, would espouse more protective views.Methods: We surveyed five hundred and twelve members of the five participant stakeholder groups on their attitudes toward the research participation of adults with intellectual disability.Results: We found broad support for research about people with intellectual disability, though slightly more tempered support for their direct participation therein. In general, IRB members and to some extent adults with intellectual disability endorsed direct participation less than others. We also found that adults with intellectual disability strongly believed in their consent capacity.Conclusions: Resources should be directed toward health-related research with adults with intellectual disability, and interventions should be pursued to address ethical challenges and promote beliefs consistent with human rights. (C) 2017 Elsevier Inc. All rights reserved.