Nicolaidis Christina, Raymaker Dora, Katz Marsha, Oschwald Mary, Goe Rebecca, Leotti Sandra, Grantham Leah, Plourde Eddie, Salomon Janice, Hughes Rosemary B, Powers Laurie E
Prog Community Health Partnersh. 2015 Summer;9(2):157-70. doi: 10.1353/cpr.2015.0037.
People with developmental disabilities (DD) are often not included as participants in research owing to a variety of ethical and practical challenges. One major challenge is that traditional measurement instruments may not be accessible to people with DD. Participatory research approaches promise to increase the participation of marginalized communities in research, but few partnerships have successfully used such approaches to conduct quantitative studies people with DD.
To use a community-based participatory research (CBPR) approach to create an accessible, computer-assisted survey about violence and health in people with DD, and to psychometrically test adapted health instruments.
Our academic-community partnership, composed of academic researchers, people with DD, and supporters, collaboratively selected and modified data collection instruments, conducted cognitive interviews and pilot tests, and then administered the full survey to 350 people with DD.
Although team members sometimes had opposing accommodation needs and adaptation recommendations, academic and community partners were able to work together successfully to adapt instruments to be accessible to participants with a wide range of DD. Results suggest the adapted health instruments had strong content validity and all but one had good to excellent internal consistency reliability (alpha, 0.81-0.94). The majority of participants (75%) responded that all or most of the questions were easy to understand.
Researchers should consider using participatory approaches to adapting instruments so people with DD can be validly included in research.
由于各种伦理和实际挑战，发育障碍（DD）患者往往未被纳入研究参与者范围。一个主要挑战是传统测量工具可能不适用于DD患者。参与式研究方法有望增加边缘化社区在研究中的参与度，但很少有合作成功运用此类方法对DD患者进行定量研究。
采用基于社区的参与式研究（CBPR）方法，创建一份关于DD患者暴力与健康情况的无障碍计算机辅助调查问卷，并对改编后的健康测量工具进行心理测量学测试。
我们的学术 - 社区合作团队由学术研究人员、DD患者及支持者组成，共同选择并修改数据收集工具，进行认知访谈和预测试，然后对350名DD患者进行全面调查。
尽管团队成员有时在便利需求和改编建议上存在分歧，但学术和社区合作伙伴能够成功合作，使工具适用于各类DD患者。结果表明，改编后的健康测量工具具有很强的内容效度，除一项外，其他工具的内部一致性信度均良好至优秀（α系数，0.81 - 0.94）。大多数参与者（75%）表示所有或大部分问题都易于理解。
研究人员应考虑采用参与式方法来改编测量工具，以便DD患者能够有效纳入研究。
