Gloria Krahn, Oregon State University.
Katherine Cargill-Willis, Administration for Community Living.
Intellect Dev Disabil. 2023 Oct 1;61(5):368-384. doi: 10.1352/1934-9556-61.5.368.
Through focus groups, adults with intellectual and developmental disabilities (IDD) provided their priorities for health equity data, surveys, and information dissemination by U.S. federal agencies. Participants reported privacy concerns about sharing information, need for better data to promote access to quality health care and services, and need for information on social contexts that influence quality of life. Data should include functional limitations, health risks, and priorities for health care, and should support choice and self-determination. Adults with IDD believe parents or support persons do not always share their views, raising concerns about proxy reporting. Surveys and information need to use clear language, visual aids, and provide neutral supports. Information should be shared broadly, including to persons with IDD and families, health care professionals, and policy makers.
通过焦点小组，智力和发育障碍（ID）成年人提出了他们对美国联邦机构的健康公平数据、调查和信息传播的优先事项。参与者报告了对分享信息的隐私问题，需要更好的数据来促进获得优质的医疗保健和服务，以及需要有关影响生活质量的社会背景的信息。数据应包括功能限制、健康风险和医疗保健的优先事项，并应支持选择和自决。智力和发育障碍成年人认为父母或支持人员并不总是分享他们的观点，这引发了对代理报告的担忧。调查和信息需要使用清晰的语言、视觉辅助工具，并提供中立的支持。信息应该广泛分享，包括与智力和发育障碍者及其家人、医疗保健专业人员和政策制定者分享。
