Gloria Krahn, Katherine Cargill-Willis, Lynda Bersani, Theresa Moore, Jennifer Johnson
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引用次数: 0
Abstract
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.
期刊介绍：
Intellectual and Developmental Disabilities is dedicated to meeting the information needs of those who seek effective ways to help people with mental retardation. The journal reports new teaching approaches, program developments, administrative tools, program evaluation, service utilization studies, community surveys, public policy issues, training and case studies, and current research in mental retardation. Intellectual and Developmental Disabilities is a peer-reviewed journal whose consulting editors represent a broad spectrum of settings: universities, research centers, public and private residential care facilities, and specialized community service agencies.
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