DEVELOPING PATIENT EDUCATION MATERIALS TO ADDRESS THE NEEDS OF PATIENTS WITH SENSORY DISABILITIES

开发患者教育材料以满足感官障碍患者的需求

基本信息

批准号：
10721226
负责人：
Tyler G James
金额：
$ 15万
依托单位：
UNIVERSITY OF MICHIGAN AT ANN ARBOR
依托单位国家：
美国
项目类别：
财政年份：
2023
资助国家：
美国
起止时间：
2023-08-17 至 2026-07-31
项目状态：
未结题

来源：
https://reporter.nih.gov/project-details/10721226
关键词：
Access to Information Address Adult Advance Care Planning Affordable Care Act Amendment Americans with Disabilities Act Area Assessment tool Attention Behavior Blindness Caring Civil Rights Communication Communities Development Diabetes Mellitus Diabetes prevention Disabled Persons Disparity Education Educational Assessment Educational Materials Feedback Focus Groups Funding Guidelines Health Health Promotion Health Promotion and Education Health Resources Health education Health system Healthcare Healthcare Systems Individual Inequity Information Resources Internet Intervention Laws Learning Librarians Libraries Medical MedlinePlus Mental Health Methods Needs Assessment Online Systems Patient Education Patients Persons Population Printing Public Health Recommendation Rehabilitation therapy Reporting Research Resources Risk Sensory Surveys System United States Agency for Healthcare Research and Quality United States National Library of Medicine Vision Visual impairment Work blind deaf deafness design diabetes management digital digital health disability end of life care evidence base experience hard of hearing health disparity health disparity populations health equity health inequalities hearing impairment high risk improved indexing low health literacy marginalization medical services inaccessibility neglect physical conditioning poor health outcome programs reading difficulties tool usability user centered design web page web site

项目摘要

DEVELOPING PATIENT EDUCATION MATERIALS TO ADDRESS THE NEEDS OF PATIENTS WITH SENSORY DISABILITIES There are at least 16.2 million adults who identify as being deaf or hard-of-hearing (DHH) and 12.8 million who report significant vision difficulty (i.e., blind/vision impairment [B/VI]). People with sensory disabilities (PWSDs) are a growing priority population due to significant health disparities, including poorer mental health and physical health. Despite poorer health, PWSDs struggle with unmet medical needs, difficulties accessing and navigating health care and challenges with managing their health. Health education and promotion programs, including consumer health information resources, are often inaccessible and not tailored for these individuals, exacerbating above inequities. In addition, accessible health resources, such as ASL videos on “DeafHealth.org” and MedlinePlus, are no longer available. Prior research indicates that PWSDs are at risk for inadequate health literacy, poorer access to information resources, and disparities in advance care planning and diabetes prevention and management. Therefore, the primary objective of this NLM G08 information resource proposal is to develop best practices in digital and non -digital patient health education for PWSDs and demonstrate these best practices in use by developing materials on advance care planning and diabetes prevention. This will be accomplished through three aims. (1) Assess the information and accessibility needs of PWSDs to identify optimal user-centered design for patient health education; (2) Develop patient health education assessment checklists centering the needs of PWSDs; and (3) Demonstrate the utility of the checklists as guides in the development and curation of accessible patient health education for PWSDs focused on advance care planning and diabetes . To guide the above work, an Advisory Board of patients with sensory disabilities and librarians with or serving those with sensory disabilities will be convened. Representatives on this Advisory Board will advise the project team, provide expertise on centering the accessibility needs of people with sensory disabilities, and assist with review of materials. This information will be used to generate a checklist and practice recommendations for health educational programs and information resource developers in order to meet the unique health educational needs of PWSD experiencing health disparities and comply with disability based civil rights laws (Section 504 of the Rehabilitation Act of 1973, which covers federally funded programs; the 1990 Americans with Disabilities Act (ADA) and 2008 ADA Amendments Act; and Section 1557 and other provisions of the 2010 Patient Protection and Affordable Care Act) that mandate accessible health education materials.

开发患者教育材料以满足患者的需求感觉障碍至少有 1,620 万成年人被认为是耳聋或听力困难 (DHH)，还有 1,280 万成年人报告存在严重视力障碍（即失明/视力障碍 [B/VI]）的人。由于显着的健康差异，包括智力较差，残疾人士 (PWSD) 成为日益重要的优先人群尽管残疾人的健康状况较差，但他们仍面临着未得到满足的医疗需求和困难。获得和应对医疗保健以及管理健康教育和挑战。促销计划，包括消费者健康信息资源，往往难以获得，也无法获得为这些人量身定制的医疗资源，加剧了上述不平等。先前的研究表明，“DeafHealth.org”和 MedlinePlus 上的 ASL 视频已不再可用。残疾人士面临健康素养不足、信息资源获取渠道较差以及不平等的风险因此，护理计划和糖尿病的预防和管理是首要目标。此 NLM G08 信息资源提案旨在开发数字和非数字患者的最佳实践对残疾人士进行健康教育，并通过开发以下材料来展示这些最佳实践的使用这将通过三个目标来实现 (1) 评估。 PWSD 的信息和可访问性需求，以确定针对患者的最佳以用户为中心的设计（2）围绕患者需求制定患者健康教育评估清单残疾人士；(3) 展示清单作为开发和管理的指南的实用性为残疾人士提供方便的患者健康教育，重点是预先护理计划和糖尿病。上述工作，由感觉障碍患者和为这些患者提供服务的图书馆员组成的咨询委员会将召集有感官障碍的代表参加该咨询委员会，为该项目提供建议。团队，提供以感官障碍人士的无障碍需求为中心的专业知识，并协助审查材料后，该信息将用于生成清单和练习。为健康教育计划和信息资源开发人员提出建议，以满足患有健康差异并遵守残疾规定的残疾人士的独特健康教育需求基于民权法（1973 年《康复法》第 504 条，涵盖联邦资助的计划；1990 年《美国残疾人法案》(ADA) 和 2008 年《美国残疾人法案》修正案和章节；第 1557 条以及 2010 年《患者保护和平价医疗法案》的其他规定）易于获取的健康教育材料。