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

• 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
• 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

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1620万成年人被认为是聋人或重听人(DHH)，1280万人 世卫组织报告有严重视力困难(即失明/视力障碍[B/VI])。有感觉障碍的人 (PWSD)是一个日益优先考虑的人群，因为存在显著的健康差距，包括精神状况较差 健康和身体健康。尽管健康状况较差，PWSD仍在与未得到满足的医疗需求、困难作斗争 获取和导航卫生保健以及管理他们的健康方面的挑战。健康教育及健康教育 推广计划，包括消费者健康信息资源，通常无法访问和 为这些人量身定做的，加剧了上述不平等。此外，可获得的卫生资源，如 由于“DeafHealth.org”和MedlinePlus上的ASL视频不再可用。先前的研究表明， PWSD面临健康素养不足、获取信息资源较差以及不平等的风险 提前制定护理计划，预防和管理糖尿病。因此，其主要目标是 本NLMG08信息资源提案旨在开发数字和非数字患者的最佳实践 为PWSD提供健康教育，并通过编写关于以下方面的材料来演示这些最佳实践 先进的护理计划和糖尿病预防。这将通过三个目标来实现。(一)考核 PWSD的信息和可访问性需求，以确定以患者为中心的最佳设计 健康教育；(2)制定以病人需求为中心的健康教育评估清单 PWSD；和(3)展示核对表作为制定和管理的指南的效用 针对PWSD患者的可获得性健康教育侧重于提前护理计划和糖尿病。去指导 上述工作，一个由感觉障碍患者和图书馆管理员组成的咨询委员会为这些患者服务 有感官障碍的人将被召集。该咨询委员会的代表将为该项目提供建议 团队，提供以感官障碍者无障碍需求为中心的专业知识，并协助 并对材料进行了审查。这些信息将用于生成核对表和练习 对健康教育计划和信息资源开发人员的建议，以满足 康乐及文化事务署经历健康差异及遵从残疾人士的独特健康教育需求 以民权为基础的法律(1973年《康复法》第504条，涵盖联邦资助 方案；1990年美国残疾人法案(ADA)和2008年ADA修正案法案；以及 1557和2010年《患者保护和平价医疗法案》的其他条款) 可获得的健康教育材料。