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.

提供患者教育材料以满足患者的需求， 感官残疾 至少有1620万成年人认为自己是聋人或听力障碍者（DHH），1280万人认为自己是聋人或听力障碍者。 他们报告有明显的视力困难（即，失明/视力受损[B/VI]）。感官障碍者 （PWSD）是一个日益增长的优先人口，由于显着的健康差距，包括较差的精神 健康和身体健康。尽管健康状况较差，但PWSD仍在努力满足未满足的医疗需求， 获得和驾驭医疗保健以及管理健康的挑战。健康教育和 推广计划，包括消费者健康信息资源，往往是无法访问的， 为这些人量身定制，加剧了上述不平等。此外，可获得的卫生资源，如 因为“DeafHealth.org“和MedlinePlus上的ASL视频不再可用。先前的研究表明， PWSD面临健康知识不足、获取信息资源较差和不平等的风险 提前进行护理规划和糖尿病预防和管理。因此， 这个NLM G 08信息资源提案是为了发展数字化和非数字化患者的最佳实践 为残疾人士提供健康教育，并制作有关 先进的护理规划和糖尿病预防。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，以便为患者确定以用户为中心的最佳设计 健康教育;（2）制定患者健康教育评估清单， PWSD;以及（3）展示清单在开发和管理 为PWSD提供无障碍的患者健康教育，重点是提前护理计划和糖尿病。引导 上述工作，一个咨询委员会的病人与感官残疾和图书馆员或服务于这些 将召开一次会议。该咨询委员会的代表将为该项目提供咨询意见 团队，提供专业知识，集中感官残疾人的无障碍需求，并协助 审查材料。这些信息将用于生成检查表和练习 健康教育计划和信息资源开发商的建议，以满足 PWSD的独特健康教育需求经历了健康差异，并符合残疾 根据民权法（1973年康复法第504条，其中包括联邦资助的 1990年《美国残疾人法案》（ADA）和2008年《ADA修正案》; 1557和2010年患者保护和平价医疗法案的其他规定）， 提供卫生教育材料。