Partnering with Women with Disabilities to Develop a Health Information Website

与残疾妇女合作开发健康信息网站

• 批准号: 9403850
• 负责人: ROSEMARY B HUGHES
• 金额: $ 1.89万
• 依托单位: MEMORIAL HERMANN HOSPITAL- TEXAS MED CTR
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-11-04 至 2018-03-15
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9403850
• 关键词: Academic Medical Centers; Appointment; Area; Breast; Characteristics; Clinic; Communities; Development; Diffusion of Innovation; Disease; Face; Family; Focus Groups; Goals; Gynecologist; Gynecology; Health; Health Insurance; Health Personnel; Health Professional; Health Promotion; Health care facility; Home environment; Impairment; Industry; Information Resources; Information Technology; Injury; Institutes; Insurance Coverage; Internet; Knowledge; Librarians; Libraries; Life; Link; Literature; Long-Term Effects; Medical; Medical center; Methodology; Modeling; Montana; Morbidity - disease rate; Needs Assessment; Outcome; Pelvic floor dysfunction; Pelvis; Pharmacology; Phase; Physically Handicapped; Population; Pregnancy; Process; Quality of life; Randomized; Readability; Recommendation; Reproductive Health; Research; Research Infrastructure; Research Personnel; Resources; Review Literature; Risk; Rural; Savings; Science; Services; Societies; Surveys; Techniques; Technology; Testing; Texas; Training; Training Programs; Underserved Population; Universities; Urologist; Woman; Women' s Health; aging population; community based participatory research; design; digital; disability; disparity reduction; experience; health care availability; health disparity; health literacy; improved; information seeking behavior; interest; literacy; mortality; pregnant; programs; public health relevance; reproductive; social health determinants; unintended pregnancy; usability; web site; women with disabilities

Partnering with Women with Disabilities to Develop a Health Information Website Women with disabilities are living longer with better quality of life as a result of advances in medical science, pharmacology, and technology. For those with access to those resources, the risks of morbidity and mortality have been significantly reduced. The problem is bringing this life- saving knowledge, particularly about women’s health, beyond academic medical centers to the clinics and homes of the women and their families. This project will partner closely with consumers, clinicians, researchers, and librarians in every phase of the development of an easily accessible, understandable, and usable online information resource on women's health in the context of disability, test its usability in an iterative process, and produce a user training program. For the past 25 years, the Center for Research on Women with Disabilities (CROWD) has documented disparities in health and access to healthcare experienced by the growing and seriously underserved population of women with disabilities; however, information is fragmented and there is little evidence that discoveries are benefiting the intended audience nationwide. For example, although more women with significant physical impairments are becoming pregnant, they continue to struggle with finding accessible healthcare facilities and providers who are knowledgeable and experienced in the effect of disability on pregnancy and delivery. While the long-term effects of pregnancy on pelvic health is a topic of growing interest to the aging population of women and gynecologists, the literature is almost completely silent on the pelvic health of women with disabilities. Postings on the CROWD website about current knowledge need to be expanded and converted into a fully interactive, searchable information resource, and its availability should be made known widely. The goal of this project is to improve the reproductive and pelvic health of women with disabilities. In partnership with the University of Montana, Texas Medical Center Library and a Community Advisory Board, and with review by clinicians and researchers, this project will create a health information website that is fully interactive and searchable by women with disabilities. The purpose of this website is to employ common information technology to empower women with disabilities to become self-informed about decisions related to health. Focus groups and a national survey of 500 women with physical disabilities will identify their information needs and use of digital technologies. Comprehensive literature reviews of reproductive health, pelvic health, breast health, and access to health care for women with disabilities will provide information to populate the website and produce downloadable topical summaries with links to other information resources. Second will be the development of a tailored training program for women with physical disabilities on how to use this website, with feasibility testing using face-to-face and online formats with 30 local women. This health information website and accompanying training program will promote health literacy, improve reproductive and pelvic health outcomes among women with disabilities, and reduce health disparities.

与残疾妇女合作开发健康信息网站 残疾妇女的寿命更长，生活质量更高，这是因为在以下方面取得了进展： 医学、药理学和技术。对于那些能够获得这些资源的人来说， 发病率和死亡率的风险已大大降低。问题是把这种生活- 保存知识，特别是关于妇女的健康，超越学术医疗中心， 妇女及其家庭的诊所和家庭。该项目将与 消费者，临床医生，研究人员和图书馆员在发展的每一个阶段， 容易获得、理解和使用的关于妇女健康的在线信息资源， 残疾的背景下，在迭代过程中测试其可用性，并生成用户培训 程序. 在过去的25年里，残疾妇女研究中心（CROWD） 有记录的健康和获得医疗保健方面的差距， 残疾妇女得到的服务严重不足;然而，信息零散 而且几乎没有证据表明，这些发现正在使全国范围内的目标受众受益。为 例如，尽管有更多身体严重缺陷的妇女怀孕， 他们继续努力寻找可获得的医疗保健设施和提供者， 在残疾对怀孕和分娩的影响方面有知识和经验。而 怀孕对骨盆健康的长期影响是老年人越来越感兴趣的话题 人口的妇女和妇科医生，文献几乎完全沉默的骨盆 残疾妇女的健康。CROWD网站上关于当前知识的帖子 需要扩展和转换为一个完全互动的，可搜索的信息资源， 并应广泛宣传其可用性。 该项目的目标是改善妇女的生殖和盆腔健康， 残疾。在与蒙大拿大学，得克萨斯州医学中心图书馆和一个 社区咨询委员会，并与临床医生和研究人员的审查，该项目将 建立一个健康信息网站，妇女可以充分互动和搜索， 残疾。本网站的目的是采用通用的信息技术， 增强残疾妇女的权能，使她们能够自行了解与健康有关的决定。 焦点小组和对500名身体残疾妇女的全国性调查将确定她们的 信息需求和数字技术的使用。全面的文献综述 生殖健康、骨盆健康、乳房健康，以及有生殖缺陷的妇女获得保健的机会 残疾人将提供信息，以填充网站，并产生可下载的专题 摘要与其他信息资源的链接。第二，发展一个 为身体残疾的妇女提供关于如何使用本网站的量身定制的培训计划， 与30名当地妇女进行面对面和在线形式的可行性测试。这个健康 信息网站和配套培训计划将促进健康素养，提高 残疾妇女的生殖健康和骨盆健康结果， 差距。