Partnering with Women with Disabilities to Develop a Health Information Website

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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.