On Wednesday, April 4th Dr. Susan Parish, director of the Lurie Institute at Brandeis University, presented the results of her NIDRR-funded Field Initiated Project at the NIDRR offices in Washington, D.C. and was made available by call-in for individuals unable to attend in person. The presentation reported findings from a three-year study funded by the National Institute on Disability and Rehabilitation Research (NIDRR), to improve cervical and breast cancer screening rates for women with intellectual and developmental disabilities. The NIDRR Presents is an on-going program featuring grantees, projects, and research within the NIDRR network that is especially noteworthy.
Existing research suggests that women with developmental disabilities (DD) have among the worse rates of cervical cancer and breast cancer screening in the U.S. Dr. Parish and her research team worked with partner sites (i.e. community rehabilitation programs, developmental service providers, community colleges, etc.) to implement the health promotion intervention within the community called “Women Be Healthy.” Women Be Healthy is a series of 90-minute psycho-educational classes conducted once/weekly for seven weeks of instruction with “graduation” in the eighth week. Course content includes information on anatomy, cancer, importance of screenings, communicating with health care providers, a field trip to a GYN office, and other activities.
Dr. Parish discussed the research protocols used for the randomized control trial and sub-studies of Women Be Healthy and the use of participatory action research method by including women with DD on the research team, advisory board, and other partnerships. A specific emphasis was given to recruitment, consent, and interview procedures as well as knowledge translation activities. The randomized control trial focused on additional areas aside from implementation of the Women Be Healthy intervention itself. Researchers also attempted to identify screening barriers and verify true screening rates by examining medical records and speaking with caregivers. Disparities in screening due to racial components were also examined. Researchers worked closely with and provided extensive training to the advisory board which included women with developmental disabilities. The advisory board prioritized audiences and the mechanisms of dissemination to include the Women Be Healthy website, YouTube, and Facebook with attention to resources that could be easily understood by individuals with reading difficulties. The researchers found that the Women Be Healthy intervention was modestly affective in increasing women’s knowledge about breast cancer screening but ineffective in increasing women’s knowledge concerning cervical cancer. The findings and feedback are being used to develop and determine the feasibility and acceptability for a follow-up Women Be Healthy 2 initiative. Thus far, Women Be Healthy 2 has been field tested in seven sites with approximately 40 women with DD; preliminary evidence indicates both the women and instructors like the new content and format. The research indicated that developing an intervention targeted for caregivers is critically important since family and paid caregivers play a major role in women’s access to care. A multi-modal approach is suggested to engage stakeholders through workshops, health fairs, smart phone applications, website content, mailings, DVDs, and other multi-media outlets such as Facebook and YouTube.
For information and to visit the Women Be Healthy website please go to http://lurie.brandeis.edu/women/index.html. The website includes specific sections/information for women with disabilities, caregivers, health care professionals, and researchers. To view the recently launched Women Be Healthy Facebook site, please visit https://www.facebook.com/womenbehealthy.