Improving the health of women with developmental disabilities

Background: Approximately 7% of women in the United States have a diagnosis of mild to moderate cognitive impairment. Knowledge about health issues and skills with self-advocacy are limited in this population.

Methods: We implemented a two-part program consisting of eight monthly hands-on, interactive education sessions, followed by ten monthly support groups to reinforce material. All material was based on a foundation of self-determination. Content included breast health, pelvic exams, physician visits, relaxation, diet and exercise. Women developed individual health plans and set personal goals which were discussed and updated at every meeting. Participant observation and field notes were collected to evaluate outcomes and content analysis used to examine data.

Results: Over a two year period, 39 number of women from four facilities participated in the program. Three themes were apparent throughout the data: women thrive with positive attention, working with women who have varying levels of disabilities provides a positive experience for all, and staff benefit from training as much as women with disabilities.

Conclusion: The goal of self-efficacy for women with cognitive disabilities around issues of personal health is time-consuming but very possible. The high acceptance of program content by women and staff indicated an unmet need in this population.

Discussion: Program acceptance and success has led us to begin work in two new areas: sustainability and staff training.