Examining the Health Status and Needs of Older Women with Mental Retardation (Qualitative)

Carol J. Gill, Ph.D. & Allison A. Brown
University of Illinois at Chicago, 2002

What the Project is About:
Questions about health have always been important in research. People who do health research have tried to find out answers to questions such as: “How can we stay healthy as we grow older?” In the past, many researchers looked mostly at men without disabilities. They did not include women or people with disabilities when they asked questions for their studies. Women with developmental disabilities were almost never included in research about health and growing older.
The way we want to do health research now is different then the way it was done before, because we see that there are problems when you leave people out. In the same way that older and younger people can have different health needs, women’s and men’s health needs can be different, and people with disabilities and without disabilities can have different health needs, too. As researchers, we want to start paying more attention to women with disabilities - all kinds of disabilities, not just the physical ones.

One way to learn about the health of women with developmental disabilities is to talk with them in small groups, called focus groups. In focus groups, we can ask them different questions than what the survey asks, and find out more about their experiences and feelings. We can record the information in their own words, too. Together, the survey information and focus group information will help us understand their health needs better.

The Goals of Our Project:
1) To describe the health problems, needs, experiences and activities of older women with developmental disabilities.
2) To offer information about the health needs of older women with developmental disabilities to everyone who needs it, such as health professionals, family members, advocates and others.
Last year, we looked at information from the focus groups we ran in the first and second year and shared this information with different professional groups around the country. We wrote and published a paper and a book chapter on women’s health and aging with developmental disabilities. In the year ahead, we plan to finish writing papers which will describe what the women had to say about their health, what it means to them as they get older, why we think it is important to study, and what we think could be done to make things better. We also will be writing about how we got the information (our method) and what works or doesn’t work in focus groups with women with developmental disabilities. As we complete these reports, we will start to put together ideas for training health professionals and others who would like to learn more about the health experiences of women with developmental disabilities. For example, we are thinking about putting together training information which will include:
  • Fact sheets
  • Short articles
  • Lectures
  • Video Clips
  • Quizzes

How You Can Help:
  • You can look at the some of the reports and articles we have written. Let us know what pieces you think are most important to write more about, and how to make the information more interesting for self-advocates and families.
  • Help us decide which ideas will be most important for training health professionals and others who need to learn more about the health of women with developmental disabilities.
  • Share your ideas with us about the best ways to present this information to health professionals and others.
  • Later this year, we would like help from women with developmental disabilities in creating our training materials. If you, or someone you know, (a woman with developmental disability) would like to help, please let us know.

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