Claire Kalpakjian, PhD, MS
We are a group of researchers from fields such as rehabilitation psychology, neuropsychology, gynecology, and social work working together to examine important concerns related to women’s health specifically for women with disabilities.
The Program for Research on Women’s Health and Disability (PROWHD) in Michigan Medicine’s Department of Physical Medicine & Rehabilitation hopes to reduce barriers and empower women with disabilities by conducting research and sharing the results with patients and health care providers.
Our projects include:
- Developing a Clinically Relevant Outcome Measure for Women’s Health and Disability
- Developing Pregnancy Decision Making Tools for Women with Physical Disabilities
- Developing Pregnancy Decision Making Tools for Women with Spinal Cord Injury
- The Menopause Transition in Women with Traumatic Brain Injury
Women’s Health and Disability Research Registry
To help us reach as many potential participants as we can, we have created a large “registry” of women who are interested in being in current or future studies. To be on this list, you must be at least 18 years old and have a physical disability. Physical disability is defined as having some limitation in your mobility. It can be for any reason, like being injured, getting sick or being born with a disability. You can live anywhere in the United States to be in this Registry.
If you are interested joining this Registry, we will get some basic information from you, including a brief description of your disability and how you got your disability. Then we’ll put you in a list of other women like yourself and as new studies that you may be eligible for come up, we will contact you.
While we cannot guarantee you will be eligible for every future study, it is likely you will be contacted at least one time to see if you are interested in a new study
To learn more or join:
Developing a Clinical Outcome Measure for Women’s Health and Disability
This project, funded by the National Institutes of Health, is developing the first patient reported outcome that is exclusively focused on the health of women with physical disabilities. A patient reported outcome is information directly from the person themselves about a health problem or other situation. They are being used more and more in healthcare in addition to evaluation by a healthcare provider.
Nearly 6 million American women and girls have physical disabilities. Characterized by impaired mobility, physical disability creates many social, psychological and health challenges. Gynecological and reproductive health is essential to the overall health of all women. But, many women and girls with physical disabilities must endure environmental barriers and ill-informed systems of care to receive the health care they need. They also often face bias and discrimination when seeking the healthcare they deserve.
Our work will result in the first patient reported outcome ever developed to help physicians and other health care professionals understand the health related quality of life of their female patients with physical disabilities. It will also help women talk with their health care providers about their concerns that are sometimes hard to bring up.
We will regularly update this webpage with information about eligibility and recruitment and our progress.
Making Decisions about Pregnancy
Making a decision whether or not to get pregnant can be an exciting and scary time for anyone, but when a woman has a physical disability these emotions are often more intense. Although women with disabilities want to be mother’s as much as their peers without disabilities, they are much more likely to be uncertain about whether they will be able to.
When people make important decisions about their health, decision making tools can be helpful to learn important information about the decision and how it might affect them. It can also help promote shared decision making. Shared decision making means that the patient and the healthcare provider work together to decide the best course of action.
Women with disabilities often struggle to find good information about the risks of pregnancy or know the questions they need to ask and whom to ask. The new decision making tools we are creating will help women and their health care providers navigate this important decision.
We began two new projects in April 2018: one is funded by the National Institutes of Health and focuses on women with physical disabilities; the other is funded by the Craig H. Neilsen Foundation and focuses specifically on women with spinal cord injury.
We will regularly update this webpage with information about eligibility and recruitment and our progress on these studies.
The Menopause Transition in Women with Traumatic Brain Injury
This study was funded by the National Institute on Disability, Independent Living and Rehabilitation Research and was done in collaboration with the Rehabilitation Institute of Michigan and Wayne State University in Detroit, Michigan. This project explored the menopause transition among women with moderate to severe traumatic brain injuries.
Studying menopause has become increasingly popular in the last several decades. Although we now have a better understanding of the physical changes as well as the emotional and social aspects of the menopause experience, we know much less about how menopause is experienced in the context of disability. This is important because people survive serious injuries and illnesses more than ever before and go on to live a long life. For women, menopause is a normal transition in middle age.
In this study, we asked women with and without a traumatic brain injury about their menopause symptoms, and other things such as sleep quality, problems with sexual functioning, and gynecological history. As of May 2018, we are working with the TBI Model Systems to recruit more women with traumatic brain injury to reach our sampling goal (we met our target for women without traumatic brain injury!).
As soon as we have results, we will post them here!