Study Results and Publications

This page describes the studies that UM PROWHD has conducted and includes information about the study results and related publications.

Developing a Clinically Relevant Outcome Measure for Women’s Health and Disability

Show Description of Infographic

Publication Information

 

This infographic summarizes one of our articles titled "Reproductive Health in Women with Physical Disability: A Conceptual Framework for the Development of New Patient-Reported Outcome Measures" published in the Journal of Women's Health. To read the official article you can go to https://doi.org/10.1089/jwh.2019.8174. Or, email us at [email protected] and we can send you the PDF.

This project was done in collaboration with researchers from the Kessler Foundation and NYU Langone Health.

Why did we do this study?

We did this study to create a conceptual framework. A conceptual framework is a representation of thoughts and ideas about a certain topic. Having this framework helps researchers better organize and understand complex topics. 

How did we do this study?

To learn more about the experiences of women with physical disabilities, we talked with a total of 81 women. We held numerous focus groups and individual interviews. Participants ranged in age, race/ethnicity, disability type and severity, and other characteristics.

What did we learn?

Women with physical disabilities talked about these reproductive health topics:

  • Pregnancy
  • Contraception
  • Sexuality
  • Pelvic Exams
  • Periods

A number of things have affected their reproductive health care experiences:

  • Having a trusting and open relationships with their provider and/or partner
  • The provider's willingness to communicate about about reproductive health topics
  • Self-advocacy and self-identity as a woman with a disability
  • Their own knowledge about reproductive health
  • The physical health care environment

Now what?

The framework we created will help us to write new patient-reported outcome measures (PROMS). You can think of PROMS as being a short form or survey that you can fill out. They are designed to help you think and talk about various health topics

Show Description of Infographic

Publication Information

This infographic summarizes one of our articles titled "Reproductive Health in Women with Physical Disability: A Conceptual Framework for the Development of New Patient-Reported Outcome Measures" published in the Journal of Women's Health. To read the official article you can go to https://doi.org/10.1089/jwh.2019.8174. Or, email us at [email protected] and we can send you the PDF.

This project was done in collaboration with researchers from the Kessler Foundation and NYU Langone Health.

Purpose

This paper is a report to explain our conceptual framework, a representation of thoughtsand ideas which will help us develop new patient-reported outcome measures (PROMS) that women with physical disabilities (WWPD) can use with a health care provider.

Process

To help us develop this framework, we spoke to WWPD who differed in their disability type,disability severity, and socioeconomic backgrounds. Overall, 81 women participated in our13 focus groups and 17 interviews. Data collected from focus groups and interviews were analyzed and used to help define major themes in the framework

Results

In our focus groups and interviews, WWPD most often talked about these five main areas of reproductive health:

  • Pregnancy
  • Periods
  • Sexuality
  • Contraception
  • Pelvic Exams

These five areas formed the center of the framework. This core is impacted and influenced by five themes:

  • Knowledge about reproductive health
  • Communication about reproductive health
  • Relationships with intimate partners, friends, and personal care assistants
  • The reproductive health care environment
  • Self-advocacy/identity

Takeaways

Overall, this framework will help us create PROMS to better serve women with physical disabilities and highlight areas to improve patient centered reproductive healthcare. As we learn more about women's experiences, we will continue to refine the framework.

 

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!).