Becoming Comfortable with the Uncomfortable: Researching Women’s Health Issues for Women with Physical Disabilities

By Rebecca Parten, LMSW

“So, what do you do?” When I’m asked this question, I sometimes hesitate for a moment because the topic can be awkward: women’s health issues for women with physical disabilities. I work as a Research Area Specialist within the University of Michigan’s Physical Medicine and Rehabilitation Department. I’ll admit it: this is not the area I really wanted to work in when I started working there in 2014. Like many disabled women, I didn’t experience the same level of sex education as my peers without disabilities. I was born with a physical disability and while I wasn’t sheltered, I didn’t have the “typical teen dating experiences”. Even if I’d had the opportunity to have those experiences, my disability is severe so kissing or sexual activities would have required adjustments. For example, I have limited range of motion in my hips and knees so “traditional” positions for sexual intercourse would be difficult. Limited range of motion in my upper extremities’ as well as pain/fatigue make self-pleasure quite tiring. Therefore, when my supervisor first introduced the idea of working with her on studies related to gynecological and reproductive health I was nervous. I mean it’s only been within the last few years I’ve become comfortable talking about this with my closest friends. How was I going to talk to women I didn’t know about sex, periods, and pregnancy planning? While it was awkward at first, I soon realized the importance of this work.

What is U-M PROWHD?

My supervisor, Claire Kalpakjian, PhD, MS serves as the director of the University of Michigan Program for Research on Women’s Health and Disability (U-M PROWHD). In this program, we hope to reduce barriers and empower women with disabilities by conducting research and sharing the results with patients and health care providers. Through this work I’ve had the opportunity to read academic journal articles surrounding gynecological and reproductive healthcare for women with physical disabilities. I have coordinated and facilitated interviews/focus groups and reviewed our participants’ survey responses. I quickly realized that many women with physical disabilities often lack formal education about managing periods, sex and contraception options or healthy relationships. Parents/guardians, teachers, and — as they got older — health care providers often didn’t take the time to talk about periods or if they did it was from a medical perspective. For example, they addressed symptoms like cramps or discussed options for limiting or stopping periods altogether. What isn’t usually discussed is the practical side of having a period: how to place a pad on your underwear or insert a tampon if you have limited range of motion or strength. Sex or pregnancy planning is often also not discussed. This could be because it was assumed women with disabilities weren’t interested in having sexual experiences, because health care providers may have felt like they didn’t have the right kind of education or knowledge to talk about the risks or potential complications associated with pregnancy for a woman with cerebral palsy or a spinal cord injury, or even because at times women with physical disabilities (including myself) can feel awkward bringing up these topics.

Creating A Patient Reported Outcome Measure

In a study funded by the National Institutes of Health, U-M PROWHD is developing the first patient reported outcome measure (PROM) that is exclusively focused on the health of women with physical disabilities. A PROM is information collected directly from the person themselves about a health problem or other situation. These outcomes are being used more and more in healthcare in addition to evaluation by a healthcare provider to help physicians and other health care professionals understand the health-related quality of life of their female patients with physical disabilities. A PROM can be a short form or survey that you can fill out. In developing a PROM that focuses on women with physical disabilities, we hope to help women and their health care providers feel more comfortable discussing topics that can feel awkward to bring up.

In order to develop this PROM we needed to come up with 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. Working in collaboration with researchers from the Kessler Foundation and NYU Langone Health we talked with a total of 81 women. This was done through focus groups and individual interviews. Participants ranged in age, race/ethnicity, disability type and severity, and other characteristics. We learned that several things have affected their reproductive health care experiences including:

· Having a trusting and open relationship with their provider and/or partner

· The provider’s willingness to communicate 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

This information allowed us to create the initial version of the PROM. Moving forward we will be testing the items to see how well they work “in the real world”. Unfortunately, it will still be some time before this is able to become a standard part of clinical care, but we are anxiously working towards this goal.

Creating Pregnancy Decision-Making Guides

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 mothers as much as their peers without disabilities, they are much more likely to be uncertain about whether they will be able to. 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. We are currently working on two pregnancy decision-making tools. One of the tools (for women with physical disabilities) helps women to feel more certain and ready to make a decision in pilot testing. Our next step is to test it in a bigger sample and if it works as we think it does, our plan is to get it out to the public so any woman can use it if she wants.

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. The tools we are creating were designed by researchers and women with physical disabilities to help women think about different aspects of pregnancy and how these may affect their health and wellbeing. They are meant to help them make a decision that is right for them. They also contain worksheets that women can use to explore topics that are relevant for them.

Working on all of the studies I’ve described has helped me grow both professionally and personally. While learning the about the barriers women with physical disabilities have accessing gynecological and reproductive health care, I realized just how fortunate I am to have the provider I do. She actually leads a clinic specifically for girls and women with disabilities and in the spirit of full disclosure, she is involved with many of U-M PROWHD’s projects.

Many articles described physical and attitudinal barriers women can face when accessing care — this has not been an issue for me. Instead, it has been more my own lack of confidence or comfort discussing this area of my life that has limited me. Talking with women as part of their study screening and participation has helped me to develop confidence talking to people I don’t know which is such an important professional skill. Hearing about their experiences has also validated my personal experiences — it’s nice to know other women have difficulty with things like placing a pad. All in all, I think it’s important to normalize these types of conversations. I’d be lying though if I said I was totally confident and comfortable talking about this. In fact, I’m rather nervous about writing this article knowing that my family could potentially read this. But, through this work I have realized that it’s something that needs to be written and talked about.

About the author

Rebecca Parten, LMSW is 31 years old and works as a Research Area Specialist for the Department of Physical Medicine and Rehabilitation at Michigan Medicine. She has a Bachelor’s degree in Communications and a Masters’ degree in Social Work. After graduating with her MSW she obtained licensure through the state of Michigan as a Master’s level Macro social worker.

Born with a genetic neuromuscular condition called Escobar Syndrome, all of Rebecca’s joints have limited range of motion. She uses a power wheelchair for most of her mobility. She also has severe scoliosis which restricts her breathing so she uses a ventilator via a face mask when sleeping. As she entered her mid-twenties her pain and fatigue increased and are a major issue for her today. She has additional diagnoses such as Adrenal Insufficiency, vision loss and hearing loss. She is a proud Hufflepuff (Harry Potter house) and enjoys spending time with her family, friends and pets. You can connect with Rebecca via her website, Facebook , and Instagram.

Getting involved with U-M PROWHD

While the specific opportunities may vary at any given time U-M PROWHD is always looking for participants!

Complete our online study interest form and we’ll reach out to talk more about the current study opportunities. You can also call (734) 763–4645 or email prowhd-research@umich.edu. We hope to hear from you soon!

You can connect with U-M PROWHD via the website, the private Facebook group, Instagram, and Twitter (through Claire Kalpakjian’s account).