Focusing on the woman, not just the disability, could improve reproductive care

For many women with physical disabilities, the basics of reproductive health come with unique challenges.

That’s not news to medical community, but providers do not have a way to measure the experiences of these women and how they relate to those without such conditions, said Claire Kalpakjian, Ph.D., M.S., associate professor of physical medicine and rehabilitation at Michigan Medicine.

“We’ve known for several decades that these are areas where many women face challenges, but what we haven’t done is start to create solutions to these problems,” Kalpakjian said. “You can’t fix what you can’t measure, so we need to create measures that show us the scope of the issues, how many people are affected and in what ways. This is what we need to inform ways we can intervene and change things.”

During the study, Kalpakjian conducted focus groups and interviews with 85 women with disabilities across the country to understand what drives reproductive health inequity. Most of the women had moderate-to-severe disability, living with conditions like spinal cord injury, multiple sclerosis or cerebral palsy. Over the next two years, the research team sifted through the women’s stories to find the most important issues related to their reproductive health and what needed to be measured first.

Periods

One of the key areas of focus was managing menstruation and premenstrual symptoms.

“You can’t just get up and go lie down when you need to; you need help with that,” one participant said. “I have scoliosis and my hips are tilted, so it takes a lot of work to line up a pad accurately. That’s very hard to get right.”

Managing cramps, leakage and using products like pads or tampons without good balance or dexterity can interrupt a woman’s life monthly for years.

“I still remember one woman telling me because she sits all day and has no feeling down there, her pad would move around and constantly ruin her clothes,” Kalpakjian said. “There’s mental burden of managing it, in addition to just being able to physically manage it.”

Since 1976, researchers found only four published studies that address menstrual hygiene among women with physical disabilities and a few on product preferences.

“This is just a shocking lack of attention to periods given half the population has them for decades of their life,” Kalpakjian said.

Pelvic exams

In most medical offices, examination tables don’t lower. Many of the interviewees shared a fear of falling off the table, if they were able to get up at all. While less common, some struggled with lower-body muscle spasticity with the insertion of the examination device called a speculum, triggering uncontrollable motion. Some worried about inadvertently kicking the person doing the exam.

Researchers were struck by the women who reported difficult interactions with their health care providers. They worried about being judged, rushed through the exam or not receiving accommodations to even have one.

“There’s this dimension of human interaction that could really help or harm the experience,” Kalpakjian said. “For some women, that’s just too much work, so they don’t bother with it. There can be some serious unintended consequences if you don’t get the proper screening.”

This article originally appeared in the Michigan Medicine Health Blog. Read more here.

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