Women with cerebral palsy (CP) experience difficulties as they age and barriers to accessing sexual and reproductive healthcare, a new study highlights, emphasizing the need to give these women platforms to speak for themselves and be heard by the health professionals caring for them.
The study, “Using Facebook to tell stories of premature ageing and sexual and reproductive healthcare across the life course for women with cerebral palsy in the UK and USA,” was published in BMJ Open.
Getting older takes a toll on every body, but the effects of aging on people with CP can be particularly pronounced, with age-related issues often appearing at relatively early ages. For women with CP, this can include such reproductive health issues as early and severe menopausal symptoms.
Women with CP can face barriers to accessing reproductive health services due to social stigmas, ability, and lack of training on the part of healthcare professionals.
These problems are often rarely discussed, particularly in healthcare contexts.
Researchers in the U.K. reviewed messages posted on the Facebook group Women Ageing with Cerebral Palsy (WACP), between January and October 2018, by 45 WACP members (ages 21 to 75) based in the U.K. and North America. This closed group provides a forum for discussing difficulties faced with aging and accessing reproductive healthcare.
By analyzing these discussions, “[t]he study addresses gaps in existing discourses on ageing, disability and women’s health, highlighting the health and healthcare experiences of disabled women in general, and women with CP in particular,” the researchers wrote.
Discourse was divided into three broad themes; the first of these was bodily effects of aging. These discussions emphasized how physical difficulties increased in the fourth and fifth decades of life, often in ways that weren’t fully anticipated by the women.
“Since I have gotten older my condition has gotten more pronounced,” one woman is quoted as noting. “More pain, more stiff, just more of everything. And I have to do the things I usually do differently now… I want to do it for myself. But sometimes I just can’t. It is just frustrating. I just wish my body was like it was in my 20’s!!”
“I have always been prone to falling but it has increased over the years,” said another. “It started for me in my 40s, usually when tired which is most of the time. My mobility had decreased along with my energy levels. It took me a while to accept these changes.”
The second theme was how these changes affect lifestyle, often impairing people’s abilities to work and participate in activities, and necessitating additional assistance or work-arounds.
“I’m in my 50s… small business owner… I’ve recently had to cut back work partly because I’m now going at a snail’s pace due to the effects of aging on my CP,” said one woman.
“I have someone to help me get dressed now,” said another. “I’m still able to do it on my own … but my attendant can do it faster and I look much nicer than when I did it myself … By the time I finally admitted I needed help, I’d been struggling to do it all, so it came as a relief to have help.”
The third theme was experiences with reproductive healthcare. Numerous obstacles were reported; many women mentioned not getting Pap smears and other screenings done because they were too much hassle.
In Scotland, [Pap smear is] offered from the age of 20,” said one woman. “I don’t have them, partly because I spasm too much and meds don’t help.”
Many also expressed frustration with healthcare professionals who lacked information on how to care for them.
“I have had regular gynaecologist appointments since my mid 30s. It’s annoying to me to have to explain to people that are helping me what I need,” one said.
“My first mammogram was a disaster, mainly due to the attitude of one of the professionals involved,” said another.
Similar disappointments were expressed concerning pregnancy and childbirth.
“The midwives were not very clued up on anything and were unable to answer any questions I had about how to do things one handed … I was really saddened by the lack of info,” said one woman.
In addition to highlighting the obstacles faced by women with CP as they age, this study notes the importance — for healthcare professionals especially — of listening to the experiences of those they are caring for.
“Giving women with CP a platform to ‘speak for themselves’, in relation to health and healthcare, provides health professionals with effective resources to improve treatment for this growing adult patient community,” the researchers wrote.