People with Disabilities Often Left Out of Contraceptive Conversation
First step is to ask, not assume
Research shows that providers often fail to provide reproductive health counseling to women with disabilities.
- People with disabilities are not asked about their sexual activities and contraceptive needs.
- The lack of counseling and education is magnified among young people with intellectual disabilities.
- Levonorgestrel intrauterine device use in adolescents and young adults with disabilities can be helpful as both a menstrual management and contraceptive option.
Several recent studies revealed that women with disabilities often receive inadequate or no reproductive and sexual health counseling and care, partly because healthcare professionals do not ask.1-6
“Many healthcare professionals do not expect that women with disabilities voluntarily engage in sexual activities. Their assumption makes them not to ask and intervene for their sexual health, including contraception counseling,” says Eun Ha Namkung, PhD, associate research fellow at the Korea Institute for Health and Social Affairs in Sejong, South Korea. Namkung answered questions via email.
“This might be one of the important barriers for disabled women to access and use reproductive health services,” Namkung explains. “Thus, first of all, it is important to ask them their sexual activities and needs or challenges.”
For instance, data from the 2011-2017 National Survey of Family Growth show that women with cognitive disabilities were less likely to say they had received instruction on six different formal sex education topics.1
Providers Often Make Assumptions
Reproductive health providers might have an even harder time handling discussions about contraceptives and sexual health with patients who have disabilities and are younger than 18 years of age. (See story on counseling for minors with disabilities in this issue.)
“Some big challenges are for [providers] to understand that people with disabilities, as they are becoming adults, are sexual beings,” says Amy Houtrow, MD, PhD, MPH, professor of physical medicine and rehabilitation and pediatrics at the University of Pittsburgh School of Medicine. Houtrow also is the division chief for pediatric rehabilitation medicine at the UPMC Children’s Hospital of Pittsburgh.
“Just because someone has a disability does not mean they aren’t curious about intimacy and relationships and engaging in sexual opportunities,” Houtrow says. “Talking to young people with disabilities about sex and educating them about safety and consent get dismissed because people don’t think they need that education.”
In fact, people with disabilities need specific contraception information that is geared to their particular disability.
“For example, for individuals with spina bifida, they’re often allergic to latex — which is found in almost all condoms,” Houtrow explains. “Having discussions about prevention of an unintended pregnancy for individuals with spina bifida includes a discussion about not using latex condoms.”
Other discussions could include patients’ range of motion in their hips or knees and how they can engage in sexual activity comfortably and safely. Physicians also could refer patients to a therapist with expertise in these discussions.
Sexual, Contraceptive Education Lacking
The literature shows that young people with disabilities do not receive sexual education in schools, doctors’ offices, or at home.5 (See story on best practices in sexual/contraceptive education for people with disabilities in this issue.)
“The big fundamental problem is we don’t recognize in our society that people with disabilities are like other people in that they have sexual interest, sexual lives, and desires,” Houtrow says.
The lack of reproductive health education and counseling extends to women with many different disabilities, whether intellectual or physical.
Researchers of several new studies examined reproductive health provided for adolescent women with epilepsy. They found that reproductive healthcare is suboptimal for this population, whether it comes from their pediatric neurologists, general pediatricians, adolescent medicine specialists, or pediatric gynecologists.2-4
“I find that reproductive health for people with chronic medical conditions exists in a no man’s land where a neurologist is not comfortable with the reproductive health aspect and may not be comfortable with the epilepsy piece,” says Laura Kirkpatrick, MD, a physician at the UPMC Children’s Hospital of Pittsburgh division of child neurology. “When we talk to neurologists, they think this topic is important, and they feel an element of responsibility for discussing it. They’re pretty knowledgeable about most aspects of reproductive health and epilepsy, but they’re not doing counseling because of limited time at office visits.”
Also, providers who work with pediatric populations often think they should have private conversations with the patient’s parents out of the room. That does not always happen, she adds.
The challenges of approaching reproductive health and sexuality issues with pediatric patients is magnified for patients with an intellectual disability. The mistake most providers make is thinking everyone with an intellectual disability experiences the same comprehension challenges, says Sharon C. Enujioke, MD, MPH, adolescent medicine specialist at the Navy Medical Center in Portsmouth, VA. Enujioke was a fellow at the Indiana University School of Medicine while researching this topic.
“In my paper, we dealt with people who had mild and moderate intellectual disability. Our research showed that those with mild and moderate intellectual disability are able to understand about sex,” Enujioke explains. “When you talk with adolescents and bring up sex, there is a lot of shyness about it — even among those who are sexually active.”
The conversation about sex should be simple and geared to the patient’s level of understanding. “It comes down to how you talk with them about sex,” Enujioke explains. “Talk about attraction, masturbation, and give them room to talk about it.”
Physicians should keep in mind that people with mild to moderate intellectual disability can make decisions about having sex, getting married, and parenting a child.
“I try to take parents away from the fear of ‘I’m going to have a grandchild I don’t want,’ and tell them to hold off because we don’t need a permanent option at this time,” Enujioke explains. “For those who have intellectual disability and could never consent to sex, we have IUDs [intrauterine devices] and other methods that can stop menses and prevent pregnancy.”
There should not be a rush to permanent contraceptive methods. There is a long history of ethical concerns in sterilizing people with disabilities.
“There have been child neurologists who were asked to sign off on sterilization, and they had ethical concerns doing this,” Kirkpatrick says. “Some reflected and decided the benefits outweighed the risks and ethical quandaries.”
Physicians made decisions on a case-by-case basis, and they often lacked guidance. In a couple of instances, physicians decided in favor of permanent contraception to arrest puberty in one patient, and to help another avoid hygiene problems with menstruation. “I was shocked by this,” Kirkpatrick says.
While these physicians might have believed few options were available, one recent study revealed that IUDs are safer and as effective at preventing pregnancy as tubal ligation.7
Another issue reproductive health providers and other clinicians sometimes overlook is how certain contraceptives could make life easier for some patients with physical disabilities. For instance, a large population of reproductive age people would benefit from menstrual management to help with hygiene issues that occur because of their disability.
“If they have muscular contractions in a wheelchair, it might be hard to use tampons and depend on caregivers to [insert them],” says Beth Schwartz, MD, pediatric and adolescent gynecologist at Thomas Jefferson University in Philadelphia and at Nemours Children’s Hospital in Wilmington, DE. “Also, there are a lot of concerns about periods and medical problems worsening, like epilepsy and seizure disorders that are prevalent in people with disabilities.”
For these reasons, as well as for pregnancy prevention, providers and patients might want to consider contraceptives that also reduce or eliminate menstruation. Research shows that levonorgestrel IUD use in adolescents and young adults with disabilities can be helpful as both a menstrual management and contraceptive option.6
“In our study, we used all hormonal IUDs because so many patients liked that it provided contraception, and the main thing was menstrual suppression,” Schwartz explains. “It turns out when you offer people a variety of options, way more people will choose IUDs than you’d think.”
One of the attractions to IUDs is it is a one-and-done method. It can last seven years after insertion.
“For some patients, taking pills is really hard, and the route of using IUDs is easy once it’s in,” Schwartz says. “There can be breakthrough bleeding, but amenorrhea rates are pretty high — not 100%, but almost everyone has lighter and less painful periods.”
Another benefit is that IUDs work locally and with almost no systemic absorption, which means there are no hormonal side effects or interactions with other medications. “In that way, IUDs are a safe option for some patients,” Schwartz adds.
One drawback to using IUDs among some people with disabilities is that they may have to be inserted and removed in the operating room. This is one reason Schwartz’s research showed that people with disabilities had a continuation rate of 73% after five years.6
“The other big thing is reported side effects were very, very low, and complications were very rare,” Schwartz says. “There were no uterine perforations, no infections, no pregnancy; there were zero events.”
- Namkung EH, Valentine A, Warner L, Mitra M. Contraceptive use at first sexual intercourse among adolescent and young adult women with disabilities: The role of formal sex education. Contraception 2021;103:178-184.
- Kirkpatrick L, Collins A, Harrison E, et al. Pediatric neurologists’ perspectives on sexual and reproductive health care for adolescent and young adult women with epilepsy and intellectual disability. J Child Neurol 2022;37:56-63.
- Kirkpatrick L, Liu H, Bhatnagar S, et al. A survey of healthcare providers about reproductive healthcare for adolescent women with epilepsy. J Pediatr Adolesc Gynecol 2022;35: 39-47.
- Kirkpatrick L, Harrison E, Khalil S, et al. A survey of child neurologists about reproductive healthcare for adolescent women with epilepsy. Epilepsy Behav 2021;120:108001.
- Houtrow A, Elias ER, Davis BE, et al. Promoting healthy sexuality for children and adolescents with disabilities. Pediatrics 2021;148:e2021052043.
- Schwartz BI, Alexander M, Breech LL. Intrauterine device use in adolescents with disabilities. Pediatrics 2020;146:e20200016.
- Schwarz EB, Lewis CA, Dove MS, et al. Comparative effectiveness and safety of intrauterine contraception and tubal ligation. J Gen Intern Med 2022 Feb 23;1-8.
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