Clinicians can do more to improve contraceptive and sexual education for patients with disabilities, including youth. A big first step is acknowledging patients are interested in healthy intimate relationships, and sometimes also in preventing pregnancy.
“Education needs to be tailored in a way that is meaningful and understandable to youth with disabilities,” says Amy Houtrow, MD, PhD, MPH, professor of physical medicine and rehabilitation and pediatrics at the University of Pittsburgh.
Sexual education that works for middle school students might not meet the needs of young people with intellectual disabilities, she says. For instance, contraceptive and sexual education and counseling should be tailored to patients whose bodies are different because of their disability.
“We need more developmentally appropriate sexual education that is tailored to the individual’s own disability and the need for information that is specific to their health information,” Houtrow says.
When providers talk with adolescents and adult patients about contraception, they need to give them permission to discuss the topic, 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 when conducting research on this topic.
“If they are very immature and know nothing about sex and have no knowledge, then it’s a good time to talk with them about sex and find an age-appropriate book,” Enujioke says.
Also, clinicians should recognize patients’ privacy, even when the patient has intellectual disability and is a minor. “Respect their privacy if they don’t want to have their parents involved,” Enujioke says. “But encourage them to have their parents involved so we could talk about condoms and contraception.”
It is difficult to prescribe contraception for patients with intellectual disabilities if the parents are not aware of what it is for, she adds.
For some people with disabilities, sexual and contraceptive counseling may center around reproductive health future and how they can make decisions that will not jeopardize their overall health.
“Interviews with women with epilepsy about their desires for reproductive health counseling showed they were incredibly concerned about what epilepsy might mean for their reproductive future,” says Laura Kirkpatrick, MD, a physician at the UPMC Children’s Hospital of Pittsburgh. “Most reported receiving no counseling as adolescents, or receiving counseling that was so confusing, it impacted their future health decisions. One person said, ‘You cannot get pregnant on these [epilepsy] medications,’ and they thought it meant they didn’t need birth control.”
The patient’s doctor was trying to explain that the medications could cause birth defects, and so the patient should not get pregnant while taking them. But the doctor did not follow up by offering contraception counseling.
“A couple of people reported having that experience. One person chose to not take any kind of contraception, and one had an unintended pregnancy because of their misinterpretation of medical advice,” Kirkpatrick explains.
Contraceptive counseling for people with disabilities should include six formal sex education topics, says Eun Ha Namkung, PhD, associate research fellow at the Korea Institute for Health and Social Affairs in Sejong, South Korea. These topics are:
- how to say no to sex;
- methods of birth control;
- where to obtain birth control;
- how to use a condom;
- sexually transmitted infections (STIs);
- preventing HIV/AIDS.
“Sex education programs lie on a continuum ranging from abstinence-only education to more comprehensive sex education that includes more instructional topics,” Namkung says. “Traditionally, federal funding primarily supported abstinence-only education. However, research suggests that comprehensive sex education programs are associated with positive sexual outcomes, such as lower rates of pregnancy, increased use of condoms, decreased sexual activity, and lower rates of STIs, while the positive effects of abstinence-only education are far less evident.”
The earlier research was with women who do not have disabilities, but the same is true for women with disabilities.
“Our findings confirmed that the comprehensive sex education programs are equally important for the sexual health of women with disabilities,” Namkung notes.
Sexual health and reproductive health counseling should address sexual assault, since this is common among people with disabilities. Nearly four in 10 victims of recent sexual assaults have a physical, developmental, or mental health disability, according to researchers.1
“What I find particularly upsetting is that youth and women and girls with disabilities are victimized at much higher rates for sexual assault than are other women and girls,” Houtrow laments. “Any victimization of anyone is awful, but the victimization rate is markedly higher, particularly with youth and women with intellectual disabilities.”
This ties back to the point that the healthcare community is not giving individuals with disabilities adequate education around sexuality.
“We’re not creating a space where individuals with disability can express themselves if something has happened to them,” Houtrow explains. “They may not disclose it if they’ve been sexually assaulted.”
The goal would be to help people with disabilities develop autonomy and self-determination, especially as it relates to their sexual health and desires.
“One of the major jobs of healthcare providers, whether they’re pediatricians helping youth transition to adulthood or OB/GYN women’s health doctors, is to make sure we’re dialoguing and addressing healthy sexuality,” Houtrow says. “This conversation and education needs to be ongoing, and it also needs to be developmentally appropriate for the person with disability.”
An example of approaching the topic of sexual assault would be to ask a patient who is developmentally at age 5 or 6 years, “Does anyone touch you? Does anyone make you uncomfortable? Does anyone put their hands in your panties or up your dress?” Enujioke says.
Physicians also can ask caregivers/guardians of patients with disabilities about who spends a lot of time with the person and who helps them with their menstrual management if they are unable to handle this alone.
“For a lot of parents, I tell them, ‘Your child is at high risk of being assaulted and being convinced to have sex without even understanding what they’re doing,’” Enujioke says. “That’s another way I promote contraception. I bring it up with parents.”
REFERENCE
- Campbell R, Javorka M, Gregory K, Vollinger L. Supporting sexual assault survivors with disabilities: Tracing disclosure and referral pathways to postassault health care services. Am J Orthopsychiatry 2021;91:751-762.
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