EXECUTIVE SUMMARY
People with disabilities lack adequate sex education in their communities and schools, experts say.
- Physicians could fill this gap, but they often are hindered by their own biases that these patients will not have sex.
- The goal for every physician treating patients with disabilities should be to help patients prevent pregnancy, if desired, and to make sure they are as informed as possible.
- Conversations about sex and contraception often need to include patients’ guardians or parents, but shared decision-making with patients also is a goal.
Disparities in contraceptive use between women with and without disabilities are partly due to limited access to formal sex education in communities and schools, researchers suggest.1
“Our study found that the formal sex education is important for contraceptive use among young women with disability — especially cognitive disability,” says Eun Ha Namkung, PhD, lead study author and associate research fellow at the Korea Institute for Health and Social Affairs in Sejong, South Korea. Namkung answered questions via email.
“Formal sex education can be provided by a school, church, or community organization,” she adds.
Physicians should look at their own limitations and biases regarding both young people and people with disabilities having sex.
“Why do you think this patient is not going to have sex? It’s usually [providers’] biases that this person will not have sex,” 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.
“Our first duty is to prevent unintended pregnancy and make sure our patients are as well-informed as possible,” Enujioke adds. “This will motivate more patients to talk about sex.”
For example, Enujioke usually asks about the patient’s sexuality on the first visit with the patient and family.
“I have the mom and patient in the room, and I ask about attraction: ‘Are you attracted to anyone? Is there anyone you like?’” she says. “If the parents say they don’t know about that, I say, ‘Kids know that,’ and I bring up studies that show children with intellectual disability are able to have sex.”
Some parents are understanding, and others are unhappy with the discussion but will think about it. Some of the more difficult contraceptive and sexuality discussions are with parents of youth with intellectual disabilities, she adds.
“They might say, ‘I watch my child and there’s no way this will happen,’” Enujioke says. “You respect the parent’s rights, but other parents are glad you brought it up, so bring it up with everyone.”
Risk of Sexual Abuse Is High
Young people with disabilities are at risk of sexual abuse. This is another reason why physicians should discuss sexuality and contraception with all patients and their guardians/parents. They also might desire to engage in a sexual relationship and avoid pregnancy.
“I will say, ‘Your daughter may grow up in the future and have a healthy, intimate relationship,’” says Beth Schwartz, MD, pediatric and adolescent gynecologist at Thomas Jefferson University in Philadelphia and also at Nemours Children’s Hospital in Wilmington, DE.
“The first time I pushed myself to say this to a mom, she started crying and said, ‘Thank you so much! No one has ever mentioned this before, and all I want is for my child to have a healthy, fulfilling adult life. I would love it if she was in a relationship and had that,’” Schwartz recalls.
The need and desire for a healthy sexual relationship is true of people with disabilities, even if they are nonverbal or use a wheelchair.
Clinicians providing education on sexuality and contraceptives to minors need to know their responsibilities toward patient confidentiality and shared decision-making as well as engaging with legal guardians when their approval is needed for contraception prescriptions.
Minor patients have rights to privacy that often are not actualized, says Amy Houtrow, MD, PhD, MPH, professor of physical medicine and rehabilitation and pediatrics at the University of Pittsburgh.
“Often times, we miss the opportunity in healthcare to offer young people privacy to discuss health and sexuality,” Houtrow says. “It’s a standard of care to promote that, especially when those individuals need substantial support for their independence.”
Providers should be knowledgeable about privacy and autonomy. “The framing we want is for people to be happy and healthy,” Houtrow explains. “It’s important for us as healthcare providers to remember that everyone is a sexual being in the sense that our bodies tend to change over time, and our interests and desires change over time.” This is true even for individuals for whom sexual attraction is not a part of their identity, she adds.
One method for beginning reproductive health discussions with patients with intellectual or other disabilities is to tell the patient, “We’re going to talk together, and I’m going to spend some time alone with you, asking questions,” Schwartz suggests.
“You can say, ‘We’ll talk about some private and confidential topics because this is the way I take care of my patients,’” she adds. “It’s another way of discriminating against disabled patients if we’re not treating them as their own people.”
Primary care providers (PCPs) are particularly important in providing sex and contraceptive education because they frequently interact with patients with disabilities. Many people with disabilities visit PCPs to treat chronic, underlying health conditions. Working with these doctors is a good way to reach out to potential clients with disability.
“They can play an important role as a direct/indirect sex educator,” Namkung says. “I hope more and more reproductive health professionals have education/seminar/training opportunities to work with people with disabilities.”
Many women with disabilities lack the financial resources and social networks to learn how to obtain contraceptives. This guidance is important to maintain their positive sexual health.
Namkung and colleagues used a cross-sectional household survey of people, ages 15 to 44 years, from 2011 to 2017.
“We focused on the contraceptive use at first intercourse, given the importance of first intercourse over the developmental trajectory of young women,” Namkung says. “We also focused on voluntary intercourse in consideration of the impact of the voluntary nature of intercourse when deciding the use of contraceptives and the specific methods of contraception. Specifically, compared to non-disabled women, women with cognitive disabilities were less likely to report receipt of instruction in each of six discrete formal sex education topics, and they received instruction on a fewer number of topics overall, prior to first voluntary intercourse.”
The more reproductive health topics young women received, the more likely they used contraception at their first voluntary intercourse, Namkung says.
REFERENCE
- 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.
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