Research Reveals Barriers to Contraceptive Care for Patients with Disabilities
Providers might ignore contraception needs
EXECUTIVE SUMMARY
People with disabilities experience barriers to contraceptive care, sometimes because of attitudes and biases among healthcare providers.
- One barrier is believing someone with a disability is not sexually active and does not need contraception.
- Contraception educational materials often are designed for a general population and ignore the needs of someone with sight impairment or other disabilities.
- Research data on the safety and efficacy of various contraceptive methods is lacking for people with disabilities. Because of this, some providerws are too cautious in recommending or prescribing certain contraceptives.
Several new studies highlight problems people with disabilities experience when trying to access contraceptive care. These include barriers related to educational material that is not designed with disabilities in mind as well as attitudes and biases among reproductive health providers and clinicians.1-3
“The biggest are attitudinal barriers,” says Claire Z. Kalpakjian, PhD, MS, associate professor in the department of physical medicine and rehabilitation at the University of Michigan Medical School. “The barrier to having a conversation about contraception between a woman and her physician, nurse, or other healthcare provider is often colored by the healthcare provider’s belief that it is not relevant to them because people with disabilities don’t have sex. It’s not true. Sex is a normal thing.”
Sometimes, providers do not consider this barrier to contraceptive counseling. They might not even think to bring up the subject of sexual protection during a visit with a patient with disabilities.
“Other times, they’ll say, ‘Why are you worried about that? You don’t need that,’” Kalpakjian says. “Right there, that’s one of the biggest barriers: The conversation doesn’t happen.”
Instead, providers should ask every patient, including those with disabilities, “What is the right solution for you, and what do you know about contraception options?” Kalpakjian says.
The attitudinal barrier is related to societal biases or expectations. These filter though healthcare providers because they also live within a culture that sometimes dismisses the needs of people with disabilities.
Another barrier is limited information and evidence that can help guide thoughtful decision-making about appropriate contraceptives.
“There is a huge gap in the literature and our understanding about what their needs are and what their experiences are,” says Monika Mitra, PhD, Nancy Lurie Marks associate professor of disability policy with the Heller School for Social Policy & Management at Brandeis University in Waltham, MA. Mitra also is the director of the Lurie Institute for Disability Policy.
“We embarked on an innovative study to systematically examine the prenatal health of women with disability,” Mitra says. “What we discovered is that women who are deaf or hard of hearing are at a disadvantage for many reasons.”
Women who are deaf or hard of hearing experience higher rates of pregnancy complications and adverse birth outcomes, and are more likely to be hospitalized before and in the postpartum period.
“What we also want to understand in contraceptive outcomes is what are the differences for women who are deaf and hard of hearing,” Mitra explains.
Depending on a person’s disability, some contraceptives could be difficult or less safe to use.
“I had a lot of women talk about using IUDs [intrauterine devices]. There’s not a lot of data on their safety and efficacy [for this population],” Kalpakjian says. “Healthcare providers tend to be cautious, and they won’t recommend it.”
Physicians are understandably uncomfortable with recommending a contraceptive option with no clinical guidelines and limited or no data on its safety for people with certain disabilities.
“There is no data on women with disabilities and IUDs, particularly if a woman with physical disabilities uses a wheelchair and may lack sensation [in her pelvic area],” she says. “Healthcare providers worry that the woman cannot feel the IUD if something goes wrong, and she may not be able to check the string.”
Kalpakjian recalls the case of a woman with a spinal cord injury who used a wheelchair and wanted an IUD. “She had to go to five providers until someone finally agreed she had the right to take the risk she wanted to take,” she notes.
If a provider says a woman’s contraceptive choice is too risky in the absence of data, it shuts down contraceptive counseling and communication.
“When decisions are made in a setting of uncertainty, and not clinical guidelines, power shifts to the healthcare provider, and conversations get shut down,” Kalpakjian says. “The conversation ends, rather than having a more open conversation of ‘Let’s explore this a bit; let me talk with my colleagues and let’s figure this out together.’”
Providers also are concerned about women with limited mobility using hormonal contraception that can raise the risk of blood clots. “If someone is not moving all day, they may have a higher risk of blood clots,” Kalpakjian says. “There are no randomized, controlled trials in this population of women to have data tell us what the risks are. Many decisions are made in the absence of data for women [with disabilities], and the default is that it’s too risky.”
Some contraceptive devices might not be risky, but are physically impossible for some people with disabilities to use. “Like the sponge — you can’t insert it if you don’t have hand dexterity,” she says. “I empathize with providers in making a judgment call without having either a lot of data or having a lot of experience with women with disabilities. When they have less experience, that can lead to saying ‘No’ because they don’t have that much information to go on.”
These barriers and lack of research into contraceptive use among people with disabilities are problematic for this population.
“People with disabilities in the United States have higher rates of unintended pregnancies compared to people without disabilities,” Mitra says.2
Investigators studying contraception access among adolescents with and without disabilities found that girls with disabilities were less likely to report contraceptive use compared to their abled peers. This disparity was noted for both use of oral contraceptive pills and condoms. The investigators concluded that this disparity for adolescents with disabilities should be of concern on a national scale and suggested more research is necessary.4
Disparities also are evident among adults who are deaf or hard of hearing. “We also know that people who are deaf or hard of hearing have lower levels of health literacy and contraceptive knowledge,” Mitra says. “They report higher numbers of sexual partners. We also know that people with disabilities, including deaf and hard of hearing, are more likely to be sexually victimized.”2
People with disabilities are less likely to receive formal sex education. Those who are deaf or hard of hearing are more likely to receive discriminatory treatment and inadequate communication.2
“Even though they need and require an ASL [American Sign Language] interpreter, they may not be receiving that,” Mitra says. “Already having low levels of health literacy and then going into a healthcare setting and not receiving adequate communication help is a problem.” Investigators should pursue more research to learn the reasons for these disparities, she notes.
Study data also showed clear disparities in contraceptive prescriptions. “What we found was that people who were deaf or hard of hearing were less likely to be provided prescription contraception, including pills, patch, ring, and diaphragm,” Mitra notes. “They were also more likely to be provided no contraception.”2
There was no difference in their use of long-acting reversible contraceptives when compared with people who are not deaf or hard of hearing, she adds.
Investigators used claims data instead of survey data, so they could not learn some details about contraceptive use, such as whether people who said they were using no contraception had partners who used condoms.
“That’s the caveat about this study,” Mitra adds.
“The other thing we need to note is that just because someone has a prescription doesn’t mean we know they are actually using the contraceptive that was prescribed,” Mitra says. “However, we found that people who are deaf or hard of hearing were less likely to receive prescription contraception, and they were more likely not to receive any contraception compared with their non-deaf or non-hard-of-hearing peers.”
REFERENCES
- Kalpakjian CZ, Kreschmer JM, Slavin MD, et al. Reproductive health in women with physical disability: A conceptual framework for the development of new patient-reported outcome measures. J Womens Health (Larchmt) 2020;29:1427-1436.
- Wu JP, Zhang J, McKee M, et al. Contraceptive provision and quality care measures for insured individuals in Massachusetts who are deaf or hard of hearing. Obstet Gynecol 2021;138:398-408.
- Horner-Johnson W, Klein KA, Campbell J, Guise JM. Experiences of women with disabilities in accessing and receiving contraceptive care. J Obstet Gynecol Neonatal Nurs 2021; S0884-2175(21)00126-X.
- Senders A, Horner-Johnson W. Contraceptive use among adolescents with and without disabilities. J Adolesc Health 2021;S1054-139X(21)00343-8.
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