EXECUTIVE SUMMARY

Reproductive health providers use contraceptive counseling techniques largely based on an able-bodied norm, ignoring the needs of people with disabilities. New research suggests that better communication tactics are needed to reduce disparities and remove barriers for people who are deaf or hard of hearing as well as for people with other disabilities.

  • People with disabilities often have low health literacy, which compounds communication issues.
  • The COVID-19 pandemic has made contraceptive counseling particularly problematic for people who are deaf or hard of hearing because of providers wearing surgical masks, which makes lip-reading impossible.
  • One of the better solutions to contraceptive counseling barriers is shared decision-making, with physicians openly acknowledging what they know and do not know about contraceptive use among people with disabilities.

Standard contraceptive counseling might not work for people with disabilities, particularly when those disabilities require different modes of communication.

One solution to improving access and reducing these disparities is to improve contraceptive counseling.

As investigators noted in one new study, it is not helpful to hand a paper pamphlet to a woman who is blind. The investigators found that the infrastructure of contraceptive care was based on an assumption of an able-bodied norm, overlooking the reproductive health needs of women with disabilities.1

“Provide adequate and credible contraceptive counseling, just as you would to other patients, and ensure women have access to communication help,” 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. “Do not assume that people who are deaf or hard of hearing have the same level of knowledge of health as other people. We need to ensure we are communicating effectively.”

People with disabilities are doubly disadvantaged if their health literacy is low and the communication is inadequate. They also must be treated with respect.

“Accessible communication is to really ensure they have access to whatever form of communication they need,” she explains. “Ask people about their communication needs.”

During the COVID-19 pandemic, communication with people who are deaf and hard of hearing is particularly problematic because of the need for providers and patients to wear masks.

“People who are deaf or hard of hearing are at a disadvantage, especially if they lip-read,” Mitra says. “It has really impacted people who are deaf and hard of hearing.”

Some providers have used clear masks and face shields to allow patients to see their facial expressions and to read their lips as needed. “That is something that is an issue and can be ongoing, given that COVID is coming back,” Mitra adds.

Another tactic for reducing contraceptive care disparities is for reproductive health providers to examine their own attitudes about sexuality and people with disabilities.

“Think about people with disabilities as having a sexual life, like anybody,” says Claire Z. Kalpakjian, PhD, MS, associate professor in the department of physical medicine and rehabilitation at the University of Michigan Medical School.

Shared decision-making is another good solution to communication barriers. This is a collaborative model for communicating healthcare information, values, and preferences. It is increasingly being promoted as the optimal framework for patients’ engagement with providers.2

“Learn what the patient’s values are and talk about these things, helping them make a good decision that is not the opinion of the provider, but something that fits well with their life and values,” Kalpakjian suggests.

Women with disabilities do not expect their reproductive health providers to be experts in their disability. They are realistic, Kalpakjian says. “But what is painful to many of them is the lack of openness to talk about possible solutions,” she explains. “They do not think their provider should have all the answers, but they’re critical and frustrated when the healthcare provider won’t even listen to them and talk about it.”

Reproductive health providers often make the best assessments they can, based on what they know about contraceptives in the general population and what they understand of a particular person’s disability. Since there is too little robust evidence to inform physicians of the safest contraceptive for a particular person with disabilities, there is inherent discomfort in the decision-making process, Kalpakjian explains.

Even when physicians do not have all the best answers, women with disabilities want honesty and openness from their providers.

“They want providers to say, ‘I’m going to see what I can find out and talk with my colleagues, and we can work on this together,’” Kalpakjian says. “That’s the optimal. The absence of deliberation is the problem.”

No patient wants a quick “no” to their questions or requests. They also want their providers to accept the fact they are having sex and discussing it is a normal part of that conversation.

There is an interpersonal aspect to reproductive health. The greatest benefit or the greatest barrier to optimal contraceptive care is providers’ beliefs and how they manage decision-making.

“My best advice is to be open to talk it through and be willing to learn more about her disability. Healthcare providers can be their allies in navigating challenging decisions, where nobody knows what, exactly, is the right decision,” Kalpakjian adds. “That’s what shared decision-making is — an alliance between the patient and provider for the best solution.”

REFERENCES

  1. 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.
  2. Edmonds BT. Shared decision-making and decision support: Their role in obstetrics and gynecology. Curr Opin Obstet Gynecol 2014;26:523-530.