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. 2024 Jan 4;143(4):475–483. doi: 10.1097/AOG.0000000000005493

Equitable Care for Patients With Disabilities

Considerations for the Gynecologic Health Care Professional

Julie P Barbera 1, Bridget Cichon 1, Nethra Ankam 1, Beth I Schwartz 1,✉
PMCID: PMC10953678  PMID: 38176014

A lack of training for gynecologic health care professionals treating patients with disabilities contributes to health care disparities; establishing clear guidelines can improve health outcomes.

Abstract

All patients deserve high-quality health care. Patients with disabilities have historically experienced discrimination in health care and subsequently detrimental health outcomes. Health care professionals often lack confidence and preparedness in treating patients with disabilities effectively. Barriers such as communication difficulties, biased assumptions, and inadequate equipment hinder comprehensive care. These barriers to care lead to health inequalities and a diminished overall quality of life for individuals with disabilities. Existing clinical guidelines for care of this underserved population are lacking. This article establishes a comprehensive educational framework and accessible reference tools for gynecologic health care professionals to enhance their ability to offer inclusive and effective care to patients with disabilities. Insights in this article stem from expert consensus among clinicians experienced in this field and ongoing dialog with community-based disability care partners. We present actionable steps to cultivate an open, adaptable, and patient-centric method to actively engage patients and to provide suitable accommodations when needed.

Despite the high prevalence of disability among both children and adults in the United States, estimated to be nearly 70 million individuals, many physicians and health care professionals report not feeling comfortable caring for this patient population.1,2 In a recent survey study, roughly 60% of physicians did not feel that they were able to provide care of equal quality to patients with disabilities as they would otherwise.3 Furthermore, only 56.5% reported that they “strongly welcome” patients with disabilities to their practice. Numerous barriers exist for physicians to care for patients with disabilities such as physical barriers, lack of proper equipment, and poor ability to communicate with patients.4,5 Physicians are often not confident in their knowledge base, experience, or skills with this patient population. Inexperienced clinicians form a barrier to care for these vulnerable and often medically complex patients. In one qualitative study, 42 physicians, including primary care clinicians and gynecologists, participated in individual and focus-group interviews that revealed broad themes of concerns around communication, routine preventive care, contraception, and pregnancy.6 This study revealed that some physicians intentionally engaged with the caregiver instead of the patient, regardless of the patient's verbal or decision-making capacity. Studies have also found examples of both implicit and explicit bias toward patients with disabilities.4,6,7 Regardless of the primary reason for a visit, stigmatized views and bias about this patient population negatively affect the patient–clinician relationship and may cause health care professionals to ignore or dismiss their patients' wishes.7

Physicians often harbor inaccurate assumptions that most people with disabilities are not sexually active and therefore not at risk for certain cancers.6 However, patients with disabilities, specifically movement disabilities or complex activity limitations, have been found to be at a higher risk for cervical cancer compared with individuals without disabilities.8 The implications of this finding are mirrored by a retrospective study that found that women with intellectual disability were significantly less likely to be up to date with U.S. Preventive Services Task Force guidelines for both mammography and Pap test recommendations. Only 24.5% of women with intellectual disability were found to be fully adherent to these guidelines compared with 46.3% of women without intellectual disability. In the same cohort, 35.2% of women with intellectual disability had no history of Pap screening compared with 14.6% in women without intellectual disability.9

Evidence also suggests that patients with disabilities are at increased risk of experiencing trauma because of isolation, neglect, bullying, and even assault. Unfortunately, individuals with disabilities are at a higher risk of sexual abuse, with women with disabilities being three times more likely to be victims of rape.10 Furthermore, screening rates for sexually transmitted infections are up to 70% lower in patients with disabilities, despite the risk of infection being nearly 40% higher in sexually active adolescents with developmental disability compared with peers of average intelligence without disabilities.11–13 In addition to a history of personal trauma, frequent interactions with the medical system may increase the risk of medical trauma. Thus, the importance of trauma-informed care is paramount.14 These reproductive health disparities for patients with disabilities can lead to detrimental effects on overall health and quality of life.

The aim of this article is to create an educational framework for gynecologic health care professionals and equip them with accessible reference tools so that they can more confidently provide comprehensive reproductive care to their patients with disabilities. No standardized clinical guidelines exist for the gynecologic care of patients with disabilities. The information presented in this article was created through a combination of expert consensus from health care professionals who have expertise in caring for this population, iterative communication with community-based partners in disability care, and a literature search. To increase health care professionals’ self-awareness and to improve patient experience, a collection of appropriate and inappropriate clinician actions is described throughout. Preliminary materials were created from the authors' experience working with people with disabilities. This draft was then shared with a group of stakeholders, including physicians with years of experience in focusing on the care of this population, self-advocates with disability, disability advocates with careers in the space, and family members of people with disability. Their feedback and additional input were gathered, synthesized, and incorporated directly into this text. These recommendations can help health care professionals establish trust, dispel presumptions, and deliver comprehensive reproductive care for individuals with disabilities.

INTERACTION AND COMMUNICATION WITH PATIENTS WITH DISABILITIES

To provide high-quality care to all patients, accommodations for patients with disabilities may start before the visit (Table 1). Some patients may need or benefit from more time. If possible, longer visits or visits at the end of the session should be scheduled for patients who need additional time. Early in the visit, the health care professional should explain the purpose of the visit and a brief overview of how the visit will take place, including information on estimated time for history gathering, expected physical examination components, and any other objectives for the appointment. Providing options for how the information is presented (verbal, written, or visual) allows the patient to select the most accessible format. For example, patients with blindness or low vision may select a verbal format or a written format with large font, whereas patients who are deaf or hard of hearing may select a written or visual format (Table 2).

Table 1.

Appropriate and Inappropriate Practices for Health Care Professionals Caring for Patients With Disabilities

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Table 2.

Best Practices for Patients With Sensory Disabilities

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Health care professionals often make inaccurate assumptions about the cognitive and physical capabilities of their patients with disabilities. Entering the encounter with an open mind and involving the patient in their care as much as possible are critical. At the beginning of the visit, on entering the room, the health care professional should speak directly to the patient and involve them throughout the visit. Family members or other caregivers are often present at the appointment, but this does not necessarily mean that the patient is dependent on them. The clinician should always first introduce themself to the patient and then inquire about the identities and relationships of others in the room. These people may be included in the history taking and physical examination as needed. However, obtaining consent from the patient, when possible, when involving others in their care is imperative (Table 1). All patients have the right to confidential care and private examinations, but some patients may not feel comfortable being alone in the room for all or part of the visit. This may also change over time, with increasing age and comfort with health care professionals, so this should be reassessed at each visit.

As with any patient, gaining the trust of a patient with a disability is important. Although trust is best developed by demonstrating consistency over time, a foundation can be created at the first visit by establishing rapport and inquiring what accommodations, if any, are needed to help the patient feel most comfortable. All patients, especially those with disabilities, communicate and process information in different ways. Examples of common accommodations include visual aids, communication devices, and allowing sufficient time for the patient to process a question before continuing the conversation. For example, the clinician may ask, “How best do you take in information?” and follow up with options such as written documents, voice recordings, or visual supports (Table 1). Visual supports such as laminated papers that express emotions may help patients identify their level of pain or how their pain makes them feel. Even if the patient does not use verbal language, their ability to comprehend verbal speech may be intact. Health care professionals should also be aware that some patients may avoid eye contact, but this should not be equated with not being engaged in the discussion.

For patients with sensory disabilities such as low vision or hearing, the same principle for inquiring about the preferred mode of communication and accommodations applies. Patients who are deaf or hard of hearing may prefer American Sign Language. In these instances, an interpreter may be used to facilitate the conversation, but knowing that American Sign Language does not translate directly to English or any other spoken language is important. Other patients may prefer to lip-read or speech-read. However, these methods are not completely reliable because not all English sounds are visible through these methods.15 Health care professionals should be aware of the nuances associated with different communication styles and the appropriate accommodations available (Table 2). Awareness of the patient's preferred method of communication allows the practitioner to optimize the visit so that the patient can be fully engaged in their own care.

Patients with mobility disabilities may also have needs and preferences. The health care professional should ask the patient if they need assistance. For example, if patients use a wheelchair, practitioners should not assume that they want to be pushed or guided. Similarly, leading a patient with blindness or low vision without permission is inappropriate (Table 2). The practitioner may ask whether they would benefit from other accommodations, such as transfer assistance or a larger examination room if this exists. Not all clinical environments will have the necessary tools or technology. In a resource-limited setting, accommodations can be individualized to provide the best possible solutions. These accommodations should be documented in the chart to allow optimal planning for future visits.

Some patients with cognitive disabilities may benefit from supported decision making. Supported decision making, in which a person with impaired capacity willingly participates in an agreement with a trusted person who assists them in understanding and making decisions, is a concept that is modified from shared decision making to maximize autonomy for patients with a dynamic level of cognitive ability who require more assistance. Although supported decision making can involve formal agreements, the concept has developed to include informal and flexible levels of support as well.16,17 Although capacity should always be assumed initially, some patients may be legally deemed not to have capacity and will instead have a court-ordered legal guardian. This information should be identified and documented. Supported decision making can be used in these scenarios as well.

EFFECTIVE AND COMPREHENSIVE REPRODUCTIVE HISTORY TAKING

When taking a sexual and reproductive history, the health care professional should approach the questioning as they would with any patient. Disability bias can be pervasive in assumptions about the lifestyle of a person with a disability, especially surrounding behaviors such as sexual activity and substance use. Patients with disabilities do engage in romantic relationships and sexual activity, in addition to alcohol and drug use.18 In fact, patients with disabilities are at higher risk of sexual abuse.10 Therefore, knowing the signs of abuse and screening for physical, emotional, and sexual abuse are incredibly important for the health and safety of patients.

Patients with disabilities should be counseled on routine preventive reproductive health, immunizations, including against human papilloma virus, and contraception as any other patient would be counseled. In addition to the standard questions asked at a reproductive and sexual health visit, other topics may be beneficial to discuss with patients with disabilities (Box 1). For example, patients with disabilities often benefit from menstrual suppression for hygiene or improvement in other medical problems, but this is rarely offered to them by primary care practitioners or gynecologists.19,20 Clinicians must be aware of limitations specific to a patient's disability that may affect options for menstrual suppression or contraception. For example, a patient may have contractures that interfere with taking pills or use of a vaginal ring. Others may have contraindications to certain hormonal medications because of a history of blood clots or decreased bone density related to their disability. In addition, the use of some antiepileptic medication in conjunction with certain hormonal contraceptives has been shown to decrease medication efficacy in a bidirectional manner.21 However, most contraceptive and menstrual management methods can be used in patients with disabilities. Recent research has demonstrated that intrauterine devices are a safe and efficacious option for menstrual management in this population.22 Procedures such as intrauterine device insertion or endometrial biopsy may need to be performed under anesthesia because of difficulties with positioning or ability to tolerate office procedures.

Box 1. Important Questions for a Gynecologic Visit for Patients With Disabilities*.

1. Have you had a gynecologic visit before?

  •  a. If yes: Have you had a speculum examination before?

    •    i. If no: Do you have any fears or concerns about the visit?

    •  b. Have you ever experienced pain during a speculum examination?

2. Do you have a menstrual period?

  •  a. Do you have any concerns about managing your menstrual period or hygiene?

    •    i. Have you experienced pain or difficulty when inserting tampons or other menstrual products (ie, menstrual cups, discs)?

    •  b. Are you interested in medications to help?

3. Are you sexually active?

  •  a. If so, do you have any concerns about positioning or discomfort with intercourse?

    •  b. Have you been tested for sexually transmitted infections before?

      •    i. Are you interested in being tested today?

4. Do you use alcohol, tobacco, or other drugs?

5. Do you feel safe in your environment?

  •  a. If no: Follow up and offer solutions if possible.

*Do not skip any questions that you would ask a patient without a disability.

When clinicians do engage in discussions regarding menstrual suppression for patients with disabilities, they should be aware of the history surrounding sterilization of marginalized communities, including individuals with disabilities. The American College of Obstetrician and Gynecologists’ Ethics Committee does not endorse coercive or forcible sterilization for any marginalized populations, although they note that the permanent sterilization of women with cognitive disabilities is beyond the scope of the current version of this document. They have emphasized that care decisions should prioritize the best interests of the individual and maximize reproductive autonomy whenever possible.23 Despite these recommendations, patients with cognitive disability are nearly three times more likely to have a hysterectomy, and at a younger age, than patients without disability.24 Hysterectomy is an irreversible surgical procedure, associated with significant medical risks. Although caregivers and guardians often have the best intentions, poor health literacy can lead to uninformed and potentially harmful decisions. Although caregivers may inquire about hysterectomy for menstrual management, some states require a court order and do not consider guardian consent sufficient to carry out this invasive and irreversible procedure.25,26 Therefore, physicians should be comfortable counseling families on appropriate options for menstrual management or contraception before consideration of hysterectomy. Health care professionals should also ask about other clinicians and staff involved in the patient's care such as other medical specialists, physical and occupational therapists, and home nursing because knowing this information may help inform management plans. Above all, practitioners must acknowledge any gaps in knowledge regarding the patient's disability and medical conditions. Patients are often the experts of their own conditions and may be able to answer questions and give feedback based on their experiences. In addition, health care professionals should always respect the answers they receive. Patients may not consider their disability as impairing any aspect of their daily life, and not all health issues are a result of or related to their disability.

PERFORMING A PATIENT-CENTERED PHYSICAL EXAMINATION

If any examinations or procedures are needed, the clinician should explain what is needed, the reasons for it, how it is performed, and what it may feel like for the patient. To support the explanation of examinations and procedures, models, diagrams, or visual stories can be used. This technique may also allow the patient to learn more about their anatomy. Health care professionals must receive consent from the patient before beginning any examinations or procedures. If a patient is uncomfortable or apprehensive about the examination or procedure, practitioners should consider deferring at that visit and scheduling a close-interval follow-up appointment. Otherwise, the clinician should perform a complete physical examination, including breast and pelvic examination with Pap testing, according to age-appropriate screening guidelines.27 Patients should also be referred for mammography and colonoscopy. Practitioners should not assume that any of these preventative measures are not necessary in this patient population.

The breast examination is an important portion of the physical examination. For an optimal breast examination, the patient should be in the supine position, although this can be modified if a patient is not able to transfer to the examination table or lie flat. It is recommended that assistants be available to help with transfers and positioning, if needed, for patients with physical or mobility disabilities. In addition, if available, height-adjustable examination tables make positioning easier and safer for a variety of patients.28 Once the patient is appropriately positioned, the breast examination technique does not need to be modified for patients with disabilities.

The pelvic examination is an important portion of the physical examination for gynecologic visits. There are no different guidelines for pelvic examinations or Pap testing for patients with disabilities. It is imperative that patients feel safe and are comfortable during this sensitive and vulnerable examination. Because this examination may cause patients to feel stressed, anxious, or nervous, some patients may want to see the equipment, and others may not. Various relaxation techniques have been identified in the literature that may benefit some patients during the examination. Some options include diaphragmatic breathing, mental imagery, progressive muscle relaxation, or Valsalva maneuver specifically for speculum insertion.29–31 Further description of these techniques can be found in Box 2. It is important to communicate with patients about how they are feeling throughout the examination. Health care professionals should monitor for negative reactions because body movements may express discomfort even if a patient does not verbally express discomfort. Clinicians should also be particularly mindful of body language and stop the examination if they notice the patient holding their breath, gripping the table or their gown, squinting their eyes shut, grimacing, attempting to close their legs, moving their body away from the clinician, gasping, crying, cursing, or mumbling.29 If a practitioner needs to stop, they should promptly address the patient's feelings and concerns and may suggest a relaxation technique. The examination should not continue unless the patient provides explicit permission.

Box 2. Relaxation Techniques for Patients with Disabilities.

Techniques to consider for anxious or tense patients

 1. Diaphragmatic breathing: Patients can be guided to take deep breaths and focus on the rise and fall of their abdomen. This technique aims to reduce heart rate and blood pressure and increase oxygen circulation.

 2. Mental imagery (either self-directed or guided): Patients should imagine a pleasant and safe scene using as many details as possible.

 3. Progressive muscle relaxation: Patients can tense and relax muscle groups such as the muscles in their arms and legs.

 4. Valsalva maneuver: This maneuver can be used while the speculum is being inserted; however, it should be stopped before the speculum is opened.

Patients with physical or mobility disabilities may require alternative positioning to provide sufficient access for a pelvic examination. The patient should be asked what position may work best for their body or if any modifications or assistance would help. If the patient is unsure of what assistance would be best, they should be offered alternatives to traditional positioning. Clinicians should not assume that one position will work well for all patients and should recognize that creativity may be necessary to ensure a sufficient examination for all patients. Alternative pelvic examination positioning descriptions and visual aids are shown in Figure 1.32 Having an assistant available to help with positioning if needed is recommended. For patients with high body mass indices (BMIs), the knee-to-chest position may be the most comfortable for the patient and provide access for the practitioner.33 Not all positions in Figure 1 may be feasible, depending on available equipment and staffing.

Fig. 1. Alternative pelvic examination positions for patients who are uncomfortable or physically unable to assume standard positioning. The original artwork by Julie Downs, BSN, RN, was adapted from Ferreyra S, Hughes K. Table manners: a guide to the pelvic examination for disabled women and health care providers.32 Used with permission.

Fig. 1.

Barbera. Gynecologic Care for Patients With Disabilities. Obstet Gynecol 2024.

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Some patients may be able to tolerate an external pelvic examination or a bimanual examination but not insertion of a speculum. In these cases, a blind Pap test can be performed; one study found this to be a successful technique compared with standard direct visualization.34 Some patients may not be able to tolerate the pelvic examination regardless of alternative positioning or attempted blind Pap test. In these instances, physicians should consider performing the pelvic examination under sedation or anesthesia. This has a specific Current Procedural Terminology code: 57410.35 This can be coordinated with other examinations or procedures under sedation to streamline the patient's health care experience. As always, this should be determined on a case-by-case basis with shared decision making between the clinician and the patient or supported decision making if appropriate.

CONCLUSION

Despite the high prevalence of disability in the United States—approximately 20% of the population, including 67 million adults and 3 million children—this vulnerable group experiences ongoing disparities in health care.1,2 Barriers to care include a lack of practitioner confidence and experience in caring for patients with disabilities, leading to decreased access to comprehensive and equitable care. Other barriers such as biases, inadequate knowledge, and limited communication skills negatively affect the patient–clinician relationship and contribute to poor health outcomes. These obstacles are amplified in gynecologic health care because of its highly personal and sensitive nature. This article helps create an educational framework for gynecologic health care professionals to enhance their understanding of and communication with patients with disabilities to improve their quality of care. By fostering an open-minded, flexible, and patient-centered approach; involving patients directly in their care; and offering appropriate accommodations, clinicians can build trust, overcome assumptions, and provide effective and comprehensive care that meets the needs of individuals with disabilities. As health care practices evolve and clinicians continue to adapt and improve their practices, we urge gynecologic health professionals to prioritize patients with disabilities to reduce health disparities, strengthen the patient–clinician relationship, and empower patients with disabilities to lead healthier and more fulfilling lives.

Footnotes

Drs. Ankam and Schwartz have a Community Support Grant from the Craig H. Neilsen Foundation, and Dr. Ankam has an educational grant from the National Curriculum Initiative in Developmental Medicine. These grants were not involved with this study.

Financial Disclosure The authors did not report any potential conflicts of interest.

Presented at the Thomas Jefferson University Disability in Medical Education Conference, September 30, 2023, Philadelphia, Pennsylvania.

Each author has confirmed compliance with the journal's requirements for authorship.

Peer reviews and author correspondence are available at http://links.lww.com/AOG/D545.

The authors thank Julie Downs, BSN, RN, for contributing her artwork to this manuscript and the following providers and advocates with personal and professional expertise in the disability field or family members with disability who contributed to the creation of this guide: Shane Janick (executive director, Arc of Philadelphia), Mary Stephens, MD (co-director, Jefferson FAB Center for Complex Care), Wendy Ross, MD (director, Jefferson Center for Autism and Neurodiversity), Jane Tobias, DNP (director of education, Jefferson Center for Autism and Neurodiversity), Amy McCann (CEO/program director, Carousel Connection), Tanya Sturgis (education coordinator, Deaf-Hearing Communication Center), Matthew Purinton, LCSW (self-advocate, Council for Relationships), Maureen McGuire (self-advocate), and Michael Ogg (self-advocate).

Figure.

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