I WOMEN WITH DISABILITIES ^228 ^461
Disability, as defined by the Americans With Disabilities Act of 1990, is a “physical or mental impairment that substantially limits one or more of the major life activities of an individual, a record of such impairment, or being regarded as having such an impairment.” Physical, developmental, sensory, cognitive, and psychiatric impairments may affect the quality and availability of health care services for women.
Women with disabilities have unique gynecologic needs that require practitioner awareness, sensitivity, and skill. As for all women, the optimal health care of women with disabilities is comprehensive, affirms the patient’s dignity, maximizes the patient’s interests, and avoids harm.Health care providers have a societal and professional ethical responsibility to accommodate and individualize the care of women with special needs. In addition, Title III of the Americans With Disabilities Act requires that a public accommodation operated by a private entity, including professional offices of health care providers, take steps to ensure that no individual with a disability is discriminated against on the basis of the disabling limitation (see also Appendix G). Physical limitations and communication difficulties that might hinder the health care of women with disabilities can be overcome by alternative positioning, modification of examinations, knowledge of the issues, technology, sensitivity, and patience (see Box 3-30).
In addition to physical barriers, a woman with disabilities may experience knowledge and attitudinal barriers in her physician’s office. In the health care setting, not infrequently, women with disabilities report feeling that they are viewed as asexual and unlikely to be lovers, wives, or mothers. Sexuality issues that women with disabilities face need to be addressed; these issues include the desire and ability for consensual sexual relationships and childbearing.
Pregnancy and parenting for women with physical disabilities may have unique medical and social aspects but rarely are precluded by the disability itself.Box 3-30. Suggestions for Office Practices That Serve Women With Disabilities ^
Before scheduling an appointment for the patient, the following steps are recommended:
• Become familiar with health care provider responsibilities stipulated in the Americans With Disabilities Act. Assess the medical practice environment and make appropriate modifications in layout, equipment, and staff training. If possible, include women with disabilities in the assessment and development of service delivery plans.
• Identify a point person within the practice to research local disability resources and be responsible for assuring the development and documentation of a plan of care for each woman with disabilities.
The following steps are recommended when scheduling an appointment for the patient:
• Ask about the special needs of the patient, including extra time, access considerations, and communication requirements.
• Determine at the time the appointment is made whether or not the patient usually gives consent for examination or treatment. If the patient is not able, the legal guardian or authorized (documented) caregiver should be asked to accompany the patient to the appointment.
• Contact, with consent, the primary care physician to ascertain medical history and gain advice or direction concerning the following:
— Psychosocial factors, such as living arrangements, and the reliability of patient and caretakers to follow through with advice and medical treatment; the most effective methods of health education; and the availability of community resources for the patient
— Physical factors, such as the patient's ability to use a standard examination table; best method of transfer (for patients with physical disabilities); best position for examination; most appropriate person to accompany the patient during examination; the extent of examination possible without sedation; the patient's history of examination under sedation or anesthesia
• Determine the patient's mode of transportation to the office and, if she is dependent on a public disability transport system, allow for some time flexibility.
• Scan the office or clinic to determine the accessibility of the reception areas, restroom, examination room, consultation room, X-ray and laboratory area, and other equipment for the patient.
(continued)
Box 3-30. Suggestions for Office Practices That Serve Women With Disabilities (continued)
• Determine the need for assistants to aid in transferring, positioning, and supporting the patient.
• Determine the need to arrange for an interpreter (sign language or other).
• Determine the patient's desire to have a chaperone present during the examination, and schedule the examination to accommodate this need.
• Schedule, if possible, the patient's appointment at a time of light patient volume and maximum staffing.
The following steps are recommended before or at the time of the appointment:
• Discuss the patient's appointment with office staff before the appointment, and designate a point person for facilitation.
• Allow the patient to determine who, if anyone, is to accompany her during the examination.
• Allow time before the examination for the patient to become familiar with the examination room and the health care provider.
• Be alert to cold or hard instruments and loud noises because the patient may be extremely sensitive to tactile and auditory stimulation.
• Be alert to signs of physical and sexual abuse, such as statements by the patient or physical signs of abuse, including the presence of sexually transmitted infections and bruising or swelling of the genitals. Reporting requirements on abuse differ in each state.
The following steps are recommended for providing health education:
• Stock the office with health education resources and materials available for women with physical and developmental disabilities.
• Patients who live in a group situation may have multiple caregivers. For these women, all printed health education, instruction, and treatment information is best delivered in lower literacy English (other language as indicated) as well as orally to the accompanying attendant. Consider using visiting nurses to ensure instructions or treatment regimens are understood and followed.
Modified from American College of Obstetricians and Gynecologists. Access to reproductive health care for women with disabilities. In: Special issues in women's health. Washington, DC: ACOG; 2005. p. 39-59.
Before examination and treatment of a woman with developmental disabilities, it should be determined who will give consent (see also the “Ethical Issues” section in Part 1). It is important to ascertain if the patient is capable of understanding findings and recommendations or whether this information needs to be concurrently transmitted to an identified guardian or caregiver.
Women with developmental disabilities may present with a broad range of health concerns, including difficulty maintaining preventive care, poor hygiene, unanticipated pubertal development, the need for contraception, pregnancy, abnormal uterine bleeding, or menopausal issues. They may have unidentified sexual activity and need to be screened routinely for sexually transmitted infections. Psychosocial factors must be considered to determine an appropriate treatment plan that offers individualized reproductive health care and education to this group of women and their caregivers.
Health care providers should familiarize themselves with the nature of the woman’s disability because the conditions may affect directly the decisions made in her reproductive health care. For example, women with physical or developmental disabilities may take medication for spasms and seizures. An understanding of such medications, possible interactions, and their effects on gynecologic issues also is important.
Women with disabilities often undergo screening for cervical and breast cancer less frequently than recommended. If possible, screening for cancer should be performed according to standard recommendations from the American College of Obstetricians and Gynecologists (see also the “Cancer Screening and Prevention” section earlier in Part 3). In women with developmental disabilities, it may be necessary to perform the pelvic examination under general anesthesia.
Before examination, it is important to ascertain from the patient if she has previously experienced autonomic dysreflexia, the reaction of the autonomic nervous system to noxious stimuli, including manipulation of visceral organs, constipation, distended bladder, and skin lesions. Symptoms include extreme hypertension, flushing, diaphoresis, and piloerection. Autonomic dysreflexia has a rapid onset and can result in seizures, intracranial hemorrhage, coma, and death. It often can be avoided by emptying the bladder before the examination, using an anesthetic gel, and performing slow and gentle internal examinations with a warmed speculum. Autonomic dysreflexia usually can be managed by stopping the stimuli, raising the patient’s head, and monitoring blood pressure.Women with disabilities are at risk of abuse by family members, institutional workers, and those who provide personal care and services. This abuse may include withholding of assistance or assistive devices. Women who rely on others for their personal and household needs may be reluctant to disclose concerns about abuse or violence for fear of retaliation or loss of these essential services performed by an abusive health care provider.
Contraceptive options should be discussed with all reproductive-aged women with disabilities. Considerations include the following: pharmacologic interactions of the contraception with other medications; actual or potential conditions of the woman; the amount of assistance available to, and required for, the woman; her lifestyle and self-care needs; and her desires for future pregnancy. Of particular value are contraceptive methods that are not administered frequently or that have a relatively long duration. Menstrual suppression through use of hormonal contraception may be useful for women with developmental or physical disabilities that make menstrual hygiene problematic. Adverse effects, such as unscheduled bleeding, must be considered. In most cases, the chosen method of contraception should be the least restrictive in preserving future reproductive options.
It is imperative that physicians comply with the highest ethical standards—as well as to federal, state, and local laws and regulations—when considering sterilization for women with developmental disabilities.Bibliography
American College of Obstetricians and Gynecologists. Access to reproductive health care for women with disabilities. In: Special issues in women’s health. Washington, DC: ACOG; 2005. p. 39-59.
Informed consent. ACOG Committee Opinion No. 439. American College of Obstetricians and Gynecologists. Obstet Gynecol 2009;114:401-8. [PubMed] [Obstetrics & Gynecology]
Sterilization of women, including those with mental disabilities. ACOG Committee Opinion No. 371. American College of Obstetricians and Gynecologists. Obstet Gynecol 2007;110:217-20. [PubMed] [Obstetrics & Gynecology]
Resources
Heaton C, Roberts BS, Murphy L, Meagher M, Randall D. Let's talk about health: what every woman should know. North Brunswick (NJ): The ARC of New Jersey; 1994.
American College of Obstetricians and Gynecologists. Reproductive health care for women with disabilities. Interactive site for clinicians serving women with disabilities. Available at: http://www.acog.org/About_ACOG/ACOG_Departments/ Women_with_Disabilities/Interactive_site_for_clinicians_serving_women_with_ disabilities. Retrieved September 17, 2013.
Center for Research on Women with Disabilities. Baylor College of Medicine. Available at http://www.bcm.edu/crowd/. Retrieved September 17, 2013.
Centers for Disease Control and Prevention. Mammography use and women with disabilities: a tip sheet for public health professionals. Available at: http://www.cdc. gov/ncbddd/documents/mammography-tip-sheet-_-php_1a_1.pdf. Retrieved July 31, 2013.