By Rebecca H. Allen, MD, MPH, Editor
It is estimated that approximately 12% of women of childbearing age in the United States have a disability.1 Contraception is an important part of healthcare for patients with disabilities, whether physical or intellectual. In 2018, investigators analyzed 2011-2015 survey data from the National Survey of Family Growth to estimate the use of contraception among women by disability status.2 A total of 7,505 women contributed data, and disability status was predictive of the use of sterilization (adjusted odds ratio [aOR], 1.54; 95% confidence interval [CI], 1.12-2.12, for cognitive disability and aOR, 1.59; 95% CI, 1.08-2.35 for physical disability) after controlling for age, parity, race, insurance coverage, and experience of unintended births. Furthermore, the researchers found that the use of the oral contraceptive pill was less common among people with physical disabilities compared to no disability (aOR, 0.57; 95% CI, 0.40-0.82). Additionally, not using a method of contraception was more common among women with cognitive disabilities (aOR, 1.90; 95% CI, 1.36-2.66).
Barriers to Care
These data show that individuals with disabilities may be treated differently than those without disabilities in terms of contraceptive care. In fact, there are many myths regarding the reproductive needs of those with disabilities. These myths include that these patients are not sexually active, that they do not need contraception, and that they do not have the right to decide about pregnancy, childbirth, and parenting.3 It is important that providers be aware of their own biases toward patients with disabilities and seek to support rather than obstruct their access to all appropriate contraceptive options. Patients with disabilities are at higher risk of reproductive coercion by their medical providers, families, and caregivers.4 As this study shows, too often sterilization is chosen for patients with disabilities, and this may not be the most appropriate option, given that it is permanent and irreversible. Table 1 shows a range of contraceptive options for people with disabilities.
|
Contraceptive |
Advantages |
Disadvantages |
Combined oral contraceptives |
- Regulates menses and decreases dysmenorrhea; can use continuously
|
- May not be able to swallow pills; chewable formulations exist
- Risk of venous thromboembolism if immobile
|
Contraceptive patch |
- Regulates menses and decreases dysmenorrhea
|
- Patient can remove from skin (apply to central back area)
- Risk of venous thromboembolism if immobile
|
Contraceptive ring |
- Regulates menses and decreases dysmenorrhea, can use continuously
|
- Vaginal placement (privacy issues, denervation atrophy may prevent successful
retention)
- Risk of venous thromboembolism if immobile
|
Progestin-only pill |
- No estrogen
- Decreases menstrual flow
|
- May not be able to swallow pills
- Unscheduled bleeding and spotting
|
Depot medroxyprogesterone acetate |
- Convenient to administer
- Higher rates of amenorrhea
- Subcutaneous option
available
|
- Weight gain may affect patient transfers
|
Etonogestrel implant |
- Long-term, up to three years
- Decreases dysmenorrhea
|
- May need sedation for insertion
- Unscheduled bleeding and spotting
|
Levonorgestrel intrauterine device |
- Long-term, up to seven years
- Decreases menstrual flow
|
- May need sedation for insertion
|
Copper intrauterine device |
- Long-term, up to 10 years
- Nonhormonal
|
- May need sedation for insertion
- May increase menstrual flow and
dysmenorrhea
|
Sterilization |
|
- Risk of coercion
- No effect on menses
|
Adapted from: The American College of Obstetricians and Gynecologists. Menstrual manipulation for adolescents with physical and developmental disabilities. Committee Opinion Number 668. Published August 2016. https://www.acog.org/clinical/clinical-guidance/committee-opinion/articles/2016/08/menstrual-manipulation-for-adolescents-with-physical-and-developmental-disabilities |
Besides provider attitudes and knowledge regarding contraception for women with disabilities, other barriers exist in accessing care. Women with disabilities are more likely to experience poverty and unemployment and may rely on Medicaid, which covers contraceptive care, or Medicare, which does not.1 Therefore, cost may affect their ability to access contraception. Furthermore, physical barriers may exist in the office space, such as whether it is compliant with the Americans with Disabilities Act, whether the exam tables have appropriate functionality, and whether lifts are available for patient transfers.5 Transportation and the availability of handicap-accessible parking also may pose obstacles.
Contraceptive Counseling
Contraceptive counseling must be individualized and consider the capacity of the patient to consent, any intellectual disability (ID), and any concurrent medical problems that may make some contraceptive methods contraindicated. Direct conversations with the patient with and without their families and/or caretakers are essential. It is important that caretakers know that sterilization is not the only option for contraception and that equally effective reversible options exist that often have non-contraceptive benefits.4 For patients with ID, the Centers for Disease Control and Prevention (CDC) recommends that providers do the following:6
- incorporate pictures that resonate with women with ID, as well as cartoons, videos, and dolls with anatomical parts;
- provide opportunities for patients with ID to interact with teaching aids;
- provide materials for patients and caregivers to use at home to reinforce what is discussed during the medical appointment;
- use assistive communication devices and printed materials written at the patient’s cognitive level.
Reproductive health providers should query their patients with spinal cord injuries about autonomic dysreflexia. Individuals who have experienced spinal cord injuries at the T6 level or above can develop autonomic dysreflexia. Autonomic dysreflexia is defined as an exaggerated sympathetic response to painful stimuli below the level of the lesion.7 This can cause a variety of symptoms, such as sweating, nasal congestion, headache, hypertension, and tachycardia. Sometimes bradycardia also can occur. The symptoms can be mild or severe, leading to hypertensive crisis, seizures, and cardiac arrest. This is an issue to be aware of during pelvic exams and other procedures, such as intrauterine device (IUD) insertions, but each patient can have different triggers that may include a full bladder, constipation, sexual activity, and infection, among others. Therefore, IUD insertions may need to take place under sedation in the operating room. Asking the patient about their triggers and how to avoid them is essential.
Menstrual Management
Finally, menstrual management often is requested by patients and their caregivers as a non-contraceptive benefit to their contraception for various reasons. Depending on the disability, menstrual blood can be difficult to take care of, hygiene-wise. Menstrual blood can play a role in decubitus ulcers.8 In addition, the menstrual cycle can cause mood and behavior changes among patients with ID. Therefore, menstrual and/or ovulation suppression may be beneficial. Although complete amenorrhea may be difficult to achieve, many methods can decrease menstrual flow and control cycles. However, there are advantages and disadvantages to all methods that must be considered.
Individuals with disabilities have a right to reproductive autonomy. There are a range of contraceptive options available to patients who desire to prevent pregnancy and/or are seeking the non-contraceptive benefits of certain contraceptives. (See Table 1.)
REFERENCES
- Centers for Disease Control and Prevention (CDC). Prevalence and most common causes of disability among adults – United States, 2005. MMWR Morb Mortal Wkly Rep 2009;58:421-426.
- Mosher W, et al. Contraceptive use by disability status: New national estimates from the National Survey of Family Growth. Contraception 2018;97:552-558.
- Horner-Johnson W, et al. Pregnancy among US women: Differences by presence, type, and complexity of disability. Am J Obstet Gynecol 2016;214:529.e1-529.e9.
- [No authors listed]. Committee Opinion No. 695: Sterilization of women: Ethical issues and considerations. Obstet Gynecol 2017;129:e109-e116.
- ADA.gov. Information and technical assistance on the Americans with Disabilities Act. https://www.ada.gov
- Centers for Disease Control and Prevention. Tips for communicating with female patients with intellectual disabilities. Reviewed Sept. 14, 2020. https://www.cdc.gov/ncbddd/disabilityandhealth/materials/communicating-with-female-patients.html
- The American College of Obstetricians and Gynecologists. Obstetric management of patients with spinal cord injuries. Committee Opinion Number 808. Published May 2020. https://www.acog.org/clinical/clinical-guidance/committee-opinion/articles/2020/05/obstetric-management-of-patients-with-spinal-cord-injuries
- The American College of Obstetricians and Gynecologists. Menstrual manipulation for adolescents with physical and developmental disabilities. Committee Opinion Number 668. Published August 2016. https://www.acog.org/clinical/clinical-guidance/committee-opinion/articles/2016/08/menstrual-manipulation-for-adolescents-with-physical-and-developmental-disabilities
