In the United States, an estimated 12% of reproductive age women have one or more disabilities associated with difficulty in self-care and independent living. Based on 2013 data from seven states, overall prevalence of sexual activity is similar for women with and without disabilities.1,2 Contraceptive counseling for adolescents and women with disabilities can be complex given medical comorbidities in these patients, intellectual disabilities that may raise concerns regarding consent, and the involvement of families and caregivers who may seek to support the decision-making of the woman with disabilities. Unfortunately, current literature indicates the continued trend towards sterilization over other forms of contraception in women with disabilities. Our case presentation demonstrates some of these complexities in access to and decision-making about contraception for adolescents and women with disabilities. A discussion following the case outlines best practices for contraceptive counseling in this population, including medical and ethical considerations.
A 17-year-old G0 with a rare genetic syndrome, mild cognitive impairment, chronic idiopathic thrombocytopenia (ITP), and migraine with aura was brought by her parents to a gynecology clinic for adolescents and women with disabilities for consultation regarding tubal ligation. At her initial visit, the patient was having regular cycles but
with dysmenorrhea treated with ibuprofen. The patient had tried a progestin implant for 1 month but it was removed at the parents’ request due to unpredictable bleeding.
The patient lived with her parents, attended a public high school career center program, and hoped to work after graduation in culinary arts. The patient and her parents were interviewed together and then the parents were asked to leave the room so a confidential interview could be conducted with the patient.
Although the patient reported she had not been sexually active, she had a boyfriend in the recent past. Both parents thought their daughter would become sexually active in the future and voiced concern that she could not be “trusted” to be consistent with birth control. The parents outlined their reasons that their daughter should have a tubal ligation for permanent sterilization: concerns that she would experience medical complications during pregnancy; doubt that she would be able to care for a child; and not wanting to care for another child, particularly a child with the same genetic syndrome and medical problems as their daughter.
During the initial consultation, contraception options, including risks and benefits of each method, were thoroughly reviewed with the patient and her parents. The parents were counseled regarding the need for a court order prior to sterilization of a minor and educated about the ethical context of this policy and the history of coercive sterilization of people with disabilities in the United States. Considering the patient’s history of ITP and dysmenorrhea, and the family’s concerns regarding effective contraception, a levonorgestrel intrauterine device (IUD) was recommended. The parents declined the IUD and reiterated their preference for permanent sterilization. Because the patient was almost 18, the parents decided to wait until she could consent to sterilization herself. The gynecologist agreed to meet with the patient over time to better understand the patient’s desire for future fertility, her understanding about sterilization as a permanent procedure, and her ability to participate in the consent process.
Several confidential interviews were conducted with the patient during follow-up visits. Over this time, the patient voiced concerns about having children due to her medical problems, about possible complications in pregnancy, and also about the potential for genetic abnormalities. She acknowledged a limited ability to care for children, but did report to one provider that “perhaps she could foster children in the future if she wanted to be a parent.”
Contraception options were reviewed again with the patient privately and the patient stated that she would prefer the levonorgestrel IUD because she would miss less school than she would if she underwent tubal ligation. On one occasion, the patient whispered in confidence that her parents told her to say that she wanted her tubes tied, but asked that we not disclose to her parents that she shared this information. When the mother rejoined the conversation, the patient again stated that she wanted a tubal ligation. The mother commented in front of her daughter that the family didn’t want to have to care for another child with problems like her daughter.
The gynecologist had multiple concerns about the request for sterilization, including incongruent statements made by the patient about parenting and choice of contraception, and her ability to separate her own desires from her parents’ thoughts about pregnancy and sterilization. The provider ultimately decided that she was uncomfortable proceeding with permanent sterilization. The gynecologist consulted with other members of the patient’s healthcare team, including the geneticist and a member of the hospital ethics committee, who both agreed with her ethical concerns about sterilization. At a final conversation with the patient and her mother, the gynecologist expressed her ethical concerns about proceeding with permanent sterilization. The recommendation for IUD placement was declined by the patient and her mother and they chose instead to use a progesterone-only pill until they could seek sterilization elsewhere.
- Center for Disease Control Prevention. Prevalence and most common causes of disability among adults--United States, 2005. MMWR: Morbidity and Mortality Weekly Report.2009;58(16):421-426.
- Haynes RM, Boulet SL, Fox MH, Carroll DD, Courtney-Long E, Warner L. Contraceptive use at last intercourse among reproductive-aged women with disabilities: an analysis of population-based data from seven states. Contraception. 2018;97(6):538-545.
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- Adams RC, Levy SE and Council on Children with Disabilities. Shared Decision-Making and Children With Disabilities: Pathways to Consensus. Pediatrics.2017; 139(6).
- Wu J, Braunschweig, Y, Harris, LH et al. Looking back while moving forward: A justice-based, intersectional approach to research on contraception and disability. Contraception. 2019; 99(5): 267-271.
- Wu JP, McKee KS, McKee MM, Meade MA, Plegue MA, Sen A. Use of reversible contraceptive methods among US women with physical or sensory disabilities. PerspectSex Reprod Health. 2017;49(3):141-147.
- Wu JP, McKee MM, Mckee KS, Meade MA, Plegue M, Sen A. Female sterilization is more common among women with physical and/or sensory disabilities than women without disabilities in the United States. Disabil Health J.2017;10(3):400-405.
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- Li H, Mitra M, Wu J, Parish S, Valentine A, Dembo R. Female sterilization and cognitive disability in the United States, 2011-2015. Obstet Gynecol. 2018;132(3):559-64.
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