Care for patients with intellectual disability
When intellectual disability is mild or moderate, counseling regarding contraceptive options and determination of capacity in medical decision-making become significantly more challenging. Ob/gyns may be asked to counsel a patient with intellectual disability, carefully balancing the views of her family and the opinions and desires of the individual with disabilities. This case illustrates challenges in contraception management in the setting of mild to moderate intellectual disability.
Best practices for patients with intellectual disability
As with any adolescent or adult patient, contraceptive counseling for individuals with intellectual disabilities should include detailed information about each contraceptive method so that risks and benefits can be weighed before selecting the best contraceptive option. To aid with presentation of contraceptive options, visual aids with graphics outlining efficacy, pictures depicting how a method is packaged and used, and videos outlining steps to follow for each method may all be instrumental in simplifying this information for patients with intellectual disability (Figures 1-3 and Video 1). The level and content of explanation should be tailored to the patient’s cognitive ability or developmental level. Additional time should be allowed for the patient or family members to ask clarifying questions, explore models and samples, or to express concerns.
Confidential interviews should occur with all patients, even those with intellectual disability, before including support persons such as family or caregivers in the contraceptive discussion. Shared decision-making is a common patient-centered approach used in contraceptive counseling that allows and encourages a patient to play a role in the medical decisions that affect her health. However, in patients with intellectual disability, supported decision-making is embraced to allow the individual with disabilities to include her family or support person to help them understand options, weigh risks and benefits, and communicate decisions with the healthcare provider.3 The individual with disabilities chooses trusted support people who can help her make and communicate her decision, but the final outcome should be what is deemed best by the individual with disabilities. When concerns exist regarding the patient’s understanding of healthcare decisions and her ability to consent to a procedure and to make an unbiased autonomous decision, it is helpful to meet with the patient over several visits to ensure the final decision is in the patient’s best interest. Finally, when the patient’s ability to consent is in question, the healthcare decisions are complex or involve significant risk, and when decisions are permanent—such as in the case of sterilization, the ob/gyn may call in other members of the healthcare team for further consultation and opinion. Ethics consultants outline the ethical issues and principles and present ethically acceptable resolutions for complex care decisions.
Patients with intellectual disabilities may also have medical issues that make the selection of contraception more complex. The clinician may use a helpful resource created by the Centers for Disease Control and Prevention (CDC), the US Medical Eligibility Criteria (US MEC), when assessing the acceptability of various contraceptive options.4 These guidelines outline various medical conditions and assign a score weighing risks and benefits for use of various contraceptive agents. Category 1 or 2 indicates an acceptable contraceptive option with benefits outweighing risks, a 3 suggests the risks outweigh the benefits, and Category 4 indicates the contraceptive agent should not be used with that medical condition due to an unacceptably high risk for complications (Figures 3 and 4).4
In addition, patients with disabilities may have functional limitations that might make one option preferable over another. A functional history should be included as part of the assessment to better understand how an individual with disabilities manages activities of daily living. For example, a patient with cerebral palsy or spinal cord injury may have limitations in fine motor control that could limit her ability to place a vaginal ring for contraception. Other patients may have sensory issues that would make a contraceptive patch too uncomfortable or may lead to non-compliance, with the patient picking the patch off the skin. This assessment of functional capacity is often an important consideration for decision-making on best contraceptive method (Video 2).
- 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.
- Kripke C. Supported health care decision-making for people with intellectual and cognitive disabilities. Family Practice. 2016; 33(5): 445-446.
- Curtis KM, Tepper NK, Jatlaoui TC, et al. U.S. Medical Eligibility Criteria for Contraceptive Use, 2016. MMWR Recomm Rep.2016;65(3):1-104.
- 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.
- Mosher W, Hughes RB, Bloom T, Horton L, Mojtabai R, Alhusen JL. Contraceptive use by disability status: new national estimates from the National Survey of Family Growth. Contraception.2018;97(6):552-558.
- 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.
- Frohmader, C, Ortoleva, S. The Sexual and Reproductive Rights of Women and Girls with Disabilities. ICPD International Conference on Population and Development Beyond 2014; July 1, 2012. Available at SSRN:https://ssrn.com/abstract=2444170
- Ross L, Solinger R. Reproductive Justice: An Introduction. In:Reproductive Justice: A New Vision