Sexual and Reproductive Health Care for Women with Intellectual Disabilities: A Primary Care Perspective

Abstract

Adults with intellectual disabilities (ID) face multiple health disparities and challenges to accessing health care. Little is known about sexual health care of this population and about how to optimize women's reproductive health care for women with intellectual disabilities. Women with ID face important barriers to care, including lack of provider training and experience, hesitancy to broach the topic of sexual health, a lack of sexual knowledge and limited opportunities for sex education, disability-related barriers, higher prevalence of sexual abuse and assault, often underreported, lack of dialogue around this population's human right to consensual sexual expression, undertreatment of menstrual disorders, and legal and systemic barriers. We conducted a limited literature review related to six aspects of sexual health care of women with ID, including barriers to sexual health care, sex education, sexual abuse and consensual sexuality, contraception, screening for sexually transmitted infections and cervical cancer, and pregnancy and parenting. After providing background information about each topic, we suggest practice recommendations for primary care clinicians, using a rights-based framework.

Fertility Desires and Intentions Among U.S. Women by Disability Status: Findings from the 2011–2013 National Survey of Family Growth

“…They may also encounter inaccessible medical facilities and equipment; inadequate training and stigmatizing attitudes of clinical providers; transportation problems; and communication barriers, e.g., the lack of American Sign Language interpreters for Deaf women (IOM, 2007; Peacock et al 2015; Mitra et al 2015). Women with disabilities are also less likely than those without them to receive recommended reproductive health services such as mammograms, pelvic health exams, and family planning (Gibson and Mykitiuk 2012; Greenwood and Wilkinson 2013; Iezzoni et al 2014; Pharr and Bungum 2012). However, the body of research literature regarding the intersection of reproductive health with disability status is relatively small.…”

The Palgrave Handbook of the Psychology of Sexuality and Gender

“…This is evident in research highlighting reproductive health issues for many people with disabilities. Control of the bodies of people with intellectual disabilities, especially women, for example, has often been seen as part of the decision-making realm of healthcare providers, parents, and other caregiving individuals and institutions (Brady, 2001;Greenwood & Wilkinson, 2013;Jennings, 2013;McCaman, 2013;Roy et al, 2012;Stefánsdóttir & Hreinsdóttir, 2013;Tilley et al, 2012;West, 2013). This control has too often been enshrined in legislation, and as recently as 2011 Human Rights Watch released a briefing paper on the sterilisation of women and girls with disabilities (Human Rights Watch, 2011).…”

“…The body, citizenship, and access will probably remain central in future studies and debates. For example, one area that has been increasingly debated is who can give consent to sexual relationships and how the capacity for consent can be assessed, especially in people with intellectual disabilities, who, until fairly recently, had not been seen as sexual agents (Brady, 2001;Greenwood & Wilkinson, 2013;Human Rights, 2011). Whose bodies are viable agents for consent?…”

Rapid repeat pregnancy among women with intellectual and developmental disabilities: a population-based cohort study

“…Adolescents and women with low education or income have been shown to be at high risk for rapid repeat pregnancy [4][5][6] and have been the focus of public health efforts. 3 Women with intellectual and developmental disabilities, who exhibit some of the same risk factors for rapid repeat pregnancy, such as suboptimal access to contraception and other family planning services, 7 have yet to be studied. Intellectual and developmental disabilities affect 1 in every 100 adults 8 and are characterized by cognitive limitations and difficulties with conceptual, social and practical skills.…”