Sexual health care in persons with intellectual disabilities

Abstract

In the past, preventive health concerning sexuality of people with intellectual disabilities was addressed through surgical sterilization as part of nationwide eugenic programs in many countries. For more than 30 years now, it has come progressively to light in the scientific literature that, besides major ethical and legal problems, these programs also failed to assess many of the individual's needs in sexual health. The fact that an increasing number of people with intellectual disabilities live in the community rather than in institutions has heightened public awareness that these individuals have sexual expectancies, desires, and needs that must be supported through both education and health services. The emergence of AIDS, including descriptions of cases among people with intellectual disabilities, has further demonstrated that surgical sterilization cannot be considered a global option to achieve preventive sexual health. The aim of this paper is to review scientific studies that have assessed the expectancies and support needs of persons with intellectual disabilities in terms of sexual health. These needs vary widely from one individual to another, according to life milieu, level of disability, and potential comorbidity. From this review, it appears that hygiene management, global gynecological care, and prevention of unplanned pregnancy, sexually transmitted diseases, and abuse have been frequently identified as areas in which the presence of intellectual disability dictates specific support needs. Different approaches that have been evaluated to address these issues will also be discussed. Key Words: sexuality; contraception; sterilization; sexually transmitted disease; hygiene management; pregnancy S exual health is influenced by a variety of political and social events and is broader than the absence of disease [Edwards and Coleman, 2004], encompassing both mental and physical aspects of human functioning that are important to overall well being [Sandfort and Ehrhardt, 2004]. The concept of sexual health in persons with intellectual disabilities (ID) is an extremely sensitive subject, and while advances have been made in employment, housing, and other aspects of community integration, the sexual needs of these individuals have been relatively ignored or strictly controlled by caregivers and service agencies [Bambara and Brantlinger, 2002; Hinsburger and Tough, 2002]. The importance of sexual health for people with ID has received increased attention in the past several decades and was recently highlighted by the 58th World Health Assembly (World Health Organization [(WHO)], which urged member states to include a disability component, including those with ID, in sexual health policies and programs [WHO, 2005a].Despite the heightened awareness of sexual health needs in this population, there has been a tendency to focus on issues of sexual rights and sexuality, and there is relatively less information on related factors such as preventive health. The U.S. Department of Health and Human Services (USDHHS...

Disability, Sexual Health, and Participatory Video: Advocating for Sexual Rights

“…Research findings reflect that developmentally disabled people are severely and repeatedly sexually abused (Fegan, Rauch, & McCarthy, 1993;Hingsburger, 1995Hingsburger, , 19982006a;Richards et al, 2009;Sobsey, 1994), and are at a significantly higher risk of sexual abuse than temporarily able-bodied persons (see Evans et al, 2009;Kelly, Crowley, & Hamilton, 2009;Murphy & Young, 2005;Servais, 2006;Swango-Wilson, 2011;WHO, 2011). In Canada, 80 percent of women with disabilities and 54 percent of men with disabilities are sexually abused, and if a person is developmentally disabled, "the likelihood is that rape or molestation will be your first experience with sexuality" (Hingsburger, 2006a, p. 1).…”

“…Although scholars continue to explore the educational component in addressing sexuality and disability (see Clark & O'Toole, 2007;Richards et al, 2009;Servais, 2006), there are limited research studies that explore the perspectives of people with developmental disabilities in the area of sexual rights (see Esmail et al, 2010;Galea, Butler, Iacono, & Leighton, 2004;Kelly et al, 2009). Given the pervasiveness of sexual rights issues, there is a need to hear the perspectives of those people with disabilities experiencing injustice.…”

Nuevas consideraciones sobre la salud de las personas con trastornos del desarrollo intelectual

“…Durante años, los programas dedicados a estas cuestiones han planteado la esterilización quirúrgica como solución, con importantes problemas éticos y legales asociados, por lo que es necesario incrementar el apoyo en este tema a través de la educación y los servicios de salud. 30 …”

Ethics in sexual behavior assessment and support for people with intellectual disability

“…However, in addition to being unethical, sterilization, voluntary or involuntary, did not accomplish any of these aims [9]. Even with sterilization, individuals with IDD expressed their sexuality, experienced sexual exploitation [10][11][12], and acquired STIs [13].…”