Every individual deserves the right to explore and enjoy their sexuality in a safe and appropriate manner, yet sexuality education is often avoided in youth with intellectual and developmental disabilities. One of the central roles of a nurse practitioner (NP) is that of an educator, and human sexuality is a key component of comprehensive healthcare. The existence of a disability presents complexities to the implementation of sexuality education, especially in a clinical setting. Consideration of patients’ unique abilities and learning styles allow NPs to bridge the gap in the delivery of sexuality education to individuals with intellectual and developmental disabilities.
As supported by the World Health Organization (WHO) declaration that sexuality is a fundamental human right and the American Association on Intellectual and Developmental Disabilities (AAIDD) and the Arc joint position statement, sexuality should be respected and protected for everyone regardless of cognitive, intellectual, and developmental abilities.1,2 Individuals of all abilities desire intimacy and, in many cases, puberty milestones occur at the same rate as typical peers, yet society often views individuals with disabilities as childlike and asexual.3,4 Because of this skewed societal perception, sexuality education is limited or even avoided in youth and young adults with intellectual and developmental disabilities (IDD).5,6
As nurse practitioners (NPs), it is our job to provide consistent, high-quality healthcare to all patients inclusive of the diversities of race, ethnicity, sexual orientation, gender identity, socioeconomic status, religion, and intellectual and cognitive ability. As an integral component of overall health, sexuality is included in a comprehensive health assessment. Similarly, healthcare management includes sexuality education.
Sexual health assessment
Before initiating a conversation about sexuality, it is important to ask for permission to discuss sensitive topics and remind the patient that they always have the choice to abstain from answering questions or to terminate the conversation completely for any reason.9–11 Also, the patient’s communication style, baseline knowledge of sexuality, intimacy, human anatomy and sexual physiology, and level of understandability need to be assessed. As with any patient, a sexual health assessment for individuals with IDDs includes questions about sexual experience and preferences, past and present partner(s), religious and cultural beliefs that may impact expression of sexuality, and potential need for contraception (Table 1).
Validated questionnaires that facilitate sexual health conversations include the Female Sexual Function Index (FSFI), the Female Sexual Distress Scale-Revised (FSDS-R), Sexual Quality of Life–Female (SQOL-F), and the Sexual Function Questionnaire (SFQ28).12–15 Although not specifically validated in the IDD population, the aforementioned questionnaires may still facilitate conversations regarding sexual health between NPs and individuals with IDD if language is modified to the level of patient understanding.
Sexuality education is important for the understanding of intimacy, the exploration of sexual pleasure, and the development of skills needed for personal protection. Of concern is that youth with disabilities are three times more likely to experience sexual abuse than their typical peers and four times more likely to be the victims of sexual assault.7,8 Individuals with IDD often struggle with the abstract concept of sexuality. In some cases, they experience difficulty deciphering between appropriate behaviors within different types of relationships such as that with parents, intimate partners, friends, teachers, delivery people, and strangers. To comprehend sexuality, one must first appreciate social boundaries, which is another challenging concept for many people with IDD. The relationship with oneself is the foundation of social boundaries and must be appreciated before expanding into relationships with others. For example, it is appropriate to examine ourselves and touch our own bodies in socially appropriate situations.
Unfortunately, there remains no clear consensus on the best method(s) for providing sexuality education within the clinical setting for individuals with IDD. However, several resources exist for caretakers of youth and young adults with IDDs that may also support NPs who care for individuals in this population (Table 2).
One resource, the Circles Social Skills Utility™, an app for purchase on iPads and Chromebooks, offers users a unique method for simplifying the abstract concept of sexuality by first teaching appropriate social boundaries. Although the Circles curriculum was originally designed for use at home, school, and in the vocational setting, the Circles app may be of use in the clinic setting for NPs requiring an easy-to-use tool for teaching appropriate social boundaries to patients with IDD. The app utilizes colorful concentric circles and animated videos to demonstrate appropriate physical contact with people in each circle. The user uploads photos or creates avatars to place within each colored circle as instructed by the animated videos within the app. Each circle represents conceptual social boundaries as well as socially acceptable physical boundaries.16,17 The purple center circle represents the user. Intimate physical contact such as hugging and kissing is more appropriate with individuals placed within the circles closest to the innermost purple circle. For example, the circle closest to the purple individual circle is the blue, big hug circle. It is appropriate to have consensual close contact with individuals in this ring, such as parents, siblings, best friends, and intimate partners.17
Technology, such as computers, tablets, and smart phones, can be an asset to enhance the unique learning needs of individuals with IDD, when used appropriately.18–20 Although research is needed on the use of the Circles Social Skills Utility in the clinical setting, published data support the potential efficacy of teaching social boundaries via the Circles app to individuals with Autism and Down syndrome.17,21 A recently published pilot study demonstrated significant improvement in comprehension of appropriate social boundaries by young-adult females with Down syndrome after completing the video series in the Circles app compared to baseline assessment. Improvement occurred within each circle, ranging from 3.4% to 2700%. The areas of greatest improvement occurred within the outermost circles where physical contact should be minimal or nonexistent.21 Assuming further research supports similar efficacy of the Circles app in populations with IDD, this app may serve as a critical resource for the provision of fundamental sexual healthcare by NPs in the clinic setting.
Humans are sexual creatures, and the presence of an IDD does not preclude the need for sexuality assessment and education as a part of comprehensive healthcare. NPs should assess sexual health in individuals with IDD in the same manner as any other patient, with consideration of their unique learning styles. To comprehend the abstract concept of sexuality and intimacy, one must first understand appropriate social boundaries. Although limited, there are resources available that may benefit NPs in managing the sexual health of individuals with IDD.
Brooke M. Faught is a women’s health nurse practitioner and the Director of the Women’s Institute for Sexual Health (WISH), a division of Urology Associates, in Nashville, Tennessee. She is a Fellow of the International Society for the Study of Women’s Sexual Health and the American Association of Nurse Practitioners. She is also a North American Menopause Society certified menopause practitioner. The author states that she serves as a speaker and/or advisory board member for Agile Therapeutics, JDS Therapeutics, Lupin, Therapeutics MD, and Trophikos.
- World Health Organization. Education and treatment in human sexuality: the training of health professionals. Report of a WHO meeting. World Health Organ Tech Rep Ser. 1975;(572):5-33.
- The Arc. Position Statement. Sexuality. Washington, DC: The Arc; 2013.
- Rogers C. But it’s not all about the sex: mothering, normalisation and young learning disabled people. Disabil Soc. 2010;25(1):63-74.
- Lofgren-Martenson L. ‘‘I want to do it right!’’ A pilot study of Swedish sex education and young people with intellectual disabilities. Sex Disabil. 2011;30(2):209-225.
- Ginevra MC, Nota L, Stokes MA. The differential effects of Autism and Down’s syndrome on sexual behavior. Autism Res. 2016;9(1):131-140.
- Servais L. Sexual health care in persons with intellectual disabilities. Ment Retard Dev Disabil Res Rev. 2006;12(1):48-56.
- Lund EM, Vaughn-Jensen JE. Victimisation of children with disabilities. Lancet. 2012;380(9845):867-869.
- Plummer SB, Findley PA. Women with disabilities’ experience with physical and sexual abuse: review of the literature and implications for the field. Trauma Violence Abuse. 2012;13(1):15-29.
- Dune TM. Sexuality and physical disability: exploring the barriers and solutions in healthcare. Sexual Disabil. 2012;30(2):247-255.
- Taylor B, Davis S. The extended PLISSIT model for addressing the sexual wellbeing of individuals with an acquired disability or chronic illness. Sexual Disabil. 2007;25(3):135-139.
- Annon JS. The PLISSIT model: a proposed conceptual scheme for the behavioral treatment of sexual problems. J Sex Educ Ther. 1976;2(1):1-15.
- Quirk F, Haughie S, Symonds T. The use of the sexual function questionnaire as a screening tool for women with sexual dysfunction. J Sex Med. 2005;2(4):469-477.
- DeRogatis L, Clayton A, Lewis-D’Agostino D, et al. Validation of the female sexual distress scale-revised for assessing distress in women with hypoactive sexual desire disorder. J Sex Med. 2008;5(2):357-364.
- Quirk FH, Heiman JR, Rosen RC, et al. Development of a sexual function questionnaire for clinical trials of female sexual dysfunction. J Womens Health Gend Based Med. 2002;11(3):277-289.
- Symonds T, Boolell M, Quirk F. Development of a questionnaire on sexual quality of life in women. J Sex Marital Ther. 2005;31(5):385-397.
- Walker-Hirsch L, Champagne MP. The circles concept: social competence in special education. Educational Leadership. 1991:65-67.
- James Stanfield. Harvard University finds CIRCLES curriculum proven effective. Santa Barbara, CA: James Stanfield; 2016.
- Mechling LC, Gast DL, Krupa K. Impact of SMART board technology: an investigation of sight word reading and observational learning. J Autism Dev Disord. 2007;37(10):1869-1882.
- Rafi A. Using machine learning to match assistive technology to people with disabilities. Stud Health Technol Inform. 2017;242:409-412.
- Wiley B, Cameron D, Gulati S, Hogg A. Exploring the use of tablets (iPads) with children and young adults with disabilities in Trinidad. Disabil Rehabil Assist Technol. 2016;11(1):32-37.
- Faught BM, Moore G, Hande KA, Walker-Hirsch L. Social boundaries in young adult females with Down syndrome as a foundation for sexuality education. Am J Sexuality Educ. 2020;15(4):426-443.