Abstract
Introduction
We examined the breadth of research on sex, sexuality, and sexual and reproductive health and rights with young people with intellectual disability in the past two decades.
Methods
An inclusive scoping approach focused on agency and resilience was used to review studies in English-speaking, high-income countries (2000–2019).
Results
In the 68 studies included, we found positive examples of sexual and reproductive agency across five key domains: 1) sexual development including sexual desire, identities, relationships, and menstruation, 2) sexual knowledge including sexuality education and sexual self-advocacy, 3) sexual activity and contraceptive use, 4) access to HPV immunization and cervical cancer screening, and 5) pregnancy, childbirth, and parenthood. The strongest factors in enabling agency were social support and sexuality education. However, several barriers including paternalist attitudes and infantilization of young people with intellectual disability affected all aspects of sexual expression, leading to the persistence of unfair and avoidable health inequities over the past two decades.
Conclusions
Ensuring young people with intellectual disability have a voice on all matters affecting their bodies, even if they have high support needs, is essential to promoting sexual and reproductive health and rights for all.
Policy Implications
Anti-ableist policies in sexual and reproduction health (e.g., education curriculum, service delivery) are key to moving forward.
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References
Aggleton, P. (2018). Youth. Sexuality and sexual citizenship. https://doi.org/10.4324/9781351214742
Akobirshoev, I., Parish, S. L., Mitra, M., & Rosenthal, E. (2017). Birth outcomes among US women with intellectual and developmental disabilities. Disability and Health Journal, 10(3), 406–412. https://doi.org/10.1016/j.dhjo.2017.02.010
American Psychiatric Association. (2013). Diagnostic and Statistical Manual for Mental Disorders. 5th Edition. American Psychiatric Press.
Arksey, H., & O’Malley, L. (2005). Scoping studies: Towards a methodological framework. International Journal of Social Research Methodology, 8(1), 19–32. https://doi.org/10.1080/1364557032000119616
Baines, S., Emerson, E., Robertson, J., & Hatton, C. (2018). Sexual activity and sexual health among young adults with and without mild/moderate intellectual disability. BMC Public Health, 18(1), 667. https://doi.org/10.1186/s12889-018-5572-9
Barnard-Brak, L., Schmidt, M., Chesnut, S., Wei, T., & Richman, D. (2014). Predictors of access to sex education for children with intellectual disabilities in public schools. Intellectual & Developmental Disabilities, 52(2), 85–97. https://doi.org/10.1352/1934-9556-52.2.851934
Bay-Cheng, L. Y. (2019). Agency is everywhere, but agency is not enough: A conceptual analysis of young women’s sexual agency. Journal of Sex Research, 56(4–5), 462–474. https://doi.org/10.1080/00224499.2019.1578330
Black, R. S., & Kammes, R. R. (2019). Restrictions, power, companionship, and intimacy: A metasynthesis of people with intellectual disability speaking about sex and relationships. Intellect Dev Disabil, 57(3), 212–233. https://doi.org/10.1352/1934-9556-57.3.212
Borawska-Charko, M., Rohleder, P., & Finlay, W. M. L. (2017). The sexual health knowledge of people with intellectual disabilities: A review. Sexuality Research and Social Policy, 14(4), 393–409. https://doi.org/10.1007/s13178-016-0267-4
Bowleg, L. (2008). When Black + lesbian + woman ≠ Black lesbian woman: The methodological challenges of qualitative and quantitative intersectionality research. Sex roles, 59(5–6), 312–325. https://doi.org/10.1007/s11199-008-9400-z
Brady, G., Lowe, P., & Olin Lauritzen, S. (2015). Connecting a sociology of childhood perspective with the study of child health, illness and wellbeing: introduction. Sociology of Health & Illness, 37(2), 173–183. https://doi.org/10.1111/1467-9566.12260
Brown, H. K., Cobigo, V., Lunsky, Y., Dennis, C. L., & Vigod, S. (2016a). Perinatal health of women with intellectual and developmental disabilities and comorbid mental illness. Canadian Journal of Psychiatry, 61(11), 714–723. https://doi.org/10.1177/0706743716649188
Brown, H. K., Cobigo, V., Lunsky, Y., & Vigod, S. (2017a). Postpartum acute care utilization among women with intellectual and developmental disabilities. J Womens Health (Larchmt), 26(4), 329–337. https://doi.org/10.1089/jwh.2016.5979([Comment in: J Womens Health (Larchmt). 2017 Apr;26(4):303–304; PMID: 28355095 [https://www.ncbi.nlm.nih.gov/pubmed/28355095]])
Brown, H. K., Cobigo, V., Lunsky, Y., & Vigod, S. (2019). Reproductive health in women with intellectual and developmental disabilities in Ontario: Implications for policy and practice. Healthc Q, 21(4), 6–9. https://doi.org/10.12927/hcq.2019.25748
Brown, H. K., Cobigo, V., Lunsky, Y., & Vigod, S. N. (2017b). Maternal and offspring outcomes in women with intellectual and developmental disabilities: A population-based cohort study. Bjog, 124(5), 757–765. https://doi.org/10.1111/1471-0528.14120
Brown, H. K., Kirkham, Y. A., Cobigo, V., Lunsky, Y., & Vigod, S. N. (2016b). Labour and delivery interventions in women with intellectual and developmental disabilities: A population-based cohort study. J Epidemiol Community Health, 70(3), 238–244. https://doi.org/10.1136/jech-2015-206426
Brown, H. K., Lunsky, Y., Wilton, A. S., Cobigo, V., & Vigod, S. N. (2016c). Pregnancy in women with intellectual and developmental disabilities. J Obstet Gynaecol Can, 38(1), 9–16. https://doi.org/10.1016/j.jogc.2015.10.00420152015.10.0042015
Brown, H. K., Plourde, N., Ouellette-Kuntz, H., Vigod, S., & Cobigo, V. (2016d). Brief report: Cervical cancer screening in women with intellectual and developmental disabilities who have had a pregnancy. Journal of Intellectual Disability Research, 60(1), 22–27. https://doi.org/10.1111/jir.12225
Brown, H. K., Potvin, L. A., Lunsky, Y., & Vigod, S. N. (2018a). Maternal intellectual or developmental disability and newborn discharge to protective services. Pediatrics, 142(6). https://doi.org/10.1542/peds.2018-1416
Brown, H. K., Ray, J. G., Liu, N., Lunsky, Y., & Vigod, S. N. (2018b). Rapid repeat pregnancy among women with intellectual and developmental disabilities: A population-based cohort study. Cmaj, 190(32), E949-e956. https://doi.org/10.1503/cmaj.170932
Brown, M., & McCann, E. (2018). Sexuality issues and the voices of adults with intellectual disabilities: A systematic review of the literature. Research in Developmental Disabilities, 74, 124–138. https://doi.org/10.1016/j.ridd.2018.01.009
Byrne, G. (2018). Prevalence and psychological sequelae of sexual abuse among individuals with an intellectual disability: A review of the recent literature. J Intellect Disabil, 22(3), 294–310. https://doi.org/10.1177/1744629517698844
Cense, M. (2019). Rethinking sexual agency: proposing a multicomponent model based on young people’s life stories. Sex Education, 19(3), 247–262. https://doi.org/10.1080/14681811.2018.1535968
Cheng, M., & Udry, J. (2005). Sexual experiences of adolescents with low cognitive abilities in the U.S. Journal of Developmental and Physical Disabilities, 17(2), 155–172. https://doi.org/10.1007/s10882-005-3686-3
Cheng, M. M., & Udry, J. R. (2002). How much do mentally disabled adolescents know about sex and birth control? [Mental Retardation 3256]. Adolescent & Family Health, 3(1), 28–38. http://ovidsp.ovid.com/ovidweb.cgi?T=JS&PAGE=reference&D=psyc4&NEWS=N&AN=2003-03731-007
Chinn, D., & Homeyard, C. (2017). Easy read and accessible information for people with intellectual disabilities: Is it worth it? A meta-narrative literature review. Health Expectations, 20(6), 1189–1200.
Chuah, I., McRae, A., Matthews, K., Maguire, A. M., & Steinbeck, K. (2017). Menstrual management in developmentally delayed adolescent females. Aust N Z J Obstet Gynaecol, 57(3), 346–350. https://doi.org/10.1111/ajo.12595
Cobigo, V., Ouellette-Kuntz, H., Balogh, R., Leung, F., Lin, E., & Lunsky, Y. (2013). Are cervical and breast cancer screening programmes equitable? The case of women with intellectual and developmental disabilities. Journal of Intellectual Disability Research, 57(5), 478–488. https://doi.org/10.1111/jir.12035
Collins, P. H. (1991). Black feminist thought: Knowledge, consciousness, and the politics of empowerment. Routledge.
Collins, P. H. (1998). It’s all in the family: Intersections of gender, race, and nation. Hypatia, 13(3), 62–82.
Conder, J., Mirfin-Veitch, B., Sanders, J., & Munford, R. (2011). Planned pregnancy, planned parenting: Enabling choice for adults with a learning disability [Developmental Disorders & Autism 3250]. British Journal of Learning Disabilities, 39(2), 105–112. https://doi.org/10.1111/j.1468-3156.2010.00625.x(MentalHandicap)
Crenshaw, K. (1989). Demarginalizing the intersection of race and sex: A black feminist critique of antidiscrimination doctrine, feminist theory and antiracist politics. The University of Chicago Legal Forum, 1989(1), 139–167.
Dionne, H., & Dupras, A. (2014). Sexual health of people with an intellectual disability: An ecosystem approach. J Sexologies, 23(4), e85–e89.
Dizon, C. D., Allen, L. M., & Ornstein, M. P. (2005). Menstrual and contraceptive issues among young women with developmental delay: A retrospective review of cases at the Hospital for Sick Children, Toronto. J Pediatr Adolesc Gynecol, 18(3), 157–162. https://doi.org/10.1016/j.jpag.2005.03.002
Dukes, E., & McGuire, B. E. (2009). Enhancing capacity to make sexuality-related decisions in people with an intellectual disability. Journal of Intellectual Disability Research, 53(8), 727–734. https://doi.org/10.1111/j.1365-2788.2009.01186.x
Elliott, L. (2017). Victims of violence: The forced sterilisation of women and girls with disabilities in Australia. Laws, 6(3), 8.
Fisher, M. H., Baird, J. V., Currey, A. D., & Hodapp, R. M. (2016). Victimisation and social vulnerability of adults with intellectual disability: A review of research extending beyond Wilson and Brewer., 51(2), 114–127. https://doi.org/10.1111/ap.12180
Ford, J. V., Corona Vargas, E., Finotelli Jr, I., Fortenberry, J. D., Kismödi, E., Philpott, A., Rubio-Aurioles, E., & Coleman, E. (2019). Why pleasure matters: Its global relevance for sexual health, sexual rights and wellbeing. International Journal of Sexual Health, 31(3), 217–230. https://doi.org/10.1080/19317611.2019.1654587
Frawley, P., & Bigby, C. (2014). “I’m in their shoes”: Experiences of peer educators in sexuality and relationship education. Journal of Intellectual Developmental Disability, 39(2), 167.
Frawley, P., & O’Shea, A. (2020). ‘Nothing about us without us’: Sex education by and for people with intellectual disability in Australia. Sex Education, 20(4), 413–424. https://doi.org/10.1080/14681811.2019.1668759
Frawley, P., & Wilson, N. (2016). Young people with intellectual disability talking about sexuality education and information. Sexuality & Disability, 34(4), 469–484. https://doi.org/10.1007/s11195-016-9460-x
Friedman, C., Arnold, C., Owen, A., & Sandman, L. (2014). “Remember our voices are our tools:” Sexual self-advocacy as defined by people with intellectual and developmental disabilities. A Journal Devoted to the Psychological and Medical Aspects of Sexuality in Rehabilitation and Community Settings, 32(4), 515–532. https://doi.org/10.1007/s11195-014-9377-1
Gill, M. (2015). Already doing it: Intellectual disability and sexual agency. University of Minnesota Press. https://doi.org/10.5749/j.ctt14jxvvh
Goldacre, A. D., Gray, R., & Goldacre, M. J. (2015). Childbirth in women with intellectual disability: Characteristics of their pregnancies and outcomes in an archived epidemiological dataset. J Intellect Disabil Res, 59(7), 653–663. https://doi.org/10.1111/jir.12169
Graff, H. J., Moyher, R. E., Bair, J., Foster, C., Gorden, M. E., & Clem, J. (2018). Relationships and sexuality: How is a young adult with an intellectual disability supposed to navigate? Sexuality & Disability, 36(2), 175–183. https://doi.org/10.1007/s11195-017-9499-3
Hanass-Hancock, J., Nene, S., Johns, R., & Chappell, P. (2018). The impact of contextual factors on comprehensive sexuality education for learners with intellectual disabilities in South Africa. Sexuality and Disability, 36(2), 123–140. https://doi.org/10.1007/s11195-018-9526-z
Hancock, A.-M. (2007). Intersectionality as a normative and empirical paradigm. Politics & Gender, 3(02), 248–254. https://doi.org/10.1017/S1743923X07000062
Hankivsky, O., & Christoffersen, A. (2008). Intersectionality and the determinants of health: A Canadian perspective. Critical Public Health, 18(3), 271–283.
Hankivsky, O., Doyal, L., Einstein, G., Kelly, U., Shim, J., Weber, L., & Repta, R. (2017). The odd couple: using biomedical and intersectional approaches to address health inequities. Glob Health Action, 10(sup2), 1326686. https://doi.org/10.1080/16549716.2017.1326686
Haynes, R. M., Boulet, S. L., Fox, M. H., Carroll, D. D., Courtney-Long, E., & Warner, L. (2018). Contraceptive use at last intercourse among reproductive-aged women with disabilities: An analysis of population-based data from seven states. Contraception, 97(6), 538–545. https://doi.org/10.1016/j.contraception.2017.12.008
Healy, E., McGuire, B. E., Evans, D. S., & Carley, S. N. (2009). Sexuality and personal relationships for people with an intellectual disability. Part I: Service-user perspectives. J Intellect Disabil Res, 53(11), 905–912. https://doi.org/10.1111/j.1365-2788.2009.01203.x
Hillard, P. J. A. (2012). Menstrual suppression with the levonorgestrel intrauterine system in girls with developmental delay. Journal of Pediatric and Adolescent Gynecology, 25(5), 308. https://doi.org/10.1016/j.jpag.2012.05.005
Horner-Johnson, W., Moe, E. L., Stoner, R. C., Klein, K. A., Edelman, A. B., Eden, K. B., et al. (2019). Contraceptive knowledge and use among women with intellectual, physical, or sensory disabilities: A systematic review. Disability and health journal, 12(2), 139–154.
Jahoda, A., & Pownall, J. (2014). Sexual understanding, sources of information and social networks: The reports of young people with intellectual disabilities and their non-disabled peers. J Intellect Disabil Res, 58(5), 430–441. https://doi.org/10.1111/jir.12040
Johnson, K., Frawley, P., Hillier, L., & Harrison, L. (2002). Living safer sexual lives: Research and action. Tizard Learning Disability Review, 7, 4–9. https://doi.org/10.1108/13595474200200022
Kohn, N. A., Blumenthal, J. A., & Campbell, A. T. (2012). Supported decision-making: A viable alternative to guardianship. Penn St. L. Rev., 117, 1111.
Kramers-Olen, A. (2017). Quantitative assessment of sexual knowledge and consent capacity in people with mild to moderate intellectual disability., 47(3), 367–378. https://doi.org/10.1177/0081246317726457
Malouf, R., Henderson, J., & Redshaw, M. (2017a). Access and quality of maternity care for disabled women during pregnancy, birth and the postnatal period in England: Data from a national survey. BMJ Open, 7(7), e016757. https://doi.org/10.1136/bmjopen-2017-016757
Malouf, R., McLeish, J., Ryan, S., Gray, R., & Redshaw, M. (2017b). ‘We both just wanted to be normal parents’: A qualitative study of the experience of maternity care for women with learning disability. BMJ Open, 7(3). https://doi.org/10.1136/bmjopen-2016-015526
Mandell, D. S., Eleey, C. C., Cederbaum, J. A., Noll, E., Hutchinson, M. K., Jemmott, L. S., & Blank, M. B. (2008). Sexually transmitted infection among adolescents receiving special education services. J Sch Health, 78(7), 382–388. https://doi.org/10.1111/j.1746-1561.2008.00318.x
Mayes, R., Llewellyn, G., & McConnell, D. (2006). Misconception: The experience of pregnancy for women with intellectual disabilities. Scandinavian Journal of Disability Research, 8(2–3), 120–131. https://doi.org/10.1080/15017410600774178
McCall, L. (2005). The complexity of intersectionality. Signs, 30(3), 1771–1800.
McCarthy, M. (2009a) Contraception and women with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 22 4 363 369 https://doi.org/10.1111/j.1468-3148.2008.00464
McCarthy, M. (2009b). ‘I have the jab so I can’t be blamed for getting pregnant’: Contraception and women with learning disabilities. Women’s Studies International Forum, 32(3), 198. https://doi.org/10.1016/j.wsif.2009.05.003
McCarthy, M. (2010). Exercising choice and control—Women with learning disabilities and contraception. British Journal of Learning Disabilities, 38(4), 293–302. https://doi.org/10.1111/j.1468-3156.2009.00605.x
McCarthy, M. (2014). Women with intellectual disability: Their sexual lives in the 21st century. Journal of Intellectual & Developmental Disability, 39(2), 124–131. https://doi.org/10.3109/13668250.2014.894963
McClelland, A., Flicker, S., Nepveux, D., Nixon, S., Vo, T., Wilson, C., et al. (2012). Seeking safer sexual spaces: queer and trans young people labeled with intellectual disabilities and the paradoxical risks of restriction. Journal of Homosexuality, 59(6), 808–819. https://doi.org/10.1080/00918369.2012.694760
McConnell, D., Mayes, R., & Llewellyn, G. (2008a). Pre-partum distress in women with intellectual disabilities. J Intellect Dev Disabil, 33(2), 177–183. https://doi.org/10.1080/13668250802007903
McConnell, D., Mayes, R., & Llewellyn, G. (2008b). Women with intellectual disability at risk of adverse pregnancy and birth outcomes. J Intellect Disabil Res, 52(Pt 6), 529–535. https://doi.org/10.1111/j.1365-2788.2008.01061.x
McDaniels, B., & Fleming, A. (2016). Sexuality education and intellectual disability: Time to address the challenge. Sexuality and Disability, 34, 1–11. https://doi.org/10.1007/s11195-016-9427-y
Medina-Rico, M., López-Ramos, H., Quiñonez, A. J. S., & Disability. (2018). Sexuality in people with intellectual disability: Review of literature [journal article]., 36(3), 231–248. https://doi.org/10.1007/s11195-017-9508-6
Mitra, M., Parish, S. L., Clements, K. M., Cui, X., & Diop, H. (2015). Pregnancy outcomes among women with intellectual and developmental disabilities. American journal of preventive medicine, 48(3), 300. https://doi.org/10.1016/j.amepre.2014.09.032
Mosher, W., Hughes, R. B., Bloom, T., Horton, L., Mojtabai, R., & Alhusen, J. L. (2018). Contraceptive use by disability status: New national estimates from the National Survey of Family Growth. Contraception, 97(6), 552–558. https://doi.org/10.1016/j.contraception.2018.03.031
Murphy, G. H., & O’Callaghan, A. (2004). Capacity of adults with intellectual disabilities to consent to sexual relationships [Developmental Disorders & Autism 3250]. Psychological Medicine, 34(7), 1347–1357. https://doi.org/10.1017/S0033291704001941
Murray, L. B. (2019). Sexual health education for adolescents with developmental disabilities. The Health Education Journal, 78(8), 1000–1011. https://doi.org/10.1177/0017896919859605
Ngwena, C. G. (2018). Reproductive autonomy of women and girls under the Convention on the Rights of Persons with Disabilities. International Journal of Gynecology & Obstetrics, 140(1), 128–133.
Nind, M. A., & Strnadová, I. (2020). Belonging for people with profound intellectual and multiple disabilities: Pushing the boundaries of inclusion in education, research and community. Routledge.
O'Callaghan, A. C., & Murphy, G. H. (2007). Sexual relationships in adults with intellectual disabilities: understanding the law. J Intellect Disabil Res, 51(Pt 3), 197–206. http://ovidsp.ovid.com/ovidweb.cgi?T=JS&PAGE=reference&D=med5&NEWS=N&AN=17300415https://onlinelibrary.wiley.com/doi/full/10.1111/j.1365-2788.2006.00857.x
O'Neill, J., Elia, S., & Perrett, K. P. (2019a). Human papillomavirus vaccine uptake in adolescents with developmental disabilities. J Intellect Dev Disabil, 44(1), 98–102. https://doi.org/10.3109/13668250.2017.1310827
O’Neill, J., Newall, F., Antolovich, G., Lima, S., & Danchin, M. (2019b). The uptake of adolescent vaccinations through the School Immunisation Program in specialist schools in Victoria Australia. Vaccine, 37(2), 272. https://doi.org/10.1016/j.vaccine.2018.11.034
O’Shea, A., & Frawley, P. (2019) Gender, sexuality and relationships for young Australian women with intellectual disability Disability & Society 1–22. https://doi.org/10.1080/09687599.2019.1647148
Osborn, D. P. J., Horsfall, L., Hassiotis, A., Petersen, I., Walters, K., & Nazareth, I. (2012). Access to cancer screening in people with learning disabilities in the UK: Cohort study in the health improvement network, a primary care research database. PLoS One, 7(8), e43841. https://doi.org/10.1371/journal.pone.0043841
Parish, S. L., Mitra, M., Son, E., Bonardi, A., Swoboda, P. T., & Igdalsky, L. (2015). Pregnancy Outcomes Among U.S. Women With Intellectual and Developmental Disabilities. Am J Intellect Dev Disabil, 120(5), 433–443. https://doi.org/10.1352/1944-7558-120.5.433
Parish, S. L., & Saville, A. W. (2006). Women with cognitive limitations living in the community: evidence of disability-based disparities in health care. Ment Retard, 44(4), 249–259. https://doi.org/10.1352/0047-6765(2006)44[249:Wwclli]2.0.Co;2
Parish, S. L., Swaine, J. G., Luken, K., Rose, R. A., & Dababnah, S. (2012). Cervical and breast cancer-screening knowledge of women with developmental disabilities. Intellectual and Developmental Disabilities, 50(2), 79. https://doi.org/10.1352/1934-9556-50.2.79
Pillai, M., O'Brien, K., & Hill, E. (2010). The levonorgestrel intrauterine system (Mirena) for the treatment of menstrual problems in adolescents with medical disorders, or physical or learning disabilities. Bjog, 117(2), 216–221. https://doi.org/10.1111/j.1471-0528.2009.02372.x
Pownall, J., Wilson, S., & Jahoda, A. (2017). Health knowledge and the impact of social exclusion on young people with intellectual disabilities. J Appl Res Intellect Disabil. https://doi.org/10.1111/jar.12331
Redshaw, M., Malouf, R., Gao, H., & Gray, R. (2013). Women with disability: The experience of maternity care during pregnancy, labour and birth and the postnatal period. BMC pregnancy and childbirth, 13(1). https://doi.org/10.1186/1471-2393-13-174
Reynolds, F., Stanistreet, D., & Elton, P. (2008). Women with learning disabilities and access to cervical screening: Retrospective cohort study using case control methods. BMC Public Health, 8(1), 30–30. https://doi.org/10.1186/1471-2458-8-30
Rowe, B., & Wright, C. (2017). Sexual knowledge in adolescents with intellectual disabilities: A timely reflection. Journal of Social Inclusion, 8(2), 42–53.
Rutter, M. (2006). Implications of resilience concepts for scientific understanding. Ann NY Acad Sci, 1094(1), 1–12. https://doi.org/10.1196/annals.1376.002
Savasi, I., Jayasinghe, K., Moore, P., Jayasinghe, Y., & Grover, S. R. (2014). Complication rates associated with levonorgestrel intrauterine system use in adolescents with developmental disabilities. Journal of Pediatric and Adolescent Gynecology, 27(1), 25. https://doi.org/10.1016/j.jpag.2013.08.010
Schaaf, M. (2011). Negotiating sexuality in the convention on the rights of persons with disabilities. SUR-Int’l J. on Hum Rts., 14, 113.
Servais, L. (2006). Sexual health care in persons with intellectual disabilities. Mental Retardation and Developmental Disabilities Research Reviews, 12(1), 48–56. https://doi.org/10.1002/mrdd.20093
Shandra, C., & Chowdhury, A. (2011). The first sexual experience among adolescent girls with and without disabilities. A Multidisciplinary Research Publication, 41(4), 515–532. https://doi.org/10.1007/s10964-011-9668-0
Shandra, C. L., Shameem, M., & Ghori, S. J. (2016). Disability and the context of boys’ first sexual intercourse. Journal of Adolescent Health, 58(3), 302–309. https://doi.org/10.1016/j.jadohealth.2015.10.013
Shearer, D. L., Mulvihill, B. A., Klerman, L. V., Wallander, J. L., & et al. (2002). Assoication of early childbearing and low cognitive ability. Perspectives on sexual and reproductive health, 34(5), 236–243. https://search.proquest.com/docview/224559519?accountid=12763http://primoa.library.unsw.edu.au/openurl/61UNSW_INST/UNSW_SERVICES_PAGE?url_ver=Z39.88-2004&rft_val_fmt=info:ofi/fmt:kev:mtx:journal&genre=article&sid=ProQ:ProQ%3Asociology&atitle=Assoication+of+early+childbearing+and+low+cognitive+ability&title=Perspectives+on+Sexual+and+Reproductive+Health&issn=15386341&date=2002-09-01&volume=34&issue=5&spage=236&au=Shearer%2C+Darlene+L%3BMulvihill%2C+Beverly+A%3BKlerman%2C+Lorraine+V%3BWallander%2C+Jan+L%3Bet+al&isbn=&jtitle=Perspectives+on+Sexual+and+Reproductive+Health&btitle=&rft_id=info:eric/12392216&rft_id=info:doi/
Sheppard, L. (2006). Growing pains: a personal development program for students with intellectual and developmental disabilities in a specialist school. Journal of Intellectual Disabilities, 10(2), 121–142. https://login.wwwproxy1.library.unsw.edu.au/login?url=http://search.ebscohost.com/login.aspx?direct=true&db=cin20&AN=106330410&site=ehost-live&scope=sitehttps://doi.org/10.1177/1744629506064009
Shildrick, M. (2007). Contested pleasures: The sociopolitical economy of disability and sexuality. Sexuality Research & Social Policy, 4(1), 53–66. https://doi.org/10.1525/srsp.2007.4.1.53
Shuttleworth, R. (2007). Critical research and policy debates in disability and sexuality studies. Sexuality Research & Social Policy, 4(1), 1–14. https://doi.org/10.1525/srsp.2007.4.1.01
Spencer, G. (2013). Empowerment, health promotion and young people: A critical approach. Empowerment, Health Promotion and Young People: A Critical Approach, 1–183. https://doi.org/10.4324/9780203071038
Starrs, A. M., Ezeh, A. C., Barker, G., Basu, A., Bertrand, J. T., Blum, R., et al. (2018). Accelerate progress: Sexual and reproductive health and rights for all: report of the Guttmacher-Lancet Commission. The Lancet, 391(10140), 2642–2692. https://doi.org/10.1016/S0140-6736(18)30293-9
Sutherland, R. J., & Isherwood, T. (2016). The evidence for easy-read for people with intellectual disabilities: A systematic literature review. Journal of Policy and Practice in Intellectual Disabilities, 13(4), 297–310.
Swaine, J. G., Parish, S. L., Luken, K., Son, E., & Dickens, P. (2014). Test of an intervention to improve knowledge of women with intellectual disabilities about cervical and breast cancer screening. Journal of Intellectual Disability Research, 58(7), 651–663. https://doi.org/10.1111/jir.12062
Tepper, M. S. (2000). Sexuality and disability: The missing discourse of pleasure. Sexuality and disability, 18(4), 283–290.
Trainor, A. A. (2007). Perceptions of adolescent girls with ld regarding self-determination and postsecondary transition planning [Special & Remedial Education 3570]. Learning Disability Quarterly, 30(1), 31–45. https://doi.org/10.2307/30035514
Tricco, A., Lillie, E., Zarin, W., O’Brien, K., Colquhoun, H., Levac, D., Moher, D., Peters, M., Horsley, T., Weeks, L., Hempel, S., Akl, E., Chang, C., McGowan, J., Stewart, L., Hartling, L., Aldcroft, A., Wilson, M., Garritty, C., & Straus, S. (2018). PRISMA extension for scoping reviews (PRISMA-ScR): Checklist and explanation. Annals of Internal Medicine, 169. https://doi.org/10.7326/M18-0850
Turner, G. W., & Crane, B. (2016a). Pleasure is paramount: Adults with intellectual disabilities discuss sensuality and intimacy. Sexualities, 19(5–6), 677–697. https://doi.org/10.1177/1363460715620573
Turner, G. W., & Crane, B. (2016b). Sexually silenced no more, adults with learning disabilities speak up: A call to action for social work to frame sexual voice as a social justice issue. British Journal of Social Work, 46(8), 2300–2317. https://doi.org/10.1093/bjsw/bcw133
United Nations. (2006). Convention on the rights of persons with disabilities. https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html
Walmsley, J., & Johnson, K. (2004). Inclusive research with people with learning disabilities: Past, present and futures. Jessica Kingsley Publishers.
Wheeler, P. (2007). ‘I count myself as normal, well, not normal, but normal enough’ men with learning disabilities tell their stories about sexuality and sexual identity. Learning Disability Review, 12(1), 16–27. https://login.wwwproxy1.library.unsw.edu.au/login?url=http://search.ebscohost.com/login.aspx?direct=true&db=cin20&AN=105927659&site=ehost-live&scope=site
Whittle, C., & Butler, C. (2018). Sexuality in the lives of people with intellectual disabilities: A meta-ethnographic synthesis of qualitative studies. Research in Developmental Disabilities, 75, 68–81. https://doi.org/10.1016/j.ridd.2018.02.008
Wilkinson, V. J., Theodore, K., & Raczka, R. (2015). “As normal as possible”: Sexual identity development in people with intellectual disabilities transitioning to adulthood [Mental Retardation 3256]. Sexuality and Disability, 33(1), 93–105. https://doi.org/10.1007/s11195-014-9356-6
Williams, F., Scott, G., & McKechanie, A. (2014). Sexual health services and support: The views of younger adults with intellectual disability. Journal of Intellectual Developmental Disability, 39(2), 147–156. https://doi.org/10.3109/13668250.2014.899326
Wissink, I. B., Van Vugt, E., Moonen, X., Stams, G.-J.J., & Hendriks, J. (2015). Sexual abuse involving children with an intellectual disability (ID): A narrative review. Research in Developmental Disabilities, 36, 20–35.
Wolfe, P. S., Wertalik, J. L., Domire Monaco, S., Gardner, S., & Ruiz, S. (2019). Review of sociosexuality curricular content for individuals with developmental disabilities., 34(3), 153–162. https://doi.org/10.1177/1088357618800040
Wu, J., Jianying, Z., Mitra, M., Parish, S. L., Minama Reddy, G. K., & Zhang, J. (2018a). Provision of moderately and highly effective reversible contraception to insured women with intellectual and developmental disabilities. Obstetrics & Gynecology, 132(3), 565–574. https://doi.org/10.1097/AOG.0000000000002777
Wu, J., Zhang, J., Mitra, M., Parish, S. L., & Minama Reddy, G. K. (2018b). Provision of moderately and highly effective reversible contraception to insured women with intellectual and developmental disabilities. Obstet Gynecol, 132(3), 565–574. https://doi.org/10.1097/aog.0000000000002777
Yacoub, E., & Hall, I. (2009). The sexual lives of men with mild learning disability: A qualitative study. British Journal of Learning Disabilities, 37(1), 5–11. https://doi.org/10.1111/j.1468-3156.2008.00491.x
Zhang, Y., McLain, A. C., Davis, B., & McDermott, S. (2019). Fecundity and infertility among women with disabilities in the United States. Journal of Women's Health (15409996), 28(7), 934–940. https://doi.org/10.1089/jwh.2018.7267
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This review was funded through an Emerging Investigator Award from UNSW Sydney.
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All authors contributed to the conception of this paper. Database searching and data extraction were conducted by AC and CW. AC, ISW, and CW drafted the initial manuscript; AC, ISW, and JL discussed and revised the draft, using an easy-read version; all the authors provided critical feedback. All the authors have critically reviewed and approved the final manuscript, gave approval for publication, and acted as guarantors of the work.
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Carter, A., Strnadová, I., Watfern, C. et al. The Sexual and Reproductive Health and Rights of Young People with Intellectual Disability: A Scoping Review. Sex Res Soc Policy 19, 372–390 (2022). https://doi.org/10.1007/s13178-021-00549-y
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DOI: https://doi.org/10.1007/s13178-021-00549-y