Abstract
Individuals with physical, intellectual, and developmental disabilities reproductively mature at the same rate as the general population. However, they often lag far behind their peers in access to education about the emotional, social, and medical challenges that accompany the physical changes of the emerging adult. By the time a young adult with a disability or chronic condition reaches an internist, preventative reproductive health has largely been rationalized as not necessary or simply forgotten. Access to education and reproductive health services is essential for the development of a sense of self; establishing fulfilling physical and emotional relationships; and protection from abuse and poor outcomes that can be anticipated and prevented. The approach to a patient’s sexuality and reproductive health needs varies across disabilities and chronic conditions and may require the support of physicians in other specialties. Understanding that each patient is a sexual being who requires attention to his or her sexuality and reproductive health needs will optimize the mental health, safety, and general health outcomes across the spectrum of physical, intellectual, and developmental disabilities.
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
References
The Arc Position Statement: Sexuality. Washington, DC. Adopted 2008. http://www.thearc.org/who-we-are/position-statements/life-in-the-community/sexuality. Accessed 24 Apr 2016.
Schwier KM, Hingsburger D. Sexuality: your sons and daughters with intellectual disabilities. Baltimore: Paul H. Brookes Publishing; 2000.
Fager S, Hancox D, Ely C, Stenhjem P, Gaylord V (eds). Impact: feature issue on sexuality and people with intellectual, developmental and other disabilities. Minneapolis: University of Minnesota, Institute on Community Integration; 2010. https://ici.umn.edu/products/impact/232/8.html. Accessed 24 Apr 2016.
Couwenhoven T. Sexuality education: building a foundation for healthy attitudes. [Internet] Lake Oswego: Disability Solutions. 2001;4(5). http://downsyndromenutrition.com/images/stories/dsolnsvol4/4-5.pdf. Accessed 24 Apr 2016.
Nosek MA, Howland CA, Rintala DH, Young ME, Chanpong GF. National study of women with physical disabilities: final report. Sex Disabil. 2001;19(1):5–39. https://www.bcm.edu/research/centers/research-on-women-with-disabilities/topics/sexuality-and-reproductive-health/national-study-executive-summary. Accessed 24 Apr 2016.
Murphy NA, Elias ER. Sexuality of children and adolescents with developmental disabilities. Pediatrics. 2006;118:398–403. http://www.pediatrics.org/cgi/content/full/118/1/398.
Tulloch T, Kaufman M. Adolescent sexuality. Pediatr Rev. 2013;34(1):29–38. http://pedsinreview.aappublications.org/content/34/1/29.
Kaufman M. Canadian Paediatric Society Adolescent Health Committee Position Statement: the sexual abuse of young people with a disability or chronic health condition. Posted 2011 reaffirmed 2016. http://www.cps.ca/documents/position/sexual-abuse-youth-disability-chronic-condition. Accessed 24 Apr 2016.
Couwenhoven T. Sexuality education: building a foundation for healthy attitudes. Lake Oswego: Disability Solutions; 2001;4(5). http://downsyndromenutrition.com/images/stories/dsolnsvol4/4-5.pdf. Accessed 24 Apr 2016.
Davis LA. People with intellectual disabilities and sexual violence. Rev 2011. Washington. http://www.thearc.org/what-we-do/resources/fact-sheets/sexual-violence. Accessed 24 Apr 2016.
McFarlane J. Abuse Assessment Screen-Disability (AAS-D): measuring frequency, type, and perpetrator of abuse toward women with physical disabilities. J Women’s Health Gend Med. 2001;10(9):861–866. http://www.acog.org/About-ACOG/ACOG-Departments/Women-with-Disabilities/Abuse-Assessment-Screen. Accessed 24 Apr 2016.
Smeltzer SC, Sharts-Hopko NC. A provider’s guide for the care of women with physical disabilities and chronic health conditions. North Carolina Office on Disability and Health in collaboration with Villanova University College of Nursing. 2005. http://fpg.unc.edu/sites/fpg.unc.edu/files/resources/other-resources/NCODH_ProvidersGuide.pdf. Accessed 24 Apr 2016.
Cox RL, Caroline Signore C, Quint E. Reproductive health care for women with disabilities. http://www.acog.org/About-ACOG/ACOG-Departments/Women-with-Disabilities/Interactive-site-for-clinicians-serving-women-with-disabilities. Accessed 24 Apr 2016.
Armour BS, Thierry JM, Wolf LA. State-level differences in breast and cervical cancer, 2008. Women’s Health Issues. 2009;19(6):406–14.
Simpson KM (ed). Table manners and beyond: the gynecological exam for women with developmental disabilities and other functional limitations. Oakland: Women’s Wellness Project; 2001. http://lurie.brandeis.edu/pdfs/TableMannersandBeyond.pdf. Accessed 24 Apr 2016.
Spinal Cord Injury Model System. Autonomic dysreflexia. 2015. https://media.bcm.edu/documents/2016/58/sci-autonomic-dysreflexia.pdf. Accessed 24 Apr 2016.
Centers for Disease Control and Prevention. Behavioral risk factor surveillance system survey data. Atlanta: U.S. Department of Health and Human Services, CDC; 2008. http://www.cdc.gov/brfss/.
US Department of Health and Human Services, Office on Disability. Access to quality health services and disability—a companion to chapter 1 of Healthy People; 2010. http://hhs.gov/od/about/fact_sheets/healthypeople2010.html.
McCarthy EP, Ngo LH, Roetzheim RG, Chirikos TN, Donglin L, Drews RE, et al. Disparities in breast cancer treatment and survival for women with disabilities. Ann Intern Med. 2006;145(9):637–45.
Centers for Disease Control and Prevention. The right to know health promotion campaign. 2008. http://www.cdc.gov/ncbddd/disabilityandhealth/righttoknow/documents/new/234117_rtkdisseminationguide_v5_508_v1.pdf. Accessed 24 Apr 2016.
Delaware Breast Cancer Coalition. Tips for Women with Disabilities (WWD): getting your mammogram. 2014. http://debreastcancer.org/index.php/information/mammography_sites_wwd/. Accessed 24 Apr 2016.
Centers for Disease Control and Prevention. The right to know health campaign. 2008 http://www.cdc.gov/ncbddd/disabilityandhealth/righttoknow/documents/tipsheetseng.pdf. Accessed 24 Apr 2016.
Quint EH. Adolescents with special needs: clinical challenges in reproductive health care. J Pediatr Adolesc Gynecol. 2016;29(1):2–6.
World Health Organization. Medical eligibility criteria for contraceptive use, 5th ed. 2015. http://apps.who.int/iris/bitstream/10665/181468/1/9789241549158_eng.pdf?ua=1. Accessed 24 Apr 2016.
Center for Research on Women with Disabilities (CROWD). Contraception. https://www.bcm.edu/research/centers/research-on-women-with-disabilities/topics/sexuality-and-reproductive-health/pelvic-health/women-with-disabilities/reproductive-health/contraception. Accessed 24 Apr 2016.
Welner S. A provider’s guide for the care of women with physical disabilities & chronic medical conditions. Chapel Hill: North Carolina Office on Disability & Health; 1999.
Rivera Drew JA. Hysterectomy and disability among U.S. women. Perspect Sex Reprod Health. 2013;45(3):157–63.
Planned Parenthood. Testicular Cancer. 2016. https://www.plannedparenthood.org/learn/men/testicular-cancer. Accessed 24 Apr 2016.
National Down Syndrome Society (ndss). Sexuality & down syndrome. www.ndss.org/Resources/Wellness/Sexuality/Sexuality-and-Down-Syndrome. Accessed 24 Apr 2016.
Spina Bifida Association. Health care for women. 2015. http://spinabifidaassociation.org/project/health-care-for-women/. Accessed 24 Apr 2016.
Spina Bifida Association. http://spinabifidaassociation.org. Accessed 24 Apr 2016.
Parent Project Muscular Dystrophy. Delayed puberty in duchenne muscular dystrophy. http://www.parentprojectmd.org/site/DocServer/Delayed_Puberty_Parent.pdf?docID=13125. Accessed 24 Apr 2016.
National Institutes of Health. National Heart, Lung, and Blood Institute. Division of Blood Diseases and Resources NIH Publication NO. 02-2117. The Management of Sickle Cell Disease. Originally printed 1984 previously revised 1989, 1995 reprinted June 1999 revised June 2002, 4h ed. http://www.nhlbi.nih.gov/files/docs/guidelines/sc_mngt.pdf. Accessed 24 Apr 2016.
Children’s Oncology Group. Long-term follow-up guidelines for survivors of childhood, adolescent, and young adult cancers. 2013. www.survivorshipguidelines.org. Accessed 24 Apr 2016.
Children’s Oncology Group. Long-term follow-up guidelines for survivors of childhood, adolescent, and young adult cancers. Version 4. 2013. http://www.survivorshipguidelines.org/pdf/LTFUGuidelines_40.pdf. Accessed 24 Apr 2016.
Livestrong. Comprehensive guide for fertility & family planning. http://www.livestrong.org/we-can-help/fertility-services/. Accessed 24 Apr 2016.
Yankanskas JR, Marshall BC, Sifian B, Simon RH, Rodman D. Cystic fibrosis adult care. Chest. 2004;125:1S–39S.
Author information
Authors and Affiliations
Corresponding author
Editor information
Editors and Affiliations
Appendix
Appendix
Resources
-
ACOG: http://www.acog.org/About_ACOG/ACOG_Departments/Women_with_Disabilities.
-
Baylor College of Medicine—Center for Research on Women with Disabilities (CROWD): https://www.bcm.edu/research/centers/research-on-women-with-disabilities.
-
Centers for Disease Control and Prevention: http://www.cdc.gov/ncbddd/disabilityandhealth/women.html.
-
Massachusetts Department of Public Health—Healthy Relationships, Sexuality and Disability Resource Guide: http://www.mass.gov/eohhs/docs/dph/com-health/prevention/hrhs-sexuality-and-disability-resource-guide.pdf.
-
A Provider’s Guide for the Care of Women with Physical Disabilities and Chronic Health Conditions: http://fpg.unc.edu/sites/fpg.unc.edu/files/resources/other-resources/NCODH_ProvidersGuide.pdf.
-
Sexuality Resource Center for Parents (SRCP):
-
Sexuality and Disability: A Guide for Parents: http://www.srcp.org/pdf_versions/Alberta.pdf.
-
University of Michigan—YourChild is a Website especially for parents about kids’ development and behavior. Sexuality Education for Youth with Disability or Chronic Illness—A Resource List: http://www.med.umich.edu/yourchild/topics/disabsex.htm.
-
Villanova NP guide to disability: https://www1.villanova.edu/villanova/nursing/community/npsknowdisabilitycare.html.
Rights and permissions
Copyright information
© 2016 Springer International Publishing Switzerland
About this chapter
Cite this chapter
LeComte, J.M. (2016). Sexual and Reproductive Health. In: Pilapil, M., DeLaet, D., Kuo, A., Peacock, C., Sharma, N. (eds) Care of Adults with Chronic Childhood Conditions. Springer, Cham. https://doi.org/10.1007/978-3-319-43827-6_23
Download citation
DOI: https://doi.org/10.1007/978-3-319-43827-6_23
Published:
Publisher Name: Springer, Cham
Print ISBN: 978-3-319-43825-2
Online ISBN: 978-3-319-43827-6
eBook Packages: MedicineMedicine (R0)