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  1. Reproductive Health Care for Women With Disabilities

  2. OBJECTIVES • To identify the characteristics of the population of women with physical disabilities • To describe special considerations necessary in the gynecological exam for women with physical disabilities • To identify major health issues that are unique to women with physical, developmental or sensory disabilities. • To identify medical issues that require special consideration for women with disabilities. • To increase awareness of those things which facilitate access to health care for women with disabilities • To identify resources to support the OB-GYN treating women with disabilities

  3. Tutorial Outline • Part I: Introduction • Module 1: Scope of disability in women • Module 2: Sexuality • Module 3: Psychosocial issues • Part II: Routine GYN Health Care • Module 1: The GYN Examination • Module 2: GYN Health Screening : Breast and cervical cancer, STI’s, Skin examination

  4. Tutorial Outline • Part III - Medical considerations • Module 1: Contraception • Module 2: Abnormal uterine bleeding • Module 3: Pregnancy and parenting issues • Module 4: Diet, exercise and weight • Module 5: Adolescent issues • Module 6: Aging and osteoporosis • Part IV – Health issues specific to disability type • Module 1: Mobility impairments • Module 2: Developmental disabilities • Module 3: Sensory disabilities

  5. Tutorial Outline • Part V: Improving Access • Module 1: Requirements and incentives • Module 2: Sensitivity • Module 3: Universal design • Part VI: Resources



  8. Defining “Disability” “A physical or mental impairment that substantially limits one or more major life activities.” Source: Americans with Disabilities Act of 1990 (ADA)1

  9. Defining Health in Women with Disabilities (WWD) Challenge to the paradigm Disability ≠ sickness • Medical definitions of health • Perception of personal health among WWD • WHO definition of health

  10. WHO Definition of Health “Health is the state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity” Source: United Nations World Health Organization5

  11. Accessibility Activities of Daily Living – ADL Developmental disability Functional limitation - FL Glossary of Terms on Disability • Impairment • Instrumental Activities • of Daily Living – IADL • People-first language • Sensory disability • Severe disability • Universal design

  12. Disability TypesU.S. 1997 ages 18+ N = 59,939 Source: Diab and Johnston, 2004 8

  13. Women Aged 16-64by Type of Impairment- • 12% of all women aged 16-64 have one of these 3 types of disabilities N = 11 million women Source: US Census Supplementary Survey 20009

  14. Population of Women with DisabilitiesAge and Severity • 26 million American women have a disability • 63% are severe • 31% require assistance with ADL’s Source: US Census Bureau, American Community Survey 200210

  15. Adult Women with Disabilities,by Race and Severity Source: US Census Bureau, Survey of income and program participation 1996-7 12

  16. Education U.S. Women Ages 18-34 Source: U.S. Census Bureau, Survey of income and program participation 1996-712

  17. EmploymentU.S. Women Ages 21 - 64 Source: U.S. Census Bureau Supplementary Survey, 2000 9

  18. Poverty Rate by Gender and Type of Disability Source: National Health Interview Survey 2005 13

  19. Difficulty With Transportation Source: USDOT, Freedom to Travel, 200314

  20. Unmet Need Among Working-Age SSI Recipients: New York, 1999-2000 Working age = 18-64 yrs. Source: Coughlin TA, et al., Health Care Fin Rev, 2002 15

  21. Unmet Health Care Needs Reasons for unmet health care needs: • Limited availability of providers • Limited provider accessibility

  22. Surgeon General’s Call to Action To Improve The Health And Wellness Of Persons With Disabilities - 2005 Goals involve: • public awareness, • health care provider knowledge, • personal life style change, • accessible services

  23. Summary • Disability does not mean sickness • Disabilities are prevalent: 12% of women age 16 to 64 identify as having a disability • WWD face educational and economic barriers • WWD have unmet health needs

  24. References 1. Americans with Disabilities Act of 1990 (ADA), 42 USC § 12102 (2) accessed at on 12/10/07 2. Iezzoni LI, O’Day BL. More Than Ramps. 2006 Oxford University Press, New York: p18 3. Ibid. p 20 4. Marks MB. More than ramps: Accessible health care for people with disabilities. CMAJ 2006; 175(4): 329 5. WHO. Preamble to the Constitution of the World Health Organization as adopted by the International Health Conference, New York,19-22 June 1946, and entered into force on 7 April 1948. Accessed at 2/20/07 6. U.S. Census Bureau. Disability definitions. Downloaded from on 11/20/07 7. Carmona, R.Surgeon General’s Call to Action To Improve The Health And Wellness Of Persons With Disabilities. U.S. Dept. of Health and Human Services. 2005. Downloaded from on 12/10/07 8. Diab ME, Johnston MV. Relationships between level of disability and receipt of preventive health services. Arch Phys Med Rehabil. 2004 May; 85(5): 749-57 9. US Census Bureau American 2000. (disability types) Available at Accessed on 12/10/07 10. US Census Bureau. American Community Survey Available at : Accessed 12/10/07 11. McNeil JM. Americans with Disabilities: 1994-95, Washington DC: GPO, 1997 12. US Census Bureau. Survey of income and program participation 1996-97. Available at 13. National Center for Health Statistics. Vital and Health Statistics, Series 10, No. 232: Summary and Health Statistics for U.S. Adults: National Health Interview Survey, 2005. Centers for Disease Control and Prevention, Hyattsville MD, 2006. 14. U.S. Department of Transportation, Bureau of Transportation Statistics (2003b). Freedom to travel. BTS03-08. Washington, DC. 15. Coughlin TA, Long SK, Kendall SJ. Health care access use and satisfaction among disabled Medicaid beneficiaries. Health Care Financing Review 2002;24:115-36

  25. Module 2 SEXUALITY

  26. Overview • Background information on the sexual response cycle and neurological pathways • Factors affecting sexuality in women with disabilities • Barriers for health care providers (HCP) in talking about sexuality • Strategies for talking with and helping patients and their partners with sexual issues • Sexual Dysfunction • Adolescent sexuality

  27. Information About Sexuality Offered to Women with Disabilities Source: Beckman 1989 1

  28. Sexual Physiology • Sexual response mediated by nerve roots T10-L2 and S2-S4 • Vaginal lubrication involves S2-S4 • Up to 50% of women with spinal cord injury (SCI) can experience orgasm2 • Most information is generalized based on more thorough studies among men with disabilities

  29. Sources of Sexual Dysfunction • Primary: impairment of sexual feelings or response such as those that may arise as a result of the disability • Secondary: nonsexual impairment that affects sexuality such as emotional response • Tertiary: psychosocial or cultural issues that interfere with sexual experience such as gender role expectations.

  30. Women’s Sexual HealthBarriers to Knowledge • Research in female sexual function and dysfunction has lagged tremendously due to: • Inadequate funding of basic science research • Lack of basic science models of sexual response in female animals • Limited research on sexuality and WWD • Professional training in sexual health remains limited

  31. Traditional Model of Sexual Response Orgasm Multiple Orgasm Plateau Excitement Resolution Source: Masters & Johnson 19663

  32. Female Sexual Response Cycle Emotional Intimacy Motivates the sexually neutral woman Emotional and Physical Satisfaction to find/be responsive to “Spontaneous” Sexual Drive “Hunger” Sexual Stimuli Psychological and biological factors govern “arousability” Arousal & Sexual Desire Sexual Arousal Source: Modified from Basson, 20015

  33. Neurologic Pathways Involved in Female Sexual Functioning • Reflex vaginal lubrication mediated by: • Sacral parasympathetics • Psychogenic thoracolumbar sympathetics and sacral parasympathetics • Smooth muscle contraction of the uterus, fallopian tubes and paraurethral glands mediated by: • Thoracolumbar sympathetics • Contraction of striated pelvic floor muscles, perineal and anal sphincter muscles mediated by: • S2 to S4 parasympathetics along the somatic efferents Source: Sipski, 1991 2 and Griffith 1975 6

  34. Factors Affecting Sexual Function in WWD • Physiologic or mechanical limitations • Misconceptions and social stereotypes about ability to have and enjoy sex • Fear of the safety of having sexual relations • Concerns about body-image, self-esteem, self-concept • Depression, stress and anxiety • Fatigue • Pain • Life experiences (i.e. abuse)

  35. Anti-hypertensives Lipid-lowering agents Diuretics Antidepressants Immunosuppressive agents Anticonvulsants Anticholinergics Antispasmodics Oncologic agents Psychotropics Sedative-hypnotics Stimulants Anti-androgens Decongestants Antivirals Antiarrhythmics Medications Affecting Sexual Function Source: Nusbaum 20037

  36. Sexuality in Adolescent Girls With and Without Disabilities Girls’ Experiences at Age 16 by Physical Disability Status 1994-1995 Wave 1 Data from the National Longitudinal Study of Adolescent Health Probability sample of adolescents in grades 7-12 in US Schools. N = 24,105 Disability severity index is set on a functional, self and parent defined scale at the time of the survey Source: Cheng and Udry, 2002 (9)

  37. Sexuality in Adolescents with Disabilities • Need sexuality education and open discussion • May lack knowledge /skills for safe sex • Different disabilities affect puberty at different rates • Societal attitudes hinder sexual development more than their disability • Past sexual abuse likely to affect sexual expression

  38. Sexuality and Aging in Women With and Without Disabilities • Common changes experienced by menopausal women • Delayed orgasm • Vaginal dryness from vulvovaginal atrophy • Unique factors affecting sexual function in women with disabilities • Fatigue • Joint stiffness • Medication use

  39. Reasons for Not Discussing Sexuality Health care providers (HCPs) may be reluctant to discuss sexual health in WWD because: • Uncomfortable introducing the subject of sexual health • Unaware of how to address sexual concerns in WWD • Inquiry about sexual functioning is neglected due to the complexity of the patient’s underlying condition(s) • WWD are reluctant to bring up sexual concerns without HCP prompting • HCP has a negative stereotyping of WWD

  40. Taking a Sexual History Initiating the discussion lets the patient know that sexuality is an important aspect of health • Be Direct – Use developmentally appropriate language • Be Sensitive • Emphasize common concerns about sexual functioning to ease discomfort

  41. Taking a Sexual History (cont’) • Use open-ended and non-judgmental questions • After meeting with the patient see patient and partner together

  42. Strategies to Optimize Sexual Functioning in Women with Disabilities • General considerations • Dietary issues • Medication administration • Environmental issues • Psychological issues • Advocacy Issues Other provider counseling suggestions

  43. Strategies to Optimize Sexual Functioning in Women with Disabilities General considerations: • Educate woman and her partner on issues particular to her disability • Take into account: • Baseline sexual function • Sexual history • Other possible causes for sexual dysfunction

  44. Strategies to Optimize Sexual Functioning in Women with Disabilities Dietary Patients should be encouraged to: • Avoid tobacco • Limit alcohol intake • Delay sexual activity until 2 or more hours after drinking alcohol or eating Source: Nusbaum 2003 7 and Nusbaum 2001 20

  45. Strategies to Optimize Sexual Functioning in WWD Medication Administration Patients should be encouraged to: • Use analgesics (if needed) approximately 30 minutes before sexual activity • Reduce or switch to alternative medications that may not have as negative an impact on sexual functioning • Try muscle relaxants if hip or lower extremity spasticity interfere with enjoyment and/or performance • Treat underlying depression • Use a water-based personal lubricant to relieve vaginal dryness during sexual activity Source: Nusbaum 2003 7 and Nusbaum 2001 20

  46. Strategies to Optimize Sexual Functioning in WWD EnvironmentalPatients should be encouraged to: • Plan sexual activity when energy level is highest (and when rested and relaxed) • Plan sexual activity for time of day when symptoms tend to be the least bothersome • Avoid extremes of temperature • Experiment with different sexual positions • Use pillows to maximize comfort • Maintain physical conditioning to highest possible level • If sphincter control has been lost, empty bladder & bowel before sexual activity Source: Nusbaum 2003 7 and Nusbaum 2001 20

  47. Strategies to Optimize Sexual Functioning in WWD Psychologic Patients should be encouraged to: • Keep a healthy attitude. A positive perspective is an important aspect of maintaining sexual health • Enhance sexual expression through use of the senses • Maximize use of nonsexual intimate touching • Communicate likes, dislikes, and needs to partner • Use self-stimulation as needed to reduce anxiety, help with sleep, and provide general pleasure Source: Nusbaum 2003 7 and Nusbaum 2001 20

  48. Strategies to Optimize Sexual Functioning in WWD Advocacy • Promote the availability and use of private space for couples and individuals • Instruct caregivers and institutions on patient sexuality

  49. Strategies to Optimize Sexual Functioning in WWD Provider Counseling Suggestions • Target counseling to: • address body image, self-esteem, social acceptance • adjustment to reality of physical limitations and sexual functioning • foster mutual willingness of patient to have open, honest discussions with partner on effect of disability sexual functioning • Consider expert referral for sex therapy or cognitive behavioral therapy

  50. Strategies to Optimize Sexual Functioning in WWD Additional counseling tips: • Avoid assumptions • Assess needs • Tailor advice • Be creative • Involve partner • Explore involving other care givers