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Reproductive Health Care for Women With Disabilities

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1 Reproductive Health Care for Women With Disabilities
3/25/2017 Reproductive Health Care for Women With Disabilities Welcome to our tutorial, Reproductive Health Care for Women with Disabilities. I am Dr. Raymond Cox, an obstetrician –gynecologist practicing in Baltimore Maryland and the chair of ACOG’s Committee for Underserved Women. I will be narrating this tutorial along with my colleague, Dr. Caroline Signore, an obstetrician gynecologist and researcher at the National Institutes of Child Health and Human Development. This work has been developed by an expert panel of Obstetrician-Gynecologists who have been assembled through the American College of Obstetricians and Gynecologists as a sub-committee of the Committee on Health Care for Underserved Women. Elizabeth Quint, MD from Ann Arbor, MI serves as the faculty for the content. This work has been fully sponsored by the Centers for Disease Control and Prevention, Center on Birth Defects and Developmental Disabilities through a cooperative agreement

2 3/25/2017 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 CME credit is available for each module of this tutorial. This tutorial has been developed to better prepare the obstetrician-gynecologist and other health care professionals for addressing the issues in women’s health care that are unique for women with physical, sensory and developmental disabilities. It will also aid health care providers to link to clinical resources for the purpose of assuring access to comprehensive reproductive health care for this underserved population.

3 Tutorial Outline Part I: Introduction Part II: Routine GYN Health Care
3/25/2017 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 Each module takes minutes. Users are encouraged to choose the modules of greatest interest and skip around. In Part l, we will define and discuss a variety of disabilities and how women are impacted by them. Women with disabilities are often viewed as asexual. However, as with the general population, sexuality plays a major role in their lives. Module 2 guides the health care provider in the discussion of sexuality and treatment of issues regarding sexuality. Psychosocial issues often affect women with disabilities at a disproportionate rate. Module 3 looks at issues such as depression, substance use, smoking and domestic violence. In Part ll routine GYN health care is discussed. In module 1 the provider is guided through the adaptations that facilitate the GYN examination for women with physical , developmental and sensory disabilities. And Module 2 explores routine health screening issues including breast and cervical cancer, sexually transmitted infections, and examination of the skin.

4 Tutorial Outline Part III - Medical considerations
3/25/2017 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 Continuing on with the tutorial outline, Part lll explores medical considerations necessary when caring for women with disabilities. The modules here include contraception; abnormal uterine bleeding, pregnancy and parenting, diet, exercise and weight, adolescent issues and aging and osteoporosis. Part lV describes health care issues that are specific to disability type including mobility, developmental and sensory disabilities. In this part we explore considerations for the provider when working with women who have disabilities such as spinal cord injuries, cerebral palsy, multiple sclerosis, spina bifida, hearing and vision impairments, and Down syndrome and other developmental disabilities.

5 Tutorial Outline Part V: Improving Access Part VI: Resources
3/25/2017 Tutorial Outline Part V: Improving Access Module 1: Requirements and incentives Module 2: Sensitivity Module 3: Universal design Part VI: Resources Part V includes important information regarding office practices including what is required by the ADA Act of 1990 and how to become a practice that welcomes all people regardless of ability. We end the tutorial program with a discussion of the resources available to the clinician and patient.

6 3/25/2017 Part I INTRODUCTION First, we want to give the viewer a snapshot of the prevalence of disability among women of reproductive age and to delve into the medical and socioeconomic issues that impact this population and the medical provider.

7 3/25/2017 Module 1 SCOPE OF DISABILITY

8 Defining “Disability”
3/25/2017 Defining “Disability” “A physical or mental impairment that substantially limits one or more major life activities.” It is best to start with a definition of disability. There are different types of definitions of disability: Health care definitions, legal definitions and social definitions Until recently disability was described as– “a problem of the person directly caused by disease, trauma or other health condition, which requires medical care”(2). Today we most commonly use legal definitions of disability. In the United States Code of Law, there are 67 citations where disability is defined in a different way. However, the most commonly accepted definition was crafted in the Americans with Disabilities Act of 1990(1). It is important to recognize the significant role language has had in reinforcing society’s assumptions about groups of people. Among the disabilities’ community, there is resistance against society’s continued insistence on classifying people with disabilities by their impairments In fact, in the Social Model of Disability, disability is defined in terms of restrictions imposed on disabled people by society and social organizations. In the Social Model, disability is not an attribute of an individual, but an attitudinal one requiring social change (3). Source: Americans with Disabilities Act of 1990 (ADA)1

9 Defining Health in Women with Disabilities (WWD)
3/25/2017 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 Defining “health” for women with disabilities can be challenging. If a definition of health focuses only on the absence of disease or functional ability, women with disabilities could be considered unhealthy. However, the majority of community-dwelling women with disabilities, perceive themselves as healthy. Individuals with sensory or physical impairments may not consider themselves as disabled as they define the word. Instead of being viewed as “sick,” women with disabilities express a desire to be seen as “whole” persons, to have physicians’ help in maximizing their physical, mental, emotional, and reproductive health and well-being (4). Many women with disabilities express concerns over their limitations in ability to participate fully in society despite good health, or their ability to engage in or maintain healthy behaviors.

10 WHO Definition of Health
3/25/2017 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 Instead of a disease-based definition of health, for women with disabilities, perhaps a more helpful definition of health is contained in the United Nations World Health Organization definition: “Health is the state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity”(5).

11 Glossary of Terms on Disability
3/25/2017 Glossary of Terms on Disability Accessibility Activities of Daily Living – ADL Developmental disability Functional limitation - FL Impairment Instrumental Activities of Daily Living – IADL People-first language Sensory disability Severe disability Universal design This tutorial includes terms that may not be familiar to women’s health clinicians or that involve further explanation as they refer to disabilities. Some of the data presented may use a term but the sources do not define or quantify the term. For the purposes of this tutorial we will use the definitions from either the U S Census Bureau (6) or the 2005 Surgeon General’s Call to Action ti Improve the Health and Wellness of Persons with Disabilities.(7) U.S. Department of Health and Human Services, Office of the Surgeon General, 2005 Click the word above to access the definition. You may also want to print out this simple glossary. PUT THE INFO BELOW IN A SEPARATE BOX WHICH CAN BE LINKED TO THESE WORDS – WHEN USING THESE TERMS IN THE TUTORIAL TEXT LINK TO THE DEFINITION BELOW. Accessibility: The degree to which an environment makes appropriate accommodations to eliminate barriers or outer impediments to equality of access to facilities, services, and the like, for persons with disabilities. Activities of Daily Living (ADL) – Basic tasks of every-day life or personal functional activities required for continued well-being, including eating or nutrition, mobility and personal hygiene. Developmental disability – A severe, chronic disability of an individual attributable to a mental or physical impairment or combination of impairments that a) manifests before the individual attains 22 years of age; b) is likely to continue indefinitely; and c) results in substantial functional limitations in 3 or more of the following areas of major life activity: self-care, receptive and expressive language, learning, mobility, self-direction, capacity for independent living and economic self-sufficiency, and the continuous need for individually planned and coordinated services. Functional Limitation or FL is the decreased capacity related to body functions, activities, and participation in aspects of individual family and community life. The degree of severity of a disability is often tied to the number and degree of functional limitations. Examples of FLs could include the inability to: coordinate movements. manipulate objects, hear, see, speak, maintain posture, change position, walk, climb stairs, bend over, feel touch or pain, or to have the intellectual capacity to live independently or make safe and healthy decisions. Impairment – A loss, abnormality or deficit in body structure or physiological function (including mental functions). Abnormality refers to significant variation from a population mean within measured standard norms. Instrumental Activities of Daily Living (IADL) – Skills and abilities related to independent living within home , work and social environment, for example: preparing meals, managing money, or using a telephone without the assistance of another. People-first language – The practice of reshaping common language to refer to persons with disabilities in a manner that is respectful and inclusive. By placing the “person” descriptor before the “condition” descriptor (e.g., a woman who is deaf or a teen who uses a wheel chair). People-first language recognizes that individuals with disabilities are first and foremost people with inherent value, individuality, dignity, and capabilities. Sensory disability – A person with long lasting blindness, deafness, or severe vision or hearing impairment (Census 2000) Severe disability –People 15 and over were identified as having a severe disability if they were unable to perform one or more functional activities; needed personal assistance with an ADL or IADL; used a wheelchair; were a long-term user of a cane, crutches, or a walker; had a developmental disability or Alzheimer's disease; were unable to do housework; were receiving federal disability benefits; or were 16 to 67 years old and unable to work at a job or business. (Survey of Income and Program Participation (SIPP) Universal design - The creation of goods, products and physical environments that are, to the greatest extent possible, both accessible and usable by all persons without the need for adaptation or specialized design.

12 Disability Types U.S. 1997 ages 18+
3/25/2017 Disability Types U.S ages 18+ The distribution of disability is highly dependent on the population studied and definition of disability. This slide shows a distribution of disability types for adults from a national sample of about 60,000 who answered in the affirmative to questions on disability in the 1997 US Survey of Income and Program Participation (SIPP). Quite often, an individual may experience several types of disability simultaneously (8). N = 59,939 Source: Diab and Johnston,

13 Women Aged 16-64 by Type of Impairment-
3/25/2017 Women Aged by Type of Impairment- 12% of all women aged have one of these 3 types of disabilities N = 11 million women This is a simplified pie chart from 2000 US Household Supplementary Census data focusing on non-institutionalized women aged 16 to 64. Of the total population of 91 million US women aged 16-64, eleven million women were identified as having a physical, mental or sensory disability. Source: US Census Supplementary Survey 20009

14 Population of Women with Disabilities Age and Severity
3/25/2017 Population of Women with Disabilities Age 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 The incidence of disability increases with age. Data from the 2002 American Community Survey indicated that 26 million women aged 15 and over have a disability (9). These data demonstrate the high rate of disability among women over 65 years. Today, with baby boomers aging, dramatic increases in disability conditions associated with aging such as arthritic conditions, osteoporosis/fractures, Parkinson’s disease and stroke are expected. Considering all ages, 20% of all Americans are disabled. Among all women with disabilities, 63% or million have severe disabling conditions. Of those whose disabilities are considered severe, 31% or 5.66 million require assistance with activities of daily living or ADLs (9), such as mobility, communication, eating, toileting and grooming.

15 Adult Women with Disabilities, by Race and Severity
3/25/2017 Adult Women with Disabilities, by Race and Severity Data on this slide come from SIPP, the Survey of Income and Program Participation, for women aged (12) It breaks down disability in women by race; non-hispanic black women have the greatest rate of severe disability. A severe disability in this report is defined as those who: Are long-term users of a wheelchair, cane, crutches or walker; Have a mental/emotional condition that seriously interferes with daily activities Have a developmental disability or Alzheimer’s disease; Receive federal benefits because of their disability. Are unable to perform or need help with functional activities, i.e. hearing, seeing, lifting, grasping Need assistance with one or more activities of daily living or instrumental activities of daily living; Are unable to perform housework or Are unable to work at a job if between the ages of 16 and 67; Source: US Census Bureau, Survey of income and program participation

16 Education U.S. Women Ages 18-34
3/25/2017 Education U.S. Women Ages 18-34 Women with disabilities are among the most economically and socially isolated groups. As this slide indicates, they are also less likely than able-bodied women to graduate from college or to secure a professional degree. Source: U.S. Census Bureau, Survey of income and program participation

17 Employment U.S. Women Ages 21 - 64
3/25/2017 Employment U.S. Women Ages Women with disabilities are less likely to be employed. When they are employed they earn less than non-disabled women, and men with or without disabilities. In addition, employment and earnings decrease with the increasing severity of disability. For the purposes of this slide and as defined by the U S Census Bureau in Census 2000, Supplementary Survey, those with self care disabilities have a physical, mental or emotional condition lasting 6 months or more that make it difficult to perform certain activities like dressing, bathing, or getting around inside the home. Source: U.S. Census Bureau Supplementary Survey,

18 Poverty Rate by Gender and Type of Disability
3/25/2017 Poverty Rate by Gender and Type of Disability These data are extrapolated from the 2005 National Health Interview Survey measuring economic well being for people with disabilities ages People with disabilities were more likely to live in poverty than people without disabilities. And women with physical and sensory disabilities were more likely than men with disabilities to live in poverty.(13) Source: National Health Interview Survey

19 Difficulty With Transportation
3/25/2017 Difficulty With Transportation Transportation is a major issue for people with all types of disabilities. There are a variety of reasons that people with disabilities may have difficulty accessing transportation with the greatest barrier reported being no or limited public transportation. For more information on transportation and women with disabilities, please go to Part 5 of this tutorial, Improving Access. Source: USDOT, Freedom to Travel,

20 Unmet Need Among Working-Age SSI Recipients: New York, 1999-2000
3/25/2017 Unmet Need Among Working-Age SSI Recipients: New York, Working age = yrs. People with disabilities have trouble getting their medical care needs met, even those with medical insurance. This slide shows data from Coughlin et. al. on New York City men and women with disabilities who are covered by Medicaid Supplemental Security Income (SSI). New York is known to have one of the most comprehensive Medicaid programs, therefore people with disabilities living in other states may experience greater unmet healthcare needs. In Coughlin’s sample of SSI recipients, 60% of those who reported unmet health care needs had negative consequences from their health care problem, such as worsening, no improvement, or prolonged recovery. Source: Coughlin TA, et al., Health Care Fin Rev,

21 Unmet Health Care Needs
3/25/2017 Unmet Health Care Needs Reasons for unmet health care needs: Limited availability of providers Limited provider accessibility Coughlin et. al. further discussed the reasons mentioned for unmet health care needs and categorized them into issues of provider availability and accessibility (15). Approximately 30% of SSI recipients reported issues such as: The providers don’t accept Medicaid, It is difficult to locate a provider and Those providers who are taking patients have no appointments available. In addition Approximately 15-30% of recipients reported accessibility issues such as: Location Transportation Hours of operation Physical barriers within the office and Language and communication barriers.

22 3/25/2017 Surgeon General’s Call to Action To Improve The Health And Wellness Of Persons With Disabilities Goals involve: public awareness, health care provider knowledge, personal life style change, accessible services In 2005, Surgeon General Ricard Caromona, MD, MPH, FACS issued a national Call to Action to Improve the Health and Wellness of Persons with Disabilities. (7) To quote Dr. Carmona “this Call to Action encourages health care providers to see and treat the whole person, not just the disability; educators to teach about disability; a public to see an individual’s abilities, not just his or her disability; and a community to ensure accessible health care and wellness services for persons with disabilities.” The Call to Action looks to the following goals: People nationwide understand that persons wit disabilities can lead long, healthy, productive lives. Health care providers have the knowledge and tools to screen, diagnose and treat the whole person with disability with dignity Persons with disabilities can promote their own good health be developing and maintaining healthy lifestyles. Accessible health care and support services promote independence for persons with disabilities Challenges identified for health care providers include Overlooking the needs of persons with disabilities when decisions about community adaptations, health and service delivery and health care policy are made. This will be discussed in Part V Health services are insufficiently integrated to meet the needs of the “whole person’ and not just the disabling condition. See Parts 2 and 5 Insufficient attention is paid by the health care system on the prevention of secondary conditions in persons with disabilities,, specifically the prevention of important conditions such as obesity, type II diabetes, depression and substance abuse. See Module 3 in this Part

23 Summary Disability does not mean sickness
3/25/2017 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 Read slide In his 2005 Call to Action, Surgeon General Richard Carmona challenged the public to reframe their concept of people with disabilities, the health care community to be informed and prepared to offer inclusive and accessible services, and people with disabilities to consider healthy changes in their life style.

24 3/25/2017 References 1. Americans with Disabilities Act of 1990 (ADA), 42 USC § (2) accessed at on 12/10/07 2. Iezzoni LI, O’Day BL. More Than Ramps 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 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 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 May; 85(5): 9. US Census Bureau American (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: , Washington DC: GPO, 1997 12. US Census Bureau. Survey of income and program participation 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, Centers for Disease Control and Prevention, Hyattsville MD, 2006. 14. U.S. Department of Transportation, Bureau of Transportation Statistics (2003b). Freedom to travel. BTS 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 3/25/2017 Module 2 SEXUALITY Sexuality and sexual expression are a basic human function and quality of life issue. As women with disabilities are now surviving into adulthood, their need for information and direction on sexual health also increases. This module explores the issue of sexuality with women with disabilities.

26 3/25/2017 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 In this section we will discuss important issues of sexuality for women with many types of disabilities. It includes: background information to elucidate the sexual response cycle in women with neurologic disabilities and contributing factors affecting sexuality for women with disabilities. We will discuss factors that limit and assist the discussion of sexuality between health care providers, women with disabilities and their partners as well as the sexual dysfunction that may occur with some disabilities. This section was developed by Dr. Crista Johnson, Clinical Lecturer in OB/GYN at U. Michigan, Ann Arbor.

27 Information About Sexuality Offered to Women with Disabilities
3/25/2017 Information About Sexuality Offered to Women with Disabilities Some disabilities interfere with sexual behavior by limiting movement or making movement painful, however, disabilities do not in themselves mediate sexual desire. From convenience sample research, the Center for Research on Women with Disabilities (CROWD) found that 70% of women with physical disabilities are sexually active (2). Women with disabilities require information on sexuality to help develop their own sexual response and to prevent disease and abuse. This slide is data from a study by Beckman’s using a convenience sample of 55 physically disabled women who were attending a disability association conference or using an outpatient clinic. It indicates that this group of women (1): Wanted information about sexuality, but very few were actually asked Less than 20% of practitioners offered them sexuality information One-third of these women were satisfied with the counseling they received Only one in five of the women sampled said that they felt their sexual needs were understood by their health care provider. According to Beckman’s report, dissatisfaction with the advice offered may be related to the relatively small proportion of WWD who perceived that providers understood their condition well enough to make recommendations Source: Beckman

28 3/25/2017 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 There is a paucity of data on sexual physiology for individuals with disabling conditions and most of these studies have been done with men with disabilities. What has been determined is that: Vaginal lubrication is reflexive, involving S2-S4 T10-L2 and S2-S4 mediate clitoral erection, uterine and pelvic floor contractions, and internal sensation About 50% of women retain the ability to experience orgasm after spinal cord injury (2) Masters and Johnson noted that response can be enhanced by sensory amplification. In other words, using thought to achieve a higher level of satisfaction (3).

29 Sources of Sexual Dysfunction
3/25/2017 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. Sexual dysfunction can result from physiological, emotional/mental or sociologic causes. When working on sexual dysfunction for women with disabilities, all of these factors should be explored (4).

30 Women’s Sexual Health Barriers to Knowledge
3/25/2017 Women’s Sexual Health Barriers 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 In the last decade there have been significant discoveries and improvements in MALE sexual function and dysfunction. The study of female sexual dysfunction for all women has not kept pace with males because of inadequate funding and the lack of parallel sexual response in female animals. Data on sexual dysfunction in women with disabilities is even more scarce. Clinicians receive little training on sexuality in general, and so do not have a foundation to draw from when working with WWD on special issues regarding sexual health.

31 Traditional Model of Sexual Response
3/25/2017 Traditional Model of Sexual Response Orgasm Multiple Orgasm Plateau Excitement Resolution For the clinician, a knowledge of the female sexual response cycle is important in understanding the impact of disabilities on sexual functioning. In the past 40 years, we have made significant strides in our understanding of female sexual response. The traditional model of human sexual response was first characterized by Masters and Johnson in 1966, and it consisted of 4 successive phases: Excitement Plateau Orgasm Resolution This model assumes a linear progression from an initial awareness of sexual desire to one of arousal with a focus on genital swelling and lubrication, to orgasmic release and resolution. However this traditional model fails to take into account factors outside of genital vasocongestion. Taking in the emotional component of sexual response, in 1979 Kaplan proposed a three-phase model consisting of desire, arousal and orgasm, with desire being the factor inciting the overall response cycle (4). Source: Masters & Johnson 19663

32 Female Sexual Response Cycle
3/25/2017 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 More recently, the Female Sexual Response Cycle, as illustrated by Rosemary Basson in 2001, describes women’s sexual motivation as far more complex than simply the presence or absence of sexual desire. At the initial stage, there is sexual neutrality, but, with positive motivation, the woman instigates or agrees to sex. This motivation may include a desire to express love, to receive and share physical pleasure, to feel emotionally closer, to please the partner and to increase her own well-being. This leads to a willingness to find and consciously focus on sexual stimuli. These stimuli, although processed in the mind, are influenced by biological and psychological factors. The resulting state is one of subjective sexual arousal. Continued stimulation allows sexual excitement and pleasure to become more intense, triggering desire for sex itself: Therefore sexual desire, although absent initially, may grow with continued stimulation. Sexual satisfaction, with or without orgasm, results when the stimulation continues over a period of time and the woman can stay focused to enjoy the sensation of sexual arousal and is free from any negative outcome such as PAIN. It is important to note that the robust correlation seen in men between subjective arousal and genital congestion (erection) is not seen in women. Rather, sexual arousal in women is more strongly modulated by thoughts and emotions triggered by the state of sexual excitement. Psychological and biological factors govern “arousability” Arousal & Sexual Desire Sexual Arousal Source: Modified from Basson, 20015

33 Neurologic Pathways Involved in Female Sexual Functioning
3/25/2017 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 The neurologic pathways in vaginal lubrication have not been fully described. The best data we have on sexual functioning in women with disabilities comes from Marsha Sipski’s work on sexual functioning in women with spinal cord injuries (SCIs). Evidence of neurogenic sexual function in women with SCIs demonstrates that the sympathetic nervous system can stimulate psychogenic sexual arousal. In women with complete upper motor neuron (UMN) injuries, reflex lubrication is maintained In women with incomplete upper motor neuron injuries, reflex and psychogenic lubrication is maintained (i.e women with sensory preservation of T11-L2 will have a greater likelihood of achieving psychogenic lubrication regardless of injury) As mentioned, the ability to achieve orgasm persists in approximately 50% of women with spinal cord injuries Studies have demonstrated: that orgasms may be a reflex response of the autonomic nervous system, an intact sacral reflex arc is needed to achieve orgasm, sensations associated with orgasm may be preserved even in women with complete spinal cord injuries (2) (6). Source: Sipski, and Griffith

34 Factors Affecting Sexual Function in WWD
3/25/2017 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) There are a host of factors that affect the sexual function of WWD. These factors may influence the woman or her partner’s willingness to engage in sexual or intimate relations. Factors can be physical, due directly to the disability (such as spasms or immobility), or result from indirect consequences of the disability (such as fatigue or pain) They can be emotional or mental resulting from issues such as grief, body image, self-esteem, depression And they can be societal or social due to misconceptions about a woman’s ability to have and enjoy sex (7) (8).

35 Medications Affecting Sexual Function
3/25/2017 Medications Affecting Sexual Function Oncologic agents Psychotropics Sedative-hypnotics Stimulants Anti-androgens Decongestants Antivirals Antiarrhythmics Anti-hypertensives Lipid-lowering agents Diuretics Antidepressants Immunosuppressive agents Anticonvulsants Anticholinergics Antispasmodics Medications such as antihypertensives, lipid-lowering agents, diuretics, and antidepressants are widely prescribed in the general population and have been shown to affect sexual functioning. However these and other medications such as immunosuppresive agents, anticonvulsants, anticholinergics and antispasmodics are more commonly prescribed among those with disabilities (7). It may be possible to discontinue or adjust some medications that interfere with sexual functioning. When this is not possible, the physician may help the patient and partner develop alternative means of sexual expression and intimate contact as mentioned later in this module. Source: Nusbaum 20037

36 Sexuality in Adolescent Girls With and Without Disabilities
3/25/2017 Sexuality in Adolescent Girls With and Without Disabilities Girls’ Experiences at Age 16 by Physical Disability Status Physical Disability Status Never Had Sex All Consensual Been Forced No disability 66.3 27.7 6.0 Minimal disability 48.2 40.9 10.9 Mild disability 63.7 23.4 12.9 Severe disability 57.9 31.0 11.1 Teens with disabilities are about as likely to have sexual experiences as other teens. This chart is from a large national survey done within US high schools focusing on 16 year old girls. What is striking is that girls with physical disabilities were about twice as likely to have forced sexual experiences than girls with no disability. A statewide survey of Minnesota teens in the 7th to 12th grade ( ) found no significant difference between females with disabilities and controla in their history of ever having had sex. The age at first intercourse among those young women ever having had sex ranged from 13.9 to 14.2 years. However a significantly greater proportion of these female teens with physical disabilities reported a history of STDs than did the controls. (10) 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
3/25/2017 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 Adolescents with disabilities have a right to proper sexual education. As noted in the previous slide, they participate in sexual relationships, however many do not have the adequate knowledge and skills to keep them healthy, safe and satisfied. (11) Their sexual development may be hindered by both functional limitations and by societal barriers. The health care provider needs to facilitate sexuality education with the adolescent patient, and, when appropriate, with parents and caregivers. Some specific issues concerning sexual development for adolescents with disabilities include: Girls with cerebral palsy tend to start puberty earlier, but the pubescent period is lengthier. (11) Females with spina bifida also typically have an earlier menarche. (11) Children with developmental disabilities are 20 times more likely then their able bodied peers to experience early pubertal changes (11). Many children with disabilities, particularly those with developmental disabilities, have experienced sexual abuse or assault. This will affect their ability to discuss sex and their means of sexual expression. Link to Sexual Abuse, in Psychosocial module More about teen sexual activity can be found in the contraception and developmental disabilities modules in Parts 3 and 4 (link).

38 Sexuality and Aging in Women With and Without Disabilities
3/25/2017 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 Progressive aging can alter sexual function in all women, including women with disabilities. Menopausal women in general may experience delayed orgasm and vaginal dryness. In women with disabilities, the aging process may exacerbate sexual dysfunction. This may be due to disability related factors such as fatigue and joint stiffness. Also, as these women age, they may be using more of the medications, previously mentioned, which may affect sexual functioning (12). Disability resulting from neurologic conditions such as spina bifida, spinal cord injury, multiple sclerosis and stroke may be linked with disorders of orgasm, sexual desire, sexual arousal and vaginal dryness in women as they age (13) (14) (15).

39 Reasons for Not Discussing Sexuality
3/25/2017 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 There may be a number of reasons why health providers are reluctant to discuss sexual health proactively with women with disabilities. Some have to do with the provider’s discomfort of the issue of sexuality, others include societal assumptions about women with disabilities such as: Women with disabilities are ‘asexual’ and have no sexual desire Women with disabilities who are single are celibate All women with disabilities are heterosexual “Normal” heterosexual sex means vaginal intercourse Orgasm is necessary for ‘real’ sex Women must be attractive, as defined by cultural norms to ‘find love’ Women with disabilities live in a protected environment and have no opportunity for sexual contact Sex should not be discussed or planned but must be spontaneous These assumptions contribute to a sense of failure for women with disabilities (7) (16) (17).

40 Taking a Sexual History
3/25/2017 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 When taking a sexual history, the clinician will likely need to lead the discussion and approach it as a routine part of the gynecologic history and exam. For example, the provider may start with a statement such as: “It is common for people with <_this condition_> to notice changes in their sexual lives. Has weakness or pain <or- then list other symptoms> limited your sexual activity?

41 Taking a Sexual History (cont’)
3/25/2017 Taking a Sexual History (cont’) Use open-ended and non-judgmental questions After meeting with the patient see patient and partner together To continue, when taking a sexual history it is important to: Use open-ended and non-judgmental questions to inquire about the presence of a sexual problem, and explore what the patient or couple may have done to resolve the problem. After meeting with the patient, see the patient and partner together if possible to assess the effectiveness of the couple’s general communication, and their ability to discuss sexual concerns (7) (18).

42 Strategies to Optimize Sexual Functioning in Women with Disabilities
3/25/2017 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 Management options to optimize sexual functioning are multifactorial. The next few slides review strategies that address several major factors.

43 Strategies to Optimize Sexual Functioning in Women with Disabilities
3/25/2017 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 Management of sexual function in women with disabilities must begin with education of the woman and her partner on the known physical and neurologic changes related to her particular disability, as well as its impact on sexual functioning. In addition, one must take into account a woman’s baseline sexual function, sexual history and physical disabilities, including other possible etiologies of female sexual dysfunction, in order to render the appropriate treatment and management (19).

44 Strategies to Optimize Sexual Functioning in Women with Disabilities
3/25/2017 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 It may be beneficial to plan sexual activity to take place several hours after eating and to reduce or eliminate the use of offending agents such as alcohol and tobacco (18) (20). Source: Nusbaum and Nusbaum

45 Strategies to Optimize Sexual Functioning in WWD
3/25/2017 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 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 No treatment with proven efficacy and widespread availability has been developed to manage neurogenic female sexual dysfunction. However, in a randomized controlled trial, Sildenafil has been shown to increase subjective arousal compared to placebo under conditions of optimal stimulation in women with spinal cord injury (21). Source: Nusbaum and Nusbaum

46 Strategies to Optimize Sexual Functioning in WWD
3/25/2017 Environmental Patients 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 The timing of sexual activity is important for women with disabilities to achieve the greatest satisfaction. Positioning is another important consideration, and the woman should be encouraged to experiment with many different positions using pillows and other props as needed. In some instances it may be necessary for an assistant or third party to assist in positioning for couples and also for masturbation. Source: Nusbaum and Nusbaum

47 Strategies to Optimize Sexual Functioning in WWD
3/25/2017 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 The health care provider should encourage the patient to enhance the senses through nonsexual touch and the use of lubricants, massage, dancing, music, scented candles, and signals for indicating when something is particularly pleasurable. Areas of the body that allow sensation should be identified and utilized to augment sexual expression. Couples should also be encouraged to expand their sexual repertoire by exploring: oral-genital sex fantasy sensory experiences such as those just mentioned and erotic audiovisual stimulation They need to discuss any evolving issues or concerns with each other as well as with their health care provider, sex counselor or therapist Source: Nusbaum and Nusbaum

48 Strategies to Optimize Sexual Functioning in WWD
3/25/2017 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 Private space with a partner or for self stimulation is the right of people with disabilities who have the capacity for sexual consent. Some women with disabilities may need their health providers to advocate for this privacy. This may be particularly important for women with developmental disabilities and women living in group homes and other institutions.

49 Strategies to Optimize Sexual Functioning in WWD
3/25/2017 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 Counseling Tips for the health provider include: Taking the initiative to address the topic, including with adolescent patients. Patients want this information but often hesitate to ask—by asking, the provider lets them know that their questions are normal and appropriate In counseling, remember that sexual dysfunction may be Primary: The disabling process itself limits sexual response Secondary: Caused by side effects such as. spasticity, pain, contracture, fatigue and Tertiary: Both psychosocial and environmental

50 Strategies to Optimize Sexual Functioning in WWD
3/25/2017 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 Other counseling tips include: Avoid assumptions; Don’t assume abilities or inabilities and sexual orientation; suspend judgment Use questions to increase understanding of a woman’s needs and limitations and respond to the specific issue; admit when you don’t know Tailor advice and recommendations to the individual woman and situation Use developmentally appropriate explanations Be creative – explore different approaches Also remember to ask about her partner and, when appropriate, other caregivers (20). Now that you as a provider are more aware of the issues of sexuality for women with disabilities, you may want to consider becoming a local resource on the issue. More specific information on female sexual dysfunction is available by clicking the link on this slide LINK HERE TO CHART ON SEXUAL DYSFUNCTION

51 Evaluation of Sexual Dysfunction in Women with Disabilities
3/25/2017 Evaluation of Sexual Dysfunction in Women with Disabilities Multi-disciplinary Approach is KEY Primary Health Care Provider and/or clinician with expertise in Female Sexual Dysfunction Psychiatrist Sex Therapist Physical Therapist Social Worker Urologist (Male partner Sexual Dysfunction) A multi-disciplinary approach is essential in addressing sexual dysfunction in women with disabilities. Based on the needs of the patient, an inter-disciplinary team approach incorporates the expertise of a team of providers. This team can include: The clinician knowledgeable in the management of Female Sexual Dysfunction, A psychiatrist to manage any underlying mental health condition without negatively impacting sexual function, A sex therapist to explore individual or couples’ sexual health counseling, A physical therapist to work with the patient and/or partner on pelvic floor relaxation techniques, use of dilators, massage, etc. A social worker to help in addressing psychosocial concerns, And, where appropriate, a urologist to assist with male partner sexual dysfunction.

52 3/25/2017 Summary - Sexuality Women with disabilities have the need and ability to express their sexuality HCPs can provide education and advocacy to support sexual expression Most barriers can be overcome by perseverance and creativity In summary, comprehensive gynecological health care for women with disabilities of all ages includes taking a sexual history and providing education and resources on sexuality. In some cases this may also include advocacy with institutions and parents to support the women’s need for sexual expression. Strategies to optomize sexual functioning in women with disabilities should explore: dietary issues, medication administration, environmental issues, psychological issues and advocacy Issues An understanding of the sexual response cycle and neurological pathways is important when considering counseling women with disabilities experiencing sexual dysfunction. There are several good resources on sexuality for women with disabilities.

53 Reference on Sexuality for Women with Disabilities
3/25/2017 Reference on Sexuality for Women with Disabilities Kroll K, Levy EL. Enabling romance: a guide to love, sex and relationships for the disabled (and the people who care about them). New York: Harmony Books, 1992. Journal of Sexuality and Disabilities – quarterly journal published by Springerlink. Resource slide – link

54 Web References on Sexual Health for Health Care Providers
3/25/2017 Web References on Sexual Health for Health Care Providers American Association of Sex Educators, Counselors, and Therapists Educational resource on Female Sexual Dysfunction for health professionals: Society for the Scientific Study of Sexuality International Society for the Study of Women’s Sexual Health International Academy of Sex Research Resource slide - link

55 3/25/2017 References Beckmann CR, Gittler M, Barzansky BM, Beckmann CA. Gynecologic health care of women with disabilities. Obstet Gynecol. 1989;74:75-9. Sipski ML. Spinal cord injury: What is the effect on sexual response? J Amer Paraplegia Soc 1991;14(2):40-43 Masters WH, Johnson VE. Human Sexual Response. Reproductive Biology Research Foundation. Boston: Little Brown 1966 Kaplan HS. The New Sex Therapy, Vol 2. Disorders of Sexual Desire and other New Concepts and Techniquesin Sex Therapy. New York: Brunner/Mazel 1979. Basson R. Female Sexual Response: The role of drugs in the management of sexual dysfunction. Obstet Gynecol 2001;98: Griffith ER, et al. Sexual functioning in women with spinal cord injury. Arch Phys Med Rehabil 1975;56(1):18-21 Nusbaum MR, et al. Chronic illness and sexual functioning. Amer Fam Phys 2003;67(2):347-54 Nosek MA, et al.Sexual functioning among women with physical disabilities Arch Phys Med Rehab 1996;77:107-15 Cheng MM, Udry JR. Sexual behaviors of physically disabled adolescents in the United States. Journal of Adolescent Health 2002;31:48-58 Suris JC, Resnick MD, Cassuto N, Blum RW. Sexual behavior of adolescents with chronic disease and disability. Journal of Adolescent Health 1996;19:124-31 Murphy N, Young PC. Sexuality in children and adolescents with disabilities. Dev Med & Child Nerol 2005:47: Drugs that cause sexual dysfunction: an update. Medical Lett Drugs Ther 1992;34:73-8 Reference slide

56 3/25/2017 References (cont) Foley FW, et al.Qualitative evaluation of obstacles facing multiple sclerosis societies in addressing sexual dysfunction in MS. Int J MSCare Vol 1 Issue 1. p Available at Zorzon M. Sexual dysfunction in multiple sclerosis: a case-control study. 1. Frequency and comparison of groups. Mult Scler 1999:5:41827 Marinkovic S, Badlani G. Voiding and sexual dysfunction after cerbrovascular accidents. J Urol 2001;165:359-70 Saxton M. Reclaimimg sexual self-esteem – peer counseling for disabled women. West J Med 1991;154:630-31 Basson R. Sexual health of women with disabilities. Can Med Assoc J. 1998;159: Nusbaum MR, Hamilton C. The proactive sexual health inquiry: key to effective sexual health care. Amer Fam Phys 2002;66: Sipski ML. Central nervous system based neurogenic female dysfunction: Current status and future trends. Arch Sex Behav 2002;31(5):421-24 Nusbaum MR. Sexual Health Monograph No. 267, Home study self-assessment program. Leawood, Kan.: American Academy of Family Physicians, 2001 Sipski ML. Sildenafil effects on sexual and cardiovascular responses in women with spinal cord injury. Urology 2000;55(6): Sipski MJ. A psychiatrist’s views regarding the report of the International Consensus Conference on female sexual dysfunction: Potential concerns regarding women with disabilities. Sex Mar Ther 2001;27:215-6. Reference slide

57 Female Sexual Dysfunction – Classifications
3/25/2017 Female Sexual Dysfunction – Classifications Sexual Desire/Interest Disorder Hypoactive sexual desire disorder (deficiency of sexual thoughts or desire for sex) May be due to psychological factors or secondary to hormone deficiencies or surgical intervention Sexual aversion disorder (phobic aversion to and avoidance of sexual contact) Usually psychological in origin, due to trauma Female Sexual Arousal Disorder Sexual Arousal Disorder (FSAD) (inability to attain or maintain sexual excitement expressed as a lack of subjective excitement or lack of genital responses e.g. lubrication, swelling) May be psychological or physiological in origin In 2003 The American Federation of Urologic Disease (AFUD) revised and expanded definitions of Female Sexual Dysfunction (FSD) to consider the many reasons women agree to or instigate sexual activity, and reflect the importance of subjective sexual arousal. Of note in terms of sexual desire/interest disorder: A lack of responsive desire, rather than solely a lack of innate desire is the KEY to the diagnosis Feelings of sexual interest/desire/thoughts/fantasies AND responsive desire are absent or diminished. Motivating reasons or incentives for attempting to become sexually aroused are scarce or absent – for women with disabilities this may include the lack of access to appropriate partner or the lack of a private space. The lack of interest is beyond the normative lessening that may occur with life cycle and relationship duration Minimal spontaneous sexual thinking, fantasizing or desire ahead of sexual activity DOES NOT NECESSARILY constitute a disorder. When motivation to be sexual for any reason is minimal, or sexual stimulation does not cause arousal and concurrent desire to continue, then disorder is present. There are three dimensions of Sexual Arousal Disorder worth emphasizing: subjective, genital, and combined subjective and genital arousal disorder: Subjective Sexual Arousal Disorder is characterized by: Absent or markedly reduced subjective sexual arousal from any type of stimulation Vaginal lubrication and other signs of physical response still occur Despite lack of subjective sexual arousal, external lubricants are not required for comfortable intercourse Genital Arousal Disorder is characterized by: Absent or impaired genital sexual arousal which includes 1) minimal vulval swelling or vaginal lubrication from any type of sexual stimulation, and 2) reduced sexual sensation from caress of genitalia. However subjective sexual excitement still occurs from nongenital sexual stimuli Combined sexual arousal disorder is characterized by: Absent or markedly reduced subjective sexual arousal from any type of stimulation AND absent or impaired genital sexual arousal (vulval swelling, lubrication). Sexual excitement from any type of stimulation is lacking. Although no objective measure is made (these diagnoses are clinical), there is no awareness of reflex genital vasocongestion. The key to this diagnosis is that nongenital sexual excitement still occurs – i.e. excitement derived from erotica, stimulating the partner, kissing, receiving breast stimulation. Early studies have shown that genital congestion upon stimulation is demonstrably reduced in only some of these women. Others appear to have lost sexual sensitivity of the congested genital tissues. However the congestion nonetheless develops to a normal degree. It is important to note that there is still a dearth of information on the pathophysiologic impact various disorders, such as neurologic disabilities, have on sexual function. Furthermore the classifications of FSD indicate that personal distress is a necessary criteria for its diagnosis. However one must realize that some disorders, (i.e. traumatic brain injury) may result in a decrease in sexual desire and eliminate the ability for the patient to experience personal distress. Yet another group of women may have a physiologic change in their sexual response and not perceive sexual distress because they have not had the opportunity to become sexually active. This does not mean they do not have a physiologic problem that deserves acknowledgement. However, under the current criteria, these women are not considered to have a sexual dysfunction unless they are personally distressed about the problem (22). Orgasmic Disorder Orgasmic Disorder (difficulty, delay or absence of orgasm after sufficient stimulation) Primary (never achieved orgasm) due to abuse or medication Secondary due to surgery, trauma or hormone deficiencies Pain Disorder Dyspareunia (genital pain associated with intercourse) Vaginismus (involuntary spasm of the musculature of the outer third of the vagina) Non-coital sexual pain disorder (genital pain induced by non-coital sexual stimulation)

58 Module 3 PSYCHOSOCIAL ISSUES 3/25/2017
Behavioral, mental health and environmental factors may significantly impact women with disabilities In this module we will address issues of depression, stress, substance use and abuse, domestic violence and sexual assault.

59 Depression 3/25/2017 Women with disabilities are at greater risk for depression than women in general1 Those at risk for depression tend to be younger and have: Adult onset of disability 1 Chronic pain 1 Greater functional limitations 2 A low sense of mastery 2 Poor satisfaction with support 2 Women with lifelong disabilities tend to have a lower prevalence of depression than those with recently acquired disability.3 People with disabilities are more likely to be depressed, stressed and have strong fears that interfere with their ability to work, attend school or manage their daily living than women in the general population (4). In a report by Kinne et. al., using data from the 2001 Washington State Behavior Risk Factor Surveillance Survey, it was noted that people with disabilities had a greater than twofold odds of having periods of depression than those without disabilities (5). Having a disability is not, in itself, a reason for depression, however isolation, dependence, low self-esteem and lack of intimate relationships may put women with disabilities at risk for depression (6). Depression in women with disabilities may be a reaction to changes in their living situation or support systems. Other risk factors are being a young adult, chronic pain, having an increasing number or severity of functional limitations, and a lower sense of mastery of fulfilling activities of daily living. Those who have lifelong disability tend to experience less depressive symptoms than those with adult onset of disability. (1,3). A prospective study by Niemeier, et al, reported that the grief symptoms following a functional loss are similar to those reported by persons experiencing the death of a someone close.(7)

60 Depression Impairment No disability 3.4 1.3 2.5 Blind or low vision
3/25/2017 Percent responding “yes” Impairment Depressed Stressed Strong fears No disability 3.4 1.3 2.5 Blind or low vision 24.8 14.2 13.2 Deaf or hard of hearing 16.8 8.9 10.5 Major lower extremity mobility difficulty 33.6 20.3 17.4 Major upper extremity mobility difficulty 35.7 21.5 19.4 As seen in this slide, data from the National Health Interview Survey disability supplement indicates the prevalence of depression, stress and phobias among people with sensory and physical disabilities and highlights the frequent occurrence of these mood disorders in people with disabilities as compared to people in the general population. (7) Although depression, stress and phobias are more prevalent among people with physical and sensory disabilities, the majority of people with disabilities do not feel depressed, anxious or fearful. The clinician should not have an expectation that depression is an integral part of having a disability and therefore not screen or treat the mood disorder. Women with disabilities should be screened for depression using the same instruments used for other women. Source: National Health Interview Survey Disability Supplement , Adapted from Iezzoni,

61 3/25/2017 Depression Treatment Women with disabilities are less likely to receive treatment for depression. 1 Depression treatment considerations: Be aware of interactions and side effects of medications, particularly if taking meds for seizures or spasms. Utilize social worker or case manager to assist in finding appropriate depression counseling. For some women, aerobic exercise may improve depressive symptoms. 9 (see weight and exercise section). Women with disabilities report they have more difficulty receiving treatment for their depression than women without disability. This may occur because health care providers do not recognize depression as a separate issue from the patient’s disability or are unsure about appropriate treatment. In considering depression treatment, it is important for providers to be aware of the women’s other health care issues and her social environment. For example, could medication prescribed for her depression have untoward side effects, as outlined in the next slide. Could her depression be the result of her living arrangement? Consultation with her primary clinician and/or case manager may be important prior to prescribing treatment for the depression.

62 Depression Medication Issues for WWD
3/25/2017 Depression Medication Issues for WWD Tricyclic Antidepressants – anticholinergic side effects Urinary retention Constipation Orthostatic hypotension SSRIs –side effects Apathy GI upset Sexual dysfunction and vaginal dryness Weight gain Agitation The provider needs to be alert to the side effects of medication typically used for depression and their effects in women with disabilities. These side effects, which may be well tolerated by most women, may greatly impact the balance of daily life for women with disabilities. For instance, women with spinal cord injuries may have a strict bowel regime to prevent both constipation and “accidents” . The regularity of the bowel regime allows her confidence to go about work and social activities. Medications with the side effect of constipation or GI upset may alter the timing and intensity of the bowel regime causing increased stress and anxiety and negating the effect of the antidepressant. In another instance, women who have a spastic paralysis, as is frequent with cerebral palsy, may have an increase in spastic activity resulting from SSRI use. Move quickly to the next slide-- Source: AHRQ 2007

63 Depression Medication Considerations
Concern Action Weight gain Avoid mirtazapine and pareoxetine. Consider buproprion Diarrhea Avoid sertraline Sexual dysfunction Consider bupropion Abnormal bleeding Consider tricyclics or bupropion Therefore, women with disabilities placed on medication for a mood disorder should be closely monitored for side effects. Here is a quick side effects profile as outlined in a 2007 report by the Agency for Healthcare Research and Quality (AHRQ):9 If weight gain is a concern, avoid mirtazapine and pareoxetine. Buproprion causes modest weight loss compared with placebo. If diarrhea is a concern, avoid sertraline. If sexual dysfunction is a concern, consider bupropion. People taking veniafaxine are most likely to discontinue due to side effects than people taking any of the other SSRIs. The side effects that are most often reported are nausea and vomiting (9) Higher doses of SSRIs also increase the risk for abnormal bleeding, including abnormal uterine bleeding (10) Source: AHRQ 20079

64 3/25/2017 Stress Women with physical disabilities report high levels of perceived stress. Those at highest risk include those limited by: Pain Lack of family and social support Having experience with recent abuse Stress leads to the development of secondary medical conditions. Stress management such as web based wellness programs, meditation and water aerobics may be helpful Women with disabilities may face the double vulnerabilities of gender stress as well as stress associated with barriers of having a disability. In a study by Hughes, et al at Baylor University, women with physical disabilities reported high levels of stress if they had chronic pain, lacked adequate social support or experienced recent abuse (11). The stress can lead to the development of depression, substance use, GI upset, increased spasticity, and other secondary conditions. Stress management interventions such as web-based wellness programs, water aerobics or medications programs may be helpful. (11)

65 Prescription Drug Abuse
3/25/2017 Prescription Drug Abuse Mind altering drugs prescribed for relief of pain, anxiety, spasms, insomnia and other ailments. Combine with alcohol or other drugs Share with friends Abuse /overuse may be unintentional Coordination with other HCPs needed Polypharmacy is a frequent issue for people with disabilities. The abuse of prescription drugs may be volitional or unintentional on the part of the person with disabilities. They may have several prescribing physicians with no coordination on medications prescribed. The key in reducing polypharmacy is the close coordination in prescribing with the patient’s other health care providers as well as asking the patient for a listing of current medications every time new medications are prescribed.

66 Substance Use Screening and Treatment
3/25/2017 Substance Use Screening and Treatment Substance abuse puts user at risk for increased impairment Women with disabilities require the same screening for substance use as all women The ADA requires accessibility for substance abuse treatment facilities. SAMHSA treatment locator web site Substance abuse, including smoking, increases the incidence of secondary medical conditions associated with disability, including those resulting from poor self-care, and reduces the quality of life for the individual. Women with disabilities should be screened for smoking and substance use with the same tools and frequency as all women seeking health care. Substance use disorders put women with disabilities at greater risk for unemployment, social isolation, victimization and abuse. These same issues often increase substance use and abuse, intensifying a downward psychosocial cycle. Substance abuse treatment facilities are required to be accessible, however treatment centers housed in older buildings may be exempt from this regulation. Mothers with disabilities who require treatment for substance abuse find it extremely difficult to locate substance abuse treatment facilities to accommodate their childcare needs. One helpful treatment locator on the federal Substance Abuse and Mental Health Services Administration (SAMHSA) web site identifies treatment facilities within specified geographic distances and describes the programs available at that facility. This site does enable targeted searches for people requiring ASL or other assistance for those who are hard of hearing. Still, it may take several calls, including a call to the state’s substance abuse agency, to identify a facility that is appropriate for the individual woman.

67 Smoking Prevalence Impairment Use tobacco No Impairment 21.7%
3/25/2017 Smoking Prevalence Impairment Use tobacco No Impairment 21.7% Blind or very low vision 32% Deaf or very hard of hearing 34.9% Major upper extremity mobility difficulty 38.3% Major lower extremity mobility difficulty 42.9% Mild to borderline developmental disability 30-37% The prevalence of smoking among people with all disability types is higher than the general public. Smoking is especially dangerous for people with mobility disabilities because it increases the risk of the development and poor healing of skin ulceration, the risk of vascular clotting, increased respiratory difficulties for those who are compromised due to position or size of rib cage, and serious burns. Although people with disabilities smoke more frequently than others, they are screened for tobacco use about 30% less often than the general public (14) Data source: MEPS , Hymowitz,

68 Smoking and Women With Disabilities
3/25/2017 Smoking and Women With Disabilities Smoking can involve social connection with others Relieves stress associated with anger, abuse, depression, poverty, dependency Interventions need to stress reasonable substitution of activities to replace smoking. Because most smoking is now restricted to designated areas, smoking has become a social interaction connecting one to another. This interaction may relieve some of the isolation experienced by people with disabilities. The nicotine and the actual act of smoking gives relief to stress – as mentioned previously, women with disabilities often experience great stress in their lives (11). Smoking cessation interventions for women with disabilities need to address stress relief, psychosocial health issues and the acceptable substitution of activities to address the social losses that may be associated with smoking cessation. As discussed in Part III, (link to Part III Obesity and activity), if the patient who smokes is overweight or obese, weight control strategies should be part of the smoking cessation plan.

69 Pharmacotherapy for Smoking Cessation
3/25/2017 Pharmacotherapy for Smoking Cessation Increases smoking cessation rates by 50%. Combine medications with QuitLine counseling – QUIT NOW Considerations: NRT patch – skin irritation and breakdown Buproprion – Contraindicated with seizure disorders Use may deter weight gain Also used as an antidepressant Varenicline new effective alternative The use of pharmachotherapy for smoking cessation has been shown to improve smoking cessation rates by 50% (15) and use is encouraged unless contraindicated due to a medical condition. Pharmachotherapy combined with counseling, has been shown to be even more effective, particularly for long term abstinence (15). Free, accessible smoking cessation counseling is now available from the national smoker’s quitline at QUIT NOW. The Quit Line counselors will develop a smoking cessation program specifically geared to the caller and follow up with her for guidance and support (16). Some smoking cessation considerations for women with disabilities include: 1) When using the NRT patch watch closely for skin irritation, vary the site frequently and never use in an area subject to pressure or body moisture. Should the woman have difficulty sleeping while using the patch, it can be removed prior to bed time. Other NRT delivery systems include gum, nasal spray, and inhaler. Use of these methods is dependent on the smoker’s understanding of use and physical dexterity. 2) Buproprion use is contraindicated for those with seizure disorders. However, for those smokers who are overweight, obese or fearful of weight gain attributed to smoking cessation, Bupropion has shown effective in deferring weight gain during use. Buproprion is an antidepressant and in double blind clinical trials is shown effective in treating smokers who also have major depression. One common side effect of Buproprion is insomnia (17). 3) The newest pharmachotherapy for smoking cessation is Varenicline. This medication, begun one week prior to a quit smoking date, binds cranial nicotine receptors thereby reducing or eliminating nicotine craving. The most common side effect of Varenicline is nausea (18). 4) Some state and community programs offer free pharmachotherapy for smoking cessation. Many insurance providers are now covering smoking cessation counseling and medications.

70 Teen Smoking and Substance Use
3/25/2017 Teen Smoking and Substance Use Teens with disabilities who are at greatest risk for smoking, alcohol and/or marijuana use are those who: Live away from their family of origin. Have a mild to moderate learning disability. 19 Girls use substances at about the same rate as boys. Teens with disabilities need tailored health promotion programs about drug, alcohol and tobacco use. Adolescent girl substance use is highly dependent on the type of disability and the residential placement (19). Tobacco and substance use prevention strategies are key for teens with disabilities. Those working with teens who have disabilities need information and training on substance use and smoking prevention and counseling. This is usually available from state substance abuse agencies housed within the departments of health or mental health. However, further research is needed to determine the prevention strategies and messages that resound with youth with physical or developmental disabilities.

71 Case Study - Abuse Woman age 40 with cerebral palsy
3/25/2017 Case Study - Abuse Woman age 40 with cerebral palsy Caregiver accompanies and answers when questions posed to patient Poor nutritional state, unexplained bruises and red marks on buttocks and thighs Patient fearful of abuse report Angie is a 40 year old woman with cerebral palsy who uses a wheel chair for ambulation and has spastic upper body movement. She visits her OB-GYN with frothy yellow odorous vaginal discharge. Her caregiver came with her to the appointment, even though her assistance was not necessary. The caregiver took over for the patient, answering questions posed by the physician. When it came time for the physical exam, the caregiver stuck by the patient’s side. The physician asked the caregiver to leave the room despite her protests. The physician noticed that the patient was cachectic and had poor skin turgor. There were bruises on the patient’s buttocks and red marks on both of her thighs. When asking about the marks, Angie first said she had fallen out of her bed the previous night. However with further questioning, Angie tearfully disclosed that she had been beaten by the caregiver the day before because she had had a bowel movement in her bed. On prompting, Angie shared that the caregiver had withheld her evening meal and liquids in “punishment” for the bowel movement and that this happened on a regular basis. Angie then pleaded with her physician not to take action or discuss this with the caregiver, fearful of additional abuse and of being left with no one to help with her daily needs. How would you, as her physician, respond? Women with physical and cognitive disabilities are vulnerable to abuse by the people they hire or rely on to help them and by others who take advantage of their vulnerability. In the following slides, we will discuss physical, emotional and sexual abuse as it relates to women with disabilities.

72 3/25/2017 Domestic Abuse Prevalence equal with women without disabilities except: Duration of abuse often longer More often to occur by attendant or health care providers More difficulty resolving abusive situations Lack of accessible shelters Fear of losing physical care assistance Fear of losing children In a national convenience survey reported in 2001 by Nosek et al, the lifetime occurrence of emotional, physical, or sexual abuse was 62%. This is similar among women with and without physical disabilities (20). Disability-related abuse may consist of emotional abandonment, denial of disability, withholding of adaptive equipment or medication, or refusal to assist with essential daily living needs, such as getting out of bed, eating, or toileting. Perpetrators of abuse are often intimate partners, family members, or personal care attendants, on whom a woman with functional limitations may depend. While women with disabilities may experience abuse at rates similar to women without disabiliteis, they tend to face more obstacles to resolving the situation and therefore experience a longer duration of abuse. These obstacles include a lack of programs and shelters with disability access and often a strong dependence for physical care assistance from the abuser. Women who are parents also fear a disruption in the home care situation may trigger a loss of custody of her children.

73 Issues Leading to Abuse of Women with Disabilities
3/25/2017 Issues Leading to Abuse of Women with Disabilities Power and control by non-disabled people. “Easy targets” Belief that no harm is done or that the woman is not aware. Poverty, reliance on abusive caregivers. In addition to being subject to others’ power and control, women with disabilities are vulnerable to abuse because it may be more difficult for them to flee, because of prejudicial bias and/or because they may be reliant on the abuser for their basic care.

74 Abuse: Clues from Medical History
3/25/2017 Abuse: Clues from Medical History Inconsistent description Injury to treatment time delay Accident-prone history Suicide attempts or depression Repeated psychosomatic complaints Clues from the medical history that suggest abuse include: a description of an incident inconsistent with the injury; a time-delay between injury and presentation; an accident-prone history or high incidence of physical injury; suicide attempts or depression; repeated psychosomatic complaints or recurring physical complaints with no physical signs of organic disease.

75 Abuse: Clues from Medical History (cont)
3/25/2017 Abuse: Clues from Medical History (cont) Alcoholism and/or drug abuse Unexplained injuries Poor nutrition and/or sleep Other pregnancy-related problems Post-traumatic stress disorder The patient’s history may also include abuse-related factors such as alcohol or drug misuse, unexplained injuries, poor nutrition, and symptoms of post-traumatic stress disorder, such as increased arousal, sleep disturbance and difficulty concentrating.

76 Prevalence of Sexual Assault in Women With Disabilities
3/25/2017 Prevalence of Sexual Assault in Women With Disabilities Women with developmental disabilities have an increased the risk for sexual assault.21 Often the offender is known and are support providers.22 49% of these victims of sexual assault experience 10+ incidents. Only 3% of cases are reported and conviction is rare.23 > 50% of those sexually assaulted also receive physical injuries.24 Having a disability greatly increases the chances of experiencing a sexual assault. In a Massachusetts population-based prevalence study 1999 to 2000, it was estimated that 35% of women with disabilities and 18% of women without disabilities reported a history of sexual assault (25). A study of data on the patterns of sexual assault for women with and without disabilities from the Massachusetts Rape Crisis Centers and other satellite sites indicated that women with disabilities seeking services were significantly older (25.3 yrs vs yrs), had a history of previous assault (69.2% vs. 47.6%) and were most often assaulted at home (50.8% vs. 43.2%) (26) Women with mild to moderate developmental disabilities are particularly vulnerable for repeated incidence of assault, however, these cases are rarely reported to authorities. In most instances the offender is known to the victim. An exception, in the Massachusetts study, women with visual impairment reported about twice as often being assaulted by a stranger (22% vs. 11.8%) (26). Over half of women who have been sexually assaulted also receive physical injuries as a result of the abuse (24). Women with developmental disabilities may have difficulty communicating or finding words to express the sexual assault event. Clinicians should be especially vigilant in screening for sexual abuse in these women (27)

77 Indicators of Sexual Assault
3/25/2017 Indicators of Sexual Assault Behavioral Any significant change in behavior Depression, withdrawal Sleep disturbances Sudden avoidance or fear of specific people, specific genders or situations Shying away from being touched Hints about sexual activity and/or has a new or detailed understanding of sexual behavior In the next few slides we discuss both objective and subjective indicators of sexual assault that should alert the health care provider and prompt further targeted examination and questioning. Behavioral indicators during consultation and examination may include a change in the woman’s interpersonal behavior. This may be reported by others in their home or residence or observed during the examination, particularly if the clinician is a male. Instead of withdrawal, young teens or those with mild to moderate developmental disabilities may use street language words referring to body parts or sexual activities that is out of character (27).

78 Indicators of Sexual Assault
3/25/2017 Indicators of Sexual Assault Physical indicators Bleeding, bruising, infection, scarring or irritation of genitals, rectum, mouth or breasts Difficulty walking or sitting Ongoing, unexplained medical problems like stomachaches or headaches. A number of physical findings on examination may suggest sexual abuse. These include: injury to genitals, anus, mouth or breasts, difficulty walking or sitting or chronic constitutional complaints.

79 Indicators of Sexual Assault
3/25/2017 Indicators of Sexual Assault Caregiver behavior Grooms or massages victims to get them used to personal touch. Giving special gifts or treats. Set up times they can be alone on a regular basis A caregiver who is involved in sexual assault may be reluctant to allow private time between the clinician and the woman with disabilities due to fear of disclosure. Nevertheless, it is imperative that women be examined apart from their caregivers.

80 Sexual Abuse Prevention Education
3/25/2017 Sexual Abuse Prevention Education For Women with Developmental Disabilities Keeping sex a secret does not protect them. Learning needs: Age appropriate sexual behavior Sex knowledge and use of body parts Relationship development How to recognize sexual mistreatment and how to avoid it. Identifying opportunities for disclosure Times for compliance and times for assertiveness Education is the key for women with mild to moderate developmental disabilities to deter sexual maltreatment and assault. They often lack knowledge and may not understand the concept of personal boundaries and privacy. Their issues of wanting to be accepted often supersede any internalized concept of self respect and personal choice (28). Women with developmental disabilities require information about “special” or “private” body parts as well as what constitutes OK and inappropriate or” Bad” touches by others, including the sexual feelings these touches might cause (28). These women also need guidance and practice on when, to whom and how to disclose information on inappropriate sexual actions by others. There are several excellent resources for sexual abuse prevention education. See the resources section of this tutorial and also the sexuality section for more information

81 Provider Response Messages
3/25/2017 Provider Response Messages When responding to a victim of abuse or sexual assault promote messages such as: I believe you It is not your fault You are not alone I want to help you For all women who have experienced abuse, it is important that the clinician respond in a caring and non-judgmental manner.

82 Abuse Reporting/Response Barriers
3/25/2017 Abuse Reporting/Response Barriers Fear- particularly if perpetrator is a family member or personal care assistant Non-accessible and untrained victims’ services Lack of adequate disability care services In abuse situations, the perpetrator uses their real or imagined power over the individual to harm them. Some physical and developmental disabilities put women in a situation of being vulnerable to that power. They may depend on the perpetrator for services to fulfill their daily needs of personal care or transportation. They may be in an elevated position such as a teacher, employer or clergy. Or they may be a family member. The woman experiencing the abuse may be fearful of loosing vital services and of not being believed by others. Victims’ services may not be accessible or personnel be trained to work with women with some physical or developmental disabilities. In addition, disability care providers are often difficult to secure and poorly paid resulting in substandard and unreliable service. Some women with disabilities have reported that agency supervisors have a cavalier or non-believing attitude toward reports of abuse by their employees (24). The clinician should discuss his/her suspicion of abuse with the patient and make a plan with them about action steps the woman and the clinician will take. In some instances intervention by the clinician is helpful and in some states it is required. It is also important that the clinician make a follow-up appointment to assess resolution.

83 Reporting Requirements
3/25/2017 Reporting Requirements Many states mandate the reporting of known or suspected abuse of people or adolescents with disabilities to the state department of elder affairs or child protective services. 29 Information on state requirements for the reporting of domestic abuse of people with disabilities is often handled through the state department of elder affairs who qualify adults with disabilities and vulnerable. Suspected abuse of adolescents should be reported to the child protective services agency. All medical and social service providers are mandated reporters of suspected abuse. As mentioned, the provider should expect that the patient being abused will be fearful of reporting the abuse to the state authorities. Disclosure of the source of information about the abuse to the perpetrator is usually prohibited and usually those who investigate the report are sensitive to the fears of the victim. In most cases, the provider should tell the woman with disabilities that the abuse will be reported and that some investigation to be expected. The provider should then try to follow up with the patient to determine the course of action and to be alert for further abuse. A 2005 listing of state reporting requirements is referenced in the bibliography (29) however, these requirements often change and it is prudent to check with the department of senior services within your state for the current requirements. ADD LINK TO RESOURCE

84 Abuse Assessment Screen Disability (AAS-D)
3/25/2017 Abuse Assessment Screen Disability (AAS-D) Within the last year, have you been hit, slapped, kicked, pushed, shoved or otherwise physically hurt by someone? Within the last year has anyone forced you to have sexual activities? Within the last year, has anyone prevented you from using a wheelchair, cane, respirator or other assistive devices? Within the last year, has anyone you depended on refused to help you with an important personal need, such as: taking your medicine, getting to the bathroom, getting out of bed, bathing, getting dressed, or getting food or drink? Source: Nosek Here is the Abuse Assessment Screen for people with Disabilities – the AAS-D Within the last year, have you been hit, slapped, kicked, pushed, shoved or otherwise physically hurt by someone? Within the last year has anyone forced you to have sexual activities? Within the last year, has anyone prevented you from using a wheelchair, cane, respirator or other assistive devices? Within the last year, has anyone you depended on refused to help you with an important personal need, such as: taking your medicine, getting to the bathroom, getting out of bed, bathing, getting dressed, or getting food or drink? This screen, developed by Mc Farlane and colleagues, was tested in a study of 511 women patients with physical disabilities recruited from several clinics at Baylor Medical Center. Questions 1 and 2 are routine abuse detections questions. The addition of questions 3 and 4 that are specific to screen people with disabilities increased the abuse disclosure rate 20%. (31). It can be administered to all women with disabilities.

85 Summary – Psychosocial issues
3/25/2017 Summary – Psychosocial issues All women with disabilities should be screened for psychosocial issues as frequently as the general population. Some disability related modification to screening questions and treatment may be necessary All women with disabilities should be screened for psychosocial issues such as tobacco and substance use, depression, domestic violence and sexual assault as frequently as the general population. Some disability related modification to screening questions and modifications in the approach and methodology of treatment may be necessary. Psychosocial issues should never be overlooked or minimized because the woman has a disability.

86 References Hughes RB, Robinson-Whelen S, Taylor HB, Petersen NJ, Nosek MA. Characteristics of depressed and non-depressed women with physical disabilities. Archives of Physical Medicine & rehabilitation 2005;86:473-9. Jang Y, Borenstein AR, Chirlboga DA, Mortimer JA. Depressive symptoms among African American and white older adults. Journal of Gerontology Series B – Psychological Sciences and Social Sciences 2005;60: McDermott S, Moran R, Platt T, Issac T, Wood H, Dasari S. Depression in adults with disabilities, in primary care. Disability and Rehabilitation: an international multidisciplinary journal. 2005;27: Iezzoni LI, O’Day, BL. More than ramps: A guide to improving health care quality and access for people with disabilities. Oxford University Press, New York p. 113. Kinne S, Patrick DL, Doyle DL. Prevalence of secondary conditions among people with disabilities. AJPH 2004;94:5-9. Nosek, MA, Hughes, RB, Swedlund N, Taylor HB, Swank P. Self-esteem and women with disabilities. Social Science & Medicine 2002;56: Niemeier J, Kennedy R, McKinley W, Cifu D. The Loss Inventory: preliminary reliability and validity data for a new measure of emotional and cognitive responses to disability. Disability & Rehabilitation 2004;26: Iezzoni LI, O’Day BL. More than ramps: a guide to improving health care quality and access for people with disabilities. Oxford University Press, New York, NY 2006, pgs

87 References Agency for Healthcare Research and Quality. Choosing antidepressants for Adults: Clinician Summary Guide. AHRQ Effective Health Care Program Reports accessed at Accessed 10/19/2007) Meijerr WEE, Heerdink ER, Nolen, WA, Herrings RMC, Leufkens HGN, Egberts ACG. Association of risk of abnormal bleeding with degree of serotonin reuptake inhibition by antidepressants. Arch Intern Med 2004;164: ) Hughes RB, Robinson-Whelen S, Taylor HB, Petersen NJ, Nosek MA. Stress and women with physical disabilities: identifying correlates. Women’s Health Issues 2005;15:14-20. Medical Expenditure Panel Survey (MEPS) Accessed at Hymowitz N, Jaffe FE, Gupta A, Feuerman M. The importance of smoking education in preventive health stragegies for people with intellectual disability. Journal of Intellectual Disability Research. 1997;41: Chevarley FM, Thierry JM, Gill CJ, Ryerson AB, Nosek MA. Health, preventive health care and health care access among women with disabilities in the National Health Interview Survey, supplement on Disability. Women’s Health Issues 2006;16: Fiore MC, Bailey WC, Cohen SJ, et al. Treating tobacco use and dependence: clinical practice guideline. Rockville MD. US Dept. of Health and Human Services (USDHHS), Public Health Service (PHS) 2000. Hollis JF, McAfee, TA, et al. The effectiveness and cost effectiveness of telephone counseling and the nicotine patch in a state tobacco quitline. Tobacco Control 2007:16 (suppl. 1):53-9.

88 3/25/2017 References Peters MJ and Morgan LC. The pharmacotherapy of smoking cessation. Medical Journal of Australia 2002;176:486-90 Tonstad S, Tonnesen P, Hajek, et al. Effect of maintenance therapy with Varenicline on smoking cessation: a randomized controlled trial. JAMA 2006;296:64-71 Steele CA, Kalnins IV, Rossen BE, Biggar DW, Bortolussi, JA, Jutai JW. Age-related health risk behaviors of adolescents with physical disabilities. Sozial-und Praventivmedizin. 2004;49: Nosek MA. Howland CA, Rintala DH, Young EM, Chanpong GF. National study of women with physical disabilities: Final report. Sexuality and Disability 2001, 19:5-39. Sobsey D, Doe T. Patterns of Sexual Abuse and Assault. Journal of Sexuality and Disability 1991;9(3): Sobsey, D. Violence and abuse in the lives of people with disabilities: The end of silent acceptance? Baltimore, MD: Paul H. Brooks Publishing Co. 1994 Abramson WH. Promoting violence-free relationships: Disability Services ASAP. Impact, published by the Institute on Community Integration, University of Minnesota 2000;13(3) Cox-Lindenbaum D, Watson S. Sexual assault against persons with developmental disabilities in Ethical Dilemmas: Sexuality and Developmental Disabilities NADD Press, Kingston NY. Pgs

89 References Mitra M, Brawarsky P, Wilber N, Walker DK. Sexual assault against women with disabilites in Massachusetts: Results from the Massachusetts Behavioral Risk Factor Surveillance System ( ). Paper presented at the annual meetin gof the American Public Health Assoc., San Francisco CA 2003. Nannini A. Sexual assault patterns among wimen with and without disabilities seeking survivor services. Women’s Health Issues 2006;16:372-9. Valenti-Hein D, Schwartz L, The sexual abuse interview for those with developmental disabilities. James Stanfield Company. Santa Barbara: California 1995. Touch and My Body: A Guide for Teens with Developmental Disabilities to Discuss with a Caring Adult. Developed by Tri-County Council on Domestic Violence and Sexual Assault Inc. in Rhinelander, WI. Accessed at Brandt B. Mandatory reporting of elder abuse: implications for domestic violence advocates. Natonal Clearinghouse on Abuse in Later Life/Wisconsin Coalition Against Domestic Violence Downloaded at Accessed 5/21/07 Center for Research on Women with Disabilities with funding from the Centers for Disease Control and Prevention, (UHSP RO4/CCR614142), Nosek MA, Principal Investigator. Accessed at Nosek MA, Hughes RB, Taylor HB, Violence Against Women With Physical Disabilities: Final Report, Center for Research on Women with Disabilities, Baylor College of Medicine. Dept. of Physical medicine and Rehabilitation, Houston,Texas, 2002.

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