REVIEW PAPER Sexual Health Care for People with Physical Disabilities Tami Serene Rowen, MD,* Sorah Stein, MA,† and Mitchell Tepper, PhD‡ *Department of Obstetrics, Gynecology and Reproductive Sciences, University of California, San Francisco, CA, USA; † Department of Psychology, Indiana University, South Bend, IN, USA; ‡Emergo Health, Inc. Atlanta, GA, USA DOI: 10.1111/jsm.12810
Background. People with physical disabilities make up a large and heterogeneous population, many with speciﬁc sexual health needs that differ from the general population. Methods. To conduct a review of current deﬁnitions and statuses relating to the sexual well-being of people with physical disabilities. Medical, social, and behavioral literature was searched and included to address the speciﬁc sexual health needs and disparities in this population. Results. People with physical disabilities encompass a broad population, including those with concomitant mental and cognitive impairments. People with physical disabilities have signiﬁcant sexual and reproductive health disparities when compared with the general population and higher rates of sexual distress. There are speciﬁc sexual health concerns for men and women with physical disabilities and approach to their care needs to be interdisciplinary. Conclusions. Sexual health needs for people with physical disabilities should be a priority for healthcare providers. Continued education is essential to ensure disparities and health needs are addressed and treated. Rowen TS, Stein S, and Tepper M. Sexual health care for people with physical disabilities. J Sex Med 2015;12:584–589. Key Words. Disability; Sexual Health; Continuing Medical Education
What Are Physical Disabilities?
any international organizations and statutes have evolved to help develop current deﬁnitions for people with disabilities. The 2006 United Nations “Convention on the Rights of Persons With Disability” does not deﬁne disability but states that persons with disability include “those who have long-term physical, mental, intellectual, or sensory impairments which, in interaction with various barriers, may hinder their full and effective participation in society on an equal basis with others” . With respect to the individual, the Americans With Disabilities Act of 1990 deﬁnes a disability as “a physical or mental impairment that substantially limits one or more major life activities” . Physical disability hence includes people who have blindness, deafness, and missing limbs are partially or completely paraJ Sex Med 2015;12:584–589
lyzed, and/or have any other physical limitation that is permanent or chronic. As is clear from the above deﬁnitions, disability also includes intellectual disabilities and developmental disabilities. For the purposes of this article, we will focus on people with physical disabilities. Although we try to address research focusing only on people with physical disabilities, much of the known medical research and epidemiology also includes people with intellectual and developmental disabilities. Thus, there is often overlap in these categories, especially with regard to epidemiology. More than a billion people, or about 15% of the world’s population, are estimated to live with some form of disability . Measuring the prevalence of physical disabilities is challenged by the broad deﬁnition of what constitutes a disability and how disabilities are coded in large databases . © 2015 International Society for Sexual Medicine
Sexual Health and People with Disabilities However, we do know that the number of people with physical disabilities is growing. This is because there are more people living longer with disabling chronic medical conditions in addition to increasing incidences of many disabling conditions such as diabetes, chromosomal abnormalities, and serious injuries. Patterns of disability in different geographic areas are inﬂuenced by trends in health care and prevention and in environmental and other factors, such as motor vehicle accidents, natural disasters, conﬂict, diet, and substance abuse . The effects of physical disabilities can range from minor inconvenience to serious limitation in lifestyle. Physical disabilities affect people of every race and ethnic group: men and women, young or old. Nearly everyone is affected by physical disabilities, either directly or because a close family member or friend is affected. Why Is Sexual Health Important to People with Physical Disabilities?
Sexual health is recognized as a human right by many international health organizations including the World Health Organization; thus, all people, including those with physical disabilities, should have the right to pursue opportunities for healthy sex and sexual expression. Some national governments have moved forward to address the sexual health concerns of people with disabilities. The United States Surgeon General Call to Action to Promote Sexual Health and Responsible Sexual Behavior concluded that the sexual health needs of people with disabilities are often ignored, existing resources are underutilized, and that more research is needed to address their many sexual health needs . Healthcare providers should be able to provide accurate and unbiased sexual health information and resources. It is well documented that health professionals often fail to adequately address the sexual health needs of patients with disabilities [6–9]. A recent study using in-depth focus groups revealed that people with physical disabilities are often seen as asexual, especially those who are unable to have traditionally “normal” sexual experiences . These studies highlight the importance of proper education and information sharing on the part of health professionals. Sexual Health Disparities and People with Disabilities
Data from the 2003 National Survey of Family Growth indicated that all people with disabilities
are more likely to experience forced vaginal and anal intercourse, to be more likely to report greater than 10 sexual partners over a lifetime, to identify other than heterosexual, and to have more same sex sexual partners than people without disabilities . These activities contribute to people with disabilities experiencing increased rates of sexually transmitted infections (STIs), unintended pregnancies, and sexual violence than those without disabilities [11,12]. Additionally, a large number (49%) of people with disabilities who are victims of sexual assault experience more than 10 incidents, and over 50% of those sexually assaulted also incur physical injuries . Here the data do not create distinction among those with physical and intellectual and developmental disabilities, but these data demonstrate some speciﬁc considerations for any sexual health practitioner. People with disabilities are less likely to obtain police intervention, legal protection, or prophylactic care for STI exposure . For women, this can lead to serious consequences of STIs, such as pelvic inﬂammatory disease and its sequelae of ectopic pregnancy and infertility . Poverty, illiteracy, lack of access to health resources and sexual education, and lack of power when negotiating safer sex contribute to increased health risks related to sexual activity among people with disabilities compared with those without [12–15]. Sexual Dysfunction and People with Physical Disabilities
People with disabilities also have higher rates of female sexual dysfunction (FSD), erectile dysfunction (ED), and low desire [16,17]. In some cases these may be due solely to medical conditions; in others, psychological distress may contribute as well. Physical limitations in people with disabilities can make the physical aspects of sexual activity and the emotional aspects of sexual relating difﬁcult for the person with the disability and partner(s). People with physical disabilities may have difﬁculty with sexual positioning and pain during sexual activity. In many cases, there are multiple reasons for sexual dysfunction. The most detailed study to date on the relationship of disability to sexual health, which included 748 people with disabilities, showed that people with more severe physical impairments experienced signiﬁcantly lower levels of sexual esteem and sexual satisfaction and signiﬁcantly higher levels of sadness related to their sexual functioning than people who had mild impairments or J Sex Med 2015;12:584–589
586 who did not report having a physical impairment . The study also found that people with more severe physical disabilities engaged in partnered sexual activity signiﬁcantly less frequently than those with mild impairments. Women with physical disabilities had signiﬁcantly more positive feelings about their sexuality and signiﬁcantly more frequent partnered sexual experiences than their male counterparts. The study found that people who experienced their physical impairments for a longer time reported signiﬁcantly more positive feelings about their sexuality. This is very important for providers as it shows that people’s relationship to sex and disability changes over time, with more positive outcomes occurring later in the life of the person with a disability. It also indicates that there may be differences in acceptance of disability, acceptance of new abilities and limitations, and increased access to sexual support services to increase sexual functioning. Providers can use this information to counsel patients about the changes to sexual health over time, especially in light of a newly acquired disability. How to Evaluate the Sexual Concerns and Needs of a Person with a Physical Disability
Taking a sexual history is something that is familiar to all sexual health providers. However, there are important considerations when the patient is a person with a physical disability. Bancroft offers a helpful model for characterizing the effects of disability on a person’s sexual health into three areas . These serve as a helpful guide for providers doing an intake for a person with a physical disability. The ﬁrst is to address is the direct effect of a disability on the physical aspects of sexuality. This relates to physical limitations, such as inability to have sensation in the pelvis, have an erection, or engage in sexual intercourse. The second is indirect psychological effects of the disability and stigma of disability. This may include the perceived meaning of a lack of information exchange with providers, anxiety about sharing limitations with partners, and psychological causes of sexual dysfunction. Finally, there are treatment effects, such as scars after a surgical procedure or sexual side effects from medications. Medications commonly used to treat secondary conditions like depression, heart disease, and chronic pain among people with disabilities have known sexual side effects . One important point is that some physical disabilities might not be obvious to the examiner. An J Sex Med 2015;12:584–589
Rowen et al. example of this is a motor impairment of the upper extremities. Another could be chronic pain syndrome affecting mobility. Thus, conducting a thorough history to determine if there is a physical impairment is necessary even if it is a focused problem visit. This would allow for better continuity of care and also can allow for targeted referrals as needed. What Are Some Specific Examples of Interventions to Address the Needs of People with Physical Disabilities?
For people with disabilities, it is critical to understand the limitations that may lead to sexual dysfunction or distress and to target interventions accordingly. For example, if the patient has signiﬁcant pain associated with their disability, they should be encouraged to use analgesics approximately 30 minutes before sexual activity. These can include nonsteroidal anti-inﬂammatory medications, acetaminophen, or opioids. If there are limitations from positioning, a muscle relaxant, such as baclofen, cyclobenzaprine, and methocarmamol, can assist with lower extremity spasticity. It is important to note these medications may be difﬁcult for older adults to tolerate due to the side effects of fatigue and dizziness. Props and devices can assist with positioning for people with functional limitations, and sexual enhancement devices can be useful for people with disabilities. These include pillows and cushions that can be purchased through major Internet retailers or at sexuality shops. These are ideal for people with joint pain who are not able to lie on back comfortably or position on knees. Additionally, vibrators, dildos, and penile sheaths can provide stimulation when a person has difﬁculty using hands and/or needs extra stimulation. These can all be used alone or with partners and can provide a sense of greater emotional and physical intimacy and satisfaction when one or both of the partners are affected by a disability. Sex therapists and sexologists trained in kinesiology or physical therapy can be most useful in these situations. Women and men can use a variety of lubricants to assist with vaginal dryness and to allow for easier entry when engaging in intercourse . Natural oils such as mineral and coconut oil make very good lubricants; however, they cannot be used with latex products, including condoms. Siliconebased lubrication is much more lubricious than water-based lubrication, but it can cause irritation to vaginal mucosa.
Sexual Health and People with Disabilities If sexual dysfunction is associated with speciﬁc medications, it may be prudent to consider alternative medications. However, this should be weighed against the risks of discontinuing a medically necessary intervention. People with underlying depression that may be contributing to their symptoms should be treated, whether with psychotherapy, pharmacotherapy, or both in combination. However, drugs such as selective serotonin reuptake inhibitors (SSRIs) have known negative effects on all aspects of sexual functioning. One option is to use alternatives to standard SSRIs, including buproprion . One option used by some leaders in psychiatry is to give patients an SSRI “holiday” for a week and/or replace the SSRI with buproprion for a ﬁnite amount of time (Brizendine L., pers. comm.). Recently, well-publicized research has also shown that sildenaﬁl can be very useful for women who had SSRI-induced FSD . Other medications that can affect sexual function are beta blockers, thiazides, anti-androgens. Alternatives to beta blockers and thiazides are plenty, including calcium channel blockers and angiotensin converting enzyme inhibitors, which do not carry the same risk to sexual function as the aforementioned medications. Anti-androgens do not have alternatives. Antipsychotics are another class of medication with signiﬁcant sexual side effects. However, just as with SSRIs, it is important to treat an underlying mental health problem and often antipsychotics are the only medications that can have success. Patient who require these medications can be supplemented with medications such as sildenaﬁl (with clear documentation of informed consent for using this medication offlabel) and using nonpharmacologic treatments such as toys and devices and referral to therapy. It has been shown that people with disabilities are at higher rate of depression and thus might be more likely be affected by some of the unintended consequences of antidepressant use . It is also important to keep in mind that the implications of and limitations due to physical disability can change over time, thus being ﬂexible with different sexual activities can beneﬁt relationships. For example, some disabilities might make sexual intercourse difﬁcult or even impossible. These individuals and couples may beneﬁt from exploring mutual masturbation, oral sex, nongenital touching, and other ways to enjoy intimacy and sexuality. The focus on heterosexual intercourse in much of the sexual health literature
587 ignores the many ways in which people engage in intimate and sexually satisfying experiences. There are clinical practice guidelines for some speciﬁc physical disabilities. An example is the Consortium for Spinal Cord Injury Medicine’s guidelines on sexual health . These guidelines can easily be adapted to other physical disabilities as the details regarding sexual history and assessment, education, practical considerations, and focus on positive sexual experiences are universal issues in treating anyone with sexual health concerns. One important feature of these guidelines is their multidisciplinary approach to addressing sexual dysfunction. It is not only the role of a doctor or nurse, but rather sex therapist, physical therapists and other mental health professionals are crucial in providing adequate care. Another recent resource from which to draw recommendations is a paper entitled Sexual Function in Chronic Illness, which was the result of an international collaboration of sexual health experts . This paper addresses speciﬁc illnesses with very detailed focus on medical and pharmacologic treatments and evidence-based recommendations. There is also information on optimal assessment of the multiple factors affecting sexuality when one or both partners are chronically ill. These papers as well as our review demonstrate the need for a comprehensive approach to treatment of sexual dysfunction for people with physical disabilities and also provide information on effective treatment options. Ensuring Persons with Disability Have Access to Satisfying Sexual Expression
Raising awareness that people with disabilities are sexual beings and are entitled to sexual health care is the ﬁrst step in providing care for people in this community. Providers can make sure to have accessible education materials in their ofﬁces, perform thorough yet sensitive histories and physical exams, and make sure to have a list of community resources. The Internet has allowed for easy access to resources in the community. It is important to take time to get to know what is available in order to provide it to patients. One important limitation may be the physical exam space in a medical ofﬁce. Ensuring examination rooms with wide doors for wheelchairs, beds that can be lowered easily, and staff who can assist with positioning are crucial for meeting the healthcare needs of people with physical disabilities. Most providers are able to determine whether J Sex Med 2015;12:584–589
588 their ofﬁces are accessible to people with physical disabilities, which is required by the Americans with Disabilities Act. Specific Health Concerns for Women
Although we reviewed some speciﬁc examples of sexual health concerns affecting women above, historically, women with physical disabilities are often treated as asexual and not capable of successful sexual relationships. Additionally, issues of capacity and consent can cause providers to question the nature of a sexual relationship. Unless there is a concomitant intellectual or developmental disability, women with physical disabilities should not have differing ability to consent than women without physical disabilities. It should be noted that the issue of capacity and consent is not exclusive to women but though all people with disabilities are at high risk for sexual abuse, women disproportionately share this burden . When treating any woman with a physical disability, it is important to consider offering her a private examination, without a caretaker present in front of whom she may not be completely forthcoming. Signs of sexual abuse should always be investigated; in all states providers are mandated to report them. Most providers are aware of common signs of abuse, but new bruises or burns that cannot be explained, genital trauma, or new STIs are all warning signs. An important, related point is that people with disabilities have also been associated with communities that practice alternative sexual lifestyles, which may include activities associated with bondage, domination/discipline, sadism, and masochism . These practices may involve consensual inﬂiction of pain and very minor injury. Just as when dealing with women without disabilities who present with evidence of injury, it is important to establish the nature of the injuries and whether or not they result from abuse. Another important issue for women with physical disabilities is provision of contraception. It is necessary to determine if the woman can independently, or in coordination with her partner or other assistance, administer the contraceptive as directed. This applies to all combined hormonal contraceptives (CHCs), such as oral contraceptive pills, transdermal patches, and vaginal rings. Contraception can also have signiﬁcant effects on menses. Women and/or their providers need to understand the changes that might be affected by these new methods, whether an increase or decrease in ﬂow, intermenstrual bleeding, or changes to frequency J Sex Med 2015;12:584–589
Rowen et al. and timing. Other side effects, such as increased risk of venous thromboembolism associated with CHC, are critical to evaluate when assessing candidates who have decreased mobility. Additionally, it is important to consider if a woman needs protection from STIs and introduction to barrier methods. Women with physical disabilities who get pregnant are also at increased risk for adverse birth outcomes , including preterm birth, low birthweight, and urinary tract infections, which can be very dangerous in the pregnant state. Additionally, birth planning in the case of impaired hip extension and abdominal or genital sensation may be considered by her prenatal care provider. Specific Health Concerns for Men
Research shows that men with physical disabilities report more sexual dysfunction than their female counterparts . In many instances, this is related to the physical limitations involved in engaging in sexual activity. Many disabilities are associated with ED, which can inhibit men’s ability to engage in many sexual activities. Many men with spinal cord injuries may be able to achieve erection, whether or not they have sensation. Just like women, there can be changes in sensation to the genitals, difﬁculty positioning, and achieving orgasm. There can also be delayed or absent ejaculation. It is important to consider referral to therapists specially trained to help men with these concerns. Just as with women, it is important to educate men about safer sex practices, STIs, and contraception. Many men with disabilities are fertile, and thus at risk of contributing to unintended pregnancies, which can be both emotionally and ﬁnancially distressing. What Are Some Resources for Providers and Patients?
More research on sexuality in people with physical disabilities is needed, given the paucity of quality data from which providers can access information. This is especially true regarding interventions to improve sexual dysfunction and distress. People with disabilities should also be included in future studies on sexual function and dysfunction. In light of this, however, there are numerous resources that can provide information for providers seeking more information about providing care to this important population: The Centers for Disease Control and Prevention (http://www.cdc
Sexual Health and People with Disabilities .gov/ncbddd/disabilityandhealth/women.html) has practical information for women with disabilities and important links for physical and sexual health; this pdf (http://www.mass.gov/eohhs/docs/ dph/com-health/prevention/hrhs-sexuality-anddisability-resource-guide.pdf) provides a list of resources, books, videos, and websites encompassing most aspects of sexuality and people with developmental and physical disabilities; and Sexuality and Disability, Springer US: A Journal Devoted to the Psychological and Medical Aspects of Sexuality in Rehabilitation and Community Settings (http:// www.springer.com/psychology/community+ psychology/journal/11195). Corresponding Author: Tami Serene Rowen, MD, Department of Obstetrics, Gynecology and Reproductive Sciences, University of California, Room 1483, 505 Parnassus Avenue, San Francisco, CA 94143, USA. Tel: 4158857788; Fax: 4153537550; E-mail: [email protected]
obgyn.ucsf.edu Conﬂict of Interest: The author(s) report no conﬂicts of interest. Statement of Authorship
Category 1 (a) Conception and Design Tami Serene Rowen; Mitchell Tepper (b) Acquisition of Data Tami Serene Rowen; Mitchell Tepper (c) Analysis and Interpretation of Data Sorah Stein; Mitchell Tepper; Tami Serene Rowen
Category 2 (a) Drafting the Article Tami Serene Rowen (b) Revising It for Intellectual Content Tami Serene Rowen; Mitchell Tepper; Sorah Stein
Category 3 (a) Final Approval of the Completed Article Tami Serene Rowen; Mitchell Tepper; Sorah Stein References 1 McDermott S, Turk MA. The myth and reality of disability prevalence: Measuring disability for research and service. Disabil Health J 2011;4:1–5. 2 Bolour SY, Braunstein GD. Pharmacologic treatment options for hypoactive sexual desire disorder. Womens Health (Lond Engl) 2005;1:263–77. 3 Nurnberg HG, Hensley PL, Heiman JR, Croft HA, Debattista C, Paine S. Sildenaﬁl treatment of women with antidepressantassociated sexual dysfunction: A randomized controlled trial. JAMA 2008;300:395–404.
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