Contact Resources Consulting Services Home


(Link to this page)

Developing Guidelines on Sexuality and Reproductive Health in Adults with Spinal Cord Injury

Stanley Ducharme, Ph.D.
Clinical Practice Guideline Development Panel on Sexuality and Reproductive Health
Paralyzed Veteran’s of America and Consortium of Spinal Cord Injury Medicine

Not so long ago, most of us didn’t talk about sex without blushing a little and feeling uncomfortable.  It was a private matter that didn’t need to be talked about. Even when we met with our doctors, it was a subject that was not easily discussed.

That discomfort about sexuality was certainly true in rehabilitation as well. Although people with spinal cord injuries (SCI) often had questions regarding their relationships and their ability to be intimate, few doctors or other health providers had answers to the questions being asked. Even fewer health professionals felt comfortable talking about these issues in an open, straightforward manner. Sex was something that was done in the privacy of one’s home and was a personal matter. Those discussions didn’t belong on a rehabilitation unit.

Since those days, much has re-shaped the sexuality landscape in America. Viagra has become a household word; erections, homosexuality and illicit sexual relationships are all discussed daily in the media. Sexually transmitted diseases, teenage pregnancy and “hooking up” are part of today’s vocabulary and youth culture. Today, sex is much more casual than in years past and many young people enjoy having “friends with benefits”.

stethoscopeDespite a much more relaxed attitude regarding sexuality in our culture, few doctors still leave medical school with the tools to assist their patients in the sexual area. Doctors are simply not prepared to help their patients achieve a satisfying sexual life after a disease or disability. For example, courses on sexual health are still not common in the curriculum of most major medical schools.

As a result, men and women with disabilities often have difficulty learning the facts as to how their medical condition will affect their relationships and sexual life. This aspect of health is something people tend to learn on their own. Or, they just stop having sex after the onset of a disability. Naturally over time, this can take a toll on a marriage or a relationship.

Realizing the needs of people with spinal cord injury, the Paralyzed Veteran’s of America (PVA) have recently taken a giant step forward in addressing a much-neglected area for people with SCI. With its eleventh clinical practice guideline, PVA and The Consortium for Spinal Cord Medicine have tackled the sexuality issue in a manner that has never been accomplished before.

In 2010, after more than 2 years of reviewing the latest in scientific evidence, PVA has published its “Clinical Practice Guideline on Sexuality and Reproductive Health in Adults with Spinal Cord Injury.”

The publication of this professional guideline is no small accomplishment. It is a daunting task. The process started in 2007 when PVA convened a panel of experts on the topic and began to identify the topic areas that needed to be addressed in such a guideline. This was followed by a two-year review of the available literature and scientific research.

Realizing that research in the area of sexuality was not as robust as other areas of medicine and psychology, the group relied on panel consensus when research was lacking or unavailable. As each portion of the guideline was developed, it was reviewed and edited by representatives from over 17 professional organizations. Their input was integrated into the text. Finally, medical and legal experts provided valuable feedback before the final draft was published.

The group convened by PVA was comprised of experts from many disciplines who each approached the topic of sexuality from a unique professional perspective. Physical therapists were concerned with positioning and transfers. Occupational therapists were concerned with adapting sexual equipment while doctors were concerned with secondary conditions such as autonomic dysreflexia and spasticity.

Finally, nurses, psychologists, social workers and other mental health professionals were concerned with body image, relationships and communication issues. All aspects of the topic were given careful consideration. The final product ultimately became a blending of physical, emotional and the relationship aspects of sexuality and reproduction.

As the clinical practice guideline on Sexuality and Reproductive Health is published, there are several areas of research that stand out as being especially relevant. These are a few of many areas where new research has been reported. A sampling of these areas include information on the timing of sexual counseling, autonomic dysreflexia and pregnancy.

Timing of Sexual Education

While all members of our panel believed that people should learn about sexual functioning during acute rehabilitation, research has demonstrated that most people with a new SCI are not ready early after injury to comprehend the sexual adjustments ahead of them. Most people with SCI are much more ready to learn about sexual changes in the first six months following discharge from rehabilitation.

By that time, the majority of people with a SCI have attempted sexual intimacy with another person. Unfortunately, most people have been dissatisfied and discouraged by the experience. In fact, for many people, those “unsuccessful” first attempts at being sexually active, scare them away from future intimate relationships. Sexual self confidence is fleeting early after injury!  

Man, Woman in wheelchairAlthough six months post injury seems like an ideal time to provide sexual counseling, research has demonstrated that over 90% of people with SCI never receive counseling or education on the topic once they leave their acute rehabilitation program. Many people simply don’t know where to turn for information when they get back at home. Others are too embarrassed to ask.

Thus, acute rehabilitation provides a “window of opportunity” to provide this important information to people with SCI and their partners. It sets the tone and the expectation that future sexual activity can still be enjoyed in spite of the injury. Without accurate information on sexuality, it is all too easy to make the inaccurate conclusion that an enjoyable and satisfying sexual life is no longer possible.

Autonomic Dysreflexia

Over and over in our review of the literature, problems of dysreflexia are noted when people T6 and above are sexually active. Dysreflexia, is an urgent medical condition in which there is a dramatic rise in blood pressure, slowed heart rate, headache and sweating. With sexual functioning, it can occur with sexual arousal, genital stimulation, ejaculation, orgasm or with the use of a vibrator or sex toy. For women with SCI at T6 or above, dysreflexia is also common during pregnancy and especially at the time of delivery.

In all cases, the symptoms can be severe or they can be subtle. With such subtle physiological changes, it’s possible that an individual may not even be aware of the cardiovascular irregularities taking place within the body. This is termed “silent” dysreflexia and we are just learning the long-term negative consequences of the condition.

People with SCI should be made aware that dysrfeflexia is common during sexual activity (for people T6 and above) and realize how to prevent it, respond to it and intervene should dysreflexia occur. As the guideline points out, if dysreflexia occurs during sexual activity, the activity should stop immediately and the person should sit up while a medical provider is notified. In some cases, the doctor will advise certain medications such as a nitroglycerine ointment.


Few women with SCI are aware of issues regarding pregnancy following a spinal cord injury. Only a few years ago the idea of a planned pregnancy after SCI was almost unheard of. Times have certainly changed! Today, the new clinical practice guideline provides some of the most up to date, available information on pregnancy, labor and delivery for women with SCI.

Pregnant woman in wheelchairOne example discussed in the new CPG is the issue of wheelchair seating and cushion use during pregnancy. This is a critical area that has not generally received sufficient attention in the past. Health care providers are often unaware of the need for ongoing seating adjustment to accommodate for the increasing weight and size of the fetus.  

As the new guideline points out, there is also a need to sequentially increase the angle of the seat in order to maximize respiration for the woman while monitoring changes in weight distribution that may affect skin integrity. Throughout the pregnancy, the interface of the cushion needs to be monitored in order to ensure that adequate pressure distribution is maintained given the added weight and ongoing change in body mechanics.


In conclusion, the publication of the clinical practice guideline on sexuality and reproductive health is an important statement as to the significance of this area in defining quality of life for people with spinal cord injury. Sexual health is at the core of our existence as men and women.

Armed with the most up to date information on the topic of sexuality and reproductive health, rehabilitation staff members and health care providers will now have an available document to serve as a resource for their clinical work with people who have spinal cord injuries. Researchers will also have specific recommendations on which to base their hypotheses for future studies. It is our hope that the guideline can serve as a foundation in which new research and new information on this topic can be gleamed.

Ultimately however, the real purpose of this clinical practice guideline is to bring accurate information on sexuality to people with spinal cord injuries themselves. It is only with such information that people with SCI can make an informed decision as to whether they wish to remain sexually active following an injury. This decision, regardless of SCI, is a fundamental right of all people.

(Link to this page)

Back to Articles

| Home | Services | Consulting | Resources
| Directions

Web design by flyte new media
email Web Master