Let's talk about sex--please! A new clinical practice guideline helps healthcare professionals explain the facts regarding intimacy and relationships.
That discomfort about sexuality was certainly true in rehabilitation as well. Although people with spinal-cord injury (SCI) often had questions regarding their relationships and ability to be intimate, few doctors or other health providers had answers to those questions. Even fewer health professionals felt comfortable talking about these issues in an open, straightforward manner. Sex was something for the privacy of one's home and was a personal matter. Such discussions didn't belong on a rehabilitation unit.
Since those days, much has reshaped the sexuality landscape in America. Viagra has become a household word; erections, homosexuality, and illicit sexual relationships are 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."
Despite a much more relaxed attitude regarding sexuality in our culture, few doctors leave medical school with the tools to assist their patients in the sexual area. Physicians are simply not prepared to help people 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 relationship.
Realizing the needs of people with SCI, the Paralyzed Veterans of America (PVA) recently took a giant step forward in addressing this much-neglected area. With the eleventh clinical practice guideline (CPG), PVA--which provided administrative and financial support--and The Consortium for Spinal Cord Medicine tackled the sexuality issue in a manner never accomplished before.
This fall, after more than two years of reviewing the latest in scientific evidence, PVA published Sexuality and Reproductive Health in Adults with Spinal Cord Injury: A Clinical Practice Guideline for Health-Care Professionals.
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 subject 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 in 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 more than 17 professional organizations. Their input was integrated into the text. Then, 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, and doctors were concerned with secondary conditions such as autonomic dysreflexia (AD) and spasticity. Nurses, psychologists, social workers, and other mental-health professionals were concerned with body image, relationships, and communication issues.
All aspects of the topic received careful consideration. The final product ultimately became a blending of the physical, emotional, and relationship aspects of sexuality and reproduction.
As the CPG on sexuality and reproductive health is published, several areas of research stand out as especially relevant. These are a few of many areas where new research has been reported. A sampling of these includes information on the timing of sexual counseling, AD, and pregnancy.
While all members of our panel believe people should learn about sexual functioning during acute rehabilitation, research has demonstrated most individuals with a new SCI are not ready to comprehend the sexual adjustments ahead of them. They are much more ready to learn about sexual changes in the first six months following discharge from rehabilitation.
By that time, the majority have attempted sexual intimacy with another person. Unfortunately, most have been dissatisfied and discouraged by the experience. In fact, for many, those "unsuccessful" first attempts at being sexually active scare them away from future intimate relationships. Sexual self-confidence is fleeting early after injury!
Although six months postinjury seems like an ideal time to provide sexual counseling, research has demonstrated that more than 90% of people with SCI never receive counseling or education on the topic once they leave their acute rehabilitation program. Many simply don't know where to turn for information when they get back 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.
Repeatedly in our review of the literature, problems of dysreflexia are noted when people T6 and above are sexually active. AD 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, 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 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 (T6 and above) should be aware that dysreflexia is common during sexual activity and realize how to prevent it, respond to it, and intervene should it 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 nitroglycerine ointment.
Few women are aware of pregnancy issues following SCI. Only a few years ago, the idea of a planned pregnancy after injury was almost unheard of. Times have certainly changed! The new CPG provides some of the most up-to-date information on pregnancy, labor, and delivery for women with SCI.
One 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. Healthcare providers are often unaware of the need for ongoing seating adjustment to accommodate for the increasing weight and size of the baby.
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 must be monitored in order to ensure adequate pressure distribution is maintained given the added weight and ongoing change in body mechanics.
In conclusion, 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 SCI. 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 healthcare providers will now have a document to serve as a resource for their clinical work with people who have SCI. Researchers will also have specific recommendations on which to base their hypotheses for future studies. It is our hope the guideline can serve as a foundation on which new research and new information on this topic can be based.
Ultimately, however, the real purpose of this resource is to bring accurate information on sexuality to people with SCI. It is only with such information that these individuals can make informed decisions as to whether they wish to remain sexually active following injury. This decision, regardless of SCI, is a fundamental right of all people.
Ed. note: Sexuality and Reproductive Health in Adults with Spinal Cord Injury: A Clinical Practice Guideline for Health-Care Professionals was scheduled for publication in November. Legal and medical editing may cause a delay, however.
RELATED ARTICLE: The Consortium for Spinal Cord Medicine
How can we make care for people with spinal-cord injury or disease (SCI/D) more evidence-based? Since 1995, a group of 22 health-professional, payer, and consumer organizations, funded and administered by the Paralyzed Veterans of America (PVA), has made this question their mission. It's a mission centered around evidence-based clinical practice guidelines (CPGs)--recommendations to healthcare providers based on current research findings that expert methodologists have graded for their scientific strength and validity.
Using scientific research and consumer input, the Consortium updates these guidelines and develops new ones, promoting an SCI/D research agenda that encourages scientific rigor and outcome evaluation.
The Consortium's CPGs for healthcare professionals and the companion consumer guides help people with SCI/D put this information to use in their daily lives. These easy-to-understand publications provide guidance and address questions on SCI/D subjects ranging from pressure ulcers to bowel care to expected outcomes one year out from injury. Some consumer guides are available in Spanish.
Printed and downloadable versions of the clinical practice guidelines and consumer guides are at www.pva.org under "Publications." In addition to the new sexuality CPG, healthcare professionals can obtain information from the following publications:
* Clinical Practice Guidelines for Health Care Professionals
* Bladder Management for Adults with Spinal Cord Injury
* Preservation of Upper Limb Function Following Spinal Cord Injury
* Respiratory Management Following Spinal Cord Injury
* Depression Following Spinal Cord Injury
* Neurogenic Bowel Management in Adults with Spinal Cord Injury
* Outcomes Following Traumatic Spinal Cord Injury
* Acute Management of Autonomic Dysreflexia
* Pressure Ulcer Prevention and Treatment Following Spinal Cord Injury
* Prevention of Thromboembolism in Spinal Cord Injury
Visit the Web site to learn about the consumer guides. This new resource is scheduled for publication in November.
by Stanley Ducharme, PhD