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Developing Guidelines
on Sexuality and Reproductive Health in Adults with Spinal
Cord Injury
Stanley Ducharme, Ph.D.
Chairman
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”.
 Despite 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!
 Although 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.
Pregnancy
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.
 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. 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.
Conclusion
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.
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