| Sexuality And The Rehabilitation Process
Stanley Ducharme, Ph.D.
Next year marks the thirtieth anniversary that I have been
involved in the psychological aspects of rehabilitation
medicine. Over these years, I have developed a number of
interests in my clinical practice. One such area has been
the impact of physical disability on sexual functioning.
In this regard, I have been involved in providing education
and counseling to men and women with spinal cord injury
(SCI).
Background
The
idea of providing education about sexuality is somewhat
unique to the field of rehabilitation medicine. Actually,
it has only been since the mid 1970's that people began
talking about sexuality as part of the rehabilitation process.
Before that, even the doctors didn't think you could have
much of a sex life after an injury. They believed that your
sex life was virtually over once you became spinal cord
injured. As a result, the topic was avoided or ignored.
Not
so surprisingly, it was people from the independent living
programs and consumers with SCI themselves who began to
demand this type of information from their doctors. Consumers
challenged the medical establishment. They were going to
be sexual. Their marital relationships were important to
them. Patients were talking about sex among themselves and
they turned to their doctors when they had questions. Back
then, medical providers were also embarrassed about sex,
but they had no choice but to respond.
Naturally,
rehabilitation lasted a lot longer back then and people
wanted to know about sex before they went home. In those
early days, urologists or gynecologists were rarely involved
on the rehabilitation wards and there was very little coordination
of services between the rehab doctors and other medical
specialists. Eventually, it was Dr. Ted and Sandra Cole
at the University of Minnesota who introduced the topic
to the field of rehabilitation medicine. They developed
educational workshops called Sexual Attitude Reassessment
Programs, (SARs).
Hard
to believe, but talking about sexual functioning during
rehabilitation was controversial and somewhat contentious
back in the 1970's. Also, the idea seemed almost academic
to many professionals. Even if the doctors agreed that patients
should be taught about sex, there was no idea how to do
it; who should do it; what information should be conveyed.
There were no medications or devices that could be provided.
There was no Viagra to give to a patient back in those early
days.
The
introduction of the penile prosthesis changed all of that.
For the first time, the medical establishment felt that
they had something to offer. Somehow, talking, understanding
and listening just didn't seem to be enough. Men who wanted
to be sexually active after SCI were given the option of
having a penile implant. And, thousands of men with SCI
took up the urologists on their offer.
The
Current Situation
Fortunately,
today things have changed. Most people receive education
and counseling about sex before they leave the rehabilitation
hospital. In fact, several studies have looked at people's
knowledge about sex at six months and one year after discharge.
The results have been surprising!
Studies
show that more than 50% of people with SCI are sexually
active in the first six months after discharge. Unfortunately,
approximately 35% of these people are generally dissatisfied
with their first sexual experiences after their injuries.
They are unhappy with their physical functioning, ability
to satisfy a partner and the lack of pleasure they receive.
What's
so shocking is the following conclusion. Once discharged
from rehabilitation, at least 95% of people never receive
any further education or counseling about how to improve
their sexual functioning and satisfaction.
At
the one-year mark, most people with SCI still do not feel
that they have mastered their sexual adjustment. At least
50% are still dissatisfied with sex and many people decide
to put sexual functioning aside. They tend to focus on other
aspects of their injuries. They focus on obtaining more
physical therapy, gaining more independence and learning
their medical care.
Finally,
at one year following discharge, about 70% of people aren't
sure whom they could talk to and how they could get services
related to sexuality even if they wanted them. As a result,
they don't ask about sex and many give up on being sexual.
There
is a lesson for us rehab people in reviewing these studies.
If people with SCI don't get sexual education during their
rehabilitation programs, they probably will never get it.
There is a limited window of opportunity.
Once
discharged, many people with SCI are not comfortable bringing
up the topic with their doctors and other health providers.
If they do feel comfortable, they don't know with who and
how to get the information they need. For the rehabilitation
professional, it is a lost opportunity. For the patient,
it's a huge loss and directly impacts quality of life.
Nuts and Bolts
The
acknowledgement that sexual concerns be integrated into
the rehabilitation process is an organizational decision
that needs to be supported by departmental managers and
administrative staff alike. Without full managerial support,
it is difficult for direct care providers to completely
incorporate these issues into the structure of team conferences
and discharge planning. Consequently, without administrative
support, the sexual adjustment becomes secondary to other
issues.
Unfortunately,
rehabilitation staff members can easily create a negative
atmosphere regarding normal sexual exploration and curiosity
after injury. It is not uncommon for patients to explore
these issues through comments to staff members or occasional
sexual advances to staff members. These sexual expressions
are naturally difficult and troublesome for staff members.
How
we react to sexual comments or sexual advances from the
patient, communicates an important message regarding sexuality.
At these times, many patients are exploring their sexuality
and trying to understand the impact of their injury on sexual
attractiveness and functioning. Staff members need to set
limits and boundaries in a positive, affirming manner. A
punitive, negative and infantalizing response by a staff
member can be harmful to the patient's sexual confidence
and self-assurance. Ultimately, his self esteem and emotional
adjustment to the injury can be compromised.
It
is never too early after injury to introduce the topic of
sexuality and relationships. Many professionals are concerned
that patients have other concerns early in the rehabilitation
process. My experience has been the opposite.
Even
during an acute hospitalization or in an intensive care
unit, people are wondering as to the future of their marriage,
the ability to father a child or their future attractiveness
to the same or opposite sex. Some people believe that concerns
about sex are one of the patient's highest priorities at
this time. Often the patient himself is unable to verbalize
concerns about sexuality so that staff members need to take
the lead in opening these discussions.
Validating
these concerns and offering to provide information when
appropriate can provide a sense of reassurance and normalization.
Often, it's helpful for the person with an SCI to know that
such resources are available. All staff members should encourage
the individual to ask questions and to verbalize any fears
or anxieties associated with their injury or their future.
Although
an obviously personal topic, issues of sexuality are best
discussed in a natural, comfortable atmosphere. They can
be easily integrated into other activities during physical
therapy, nursing care or recreation. In fact, these are
often the best times to broach the topic and to be available
for questions. How the therapist reacts to an erection,
a catheter or a personal question during these times, conveys
either an encouraging or unacceptable message to the patient.
The reaction of the therapist will either promote further
questions or discourage a future discussion.
Another
issue often debated is who should provide education on sexuality
during rehabilitation. Is this the domain of the doctor,
the psychologist, nurse or therapist? In general, all team
members have a role and a responsibility to address these
matters with the patients. Various members of the team should
address all issues around sexual positioning, fertility,
erections, communication, bladder management during sex
and other concerns. If left to one particular discipline,
typically these issues don't get talked about and information
is not conveyed.
The simple rule of thumb in assuming responsibility for
sexual education should depend on what staff member feels
most comfortable with the topic and this patient. This is
a case-by-case decision. In addition, who does the patient
feel the most comfortable with? It is ultimately the comfort
level and trust of the patient that should be the deciding
factor in making this decision. Patient focused care is
always the goal.
Conclusions:
In
essence, there's no mystery in providing sexual counseling.
Early after injury, people with spinal cord injury need
to know about what they can expect. People with spinal cord
injury, need to know that they have the option as to how
sexually active they wish to be. Sex is not lost after injury!
It is changed, may not be as spontaneous and may involve
the use of medications. Nevertheless, the bottom line remains
the same. After injury, you can still be emotionally and
physically intimate with another person if you chose to
be. The choice is yours.
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