With Saint Valentine’s Day having just passed, our thoughts were focussed on love, intimacy and sexuality. What about people with limited mobility, in wheelchairs, paraplegics or quadriplegics?
When sexuality takes priority!
After an accident and during the rehabilitation process, priority for paraplegics is sexual rehabilitation. This takes second place for quadriplegics after focussing on the functioning of the upper limbs. A survey showed that the main reasons why people want to continue participating in sexual activity are: the need for intimacy, sexual needs, self esteem and wanting to keep their partner (1).
The responsibility of sexual education and rehabilitation is often relegated to a team of specialists or to a single specialist whose endeavour is to meet specific needs. The majority of the Canadian teams or centres involved in rehabilitation seem to lack the necessary expertise in the area of sexual rehabilitation(2). On a global level, sexual rehabilitation is often disappointing, leaving those who have gone through the process with unanswered questions unmet needs. Also, when health care professionals cannot or will not answer questions about sexual difficulties for people with spinal cord injuries, they are left with feelings of frustration, disappointment, embarrassment and sometimes they even feel intimidated(3).
A review of the scientific literature shows that one particular model provides superior results. The “SI-SRH” model involves the use of a transdisciplinary team throughout the process of sexual rehabilitation which involves four different steps.
The main problem here is the lack of participation of the health care professionals who are not part of the specialised team: nurses, occupational therapists, physiotherapists, and so forth. Why is this, you may ask. Lack of knowledge or discomfort discussing sexuality are the two main reasons(3). For the model to be successful, basic training must be provided for all of those intervening. Studies have shown that providing adequate training increases confidence levels in discussing sexuality (3). The goal is to allow all of those intervening to participate in the first phase, and ideally in the second one as well.
The first step is one of discovery: Does the patient wish to discuss sexual health? Is this a real need, and if so, with whom does the patient feel the most comfortable talking about it? After, information should be provided in the form of flyers, books, etc, and then the patient can be told about the team specialised in sexual rehabilitation. The most important thing at this stage of the game is to reinforce the idea that sexual health is an integral part of the rehabilitation process for spinal cord injury victims. Health care professionals should give more importance to sexual problems than to other areas that may be of concern (3). It would seem best to ask questions about potential areas of difficult early on to show open-mindedness in discussing these issues. Everything should be done with respect and a willingness to listen.
In the second step, specific guidance should be provided without going into the specifics of each individual case. The areas of guidance could be different therapies, technical aids or medication or discussion surrounding the topics of fertility, sexual positions, erection, lubrification for women, ejaculation and orgasm. Body image and self esteem also need to be addressed as well as understanding anatomy and the physiological aspects of sexual dysfunction. Each professional will not be able to address all of these areas, but rather the ones they feel comfortable with and the areas where they feel competent providing guidance. Anything beyond this should be referred to a specialist. It is most likely that any one of the professionals can influence the physical self image and self esteem of a person that has suffered a spinal cord injury, but very few will know how to answer questions surrounding how to deal with male infertility.
After these two steps, any further, more specific problems should be dealt with by the team of specialists in the last two steps of the ‘SI-SRH’ model.
Physiotherapy and Sexual Rehabilitation
Several research papers focus on the importance of the role of physiotherapy in sexual rehabilitation (4, 5). It is important to reach the highest level of personal autonomy and be as physically functional possible; this is indispensable to increasing sexual satisfaction (5) and is a common goal in physiotherapy. Hours spent in the client-patient therapeutic setting will lead to a relaxed atmosphere and will build confidence. Mobility, positioning, strength, endurance and spasticity are other factors dealt with in physiotherapy that can greatly influence sexuality (ex.hip mobility, adductors) (5).
Our basic training is not sufficient to allow us to act. As for me, before I read these articles, I didn’t realize that I had a role to play. I had seen other colleagues discussing sexual matters, and could feel the uneasiness between their patients. And yet these types of discussions are so important, as the contribution made by a peer is often one of the most useful and appreciated ways of providing information (1).
Adequately training health care professionals should allow us to hone in on the best time to bring up questions of sexuality: strategies, knowledge of the available tools and methods for intervening. Or yet how to be aware of where and when we can be useful.
Understanding the basics is essential. For example, fertility is not affected in female patients with spinal cord injuries – they are able to have children. Their menstrual cycle will usually start up again six months after their accident. For men, however, 85% of them will have fertility problems due to difficulty with ejaculation or changes in sperm count. This doesn’t mean an end to their sexuality since medication, and other tools can assist with erections and ejaculation. It is also a known fact that people who relearn to discover their bodies and explore their erogenous zones either alone or with a partner, will end up with a more satisfying sexual life (5).
Another interesting point is that in a partnership, it is important that the non-affected partner avoid looking after certain daily needs (ex. Cleaning, catheterising etc), as providing care in these areas can lead to diminished sexual attraction (on the part of both partners) as well as the quality of their intimacy (5).
To find out more…
If you are a physical rehabilitation specialist and you would like to find out how to further help persons with spinal cold injuries in the area of sexuality :
First, be open to discussion.
Second, you may want to read this article. https://physiotherapyquarterly.pl/articles/2_2012_12-31.pdf
This is the most comprehensive document on the subject of symptoms and causes of sexual problems for this particular clientele, and on the usefulness of input from all health care professionals (with an emphasis on physiotherapists).
As well, I would like to share this testimony with you. It is an excerpt from the document “International Perspectives on Spinal Cord Injuries” (1) published by the World Health Organiation.
“I acquired a T10 spinal cord injury when I was very young and being a wheelchair user was a natural part of my life. Growing up in a rural part of the USA, I felt comfortable with myself and had a very positive self-identity. However I was never sure if I would find a partner and often felt discouraged about not dating as much as my friends. Now, I am in a loving, stable relationship and plan to be married in the coming year. Looking back, I realize that the only limitations I truly faced are the ones I placed on myself due to a lack of self-confidence regarding dating and sexuality. As a woman with a disability, I had to be even more open, up-front, honest, and confident with men because there were many questions inherent to the process, such as: ‘How will this work?’ or ‘Can you have sex?’Once these questions were answered, then things proceeded naturally as they would with any relationship!” (Cheri, USA)
Do you have a handicap and are you looking for information and support?
“ACSEXE+ is a bilingual multimedia project led by FQPN since 2015. Its goal is to create a space to talk about sex positivity and disabilities in Québec.” AXSEXE promotes sexual differences. They have published a series of articles on love and sexuality for people with handicaps. https://www.fqpn.qc.ca/acsexe/
I particularly liked one of the articles on 5 ways to find love online when you are in a wheelchair (article in French only). https://www.fqpn.qc.ca/acsexe/5-conseils-trouver-lamour-ligne-lorsquon-a-handicap/ Here is a similar article in English. https://www.fqpn.qc.ca/acsexe/en/playing-online-dating-game-wheelchair/
You can also “like” them on Facebook. They also published a satirical article titled, “I Beg Your Pardon? Dealing with Rude Nondisableds”. https://www.scarleteen.com/i_beg_your_pardon_dealing_with_rude_nondisableds
The website https://www.scarleteen.com/ offers several publications on sexuality. You will also find a collection of blog posts on “Sex and Disability” which deals with the subject of sexuality for the physically and mentally handicapped.
Happy (blated) St. Valentine’s Day!
(1) Organisation Mondiale de la Santé (2013) Lésions de la Moelle épinière : Perspectives Internationales [en ligne] https://apps.who.int/iris/bitstream/10665/131503/1/9783033046399_fre.pdf
(2) Craven, C. Verrier, M. Balioussis, C. Wolfe, D. Hsieh, J. Noonan, V. Rasheed, A. Cherban, E. (2012), Rehabilitation environmental scan atlas : Capturing capacity in canadian SCI rehabilitation [en ligne] https://rickhanseninstitute.org/images/stories/ESCAN/RHESCANATLAS2012WEB_2014.pdf
(3) Hartshorn, C., D’Castro, E., & Adams, J. (2013). ‘ SI- SRH’ – a new model to manage sexual health following a spinal cord injury: our experience. Journal Of Clinical Nursing, 22(23/24), 3541-3548. doi:10.1111/jocn.12449
(4) Cencora, M. Pasiut, S. (2012) Sexual Rehabilitation after spinal cord injury, Fizjoterapia, 20(2) p. 12-31 https://physiotherapyquarterly.pl/articles/2_2012_12-31.pdf
(5) Khanal, D. (2013) Education on Sexual Life in Spinal Cord Injury Patients: A Missing Link in Physiotherapy, Journal of Novel Physiotherapies, 3(1), https://www.omicsonline.org/open-access/education-on-sexual-life-in-spinal-cord-injury-patients-a-missing-link-in-physiotherapy-2165-7025.1000124.pdf