UBC Occupational Therapy students explore the sexual needs of people with spinal cord injuries
For people with spinal cord injuries, rehabilitation is not just about regaining muscle control, or learning how to manage breathing or blood pressure complications.
Rehabilitation is also about re-engaging in sex.
Like many other body functions adversely affected after a spinal cord injury, sexual function can be impacted — and along with it, one’s self-esteem and self-identity.
Yet conversations around sexual health remain difficult — and not just for those with spinal cord injuries, but also for their partners and healthcare providers.
In 2009, in an effort to encourage conversations around sexual rehabilitation, a group of UBC occupational therapy students created a sexual device manual designed for people with disabilities in mind. Today, seven years after PleasureAble was first published, a new team of occupational therapy students — Marina Khenson and Chelsey Tyler — are looking at how the resource could be further improved to support those living with spinal cord injuries.
Here, they share findings from their investigation, and advocate for the need to talk about sexual rehabilitation more openly.
Why did you decide to take on this particular research topic?
Our initial reaction to researching sexual rehabilitation was ‘We can’t present our findings in front of our parents.’ But then our hesitancy made us reflect and think ‘that’s the reason why we should be doing this project because sexual rehabilitation is still so taboo.’
Our society tends to see people who have physical limitations as being less sexual, or believe that a sexual life is somehow not as important for them. As a result, there’s not always the support in place for these individuals to be able to engage in a healthy and satisfying sexual life.
It’s so important to get people talking about sexual rehabilitation. If this is something that we, as healthcare professionals, can’t talk about, then there’s a major problem.
What was the specific focus of your study?
We aimed to obtain feedback from people who had been using the 2009 edition of the PleasureAble manual as a sexual rehabilitation tool. We wanted to gather ideas on what would make it more useful for people with spinal cord injuries, their partners, and clinicians, and use that feedback to inform a future edition.
What were your findings?
The first version of the manual focused a lot on equipment that people with disabilities can use to help them have a satisfying sex life. During our research, many expressed a need for more information on the psychological and social factors of managing relationships and managing sex. Some talked about how their confidence took a bit hit after the injury, or how their body image wasn’t what it used to be — they were worried about what might happen during sexual encounters, and how to have that conversation with their partner, or raise the topic with their doctor.
Many also wanted to see the manual include more resources that could connect them with other people who have had spinal cord injuries, as well as clinicians who have trained in the area of sexuality and disability. They also talked about the need for more resources that normalize sexuality and disability — including blogs, pornography featuring people with disabilities, or TedTalks on the subject.
When we spoke to clinicians, there was a lot of dialogue about how bringing the topic of sex up in their practice is really difficult. They wanted to see the manual focus in on that issue and provide some techniques so that they can talk about sex with their clients without feeling like they’re overstepping their professional boundaries, or not meeting other high-demand issues, like bladder and bowel care.
Based on all the feedback we received from people with spinal cord injuries, their partners, and clinicians, we’ve created a detailed outline that we’re hoping a future group of students will be able to take forward to create a new version of the manual.
What’s the biggest lesson you’ve learned, or something that surprised you over the course of your research journey?
Chelsey: Before taking on this project, chatting about different issues that people with spinal cord injuries might face when having sex was something that was really embarrassing for me to talk about, but it’s not anymore. I feel like I’ve achieved my goal in terms of normalizing the topic so that I can have this conversation with clients in the future.
Marina: I was surprised by how our participants were so open with us in sharing these really, quite intimate details. They were very willing to share these parts of their lives, and eager to engage with us. I think it just really made me realize that it is an area that is so under-focused. Through these conversations hopefully they’ll help to change that for people in the future.
Project Supervisors: Leslie Houle, Dr. Stacy Elliott, and Dr. Bill Miller
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