York University PhD candidate breaking down taboos surrounding sexuality after spinal cord injury

Changing lives for the better is a core focus for Jacqueline Kathnelson, a fourth-year PhD student in Kinesiology and Health Science at York University. Kathnelson is researching the psychosocial needs associated with men’s sexuality following spinal cord injury.

Photograph of the researcher covered in the story

Jacqueline Kathnelson

Working under the supervision of Faculty of Health Professor Will Gage, Kathnelson interviewed men between the ages of 18 and 50 who have experienced a spinal cord injury to learn more about the kinds of supports they need to move forward with their lives. “Sexuality in general has been understudied in many populations because it is a very ‘taboo’ subject,” notes Kathnelson. “This is even more so when it is associated with a chronic disease or dysfunction, including spinal cord injury.”

“Sex is a big part of life and plays an important role in our overall quality of life. A spinal cord injury can affect sexuality in many ways and yet it is often not adequately addressed with patients,” she says.

A man sits in a wheelchair

Kathnelson is hoping to develop an improved protocol for clinicians and researchers to use when discussing sexuality with men who have experienced a spinal cord injury

She noticed a prevailing myth within the general and clinical populations that people with spinal cord injury are thought of as more asexual, meaning that people’s perception is that while individuals with spinal cord injury may experience an attraction they are not interested or aren’t able to participate in sex. This observation was reinforced when she explored the literature. “Overall, sex and sexuality has been ignored in the rehabilitation literature. The focus instead is on clinical aspects related to bladder and bowel function, skin health and other medical aspects of spinal cord injury. There’s a huge gap in the literature regarding sexuality of men after a spinal cord injury.”

“Men’s sexuality is multifaceted, and the psychosocial component is very important, yet many of the men I have interviewed report that discussions are limited to what drugs they can take to achieve an erection,” she says.

Kathnelson conducted in-depth interviews with male volunteers who have experienced a spinal cord injury to investigate their perceptions and needs associated with their sexuality. Her research approach focused on documenting the lived experiences of these men, specifically their psychological and emotional needs and if their questions and concerns were being addressed by clinicians and health care professionals.

“The physical aspect of sex is easier to discuss in a clinical sense,” notes Kathnelson, “but since the body has changed after spinal cord injury, for many men the other aspects of sexuality, including intimacy, become more important.”

The evolving nature of this intimacy changes the meaning of what sex is for these men, but no one has really explored this aspect of recovery from spinal cord injury and what it means to discuss it openly with the population, she says.

“I believe it has a lot to do with society’s belief that men don’t want to talk about their feelings and the sorts of things that maybe women are more comfortable discussing,” she says, noting that when she began her interviews, she found it difficult to get men to “go there” but once they did, their observations were both insightful and compelling. “The stories they told me and the experiences they shared with me were so deep and personal and the spinal cord injury had absolutely changed the meaning of sexuality for these men. There was indeed more emphasis on intimacy and emphasis on those other aspects of sexuality and there’s less about what we traditionally think sex should be. For many of these men, it is more about being open and exploring and connecting with another person.”

Kathnelson is taking the ideas that came out of her interviews and is now putting them forward to a larger population using a series of questionnaires. She is hoping to validate her initial observations, rate and rank the aspects of men’s sexuality in order of importance. Her ultimate goal is to establish a protocol that will assist clinicians, health care professionals and patients to establish an open conversation about the changing nature of sexuality following spinal cord injury.

Kathnelson with her poster presentation at the 2019 American Spinal Injury Association meeting

Her initial observations were presented in a poster and oral presentation titled “Utilizing a Phenomenological Approach to Examine the Psychological and Emotional Experience of Sexuality for Men after Spinal Cord Injury,” which she delivered to the American Spinal Injury Association (ASIA) at their 2019 conference in Hawaii. She has since joined the organization and is being mentored by its president. She was also selected to be featured as the ASIA new member spotlight. Response to her paper was positive with many clinicians and researchers asking for a final copy of her findings.

“For men with spinal cord injury, the psychosocial aspects of sexuality are proving to be vital in their overall quality of life,” says Kathnelson, “and to their sexual satisfaction.”

She hopes her dissertation will lead to the development of an improved protocol that will provide clinicians and health care workers with information to help men with spinal cord injury achieve maximum fulfilment, breaking down taboos and opening healthy discussions.

To learn more about Kathnelson’s research and how to participate in her study, email crampj@yorku.ca.

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