Study offers insights for clinicians
For people with a spinal-cord injury (SCI), maintaining sexuality and a healthy sex life remains an important factor in overall health and quality of life.
And a recent study led by researchers at Shriners Children’s Chicago in Illinois and Roosevelt University in Chicago, with a grant from the Craig H. Neilsen Foundation, offers new perspectives for clinicians when discussing the topic with their patients.
During the second day of the Paralyzed Veterans of America Healthcare Summit + Expo in Anaheim, Calif. Deanna Tuttle, MS, clinical psychology student at Roosevelt University in Chicago and clinical research coordinator for Shriners Children’s Chicago helped give a presentation on the study.
The study aimed to report the frequency of physical intimacy and sexual intercourse among adults with pediatric onset SCI (before age 18) and assess the relationship between physical intimacy frequency and demographics, injury severity characteristics, secondary health complications and psychosocial factors.
“So, in the research, sexual activity is consistently described as a core component of quality of life and well-being, but it’s inadequately addressed by health care providers,” Tuttle. “For those who obtain their injury in adulthood, people with spinal-cord injury, there’s not much shift between pre- and post-sexual activity from 89% to 87%. So, bottom line is that people are engaging in sexual activity, and it is important to them.”
Tuttle says sexual health is a much broader concept beyond intercourse and penetration, and sexual satisfaction is not determined solely by genital functioning. There are a variety of factors that could impact a person’s sexual activity, including biological, psychological and social factors. For example, some individuals may have physiological impairment or dysfunction regarding sexual activities. Depending on the injury level, some may be able to achieve psychogenic erections, which occur in response to mental or sensory stimuli, or reflexive erections, which occur in response to physical stimulation of the genitals.
Other considerations include an individual’s mobility limitations, bowel and bladder programs, risk of autonomic dysreflexia, and psychosocial factors such as self-esteem, fear of incontinence, self-image, depression, anxiety, desire and hormonal issues.
“And then we zoom out a little bit to contextual and systemic issues,” says Tuttle. “So, we would think about someone’s relationship status. Are there barriers to dating for example? Are they partnered? What is their partner’s situation? Are they coping well? What are their individual factors they’re bringing to the relationship? Societal view. There’s all kinds of stigma, desexualization, infantilization of those with physical disabilities. And then, you know, of course, cultural outlook on sex in general, gender norms, expectations. What does it mean to be a man? T be feminine? And so all of these things are again impacting a person at the individual level, whether they’re dealing with those internally or not.”
Tuttle says there are also clinical barriers to working with patients on this topic, including physician discomfort, a perceived deficit of knowledge and visit time limitations.
“Some people might be misinformed, have their own biases as providers,” Tuttle says. “For example, the idea that disability would preclude or deprioritize a person’s sexual health, which is not true. Age discrimination is another identified barrier.”
The study involved 277 participants with tetraplegia with an average age of 37 and who were injured at an average age of 13. The data was collected through structured phone interviews, and the variable of interest was the frequency of sexual activity, described as penetrative or non-penetrative sex. The frequency was described as frequent (monthly, weekly or daily) or infrequent (yearly or never).
“And what we found was there were three various variables of statistical significance that predicted the frequency of physical intimacy or non-penetrative sex. These were independent living, marriage and social integration,” Tuttle says.
The study also found about half of participants engaged in sexual activity at least monthly, compared to 75% of the general U.S. population.
“The frequency of sexual activity was not determined by injury characteristics such as physiological impairment,” Tuttle says. “Psychosocial factors had the largest contribution to differences in the frequency of physical intimacy. Marriage was the strongest predictor, which aligns with other research, and social integration and independent living were of course, also significant predictors.”
Tuttle says these results contribute to research literature by emphasizing treatment from a biopsychosocial model rather than a biomedical approach for this topic.
“From a clinician perspective, just kind of considering beyond genital dysfunction and evolving what is it that we mean when we talk about sex, talking about overall sexual well-being?” Tuttle says. “We might talk to our patients about societal norms and expectations, kind of moving towards acceptance of the self. And in the literature, those who didn’t take this new perspective actually report less interest, participation and satisfaction from sexual activities. Focusing solely on medical interventions to get an erection or orgasm actually make it difficult for the patient to accept and adjust to this change in sexuality.”
Tuttle says it is a learning process and takes time for people to explore other forms of sexual expression. And if the person is partnered, communication is key.
Although the topic should be broached in a sensitive way that takes the individual’s lived experiences into account, Tuttle also recommends that sexual health should be routine part of visits and not one that’s brought up when and if clinicians think it might be appropriate.
Overall, the study found that social factors were more predictive of physical intimacy frequency than factors related to the injury or secondary medical complications. Health care and other allied professionals can support people with SCI by encouraging social integration and broadening the patient’s understanding about what it means to have fulfilling and intimate experiences throughout the lifespan of SCI.
Areas for future research may look further into the impact of social and romantic experiences on outcomes.
“Based on our study, I would hypothesize that people who have more opportunities and engagement in social integration might have higher levels of sexual activity and satisfaction,” Tuttle says.
