Journal Club Discussion #9: Intimacy after SCI in Women

Hey readers! This week I put out a poll on Instagram asking what you guys would like to read about in our journal club discussions (if you aren’t following me on Instagram, you totally should). I received a request to talk about sexual intimacy as an activity of daily living (ADL). I know this can be a sensitive and private topic, so feel free to skip to the next blog post if you are not interested in reading this one. However, as OTs and OT students, this is very important to talk about! The article that we are reading this week is called “‘Don’t Think Paralysis Takes Away Your Womanhood’: Sexual Intimacy After Spinal Cord Injury” by Heather A. Fritz, Heather Dillaway, and Cathy L. Lysack. AOTA members can access it here.

Background Info

The World Health Organization (2002) defines sexuality as including “physical, emotional, and sociocultural dimensions; it encompasses intimacy, sex, reproduction, gender identity and roles, reproductive capacities, and sexual orientation” (…as cited in Fritz, Dillaway, & Lysack, 2015). The authors discuss the impact that spinal cord injury (SCI) has on sexuality, including the link between positive sexual experiences after SCI with psychological well-being and quality of life (Fritz, Dillaway, & Lysack, 2015). Women with SCI may be denied sexual and reproductive education due to being viewed as asexual and unable to reproduce. Due to a lack of literature regarding sexual intimacy after SCI among women (most of the literature focuses on men), this article aims to gain women’s perspectives on sexuality after SCI using the lived experience.

The Results

The mean age of women who participated in this study was 46-years-old, and a little over half of the participants had paraplegia (paralysis of the lower body/legs) while the remaining participants had tetraplegia (paralysis of all four limbs). The article uses many direct quotes from participants to gather their personal opinions. Check out the article to read them!

Some of the findings of this study were that each individual defines sexual intimacy differently, and 75% of the participants were not fully satisfied with their level of sexual intimacy. Some physical barriers that individuals with SCI face in the area of sexual intimacy are “pain, weakness, fatigue, pressure ulcers, sensory loss, and lack of bowel and bladder control” (Fritz, Dillaway, & Lysack, 2015). This may lead to a lack of participation in this ADL, despite having a desire to. The authors also discuss sexual confidence, identity, and self-esteem, all of which may provide barriers to dating or engaging in intimate relationships.

There is also a lack of education that creates a barrier to participation. Participants did not receive education regarding what positions would be feasible or how to adapt to the changes that their bodies were experiencing. For the majority of participants, the only education that they received on sexuality after SCI was that they could still become pregnant and which birth control options would be appropriate for them. This left participants to have to figure out the rest on their own. The timing of education on this topic is also important, which the authors go more into detail about in the article.

What I Think

I think that this is a really important area that OTs should feel comfortable asking their patients about when appropriate. It is important to ask the person how they define sexual intimacy and how they define satisfaction in this area. This could be based on emotions, relationships, and closeness for some, but for others, it may be largely physical. If the OT doesn’t ask, it is possible that no one will. As an activity of daily living, sexuality should be addressed in patients regardless of what their condition or disability is.

Something that one of my professors said in class has been sticking out to me while reading this article. She said that no matter where you work as an OT, sexuality will always come up. This may occur more often in some settings (ex. hospitals in which you work with a lot of SCI patients), but it can come up anywhere. It may come up in early intervention when talking to the child’s parents because caring for a child with a delay or disability can impact relationships. It can come up in pediatrics through sexual education classes, teen pregnancy, and sadly due to sexual abuse. Finally, it can come up in adults and geriatrics as an ADL. Regardless of where you practice, I think that it is important to get comfortable asking questions that may be uncomfortable.

The implications for OT Practice that the authors highlight include:

  • “Occupational therapy practitioners can develop sexual education programs that are tailored to the client’s life stage-specific sexual desires and goals” (Fritz, Dillaway, & Lysack, 2015).
  • “Occupational therapy scholars and practitioners can incorporate strategies into sexual education programs to increase sexual self-confidence and relationship-building skills” (Fritz, Dillaway, & Lysack, 2015).
  • “Occupational therapy practitioners (including faculty, staff, and students) can engage in reflective dialogue and advocacy for addressing the unique sexual concerns of underrepresented populations in the literature such as women and gay, lesbian, and transgendered people with severe physical disabilities” (Fritz, Dillaway, & Lysack, 2015).

Question of the Week: Do you ever discuss sexual intimacy with your patients/clients? If so, what setting do you work in? When does it usually come up?

Citation: Fritz, H. A., Dillaway, H., & Lysack, C. L. (2015) “‘Don’t think paralysis takes away your womanhood’: Sexual intimacy after spinal cord injury.” American Journal of Occupational Therapy, 69. doi: 10.5014/ajot.2015.015040

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