Sex: Let’s Talk About It

The human need for intimacy does not end when a brain injury (BI) occurs, says Kathryn Farris, OTR/L, the education coordinator for Shepherd Center’s Acquired Brain Injury Rehabilitation Program.

“Sexuality and intimacy are integral parts of being human, but brain injury can make sexuality and intimacy more challenging for people and their partners,” Farris says.

So is sexuality a topic patients and healthcare providers are talking about? Farris and a group from several other brain injury rehabilitation facilities surveyed healthcare providers to find out. The researchers found that although 96% of survey respondents believe sexuality is important to the patients and families they work with, chances are, that it doesn’t get addressed.

SURVEY SAYS

According to survey results, 64% of healthcare providers had not engaged in conversations or provided education regarding sexuality and intimacy within the past year with any of their ABI patients, families and/or caregivers. Survey respondents included physicians, case managers, nurses, occupational, physical, and recreational therapists, psy-chologists, neuropsychologists, social workers and speech language pathologists. Farris presented these results at the annual conference for American Congress of Rehabilitation Medicine in November 2018, and most recently at the TBIMS Clinical Leadership Forum in April 2019.

Healthcare professionals listed many reasons as to why sexuality and intimacy might be a difficult topic to broach, including their own discomfort with the subject and their personal biases.

Researchers identified three areas of discomfort: initiating the conversation, listening to questions and responding to concerns. Among the respondents, 45% of providers were either uncomfortable or very uncomfortable initiating the conversation. While 25% were uncomfortable or very uncomfortable responding to questions and 10% of providers were uncomfortable listening to questions regarding intimacy.

Why the discomfort? Overwhelmingly, providers identified their current knowledge level and the tools and resources in place as the primary barriers. A majority of providers – 68% of them – said they had not had any training or education regarding sexuality and intimacy for persons with acquired brain injury. An overwhelming number – 92% – of the providers who responded agreed hat there is a need and desire for more formal training on how to talk about it. Other challenges with raising the topic included discomfort with cultural, gender and marital status differences.

A DESIRE FOR DISCUSSION

With the results of the survey, Farris says the need is clear. Sexual dysfunction is a problem for 20 to 50% of people with traumatic brain injury (TBI) at one or more years post-injury, according to literature on the topic. Anecdotally, Farris says it is a common topic that gets raised at peer support meetings, confirming people with TBI would feel comfortable discussing changes in sexual function after TBI with their healthcare providers.

“Rehabilitation professionals have the opportunity to pro-mote sexual wellness throughout the lifespan regardless of illness, injury or disability, and should recognize that sexuality can exist under all circumstances through a variety of expressions,” reports Farris in the research paper summarizing survey results.

Using the information gathered in the survey, a training curriculum for rehabilitation professionals has been created to help combat some of the myths and biases surrounding intimacy. The curriculum is set for rollout at Shepherd Center in the fall of 2019.

Written by Robin Yamakawa