The following is an excerpt from our podcast episode “Duchenne and Desire” with Physical Therapist Carolyn Kelley, DPT, PCS and Dr. Amanda Appel, MD, MPH. Click here for the full podcast.
Discussing Sex in the Clinical Setting
Amanda: In primary care visits, it’s actually recommended by the American Academy of Pediatrics that we talk to all patients about these things…
The HEADSSS model is the acronym that we use. It’s Home Education, Activity, Drugs, Sex, Suicide, and Safety are the things that usually get talked about in those visits. But we also tailor it to be developmentally appropriate for where the person is. So it’s not like a 10 year old comes in and we start talking to them about having sex. We try to follow more developmental cues.
And we do it in a very similar way to what Carolyn talks about – where we ask the parents to leave the room. Part of that is really just to help adolescents and young adults gain some autonomy and some management of their health care.
Child Autonomy
Carolyn: Yes, so I am a physical therapist and am one of the people that talks to people about sex in the clinic that I work at.
As part of our transition plan, these conversations typically happen at a point in the clinic visit where I am with the person alone, separate from their parents. We try to separate patients from their parents to give them an opportunity to talk about things that are private to them, and that they may not want to discuss in front of their parents. Usually at around the age of 15 but that varies.
As a parent myself, I think it also gives the parents practice separating from their child and giving their child some autonomy to talk to their providers and ask questions.
Building Trust
I tend to put sex into a laundry list of other important topics. So I’m asking questions, like “any changes in how you get dressed, any changes in how much help you need for bathing?”
And then I’ll include a question about being sexually active something to the degree of “a lot of my patients are thinking about or are sexually active. And I have a couple of questions for you about it. Is that okay, if we talk about it?” And in that, I am trying to look for permission and to get a sense from the person – is this something you’re interested in talking about? Is this something that applies to you?
And oftentimes, most of the majority of people that I talked to say, “No, we don’t talk about that.” And then I’ll just introduce the idea of “okay, no problem. I’m a safe person to talk to about that, if you have questions or want to talk about that further.”
These conversations are awkward to bring up with any person – regardless if you have a disability or not – but I find that over time, as the relationship builds and trust builds, that question about sex is often asked on subsequent visits. Me bringing it up opens the door for a conversation and it decreases the awkwardness of that conversation.
So I think the frequency and the regularity of anticipating these conversations with your health care providers, I will say not every health care provider is comfortable talking about this stuff.
Keep Talking About It
So if you or a family member has a specific sex related question, make that a priority during your check in. You know – different clinics are run differently – but in our clinic, we have a nurse check in with the family when they arrive and say “what are your priorities for today’s visit?’ and if a conversation about sex is a priority, that gets put at the top of the list.
And Amanda said, oftentimes, there’s not a lot of time in the clinic visit to cover everything, but we want to have time for what is the most important. So if it’s a sex related issue, they will find someone you are comfortable with or so you can have that conversation.
And then, we just got to keep talking about it.
More To Consider