TABLE 2.

Common Themes

Theme	Representative Quotations
1. Both parents and youth reported substantial fear about the youth's symptoms, diagnosis, prognosis, and treatment option of CBiT.
a. Fear of presenting symptoms as being seizures	[Parent 2]: “Originally, it started as her falling over, shaking all over and it appeared like an epileptic seizure, but then it turned into her hallucinating and seeing evil things. She was running out of the house, searching for her father who wasn't involved in her life anymore” [Parent 3]: “She got hurt at school a couple times. It was, sort of, like they grabbed her and knocked her to the ground. It was very concerning, watching videos of what was going on when she was having them at school.” [Parent 4]: “We thought she was having a stroke or seizures.” [Youth 1]: “I was horrified I was dying… I didn't know what was happening. I was scared, and I didn't really know what was going on.”
b. Fear of not knowing what to do in the situation and feeling helpless	[Youth 5]: “I had a seizure where I couldn't move for 36 hours; it was awful and very scary… a lot of them would leave me incapacitated, and not being able to like control my body.” [Parent 6] “I think it was scary for her because she had gotten hurt a couple of times, and being told that there wasn't anything we could do immediately to help stop it was scary for her.”
c. Frightened that there is no medication or treatment for the condition, equated to the perception that patient may have this condition permanently	[Parent 1]: “Oh, gosh. Is she going to go on medication? Like-how are we going to get this under control? How are we going to keep this from happening” [Parent 2]: “How is she going to go to school?” Is there any way to cure this? [Youth 5]: “There is no medicine for it, like its going to be around forever, I think that would be kind of the scariest thing to hear.”
d. Counterpoint: many felt relief of having a diagnosis and a small subset reporting relief that diagnosis was not epilepsy	[Parent 7]: “I was also kind of relieved because I had a name to it now and it wasn't just an unknown condition.” [Youth 6]: “I was happy it wasn't epileptic because I've helped my sister get through her seizures.” [Parent 8]: “We do realize that it's not brain-based, necessarily. His brain is not affected in the same way that epilepsy would.” [Youth 8]: “I feel like they [parents] were relieved that it wasn't as serious [as epilepsy].” [Parent 2]: “We were thrilled. I felt like, I could calm down. We were told it wasn't affecting her brain.” [Youth 6]: “I was pretty happy to have a diagnosis.”
2. Good communication skills highlighted during the interview included providing reassurance, listening, and allowing time for questions, with different preferences between youth and parents in the mode of communication.
a. Good communication skills liked by both youth and parents	[Youth 1]: “I think everyone was polite, nice and open about the subject.” “…the bedside manner was very good. Overall, I've always had a very good experience…everyone was very sweet and had my best interests in mind.” [Parent 2]: “The neurologist was very calm. She was easy to talk to. She just put me at east with saying it wasn't epilepsy.” [Parent 8]: “The doctor was very good at listening and seeing him [the patient] as the expert, rather than just being like you are just the kid.” [Parent 3]: “They [medical team] were very clear, empathetic and straightforward.” [Parent 4]: “To have it come from a medical professional really made me accept that this is what it is and this is what I need to do to help my daughter through this.” [Youth 4]: “The doctors [at the hospital] actually listened to me. They took time and tried to figure out what was going on.” [Youth 1]: “They made me feel really safe.” [Youth 2]: “They did give me a printout of some typical PNES seizures.”
b. Differences between skills liked by parents and youth	[Parent 6]: “The best example was one that she gave me, explaining that some people get stomachaches and headaches when they're stressed out. So [my child's] body responds differently. That helped me understand it better.” [Parent 2]: “She just broke it down more. She gave me (parent) an example related to a computer and hardware and how it works, related that to the brain and how the brain is sending incorrect signals to the rest of his body.” [Youth 1]: “Having written materials or pictures can be helpful to understand how nervous systems function and is impacted by stressors.”
3. Poor communication for both youth and parents included medical jargon, minimization of youth's symptoms, lack of apparent compassion, brevity of communication, and lack of written materials to supplement discussions.
	[Youth 5]: “Explaining a lot of words to younger kids, so that way they understand it more.” [Youth 7]: “The first doctor told me that I was faking it, basically.” “[second doctor] weren't like dismissive the way the first doctor was.” [Parent 8]: “Seeing him more than one time to understand where he is and who he is.” [Parent 2]: “I think she handed me a pamphlet on therapy but did not really explain what NEE was… I feel like there wasn't a lot of guidance in what to do moving forward.” [Parent 5]: “Sometimes you'll get a doctor that comes in and is extremely intelligent and they talk above everybody. I think that is a big turnoff, feeling like they're not necessarily communicating to a person but they're talking about them, not with them.” [Youth 3]: “I think they dealt with my parents really well, but I feel like it would have been a lot nicer for someone to sit down with me and talk about it too.” [Youth 4]: “I liked how she went into depth of explaining it and my fifth-grade self didn't appreciate that enough. But now, my eight-grade self understands better.” [Youth 9]: “Nothing really stressful was happening at that time. If I did have something super stressful happening, I would've felt uncomfortable revealing what it was, especially in front of parents… I think she could have told my family to step outside to talk to me.” [Youth 10]: “My doctor was straight to the point… Iwas honestly scared of her… be nice and understanding of how kids must be feeling at the time of diagnosis.” [Parent 9]: “I think having a sheet or overview of diagnostic criteria and treatment would have been nice.”
4. Parents' and youths' perspective on the role of mental health in FS was very heterogeneous, yet they wanted concrete treatment plans including access to behavioral therapy, although reported several barriers.
a. Parents’/youths’ discussion of mental health	[Parent 8]: “That [asking about mental health] made me feel good. It was more personalized, it made me seem like she really cared about her.” [Parent 2]: “It helps communication go a lot better…clue them into what stressors are going on in people's lives.”
b. Both parents/youth wanting concrete next steps after diagnosis	[Parent 9]: “Seeing him more than one time to understand where he is and who he is.” [Parent 5]: “Give a little more information about how it may or may not affect your daily life, what you should do if you start to going into an episode.” [Parent 6]: “…maybe suggesting there's a support group or this is a place that has a lot of information that could be helpful for families. Just so I know where to start to help figure it out.” [Youth 10]: “Just if there was a website that I could join or a group of people that would help each other out.”
c. Barriers to treatment (behavioral therapy) referrals	[Parent 3]: “The one thing I didn't like is there was a long wait for her get into cognitive behavioral therapy.” [Parent 10]: “They said, “she needed therapy, but then nobody wanted to take her…” [Parent 9]: “Giving appropriate list of referrals for therapists. There wasn't a lot of guidance in how to manage it… but when I started digging in, I found different resources and then we started working on therapy.”
5. Youths and parents wanted practical guidance including plans for school and how to respond to FS in all settings.	[Parent 1]: “Having some written materials can be helpful because a lot of things can be talked about very quickly and can be difficult to remember afterwards.” [Youth 1]: “…probably having some type of resource, pamphlet, on what is a non-epileptic event or something basic…” [Parent 5]: “I think they should've definitely focused on how he felt about it, what he needed to do and what he would need for school to help him navigate this way through this.” [Parent 7]: “I think having something that might be an overview of diagnostic criteria, what this means for treatment and next steps, would have been nice.” [Parent 6]: “I don't think there's enough information out there for our schools… I guess having more resources for what the kids are experiencing.” “What should I do specifically or tell the school to do… we talked about to make sure he is in a safe place.” [Parent 4]: “Notifying her school staff members and her teachers, so we can setup a plan to when she has an episode.” [Parent 2]: “What we needed to do about her being in school. Can she lead a normal life? Can she drive? Can she still do sports?” [Youth 2]: “Make sure they know if driving is going to be affected by it because that was one of my biggest concerns that I wasn't gonna be able to drive.”

Abbreviation:

CBiT = Cognitive behavioral-informed therapy