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Table 3 Illustrative quotes for barriers & facilitators to mental healthcare for youth with SLE/MCTD

From: Barriers and facilitators for mental healthcare in pediatric lupus and mixed connective tissue disease: a qualitative study of youth and parent perspectives

 1) Stigma
“You see it a lot today with mental health being a bit of a taboo. It’s not really something that people like to talk about… because you think it’ll go away or you’re exaggerating. So it’s not really an easy topic.” 19 y/o female
“I don’t want to disclose who am I when I want to take counseling.” Parent
 2) Fear
“I don’t think I was fully honest, because I was so anxious and nervous…I think it was just my nerves and not wanting to talk about it because it was so scary.” 19 y/o female
 3) Uncertainty about getting help
“And I think it’s probably a beneficial thing, but I wouldn’t even know where to start looking.” Parent
“She wasn’t sharing because she didn’t know what to do. She didn’t know how to get back on target.” Parent
 4) Parental emotional burden
“I didn’t realize until she told me … that she was actually hiding all that stuff … because I think she thought it was too much for me to handle.” Parent
“I think if their social liaisons were able to…provide you with some support groups…the opportunity for yourself to see a therapist or a specialist who can help you counsel your child, I think that would be most beneficial.” Parent
 5) Minimization by medical doctors
“Well, she mainly gave me pamphlets that had sort of deep breathing exercises and while that helped somewhat, what I needed was more therapy and that’s when I started seeing a psychologist for cognitive brain therapy and that was more what I needed, as opposed to meditative exercises.” 18 y/o female
 6) Poor access to mental health professionals
“The difficulty, really, is… the finance, the co-pays are frequent right now.” Parent
“It was difficult…we had to travel [far]…there weren’t any pediatric psychiatrists [nearby].” Parent
“It’s a little further away than I would like it to be due to gas prices” Parent
“We would schedule the next [appointment] based on, of course, my ability to take her because I had to go to work, and we still hadn’t had our own vehicle yet.” Parent
 1) Strong clinician relationship
“I probably would not talk to the primary care just because we don’t have a relationship with him yet. It would start with the rheumatologist.” Parent
 2) Clinician initiative to discuss mental health
“My first rheumatologist…recommended it. Because of what I have, he thought it was stress related. So I, fortunately, didn’t have to bring it up.” 16 y/o male
“He would say teenage girls have a lot going on…sometimes you can’t say things to mom…it helps to have that unbiased sounding board to just knock things off of.” Parent
 3) Clinician sincerity
“It’s like you could tell that they really cared about your well-being. Sometimes you can tell if it’s more protocol than they really care, but it seemed like they genuinely cared about how you felt so that they could treat you better. And it just felt good.” 12 y/o female
 4) Normalization of mental health issues
“Asking these things and thinking about them, and it should just be a normal thing. It shouldn’t be sort of weird or lie or–just part of routine.” Parent
“It’s after that first initial time, mentioning it, that it’s like not a problem, it’s an easy topic to talk about. Especially when they’re willing to help.” 18 y/o female
“You don’t have to be crazy or extremely naughty to have to use a therapist…it’s good to make it seem perfectly acceptable and fine and normal to talk to somebody in the mental health field. Because the last thing you want is a kid getting more and more depressed and keeping it in, not being able to have somebody to talk to.” Parent