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TABLE 6

Selection of Representative Parent Quotes on Engaging in ADHD Treatment Stage 4: Communication and Navigation (“Four More Villages”)

SubcategoryCommunication and Navigation Quotes (Representative Selection)Parent and Child Information
Need for help “It’s not easy to deal with it. It takes a village to raise a child. But a child with ADHD needs three or four more villages, and…it’s life consuming.” 42-y-old mother of a 10-y-old boy 
 “Myself and his behavioral health in school and Home For Little Wonderers. All of them. His primary care. Everybody that he’s been involved with, we had a meeting for it and made a decision. Like, speech therapy, everybody.” 44-y-old mother of a 10-y-old boy 
 “Nothing has been negative at all because I see they’re really working hard. They’re very concerned. They listen to me. They make me feel comfortable that they’re there for them and me at the same time, but it’s up to the child.” 62-y-old mother of a 10-y-old girl 
Difficulty accessing care “The main barrier is that a lot of time you feel like your hands are tied because you don’t know what else to do - where else to look, where to find more help, what help I should be looking for.” 32-y-old mother of an 8-y-old boy 
 “It took me 3 or 4 months to finally get an appointment. The pediatrician doesn’t prescribe medicine, though; the psychiatrist does, so you have to wait for them to give it to you.” 34-y-old mother of a 10-y-old boy 
 “In the research I did on the Internet, there are tutoring that you have to pay for and they are quite expensive and I can’t afford them. That’s the reason why…he’s not receiving everything, because I haven’t yet found a place that offers them at an affordable price or for free.” 32-y-old mother of an 8-y-old boy 
 “Sometimes I don’t have the funds to take her to her appointment or to go get the medication for her.” 43-y-old mother of an 8-y-old girl 
Difficulty coordinating care “It’s hard because at times I have to rush to come and take her from school, and take her for her appointment and then rush to work and I have to get work late.” 39-y-old mother of an 8-y-old girl 
 “It was hard. It was kind of hectic because she had so many services in place and I was overwhelmed…I felt like giving up. It was just too much on me.” 43-y-old mother of an 8-y-old girl 
 “Scheduling. Scheduling. Because I have another child. There’s three of us. And I have to…I’m the sole provider for all three of us. And I live in a shelter which only lets you do appointments on Tuesdays and Thursdays.” 40-y-old mother of a 3-y-old girl 
 “Transportation was our biggest problem. A lot of these places were far. Not even that, getting to the doctors’ appointments, taking them out of school. We had to learn at an early age, ugh me too, that we had to choose times that weren’t interrupting school or things that he liked.” 34-y-old mother of a 14-y-old boy 
 “If you don’t have money to pay for special programs, then you can’t do anything. And if you don’t have money to have a car to transport your kid to those programs that you can find for free, then you are lost.” 42-y-old mother of a 10-y-old boy 
 “I’m just maxed out sometimes. You know, but the pharmacy, they would tell me, ‘Oh, it’s not gone through, they’re not going to pay for it.’ Stuff like that. And I had to wait in the car, call them and ask what’s going on, and go back and forth with the insurance.” 40-y-old mother of an 8-y-old boy 
 “For example, when they receive psychological and psychiatric therapy, the fact that both parties are not communicating is a very big conflict. I had a very bad experience where I had two different diagnoses and, instead of communicating with each other, they would try and make their reasoning sound better than the other one.… It was frustrating.” 40-y-old mother of a 17-y-old boy 
Importance of communication with and between providers “All the questions that I have asked, the psychiatrist…helped me well with understanding a lot about her diagnosis and how the medicine benefits are, and what the medicine does for her.” 28-y-old mother of a 6-y-old girl 
 “Also, his primary care doctor, she is great. I can shoot her a message…and she calls me. If I have any issues they are great with communicating.” 30-y-old mother of a 12-y-old boy 
 “Myself and his behavioral health in school and [therapist]. All of them. His primary care. Everybody that he’s been involved with, we had a meeting for it and made a decision. Like, speech therapy, everybody. Like, before he got his IEP, and then we all made an agreement.” 44-y-old mother of a 10-y-old boy 
 “They helped me with the IEP and getting all his papers together. His doctors help with helping him with the psychiatrist and making all appointments and the medication and all that stuff. So, we were all trying to be a team player in this thing. I guess everything worked out.” 51-y-old mother of a 17-y-old boy 
SubcategoryCommunication and Navigation Quotes (Representative Selection)Parent and Child Information
Need for help “It’s not easy to deal with it. It takes a village to raise a child. But a child with ADHD needs three or four more villages, and…it’s life consuming.” 42-y-old mother of a 10-y-old boy 
 “Myself and his behavioral health in school and Home For Little Wonderers. All of them. His primary care. Everybody that he’s been involved with, we had a meeting for it and made a decision. Like, speech therapy, everybody.” 44-y-old mother of a 10-y-old boy 
 “Nothing has been negative at all because I see they’re really working hard. They’re very concerned. They listen to me. They make me feel comfortable that they’re there for them and me at the same time, but it’s up to the child.” 62-y-old mother of a 10-y-old girl 
Difficulty accessing care “The main barrier is that a lot of time you feel like your hands are tied because you don’t know what else to do - where else to look, where to find more help, what help I should be looking for.” 32-y-old mother of an 8-y-old boy 
 “It took me 3 or 4 months to finally get an appointment. The pediatrician doesn’t prescribe medicine, though; the psychiatrist does, so you have to wait for them to give it to you.” 34-y-old mother of a 10-y-old boy 
 “In the research I did on the Internet, there are tutoring that you have to pay for and they are quite expensive and I can’t afford them. That’s the reason why…he’s not receiving everything, because I haven’t yet found a place that offers them at an affordable price or for free.” 32-y-old mother of an 8-y-old boy 
 “Sometimes I don’t have the funds to take her to her appointment or to go get the medication for her.” 43-y-old mother of an 8-y-old girl 
Difficulty coordinating care “It’s hard because at times I have to rush to come and take her from school, and take her for her appointment and then rush to work and I have to get work late.” 39-y-old mother of an 8-y-old girl 
 “It was hard. It was kind of hectic because she had so many services in place and I was overwhelmed…I felt like giving up. It was just too much on me.” 43-y-old mother of an 8-y-old girl 
 “Scheduling. Scheduling. Because I have another child. There’s three of us. And I have to…I’m the sole provider for all three of us. And I live in a shelter which only lets you do appointments on Tuesdays and Thursdays.” 40-y-old mother of a 3-y-old girl 
 “Transportation was our biggest problem. A lot of these places were far. Not even that, getting to the doctors’ appointments, taking them out of school. We had to learn at an early age, ugh me too, that we had to choose times that weren’t interrupting school or things that he liked.” 34-y-old mother of a 14-y-old boy 
 “If you don’t have money to pay for special programs, then you can’t do anything. And if you don’t have money to have a car to transport your kid to those programs that you can find for free, then you are lost.” 42-y-old mother of a 10-y-old boy 
 “I’m just maxed out sometimes. You know, but the pharmacy, they would tell me, ‘Oh, it’s not gone through, they’re not going to pay for it.’ Stuff like that. And I had to wait in the car, call them and ask what’s going on, and go back and forth with the insurance.” 40-y-old mother of an 8-y-old boy 
 “For example, when they receive psychological and psychiatric therapy, the fact that both parties are not communicating is a very big conflict. I had a very bad experience where I had two different diagnoses and, instead of communicating with each other, they would try and make their reasoning sound better than the other one.… It was frustrating.” 40-y-old mother of a 17-y-old boy 
Importance of communication with and between providers “All the questions that I have asked, the psychiatrist…helped me well with understanding a lot about her diagnosis and how the medicine benefits are, and what the medicine does for her.” 28-y-old mother of a 6-y-old girl 
 “Also, his primary care doctor, she is great. I can shoot her a message…and she calls me. If I have any issues they are great with communicating.” 30-y-old mother of a 12-y-old boy 
 “Myself and his behavioral health in school and [therapist]. All of them. His primary care. Everybody that he’s been involved with, we had a meeting for it and made a decision. Like, speech therapy, everybody. Like, before he got his IEP, and then we all made an agreement.” 44-y-old mother of a 10-y-old boy 
 “They helped me with the IEP and getting all his papers together. His doctors help with helping him with the psychiatrist and making all appointments and the medication and all that stuff. So, we were all trying to be a team player in this thing. I guess everything worked out.” 51-y-old mother of a 17-y-old boy 

IEP, individual education plan.

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