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Table 3 Selected parent and school nurse quotes

From: Identifying barriers to chronic disease reporting in Chicago Public Schools: a mixed-methods approach

Theme Quotation
Parents
Lack of parental knowledge "Maybe there could be workshops for parents, or places we could go and find out more information. Whether it’s something to have at the beginning of the year or [have] over the summer for us to go and find out what works best. Because if you don’t know that your child needs something else, you’re going to just scrape by with what you have."
  "If you’re a parent who suspects that your kid has asthma, allergy or a chronic illness, what do you do? Some parents don’t know."
  "You know, unfortunately, we are handed these papers [but] no one is really consulting us as to what they mean."
Unsatisfactory communication from schools "I guess the overall experience will go back to communication from the school in the beginning. It needs to be really clear: here is what you need to know before August…what your rights are. This is what you really need to think about!"
  "We don’t know who to go to if we do have any issues. I have been fortunate enough where my children have been healthy and doing fine, but I can’t take that for granted at all."
  "I don’t know enough. I feel like we’ve come so far from where we used to be…but yet, there’s still so much that’s not being communicated to parents. We should know exactly what’s going on in the cafeteria…we should know who’s watching [our children]."
  "It seems like it needs to be clear as day on the website. For me, as a new parent, it wasn’t clear where to click on the website to get [health forms]. So I still don’t know if I filled out the correct forms or not."
Limited school nurse availability "Maybe [individual schools] can have something that says, ‘This is your school nurse.’ I know a lot of people don’t even know who the school nurse is. Like me…I didn’t know who the school nurse was here and what day she’s available. Then, if you have any health concerns, you know who to direct those to."
  "There’s no question that there needs to be a nurse here. I don’t understand why there [are] part time nurses and always less than needed. In a system like this, it doesn’t make sense to me."
Success of parent advocates "As a parent going through this system, you don’t wait for anything. If you’re not the advocate, nothing will happen."
  "It would also be important for parents to know their rights about what can be offered to them and to their children. Coming in, [I] was aware and was ready…but what about the other parents? There’s lots of them, I’m sure."
  "One thing I would like to mention is I was able to have my papers ready by the first day of school. That was because I did my own research through different parent forums through the city and CPS parent forums. I read information and then I specifically had asked for forms during registration."
School nurses
Lack of parental knowledge "One thing that I’ve often wondered is how aware the parents are. I think the parents need to be more educated on this stuff because they really are not informed. They have no idea that this kind of thing is happening."
  "Sometimes [parents] do not understand the 504 process, the value of it, or the addition of the medical side of the IEP. When they have an IEP it’s very easy because they have an annual IEP meeting and I will be present. With the 504, they don’t understand why."
Limited nursing resources and time constraints "I don’t have the time to really do the job I would like to do, and that is actually the case in my other two schools as well. We don’t have enough school hours; we have cut back [by] almost half. We have twice as many responsibilities within CPS."
  "I think more nursing hours would help a ton with dealing with 504 s. And I think [what] I mentioned before is [the value of] having a full time person just updating the telephone numbers, the email of parents, etc., so we have current ways to contact parents."
  "I can’t even finalize the meetings or the notes. I simply do not have the time to figure all of that out. So if I ask [a parent] for a meeting and she doesn’t set it up right away, it can be hard to remember."