Background
Methods
Participants
School | Parent focus groups | Parent key informant interviews | School nurse key informant interviews | Parent surveys | % minority students | % low-income students* |
---|---|---|---|---|---|---|
School A
| X | X | X | 36.3% | 17.5% | |
School B
| X | 99.8% | 93.4% | |||
School C
| X | X | 47.8% | 10.1% | ||
School D
| X | X | X | 94.7% | 96.2% | |
School E
| X | X | X | 98.2% | 98.5% | |
School F
| 94.4% | 96.5% | ||||
School G
| X | X | X | X | 72.6% | 52.8% |
School H
| X | X | X | 36.9% | 36.3% | |
School I
| X | X | X | 79.0% | 51.0% | |
School J
| 98.4% | 93.0% | ||||
District
| N/A | N/A | N/A | N/A | 90.7% | 85.0% |
Procedure
Domain | Focus groups | Parent interviews | Nurse interviews |
---|---|---|---|
Food allergy reporting
| Let’s go around and share personal experiences with chronic disease verification at CPS. | Please share your experience with chronic disease reporting and verification at your child’s school? | What process does your school use to identify students with chronic conditions? |
Have you all seen this Student Medical Information form? | Did you receive this Student Medical Information form from the school? | How does your school use the Student Medical Information form? | |
Do you have any suggestions for improving the form? | Did you fill this form out and return it to the school? | How can this process be improved? | |
Physician verification
| Did everyone provide their school with a signed physician’s diagnosis of their child’s chronic disease? | Did you get physician verification of your child’s chronic condition? | How do you go about getting physician verification from parents/caregivers? |
Has anyone encountered barriers when trying to verify your child’s condition? | Did you face any problems when trying to provide this information to the school? | What are your barriers to getting chronic disease verification? | |
Access to medication
| Who has supplied their child’s school with chronic disease medication? | Does your child have his/her chronic disease medication at school? | Can you share your experiences related to medication access? |
What are some ways that barriers can be removed so all children have access to their medication at school? | Did you encounter any barriers at school that made it difficult to provide your child’s medication? | Do all students at your school have the prescribed medication the need to manage their condition? | |
Do your children carry their medication on them? | Does your child always have his/her medication with him/her? | Do you have any suggestions for improving this process? | |
Action plan development
| Has anyone obtained a 504 Plan for their child? | Did you set up a 504 Plan for your child? | What is your experience with setting up 504 Plans for your food allergic students? |
Did you encounter any barriers during this process? How can those barriers be reduced? | What were some of the barriers you faced when trying to set up an action plan? | What works well and what is challenging about this system? | |
Communication
| What are the ways in which your children’s school sends home health-related information? | How do you typically receive health-related information from your child’s school? | What is communication like between you and the students’ parents/caregivers? |
How would you like to receive information from the school? | Is this the most convenient method for you? What would be most preferable? | How can communication be improved? | |
Survey development
| Do these questions capture the information we’re looking to collect? | Are these questions relevant to you as a parent? | N/A |
Is anything on this survey confusing? | Are we missing anything? Should anything be removed | N/A |
Instruments
Data analysis
Results
Parent focus groups & interviews
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." |
Lack of parental process knowledge
Limited communication from schools
Insufficient availability of school nurses
Nurse interviews
Lack of parental process knowledge
Insufficient resources and time constraints
Parent surveys
Variable | Frequency, n (%) | ||
---|---|---|---|
All parents | Parents who completed process | Parents who did not complete process | |
N = 72 | N = 38 | N = 34 | |
Age
| |||
≤ 44 | 57 (79.2%) | 30 (78.9%) | 27 (79.4%) |
≥ 45 | 15 (20.8%) | 8 (21.1%) | 7 (20.6%) |
Gender
| |||
Male | 6 (8.3%) | 3 (7.9%) | 3 (8.8%) |
Female | 66 (91.7%) | 35 (92.1%) | 31 (91.2%) |
Race/Ethnicity
| |||
African American | 13 (18.1%) | 7 (18.4%) | 6 (17.6%) |
Hispanic/Latino | 25 (34.7%) | 11 (28.9%) | 14 (41.2%) |
White/Other | 34 (47.2%) | 20 (52.6%) | 14 (41.2%) |
Education level*
| |||
High school or less | 23 (31.9%) | 14 (36.8%) | 9 (26.5%) |
Some college | 18 (25.0%) | 9 (23.7%) | 9 (26.5%) |
Graduate | 31 (43.1%) | 15 (39.5%) | 16 (47.1%) |
Household income**
| |||
< $50,000 | 38 (52.8%) | 20 (52.6%) | 18 (52.9%) |
> $50,000 | 34 (47.2%) | 18 (47.4%) | 16 (47.1%) |
Child insurance
| |||
Private | 32 (44.4%) | 15 (39.5%) | 17 (50.0%) |
Public or none | 40 (55.6%) | 23 (60.5%) | 17 (50.0%) |
Process knowledge
Variable | Frequency, n (%) | ||
---|---|---|---|
All parents | Parents who completed process | Parents who did not complete process | |
N = 72 | N = 38 | N = 34 | |
Know about special accommodations**
| |||
Yes | 36 (50.0%) | 27 (71.1%) | 9 (26.5%) |
No | 36 (50.0%) | 11 (28.9%) | 25 (73.5%) |
Know about 504/IEP plans**
| |||
Yes | 36 (50.0%) | 28 (73.7%) | 8 (23.5%) |
No | 36 (50.0%) | 10 (26.3%) | 26 (76.5%) |
Know about physician verification**
| |||
Yes | 53 (73.6%) | 37 (97.4%) | 16 (47.1%) |
No | 19 (26.4%) | 1 (2.6%) | 18 (52.9%) |
know who school nurse is**
| |||
Yes | 42 (58.3%) | 33 (86.8%) | 9 (26.5%) |
No | 30 (41.7%) | 5 (13.2%) | 25 (73.5%) |
Variable | Odds ratio [95% CI]* | P value |
---|---|---|
Know about special accommodations | 1.71 [0.38 – 7.70] | 0.485 |
Know about 504/IEP plans | 3.59 [0.85 – 15.11] | 0.082 |
Know about physician verification | 13.45 [1.25 – 144.85] | 0.032 |
Know who school nurse is | 9.70 [2.36 – 39.75] | 0.002 |