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Table 3 Health system level barriers: themes and illustrative quotations

From: Missed opportunities for timely diagnosis of pediatric lupus in South Africa: a qualitative study

Theme: Lack of Trained Staff

 Subject 3

“At the day hospital the one nurse…it was like she had some type of attitude with me…when I told her is there any reason you guys can give me why the nose is continuously bleeding. Then she told me to just go and sit in the waiting room…I went to doctor after doctor and nobody could give me an explanation. They didn’t take any bloods, nothing. It’s my child, I know. If I know that there is something wrong with him and for them to ask me how do I know…How can they tell me that when I’ve noticed the changes as a parent? So that’s the system down there.”

 Subject 7

“[After my daughter had a stroke] they discharged us, then we always go each and every week. They took the test. They didn’t say anything [in regards to diagnosis]. They just want to check is she fine. They didn’t even give her any pills or nothing.”

 Subject 12

“[At the day hospital] they asked me to come back because there was not a doctor there…They didn’t actually care about the patient. I took her to the day hospital and the nurse…asked if she was pregnant and sent her out, she did not examine her.”

Theme: Complex Medical System

 Subject 7

“I went the first time and they [nursing staff] said I wouldn’t be called [to be seen.] I went back a few days later and asked to see the social worker.”

 Subject 10

“She had pain in her joints and an earache. They only looked at the earache at that point. So they said it was an infection…two or three days later she couldn’t get out of bed. I didn’t feel like that [respected] because I complained about both things, the joint pain and the earache, and it was sort of like what do you want me to look at first sort of thing. If you take a child to a doctor you like them to see everything.”

 Subject 16

“When we went to see the doctor there and at the time I was pregnant with my other daughter, it was very irritating. I took her to the doctor, they took blood and everything and then they told me I must come to [Children’s hospital] for an appointment.”

 Subject 18

“That is when the doctor said the child is sick and must go to another hospital. They did all the tests. Then they sent her home. They told me whatever comes up bring the child back here…I went to the other GP…to mention about the child having a clotting problem…the GP told me ‘No, we are not going to do anything.”

Theme: Misdiagnosis

 Subject 1

“The GP said to me…it’s an insect bite and she gave me something, not even an antibiotic…then his other foot started swelling. At that stage he couldn’t wear his shoes anymore…I had to take him in and out of the bus because he couldn’t go upstairs. I went to the clinic…she said immediately take the letter up to [Children’s hospital] and she said he must stay at the hospital.”

 Subject 2

“She had a platelet count of 7 and they admitted [her to the] oncology [unit.] One day they tell you one thing, then the next day it’s something else…Every day it was something different for quite some time. It was frustrating.”

 Subject 15

“They put us in an emergency ambulance, because her [hemoglobin] was very low. They saw a specialist in [hometown]. They thought she had Leukemia, a rare cancer of the bone marrow, and then they discovered it wasn’t that. They realized that they had to find another doctor because they were worried that she was going to die so they went to [regional center]. So from there they were referred to see a doctor in Cape Town. She sent us to [the children’s hospital]… and she started getting better.”