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Table 2 Themes and illustrative quote(s)

From: Factors that contribute to disparities in time to acute leukemia diagnosis in young people: an in depth qualitative interview study

Theme

Illustrative Quote(s)

 

Domain #1: Structural Factors

Insurance Disincentives

“We have a high-deductible insurance plan … so that we do tend to be a little slower to get care … I would say that if we had an insurance plan that didn’t kind of penalize us for using it, that we would probably be a little quicker.” [high income, non-Hispanic White parent]

“She didn’t have any kind of medical coverage, so I asked for my bosses to help me out … they told me I was supposed to have the medical coverage from [date] onwards … I took her on the first date.” [low income, uninsured, Spanish speaking, other Hispanic parent]

Difficulty Getting a Timely Appointment

“I normally would have taken him to his pediatrician, but it was just the time of year where they’re so busy there – early January.” [low income, non-Hispanic White parent]

“I took the decision to call the doctor, and they told me that the doctor was busy, that he had a lot of patients.” [low income, uninsured, Spanish speaking, White Hispanic parent]

Initial Site of First Encounter

“Urgent care just felt like they were like, eh, viral syndrome, see you later, call your pediatrician tomorrow.” [middle income, non-Hispanic White parent]

Navigating the Healthcare System

“She had petechiae on her legs… I know what that is, because I have low platelets myself … and so I know that that’s a sign to watch for a problem.” [low income, non-Hispanic White parent]

“I just had asked my doctor to do blood work … I’m like he just doesn’t look right. I don’t know if there’s something brewing … so he ran the blood work for me … it was actually the doctor I work for.” [middle income, non-Hispanic White parent]

 

Domain #2: Variability in Leukemia Presentation

Timing of Symptom Onset

“It was probably like three months that passed, and he just kept complaining about his pain in his stomach and his legs.” [low income, non-Hispanic Black parent]

“I woke up one morning and I just felt really sick, like I needed to take a shower … after I took a shower I was short of breath, and I said that we’re going to the hospital.” [low income, Hispanic Black patient]

Nonspecific Symptoms

“He probably is running a virus. Kids run viruses all the time. It’s December, he probably has something.” [high income, non-Hispanic parent]

Behavioral Changes

“Basically she wasn’t acting like herself … she was very tired, and kinda dozing off in the afternoon, which is so unusual for her.” [high income, non-Hispanic White parent]

Red Flag Symptoms Prompting Medical Attention

“He started to develop petechiae on the upper left side of his face, near the eye, and then, towards the base of his head.” [high income, non-Hispanic White parent]

“A few days later, she started having leg pain episodes again … and she couldn’t even walk with her legs. So I took her to the emergency room.” [low income, other Hispanic, Spanish speaking parent]

Misattribution of Symptoms

“They put it off as being allergies because they would give me medication for allergies and that wasn’t working out … it’s got to be something else. And they said well, it looks like the flu.” [low income, American Indian/Alaskan Native parent]

 

Domain #3: Quality of Interpersonal Interactions

Parental Intuition

“I think a mom has a special – I don’t know, like ability to see things that people don’t see. So I knew that something was wrong with him. It just didn’t seem normal.” [low income, non-Hispanic Black parent]

Tensions around Management Decisions and Testing

“The only thing that I wish – and it wouldn’t have changed anything, like [he] still has leukemia, so the blood work – but it would have just been finding it a little bit sooner and getting started treatments sooner.” [high income, non-Hispanic White parent]

“I think that was just the more frustrating part that I was – I knew something was wrong and I felt like it was wrong and I emphasized that something was wrong and they were just like, oh, it’s okay, everything’s okay, she’s okay.” [low income, Hispanic White parent]

Seeking Additional Care

“I was at urgent care for five or six hours with her. But that was already after a pediatrician’s visit the week before where I felt like there was something wrong.” [middle income, non-Hispanic White parent]

Trust in Provider

“They are who we trust in these situations … this is the third time I’m bringing my daughter back in a month. I just felt like would it have hurt to maybe feel her abdomen one of the first few times we came in to realize … that her liver and spleen were swollen?” [middle income, Hispanic White parent]

“I just feel like something’s wrong. And she said to me without hesitation, if you think something is wrong, you go and you go right away. And she was super supportive and did not at all try to stop me. Encouraged me to go.” [high income, non-Hispanic White parent]

Dismissal and Judgment by Providers

“It was almost like his behavior towards treating a person that is no longer under their care … he just glanced over it like you would a piece of paper.” [low income, non-Hispanic Black parent]

“[I] recall Dr. [name] yelling at me regarding [patient]’s weight loss … Dr. [name] yelled that [I] needed to cook better food for my daughter and that McDonald’s was not adequate nutrition … in reality, because [patient] had such a decreased appetite, [I] wanted her to eat anything and everything that she would in order to gain some weight back.” [low income, Hispanic White parent]

Family Relationships and Home Environment

“There’s a lot of aunts and uncles that have stepped up and have helped me … because we live almost three hours from [the hospital] … she’ll get the kids to school for me, pick them up.” [middle income, non-Hispanic White parent]