Table 1 Themes and Representative Quotes from Qualitative Interviews with Patients with Sickle Cell Disease

From: Improving Care for Patients with Sickle Cell Disease: a Qualitative Study of Hospitalized Sickle Cell Patients

ThemesQuotes
Patient/provider relationship“Sometimes they do not really want to listen… on some occasions I’m running into those (doctors) who like, ‘I do not care what you are talking about, you ain’t going to school for this, I did.’”
“They judge and they [kind] of pass me around to other doctors, and it feels bad to the point where I’ve actually left the hospital.”
Readmissions“I felt half way ready but…hours and hours before my discharge, my body just showed me signs that, yeah, I wasn’t ready…”
“I was discharged a little too early. I was still in a lot of pain so when I got home and was taking my meds and they wasn’t helping. I could not move so I’m still sitting there like I am here.”
Psychosocial factors“It hurts me cause it makes me go in pain and I have certain feelings too…nobody give a care how I feel. Nobody cares.”
“As a doctor, you gotta see a lot. You see some unfortunate things. It’s gotta be tough but from the other side, it’s tough going through what I’m going through as well so, you gotta have some compassion.”
Healthcare system factors“Well they [PCP] hold everything together. You gotta have a good one cause they know about the sickle cell, like they really know about it but at the same time you know about everything else too so they pretty much hold me together like glue.”
“Just like with any disease, you gotta have those who are passionate about it. Like you got people out here who really want to cure cancer, like they really believe they can. That’s awesome because one day they might…You gotta have somebody that wants to rid the world of sickle cell in the right way.”