Table 3. Themes, frequencies, and illustrative quotes.
| Theme or Subtheme | Frequency | Illustrative Quotes |
|---|---|---|
| Socio-environmental/organizational Level | ||
| Insurance | 31 | • “The co-pays, it gets to be quite difficult especially whenever you have as many appointments as we have. I mean we may have as many as three to four appointments a month” (Part. 9) • “I know the doctor has said if you start to feel bad what you can do is double up on the morphine. So, I go, and I give them a prescription and they give me a months’ worth of morphine. So, if it’s the 18th and I’m starting to feel bad and I need to double up, then I’m going to run out before the next one comes, and the insurance companies won’t fill it until it’s the 30th again unless I’m in the hospital.” (Part. 26) • “My medical expenses are very high at times and I’m on my family’s insurance plans, so if our insurance isn’t covering, or is choosing not to cover something then it’ll get like sent to collections and then we’ll get lots of calls about it. And that’s definitely something that we’re trying to figure out how to handle because there’s not very much advocacy, in terms of like teaching people how to handle it or handling it for them.” (Part. 37) |
| Transportation | 30 | • “Well, I don’t have a car, so the only real barrier is the distance from here to [the clinic]. My mother has to drive me, and we have to really plan that because of her schedule and stuff so that’s really the only barrier.” (Part. 35) • “When you don’t have your own transportation because relying on people for rides is a headache or if you don’t have money to get on the bus it’s a headache. So, it’s like when you have doctor’s appointments and you can’t get there, it’s like you got a bad face because you didn’t come to your appointments.” (Part.12) |
| Systems Roadblocks and Administrative Barriers | 24 | • “I think one of the biggest challenges is that the more frequent appointments that I have, I don’t get calls for those. So, I have to try to, you know, remember to keep up with those and the times. I have requested to have the calls; I don’t get it. The MyChart system is a good system, but I’m not able to get into it and I’ve told people about it, but I still haven’t received any help for it.” (Part. 13) • “The only drawback was being able to reach out if I was going through a crisis. It was kinda hard to contact them (the clinic). When you call it was more of an answering machine, and a lot of times if that was a Friday, you wouldn’t get a call back of course until Monday, and by that time the crisis is about over.” (Part. 29) • “There’s a bunch of going and beating around the bush and not being able to schedule an appointment in a range where you can see a doctor in at least a day, the next day, or even the day after that. I know some people have to schedule appointments, but they won’t be able to get an appointment for two or three weeks out.” (Part. 33) |
| Access to Care: Clinic Availability | 16 | • “I really didn’t have a steady doctor because it’s so hard to find a doctor who will treat sickle cell patients after they turn 18.” (Part. 5) • “I’ve called several (doctors) and one retired and another left the area and then another never returned my call so, and I called several times and didn’t get anything back, so I don’t really know what happened but with the other things going on I kind of you know, that just kind of stalled.” (Part. 9) • “I was able to kind of find one (doctor) that accepted my Medicaid cause otherwise a lot of times some of those places don’t accept certain Medicaid.” (Part. 25) |
| Access to Care: Poor Care Coordination | 15 | • “I wish I had one doctor for everything like instead of going and seeing one doctor for this and one doctor for that and they all tell me different things.” (Part. 12) • “The primary doctor doesn’t communicate to the sickle cell doctor and it’s hard because sometimes it’s through emails and sometimes it’s lost in translation. It would be nice if sometimes they could have joint clinics, joint clinics for the primary care doctor and the hematologist specialist doctor to see the patient at the same time and they can network and talk through what problem they’re having.” (Part. 39) |
| Access to Care: Service Limitations | 12 | • “He (the doctor) was okay. He was more about getting the pain under control at that moment and not the long-term solution for it, so it was just a bunch of medicine taking with him instead of trying to get to the actual solution.” (Part. 27) • “I think the only differences (when seeing a only a pediatrician and not a hematologist) was not being able to come and get pain management, I wasn’t able to do that. I had to go to the emergency room whenever I was in pain.” (Part. 24) • “The emphasis is most definitely on medication…your main thing is this, don’t forget you have to get your prescription, you have to come get your blood transfusions, like–and I also can’t really talk to you about holistic care cause that’s not my specialty.” (Part. 37) |
| Access to Care: Provider/Clinic Refusal | 11 | • “He was a wonderful doctor; however, he wanted to concentrate more on his oncology patients. He was slowly getting rid of his sickle cell patients. He felt like he could not treat me to the level in which I needed to be treated with his sickle cell patients.” (Part. 5) • “If you live in a city where they don’t have a clinic that specializes in sickle cell and you’re just trying to find a hematologist, I found that they are hesitant to take on sickle cell patients. They’ll typically say no you need to see this specific hematologist, go to this specific institution, this specific clinic. And I’ve even had one clinic go so far as to tell me the reason that they do that is because they don’t want to manage the medication.” (Part. 36) |
| Provider Level | ||
| Provider Inexperience and Lack of Training | 23 | • “Knowing about sickle cell and knowing how to treat it isn’t a very common thing, surprisingly. When you go to a place that doesn’t have great sickle cell care, you’re not going to be seen in the same way that you would be seen at a place that does.” (Part. 37) • “I don’t have a primary care physician. I’ve been looking for one, but I think the biggest barrier is trying to speak with the primary care doctor well enough to see if they know enough about sickle cell that they can actually be my primary care physician.” (Part. 13) • “If I go to like a primary care doctor, she barely understood what sickle cell was and all that and not understand, like, if I needed pain medicine, she was very hesitant to give it to me and it’s very hard.” (Part. 34) |
| Provider-Patient Relationship | 23 | • “Ever since I’ve switched to adult hematology, I have yet to establish like any type of close relationships with the doctors. Really, essentially, you treat may care, you know, and you manage my medication, and monitor my levels to make sure I’m not going too far in either direction. And that’s pretty much been it.” (Part. 36) • “You can tell when a person is very passionate about something and when they’re not and they just didn’t seem like they were passionate about it. It was just like, “Well, here. Take this. Here, take that.” “What am I taking it for?” They couldn’t even tell me that.” (Part. 9) • “I felt like they didn’t really understand sickle cell. They probably just got a class on it when they were in college, but the way they were acting, it felt like they didn’t really understand it, know it, probably never had a family member with it to know what it’s like. So, it felt like it was a new relationship every time I went in. It wasn’t like I’ve been seeing this patient for a year and a half.” (Part. 25) |
| Lack of Appreciation of SCD Knowledge | 19 | • “They (healthcare providers) should be trained better and let the patient have a say-so because the patient knows what he needs…This is what I need. I know it. I’ve been through this 100 times. I know.” (Part. 21) • “I can’t stand doctors who have this idea and they’re not going to listen to the patient. No matter what you say, they’re going to do what they’re going to do. We know what’s going on with our bodies. We know how long it takes for us–I mean I can’t stand it when a doctor tells me, “oh, a sickle cell crisis lasts this long and then it’s over.” I’m like, it’s not every patient is the same. I know that.” (Part. 35) • “The only thing I think that don’t work is when the doctors think they know more–they think they know more about me than I do. Not even being that they know more about sickle cell than me, but they think they know more about me than I know about myself. That’s the only thing that really irritates me.” (Part. 41) |
| Lack of Trust | 17 | • “I know it’s chronic pain, but I know my body and it’s worse when something’s wrong. And some people just don’t listen. So, it makes me frustrated and angry.” (Part. 2) • “My relationship (with a previous provider) wasn’t as good as it is here. I felt like I couldn’t really talk to them without them judging me. I felt like they really didn’t understand sickle cell.” (Part. 4) • “My issue is more of a trust factor. I don’t like doctors who just assume…I don’t want nobody putting me, just because I have sickle cell, in the same bracket as people with sickle cell. I mean, I know I have sickle cell; I’m aware I have sickle cell, but we’re all different and we all, you know, respond differently.” (Part. 11) |
| Treated Differently | 14 | • “They claim that I missed 3 appointments and so they had to release me. I felt like that was false. I actually felt like the hematologist also works for cancer patients…And I felt like, I’m just going to be honest, they make more money off the people with cancer than sickle cell people because we mostly have Medicaid.” (Part. 4) • “The stigmatism that haunts sickle cell patients about the opioids and morphine. You know, that’s a hot topic now all over the United States but what it really is, is just really people’s personal opinions. You see, our society accepts and treats cancer patients differently. They can’t see that sickle cell disease is something you’re born with. I’d say their pain is less than ours. However, they get better treatment, pain management than sickle cell patients.” (Part. 5) • “How come people with sickle cell dying quicker than people with cancer? You don’t want none of them to die, but ask a lot of people, “Do you know what sickle cell is?” and they be like, “What is that?” We can’t even get a little commercial on the TV. It hurts, in more than one way. It’s like, dang, they don’t know nothing about sickle cell at all.” (Part. 9) |
| Family/Interpersonal Level | ||
| Social, Family, and Caregiver Support: Overwhelmed Supports | 13 | • “I do manage it, but sometimes it’s very difficult to manage it on my own. Sometimes after going to the ER and you’re admitted into the hospital and discharged after two to three weeks of being in the hospital, you go home, and you don’t have the energy to do anything. And coupled for some of us that live alone and don’t have family around, though even if you do have family, they still have to go to work or responsibilities to take care of not you and you alone. It’s so hard to get around and do stuff that you need to do, like laundry, sometimes even taking a shower or making a quick meal for yourself and all that.” (Part. 39) • “I don’t really have friends and family. I just don’t. They don’t support. The only come to me when they need something.” (Part. 2) • “It was just me and my daughter. You can’t take them with you, I mean you can, but it’s like, not the ideal thing to do because for one, it distracts you off of maybe some of the questions you were going to come in and ask because you’re making sure your child is not tearing up the place.” (Part. 25) |
| Social Family and Caregiver Support: Competing Life Demands | 11 | • “So much is going on and I just remember, you know, my appointment’s coming up, I need to schedule it. It may seem easy to go ahead and schedule an appointment, but it’s not always that easy.” (Part. 4) • “Once I’ve been in the emergency room, I don’t want to come to the doctor’s office and there’s other things I have to do. People with sickle cell have a life. I have a daughter, a job, school, so it’s kind of like, do I want to take this two hours to go up here to tell her (the provider) that I went to the emergency room or do I want to take this two hours to do something else?” (Part. 13) |
| Individual Level | ||
| Disease-Specific Barriers | 16 | • “Pain, and fatigue, tiredness, and I thought that I was going to be able to make it to Wednesday. That was my transfusion day, but every day started feeling like an eternity. I don’t think I could wait that long. Wednesday is kid of a long time, and the last time I decided to wait, the pain probably actually forced me to go to the ER.” (Part. 21) • “If I’ve missed an appointment, it’s because of like being sick or something. Not necessarily because of not being able to physically get there.” (Part. 23) • “I know people are getting diagnosed, and they’re handed a pamphlet about sickle cell disease, and they’re kind of left to navigate this complex disease on their own.” (Part. 44) |
| Lack of Knowledge in Self-Management | 4 | • “When I first got on the medicine, I wasn’t necessarily taking it how I should’ve been. I was young at that age, and I was going through a lot of insecurities about the whole sickle cell and stuff.” (Part. 7) • “I have a late onset, so I didn’t grow up with sickle cell. I had sickle cell in me, but I didn’t get any of the symptoms until I was like 28 and so a lot of the knowledge that everybody has gathered through their years, I don’t have. So, I think when I see someone and they know I have sickle cell, they assume my level of knowledge is about the same or my experience is the same as others but it’s totally different.” (Part. 43) |