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Table 2 Themes and Associated Caregiver Quotes

From: Caregiver experiences with accessing sickle cell care and the use of telemedicine

Codes/Themes Quotes
Caregiver Effects Grief/acceptance of diagnosis (n = 9) “It first started out, it was very, very difficult to grasp like knowing that my kid would have to be on medicine for the rest of her life”
“I was young, so it was very difficult for me because I did have my son a year before her when she did not have sickle cell. So, I was a little bit confused as to how because, like I said, I was young at the time, so I didn’t know as much as I know now.”
Burden/stress (n = 12) “So it was just a lot to grasp and learn within the first year I would say... as far as making sure that like I said doing everything that I’m supposed to be doing and it was just a lot to take on with a newborn and having two other kids”
“As I’ve gotten older, it has gotten manageable, but it is extremely overwhelming sometimes, taken the circumstances. It gets overwhelming at times.”
“I have [chronic medical condition]. So, when I’m sick and she’s sick at the same time, it is a lot…I don’t have anybody else to really take of her. So, sometimes I have to cut my visits short…to get the care she needs, as well.”
Caregiver’s mental health (n = 6) “I would say I was young when I had [the patient], and it was really difficult for me at times. So, my mom would tell me you have to build yourself up. You have to be able to not cry and let her see you cry. You have to be strong. And so now, as I’m older, I have learned to suppress my emotions around her..., but on the inside you could really be breaking down.”
Guilt/responsibility (n = 5) “I was really sad because I know that he’s going to have to deal with it for the rest of his life, and there’s nothing that I can really do, and then I felt kind of responsible for it because I didn’t know that I had the trait, and I didn’t know that his father had the trait, so I kind of felt responsible as to like it was my fault that my son has this disease.”
Barriers to Access Caregiver Level Financial/Missing work (n = 11) “It’s hard. I am a single parent…on my own, so I’ve lost jobs because of it because sometimes he’s sick, and me having to call off so much. So, I mean, it’s financially hard, but I mean, I wouldn’t, I mean, if I had to do it all over again I wouldn’t change anything. I love my son.”
“…[My child] just spent…weeks in the hospital, and I was really worried because I just started a new job... there have been times in the past where I’ve lost jobs or gotten written up because I was at the hospital.”
Transportation (n = 6) “When we first found out [about diagnosis] I didn’t have [transportation] so I had to depend on people or even call like Medicaid to get a ride back and forth …[a]nd then it also made it difficult back.”
Missing school (n = 11) “It can be [difficult] because he has to miss school on top of the days that he is sick, so he misses a lot of school.”
System Level Location (n = 12) “The fact that you’re about an hour and a half away would be the biggest obstacle for us but we just do it.”
“The distance gets a little much, like in trying to, our family doesn’t live around here, and so with our daughter, it’s always trying to find a place for her to go.”
Accessibility (n = 7) “It’s always hard when I take him to the local emergency room, and then they decide they’re not really equipped to deal with him because there’s no hematologist, and then he has to be transferred to the hospital that’s 45 or 50 min away. And then, of course, I have to drive there just so when we’re released, we can have a way home. [Even though] I would want to be in the ambulance with my son just because I’m always worried, and I don’t want him to feel like he’s alone and I’m not there.”
Frequency of visits (n = 4) “I believe when [my child] first came home or the first couple of years he was home, I think he had about six appointments or seven appointments in 1 month each month. So, it was really, really tough to even have my own life and try to work or do anything or something else with the other kids.”
Healthcare Providers Level Provider Knowledge/Bias (n = 9) “The first time I ever took my son to the hospital the ER doctor told me that my son couldn’t have sickle cell because I was white.”
“So if they’re to the point where they’re going to the ER and they are going to have to have meds, [and] more doctors realize [d] that, and more people were educated on sickle cell …, they would understand that they’re not there seeking drugs.”
Barrier or Facilitator Provider to patient communication (n = 10) “And I just felt like at that time they just looked at me as a young mother and didn’t look at me as [the patient]‘s advocate. And then they didn’t want to listen to me when I told them that I knew my son”
“They communicated with me. They sent me little packets on sickle cell disease, what to expect. It was a lot of stuff that I did receive from the Sickle Cell Association when I did find out she did have sickle cell.”
Facilitators to Access Healthcare system support Convenience (n = 14) “Because hematology is not the only specialist we see … They try to make it a lot easier to not have to do the back and forth. So they try to combine appointments within the same day as other specialist… They make it a lot easier for me …”
“[Travel for appointments] has actually been manageable for us, only because with us being in another city, they’ll book all the appointments together. Sometimes we might be there for … a doppler, and then see the [Ophthalmologist] for her eyes, and then we get the blood drawn, and all that.”
Hospital addressing barriers (n = 6) “[The hospital] did pay 1 month’s worth of my rent for me to make sure that everything was going to be okay”
“The hospital itself has provided so much mental support, it is astounding. They will comment, like your nurses or your doctors will say...go get some air...I’m guessing they want to see the parents’ okay, even though the child may not be doing so good or going through things. They will come in and try and make sure that the parent is still eating, the parent is getting sleep... So, I would say the hospital itself mentally is a big help for me.”
Access to staff (n = 9) “Like I said [nurse coordinator]... has been a big help... I don’t have to call the front desk to be able to get ahold of them. I can literally just call the on-call phone that [nurse coordinator] carries. And if I have any type of questions, she can either give me the answer or she will ask [the doctor] and then get back with me. Typically, it’s literally within no more than 20, 30 min that she gets back with me. So it’s very, very smooth.”
Insurance Support (n = 6) “I try to utilize, from her insurance...someone comes from the medical place and picks us up and takes us down there.”
Community support Family/friend Support (n = 10) “My mom has pretty much taken over the bulk of the load with [my child’s] education, so the e-learning...my mom is pretty much watching her throughout the day to make sure she’s following along”
Telemedicine Pros Distance (n = 8) “We don’t have to travel out because that is a three-hour drive there and 3 h back. That’s 6 h...So, that was the most challenging is having to keep traveling there just to talk to a doctor when you can actually do it how we’re doing it now. So, the telemedicine actually just made it easier.”
Flexibility for Visits (n = 10) “I don’t want to do telehealth for a sick visit. But telehealth for other visits I’m okay with that.”
“Now, if an outbreak happened or something, then, yeah, we could do it.”
Cons Access to technology (n = 4) “A lot of times we do it on our phone and if you receive a call or something, you’re kicked out. Then they have to get back on and redo everything…It’s just that technical part of it is kind of frustrating sometimes.”
No physical exam (n = 13) “Just let her check and see on her, especially since she has sickle cell, I want her to feel her spleen and stuff like that. You can’t do all of that stuff virtually.”
“The only thing I would say that I just don’t like about telemedicine is that it’s just not in person. I would rather have doctors’ appointments in person or to prescribe new medication...seeing the person. You could always chart down a weight and things like that. But for me, it’s just something about physically an in-person [visit], it gives you a sense of okay, like things are going to be easier.”