The inductive themes and subthemes from the semistructured interviews for the 2 domains: transition education and need, and educational approaches
| Themes . | Subthemes . | Quotes . |
|---|---|---|
| Transition education and need domain | ||
| Endorsed age for transition | Preferred age range | “I’d say midteens because I feel like late teens might be too late. By then, the person would already be in the middle of the transition and still trying to learn.” (R8) |
| Avoiding urgency to learn | “I really didn't have no help like for as actually getting on that side like I just felt like it was rushed and everything was just like so fast.” (R2) | |
| Knowledge about SCD | Existing knowledge | “So things like elevating my legs, putting them on pillows or rolled up blankets, heating pads, and staying on top of like ibuprofen or Tylenol and stuff so like little, little remedies at home to try and get me through until the pain passes and if that doesn't work then I know that I'll need to go in.” (R9) |
| Knowledge gap | “I didn’t know anything about the labs honestly until I really made the transition. Now and like I know what certain abbreviations are or where my blood levels are supposed to be at, but I didn’t know that in pediatrics.” (R1) | |
| Patient engagement | “It’s mostly because I ask a lot of questions—I’m a big question asker. I like to get consistent answers, but it depends on what infusions I’m on or what’s happening with my treatment, and how to approach it. But, you know, different things work for different people.” (R2) | |
| Support system | Family and peer support | “I didn’t feel so helpless. I had an idea of what to expect here and there. I had a good support system—my mom would usually ask questions, and my dad too. So, I never really felt like I was on my own.” (R10) |
| Health care provider support | “I think like once a year or every other year they would, you know, brought some paperwork and always and went over, you know, how my sickle cell works. And show me, you know, like models or pictures and all that. Just basically everything to fully explain how, you know…What’s going on inside my body, how they are treating it, the medicines they are now prescribing me.” (R4) | |
| Familiarity with health care system | Setting expectations | “I feel like we should have been taught more like, you know, everything is not going to be the same where everything is not gonna be how it was over here when you get over here like I feel like they should also tell you how it’s going to be or show you or give you some ideas or how it’s gonna be when you get over there because it’s not the same not even a little bit like nothing about it is the same so I feel like you should be prepared before just going over there.” (R1) |
| Environment and workflow | “I still have appointments now I have to make, but I don’t know how to get around the hospital, so I don’t fully make them yet, because I don't know how to get around.” (R5) | |
| Access to care | Insurance | “There is one that I’m not on right now due to my insurance because my dad he’s not reliable with insurance, so it’s a complication between me and my insurance but they have recommended it.” (R5) |
| Transportation | “I need help getting to appointments, because every appointment I usually come to, if my mom or dad doesn’t bring me, I call Uber. And so…either I didn’t have money on my card or I forgot cause sometimes.” (R11) | |
| Use of technology | “Cause I check my chart often (to learn about treatment). And only to keep up to date with it every time I have an appointment.” (R6) | |
| Educational approaches domain | ||
| Modes of education | Combination of approaches | “I was talking to my doctors at the time, as well as the nurses. The provider also helped me understand some of the medications I’m on. I also like to Google my medications, so I know exactly what I’m taking.” (R10) |
| Visual learning aids | “Yeah, basically just the packets, the ones that give a quick overview. The visuals make it easier for me to understand how things really work. When I read, I can imagine it, but actually seeing it helps me really register the whole process and what’s going on.” (R4) | |
| Printed text | “I really prefer reading things on paper.” (R1) | |
| Class setting | “I don’t have any issues with that (group/class setting). I actually think it would be a good idea, especially for people who feel alone in trying to get information or who don’t have a strong support system.” (R10) | |
| Awareness through social media | “You can join groups on there, post statuses or updates, and people will comment. It’s a way to connect with others who have sickle cell, and it also allows us to compare treatments and share experiences.” (R9) | |
| “I’m scared of online, because you know, sometimes they don't know what they’re talking about. And so I feel like the best person to ask is my doctor, or like nurses.” (R11) | ||
| Peer education | “Yes, I do talk to the providers. They usually ask me every time I go in, and I always tell them, ‘all of the above’—whatever information they can give me, in any way they can, it helps.” (R8) | |
| Cadence of content | Frequency of education | “Every 2 weeks, you know, something like that. I feel like it should be more like you should have at least have probably you could do up to 3 days a month. You could do once a week. You can do every 2 weeks.” (R2) |
| Incorporating quiz to the education program | “Being pushed the information on and on and on again and you already know it can get irritating because you already know, but I feel like it should be like a type of quiz or a test to see where you’re at so you know.” (R5) | |
| Opportunity during care visit | “It depends on people’s appointments and whenever you’re seen at the hospital as you have to be there for a couple of hours. I say that’s the perfect time to get any information. Also, with being admitted too, I feel like it should be pushed every admission that’s longer than 3 to 4 days because it’s like, hey, since you're here.” (R5) | |
| Themes . | Subthemes . | Quotes . |
|---|---|---|
| Transition education and need domain | ||
| Endorsed age for transition | Preferred age range | “I’d say midteens because I feel like late teens might be too late. By then, the person would already be in the middle of the transition and still trying to learn.” (R8) |
| Avoiding urgency to learn | “I really didn't have no help like for as actually getting on that side like I just felt like it was rushed and everything was just like so fast.” (R2) | |
| Knowledge about SCD | Existing knowledge | “So things like elevating my legs, putting them on pillows or rolled up blankets, heating pads, and staying on top of like ibuprofen or Tylenol and stuff so like little, little remedies at home to try and get me through until the pain passes and if that doesn't work then I know that I'll need to go in.” (R9) |
| Knowledge gap | “I didn’t know anything about the labs honestly until I really made the transition. Now and like I know what certain abbreviations are or where my blood levels are supposed to be at, but I didn’t know that in pediatrics.” (R1) | |
| Patient engagement | “It’s mostly because I ask a lot of questions—I’m a big question asker. I like to get consistent answers, but it depends on what infusions I’m on or what’s happening with my treatment, and how to approach it. But, you know, different things work for different people.” (R2) | |
| Support system | Family and peer support | “I didn’t feel so helpless. I had an idea of what to expect here and there. I had a good support system—my mom would usually ask questions, and my dad too. So, I never really felt like I was on my own.” (R10) |
| Health care provider support | “I think like once a year or every other year they would, you know, brought some paperwork and always and went over, you know, how my sickle cell works. And show me, you know, like models or pictures and all that. Just basically everything to fully explain how, you know…What’s going on inside my body, how they are treating it, the medicines they are now prescribing me.” (R4) | |
| Familiarity with health care system | Setting expectations | “I feel like we should have been taught more like, you know, everything is not going to be the same where everything is not gonna be how it was over here when you get over here like I feel like they should also tell you how it’s going to be or show you or give you some ideas or how it’s gonna be when you get over there because it’s not the same not even a little bit like nothing about it is the same so I feel like you should be prepared before just going over there.” (R1) |
| Environment and workflow | “I still have appointments now I have to make, but I don’t know how to get around the hospital, so I don’t fully make them yet, because I don't know how to get around.” (R5) | |
| Access to care | Insurance | “There is one that I’m not on right now due to my insurance because my dad he’s not reliable with insurance, so it’s a complication between me and my insurance but they have recommended it.” (R5) |
| Transportation | “I need help getting to appointments, because every appointment I usually come to, if my mom or dad doesn’t bring me, I call Uber. And so…either I didn’t have money on my card or I forgot cause sometimes.” (R11) | |
| Use of technology | “Cause I check my chart often (to learn about treatment). And only to keep up to date with it every time I have an appointment.” (R6) | |
| Educational approaches domain | ||
| Modes of education | Combination of approaches | “I was talking to my doctors at the time, as well as the nurses. The provider also helped me understand some of the medications I’m on. I also like to Google my medications, so I know exactly what I’m taking.” (R10) |
| Visual learning aids | “Yeah, basically just the packets, the ones that give a quick overview. The visuals make it easier for me to understand how things really work. When I read, I can imagine it, but actually seeing it helps me really register the whole process and what’s going on.” (R4) | |
| Printed text | “I really prefer reading things on paper.” (R1) | |
| Class setting | “I don’t have any issues with that (group/class setting). I actually think it would be a good idea, especially for people who feel alone in trying to get information or who don’t have a strong support system.” (R10) | |
| Awareness through social media | “You can join groups on there, post statuses or updates, and people will comment. It’s a way to connect with others who have sickle cell, and it also allows us to compare treatments and share experiences.” (R9) | |
| “I’m scared of online, because you know, sometimes they don't know what they’re talking about. And so I feel like the best person to ask is my doctor, or like nurses.” (R11) | ||
| Peer education | “Yes, I do talk to the providers. They usually ask me every time I go in, and I always tell them, ‘all of the above’—whatever information they can give me, in any way they can, it helps.” (R8) | |
| Cadence of content | Frequency of education | “Every 2 weeks, you know, something like that. I feel like it should be more like you should have at least have probably you could do up to 3 days a month. You could do once a week. You can do every 2 weeks.” (R2) |
| Incorporating quiz to the education program | “Being pushed the information on and on and on again and you already know it can get irritating because you already know, but I feel like it should be like a type of quiz or a test to see where you’re at so you know.” (R5) | |
| Opportunity during care visit | “It depends on people’s appointments and whenever you’re seen at the hospital as you have to be there for a couple of hours. I say that’s the perfect time to get any information. Also, with being admitted too, I feel like it should be pushed every admission that’s longer than 3 to 4 days because it’s like, hey, since you're here.” (R5) | |
R, respondent.