Quotations presented in the article are identified by disease (T1D or SCD) and participant number, as assigned in . Twelve youth each with T1D or SCD were interviewed. Males were more likely to have poor disease control. One well-controlled YA with T1D, patient 6, had special cognitive needs but could speak and communicate well.
Identity and Cause
All youth with SCD knew it was inherited. There was considerably more response variation among youth with T1D; several offered more than 1 potential cause (). With the exception of the special needs subject (patient 6), only youth with poorly controlled T1D thought poor diet could cause T1D or did not know its cause. Youth with well-controlled T1D nominated more plausible and sophisticated causes.
Perceived Causes of Type 1 Diabetes in Children, Adolescents, and Young Adults With the Disease
All of the children discussed cause in response to identity questions. Only children with SCD mentioned symptoms (pain). Children with T1D also discussed disease pathophysiology or disease duration. For identity, adolescents discussed disease cause, self-care actions, and pathophysiology. Youth with T1D contrasted it with type 2 diabetes. Only youth with SCD discussed symptoms, affected body parts, disease duration, and restrictions. Identity and cause discussion was more sophisticated among adolescents with better controlled disease, and the contrast was strongest among youth with T1D. For example, patient 4, who was an adolescent with well-controlled disease, noted that “T1D type 1 is hereditary … [text omitted] …. It's when your body attacks your pancreas and it stops producing insulin. You have to give yourself insulin to make your blood sugar level.” In contrast, patient 10, an adolescent with poorly controlled disease, reported that “diabetes type 1 is … ah, actually I really can't explain it.”
YAs were less verbal about disease identity than were adolescents. They discussed self-care activities and compared and contrasted their disease with similar diseases. In response to identity questions those with T1D did not mention symptoms or causality, but those with SCD did discuss the symptom of pain and its causes.
Type 1 Diabetes
Youth with well-controlled T1D identified and discussed a larger variety of symptoms (n=17) and discussed them more frequently than did youth with poorly controlled diabetes (n=8). Only a few youth with T1D said they thought about symptoms frequently. Adolescents and YAs with good T1D control were more likely than those with poor control to view symptoms as a cue to test blood sugar. Symptom prevention motivated some youth with good T1D control. An adolescent with poor control connected negative consequences with symptoms.
For example, patient 10, an adolescent with poorly controlled T1D, noted “Well, I think about them every day, because, I—I know that it affects me—like with my sports and stuff …
Sickle Cell Disease
All youth with SCD described pain and its causes, with little variation between groups. Several discussed the pain's intermittent and unpredictable nature and its interference in their lives. Interestingly, youth (n=5, 10 mentions) with good SCD control discussed sickling crisis more frequently than did youth (n=2, 4 mentions) with poor control.
The vast majority of patients understood their condition as a lifelong one, although sometimes the hope for a cure was mentioned. A few may have conflated cure with disease improvement or needing fewer treatments.
Patient 3, an adolescent with good control of his disease, reported that “Sometime SCD disease, like, you can like grow out of it. You'll still have it, but you won't have as many outbreaks and such. And sometimes you have to live with it. But um …
, I know there are cures for it now, and treatments that help you avoid outbreaks.”
Likewise, adolescent number 3, with good control of T1D, noted “there's a honeymoon stage where you don't have it, like—it could go up from, like 2 days to a month, but … I haven't gone through that yet,” and “I think it can—it can go away.”
Controllability was mentioned by 5 youth with T1D and only 1 with SCD. Sophistication regarding controllability perceptions was high (e.g., a child with poorly controlled T1D differentiated between checking blood sugar and keeping it under control). Rebellion against adult control was also evident, as follows: Child number 1, with well-controlled T1D, said “it doesn't mean that you're not taking control of your T1D whenever you're slacking off for just 1 day. It matters but it doesn't matter as much as if you were to do it every month. Have to make sure that (word) on task, but not, you don't have to say that it's going to kill you because you did it for 1 day.”
Acceptance of responsibility for blood sugar controllability differed between adolescents with good and poor T1D control. For example, one adolescent with poor control (patient 1) relied on his parents and doctor to help him keep blood sugar concentrations under control. In contrast, notice the responsibility and problem-solving orientation in adolescent number 3 with well controlled T1D: “I haven't figured out why [my blood sugar went out of control] … [text omitted] …. I have to make sure my blood sugar is under control. I have to check it. I have to take my insulin when I'm supposed to.”
Major categories of impact for youth, excluding symptoms, were 1) life impact, 2) physical outcomes, 3) self-care, 4) emotions, and 5) health-system activities (). Adolescents provided more detailed discussion than did either children or YAs. Youth with both T1D and SCD from all age and control categories noted that their disease interfered with their activities and lifestyle, the most frequently mentioned impact. Patient 6, with well-controlled SCD, reported “I feel bad, cause I'm kind of trapped, can't do anything … at all.”
Items Children, Adolescents, and Young Adults Saw as a Consequence of their Disease (Excluding Symptoms)
About half of the youth with T1D denied significant day-to-day T1D impact, while only 2 youth with SCD denied significant impact. Denial could not be taken at face value, though. For example, patient 1, a child with well-controlled T1D, noted “[T1D] doesn't really affect it [daily life] that much. I just kind of try to hide it. So I won't be embarrassed or anything.”
Youth in both disease groups admitted they occasionally forgot medication when socializing, despite having friends who were described as supportive and helpful. Most youth with T1D tried to keep up with friends even when they were not feeling well, while most youth with SCD did not. Children with T1D complained about taking time out from social activities to check/adjust insulin. Youth with SCD frequently discussed the negative impact of numerous health-system visits and symptoms on school/work attendance. Two youth with T1D said blood sugar problems impaired concentration at school, but not school attendance. Only youth with T1D mentioned disease impact on career choice and insurability or the importance of scheduling.
All youth described their disease as serious or very serious, with death most frequently mentioned as the worst that could happen, followed by coma (T1D) and hospitalization. Youth with T1D identified a larger number of physical consequences than did youth with SCD.
Self-care activities were also seen as a consequence by all youth, with specific activities varying by disease and age. Most youth with SCD mentioned rest, avoiding overexertion, maintaining hydration, and taking medicine as disease consequences. Youth with T1D mentioned medicine and diet, adolescents and YAs included checking blood sugars. One adolescent with poor T1D control mentioned reducing the number of shots as a positive outcome.
Emotions were also a frequently described consequence as well as being discussed in other contexts. Youth with well-controlled diabetes mentioned emotions markedly more often than those in the other 3 groups. Youth noted that significant others felt worried and anxious about them, and some youth described a need for encouragement. Social emotions included feeling left out or embarrassed and negative feelings resulting from others' lack of understanding or impatience. For example, patient 5, a YA with well-controlled SCD, reported “most of them think that your sickle cell pain is just like a regular stomachache and it's not. [text omitted] trying to go out and do your daily things and you can't do it, and people don't understand that there is a seriousness there, and there are complications with sickle cell, but they don't understand. And people looking at it—looking at you like, you don't look like you in pain, because they don't see no … blood, they don't see nothing.”
The most prominent nonsocial emotion was worry, discussed most frequently by children and adolescents with well-controlled T1D (about symptoms or blood sugar). Worry was discussed less frequently by youth with both well- and poorly controlled SCD (about pain, getting sick, getting to a healthcare visit). Youth with T1D who discussed worry also described methods for dealing with it: understanding, checking sugars, preventive steps, and avoiding dwelling on symptoms. Two youth with poorly controlled SCD advised having a good attitude and going on with life. Only 1 youth with poorly controlled T1D mentioned worry, advising against it.
Additional nonsocial emotions were annoyance/frustration, general emotional distress (e.g., “feel bad,” “bothered”), fear, sadness, and shock. Annoyance/frustration was most frequently related to the self-care routines of youth with well-controlled T1D. Youth expressing general emotional distress most often had poor disease control (both T1D and SCD) and did not link the emotion with any positive coping strategy. The distress of youth with SCD was primarily related to feeling different from others. This was evident in child 8, with poorly controlled SCD, who said “[I] want to be a normal little person.”
Acceptance and understanding were expressed by 4 youth with well-controlled T1D and 2 with poorly controlled SCD and were generally described as a response to a negative situation. No youth with poor T1D control discussed acceptance.
Two adolescents with good T1D control attributed grumpiness, irritability, and anger to blood sugar problems, and several youth noted their belief that stress and worry could worsen disease.
An adolescent with well-controlled SCD (patient 3) noted “If you think about the symptoms a lot, you could start to stress yourself out and make yourself sick, so I don't really think about it unless I'm sick.”