Table 4 Exemplary quotes from AYA and their RP on most stressful events related to the CD
Perceived Challenges | AYA (n = 235) | RP (n = 70) | ||
|---|---|---|---|---|
n (%) | Example quotes | n (%) | Example quotes | |
Psychological burdens | 93 (39) | “Worries that won’t go away. Fear of not living long. Self-doubt.“ “(…) The look of uncertainty in the future due to the illness, and potential opportunities that will be taken away from me (…)” | 35 (50) | “Death. Fear that my child is suffering. Medication administration, by that I mean his quality of life, which he doesn’t have at that moment, but needs to continue living.“ “Daily taking of tablets, with literal disgust for them. Uncertainty of renewed attacks of rheumatism. (…) Sudden panic attacks due to presumably loss of control over the situation.“ |
Physical impairments | 54 (23) | “Fatigue and poor concentration with fluctuating blood glucose levels. Two blood glucose derailments.“ “(…) I can’t dance at parties as long as I would like without having very severe pain in my joints. I have a lot of problems concentrating in school because my pain often makes me lose energy or distracts me. (…)” | 11 (16) | “Severe hypos with loss of speech or vision.“ “Glaucoma surgery, visual deterioration, delayed physical development possibly due to medication” |
Social burdens | 71 (30) | “In terms of my entire diabetes time, what bothered me the most was that a lot of people are uneducated about diabetes and often say stupid things.“ “My father’s little acceptance of having a sick child (…)” | 19 (27) | “Handling hyperglycemia and hypoglycemia in society. When she e.g., must eat at school during lessons and thus must constantly discuss with new teachers. Acceptance of her illness by classmates” “(…) feels excluded, in free time and in school” |
Self- management | 74 (32) | “What stresses me the most is that I always have to have everything with me, that I have to permanently wear an insulin pump and a sensor. Also that I can’t just eat anything, but have to calculate everything. (…)” “Daily time spent not forgetting anything, being constantly reminded not to forget anything (…)” | 30 (43) | “That she constantly has to start calculating and counting carbohydrates every time she eats and can never leave the house without her injections (…) and has to control herself all the time” “(…) every 5 days setting the medication injection” |