Becoming Autonomous and Integrating Insulin Pump Therapy into Life: A Qualitative Analysis of Adolescent Experiences with Type 1 Diabetes Management
Abstract
1. Introduction
2. Materials and Methods
2.1. Participants
2.2. Inclusion Criteria and Interviewing
2.3. Research Questions
2.4. Ethical Issues and Consent
2.5. Data Collection
2.6. Qualitative Analysis
2.7. Quantitative Analysis
3. Results
3.1. Adjusting to the Lifelong Diagnosis
“At that time [diagnosis], I was in shock and started crying. At first, I was not cool at all, it really got to me.”(P9)
“I knew I had a condition that would never go away. I was worried because this [diabetes] would never go away and I didn’t know how to deal with it.”(P20)
“I was really shocked when I heard I had diabetes because of my young age and because I knew nothing about diabetes, and because never before had I been in hospital. But thereafter I did well with the help of the nurses and my relatives. Ok this was not what I expected, but it seemed that we could all get used to it.”(P5)
“I had no idea what T1D was and wanted to learn all about it. The doctors explained to us at the hospital what diabetes was all about. I understood that it was nothing much, and would be just fine in in my everyday life.”(P2)
“I don’t remember much. I knew I was going to have a problem and I was scared about it. I didn’t know what it was. I thought my life was going to be ruined.”(P16)
“I saw my dad and mom crying and that frightened me. That is when my mom took up crochet, to help herself forget. I remember my dad feeding me and my sister kept calling because she was worried sick I was upset seeing them my parents cry, and of course I was in pain from the IV.”(P20)
3.2. Exposing or Hiding Diabetes: “Opening Up” Versus “Hiding It”
“I’m not ashamed to say that I have diabetes and to explain about the pump that controls insulin. I don’t remember having difficulty with that. In general, the pump has not bothered me at all.”(P10)
“At first, some kids teased me and I was upset. At some point I said to myself this is not going to change so I have to like it.”(P19)
“The CGM has really helped me psychologically to open up about diabetes. Now I’m much more comfortable when people ask. I used to hide that I had diabetes. Basically, with using the CGM I made the decision to show diabetes. It’s an exposure.”(P8)
“At first, I had this issue where I was ashamed to say that I have diabetes, and especially when people would ask why I needed injections. I got over it, definitely became less insecure when I got the CGM. Doing a scan is less weird. But with the pump I am worried that people will see me. Especially in the summer with the swimsuit the pump will be ugly aesthetically. I am anxious to be seen, there is definitely stress.”(P9)
“I just did not want it to show. I do not want people to feel sorry for me. People just do not need to know about diabetes. Just my close friends.”(P6)
3.3. Becoming Autonomous and Integrating Insulin Pump Therapy into Daily Life
“Since I got the pump, my mom doesn’t come to school every day to give me insulin injections. I prefer it this way because she used to interrupt me from classes and tests.”(P1)
“From the age of 10 I started doing everything by myself. Completely by myself. Even handling high glucose levels. I feel much better now with the pump. I feel just fine about my diabetes.”(P2)
“When I’m out I don’t have to take out needles and pierce myself. I just press a button and it’s done.”(P4)
“With the pump my hands are no longer tied. I feel more confident that if I go out and eat something greasy, the pump will cover for me. Before the pump I sometimes forgot the pen. Whereas now I am sure the pump will cover for me. The feeling is confidence and safety.”(P5)
“The positive thing is that I don’t have as many hypoglycemias, it helps me, it alerts me. One time at school I had hypoglycemia but had not realized it. Yet, the pump went off and alerted me. I am lucky I was wearing the pump and the alarm went off, otherwise I would have had hypoglycemia.”(P13)
“The pump is all good. I can’t say anything else. It’s in my life now, I can’t imagine what it would be like without it. It becomes a part of your life, a part of your body basically.”(P11)
“The pump is a part of my daily life, my life, and I don’t think I could ever take it off. I cannot part with it because it has helped me a lot, I’m used to having it on me. I like it very much.”(P13)
3.4. Worrying over Pump Therapy
“If I fall down, I don’t know what would happen to the pump. A damage would be done, to the machine or to the abdomen. If the pump were damaged then I would have no insulin and it would be all much worse. I will have higher glucose.”(P12)
“I didn’t go out much because I was afraid of experiencing a problem. And at school I was a little aloof because I was afraid that my pump would break.”(P19)
“Once the shell (CGM) disconnected and we didn’t have a spare part. The pump seemed to be malfunctioning. I was scared at first. We had no more spares and I would have to go so many hours without the pump.”(P1)
“I used the pump during gymnastics and many times the clip would come off or brake off or the pump cords got tangled. Even my headphones got tangled in the pump. I was also afraid of hurting myself because I had at times hit myself and it gave me a lot of bruises.”(P20)
“I realized that I don’t want to have anything on me. At the moment I don’t want to have anything on me. In sports it will be difficult to have it on me. I want to be free, not afraid of breaking it.”(P14)
“I liked the idea that the pump would give me insulin and I could eat a little more. But when I tried it bothered me and made me feel like I carry a disease on me and it won’t go away. And I had to watch it all the time.”(P16)
4. Discussion
Strengths and Limitations
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
Abbreviations
T1D | Type 1 diabetes |
MDI | Multiple daily injections |
CGM | Continuous glucose monitoring |
CSII | Continuous subcutaneous insulin infusion |
AID | Automated insulin delivery |
PLGS | Pump therapy with low glucose suspend feature |
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Participant | Gender | Age | Age at Diagnosis (years) | Diabetes Duration (years) | T1D Therapy Choice | HbA1c (%) Most Recent | HbA1c (%) Yearly Average |
---|---|---|---|---|---|---|---|
P1 | Female | 11 | 9 | 2.00 | Pump PLGS + CGM | 6.3% | 7% |
P2 | Female | 11 | 7 | 4.00 | Pump PLGS + CGM | 7% | 6.86% |
P3 | Male | 18 | 13 | 3.50 | Pump PLGS discontinued | 8.3% | 8.78% |
P4 | Female | 16 | 12 | 4.00 | Pump PLGS + CGM | 7.1% | 7.06% |
P5 | Male | 12 | 11 | 0.83 | Pump PLGS + CGM | 7% | 6.85% |
P6 | Female | 21 | 10 | 14.00 | MDI only (no CGM) | 7% | 7.3% |
P7 | Male | 14 | 8 | 6.00 | MDI + CGM | 8.07% | 8.13% |
P8 | Female | 20 | 3 | 18.00 | MDI + CGM | 6.1% | 5.93% |
P9 | Female | 18 | 16 | 3.00 | MDI + CGM | 6.2% | 6.47% |
P10 | Male | 17 | 9 | 9.00 | Pump PLGS + CGM | 6.6% | 6.8% |
P11 | Female | 18 | 5 | 13.00 | Pump PLGS + CGM | 7.1% | 7,33% |
P12 | Male | 12 | 11 | 0.75 | Pump PLGS + CGM | 6.15% | 6.2% |
P13 | Female | 13 | 10 | 3.00 | Pump PLGS + CGM | 7.6% | 7.76% |
P14 | Male | 16 | 13 | 3.00 | MDI + CGM | 8.5% | 7.73% |
P15 | Female | 13 | 10 | 3.00 | MDI + CGM | 6.3% | 6.67% |
P16 | Male | 13 | 11 | 0.75 | Pump PLGS discontinued → MDI | 6.5% | 6.9% |
P17 | Female | 16 | 13 | 4.50 | Pump PLGS + CGM | 7.7% | 7.43% |
P18 | Male | 16 | 13 | 2.50 | MDI + CGM | 7% | 7.36% |
P19 | Female | 13 | 9 | 4.00 | Pump PLGS + CGM | 7% | 7.47% |
P20 | Female | 13 | 8 | 5.00 | Pump PLGS discontinued → change to pump with manual combination without automation (patch pump) | 7% | 7.5% |
Mean | 15.05 | 10.05 | 5.19 | 7.03% | 7.18% |
Variables | Total (n = 20) | Insulin Pump (n = 13) | Multiple Daily Injections (n = 7) |
---|---|---|---|
Age | 15.05 ± 0.91 | 14.08 ± 0.71 | 16.86 ± 1.12 * |
Age at diagnosis | 10.05 ± 0.67 | 9.85 ± 0.65 | 10.43 ± 1.59 |
Diabetes duration (yrs) | 5.19 ± 1.2 | 4.17 ± 0.95 | 7.07 ± 2.13 |
Most recent HbA1c (%) | 7.03 ± 0.16 | 7.03 ± 0.16 | 7.02 ± 0.36 |
Yearly average HbA1c (%) | 7.18 ± 0.15 | 7.23 ± 0.17 | 7.08 ± 0.29 |
Socioeconomic status | 6.95 ± 0.36 | 7.15 ± 0.42 | 6.57 ± 0.69 |
Thematic Categories | Subcategories and Relevant Concepts per Treatment Group | |
---|---|---|
Insulin Pump Users’ Group n = 10 | Multiple Injections Group n = 10 (Refused or Discontinued Pump) | |
1. Adjusting to the lifelong diagnosis | DIAGNOSIS INITIAL SHOCK AND COPING Initial shock at diagnosis, followed by support and coping P1, P2, P5 Diabetes “not serious” P2, P5, P10, P11 Parental support P10, P11 Parental guidance P1, P2, P11 Nutrition gradual normalization P12 | DIAGNOSIS INITIAL SHOCK AND COPING Diagnosis with emergency transport understood as “catastrophe” P16 Shock of very abrupt diagnosis P6, P8, P9, P20 Early illness severity perception P6, P9, P16, P20 Delayed diagnosis distress P6, P9 Parental overt stress reactions P7, P16, P20 Readiness and sibling support P18 Sense of dietary restriction P6, P8, P9 |
2. Exposing or Hiding diabetes | EXPOSING/SHARING with CGM or PUMP Initial concerns centered around visibility of the device and fear of social stigma P1, P19 No shame at all from start P10 Social exposure “you stop hiding, it is just about exposing oneself” P5, P11 Gradually answering questions P8, P15, P18 Joining groups of diabetics P17, P19 Feeling of normalcy through pump use P2 Acceptance follows opening up P17 Totally accepting P11 | HIDING/KEEPING TO ONESELF/RESISTING VISIBILITY Initial shame followed by confidence P9 Avoiding answering questions P3, P6 Feeling different—Social isolation P15, P20 Hiding diabetes P3, P9, P16 Acceptance over time P6, P14, P15 Preference for “discretion” P6, P9 Confidence built over years of experience P6, P8, P9 Opening up with CGM exposure P7, P8, P9, P15 |
3. Becoming Autonomous and Integrating insulin treatment into life (core category) | EXPERIENCING EASE, SAFETY, AUTONOMY AND INTEGRATION INTO LIFE Experiencing facilitation/autonomy P1, P2, P4, P5 Experiencing ease of “no piercing in public” P1, Development of confidence through successful management of challenging situations P2 Felt safety and confidence P5, P13 Experiencing integration of device into life “It is as if it is not there” P2, P5 “It is like my belt” P5, P19 “Part of your body” P1, P19 “Just love it” P19 “Feels like a friend” P2 “Like a mobile phone” P2, P4, P19 | DESIRING BODILY FREEDOM AND RESISTING RESTRICTION Perceiving pump as burden P3 Perceiving pulp as bulky P8 Perceiving permanency of disease P8 Perceiving pump as esthetically unpleasing P9 Projecting body contact would not be well tolerated P14 Perceiving pump as reminder of diabetes P16 Experienced bruises and pain from the pump P3, P20 Desiring to feel “free” without a device attached P16 Perceiving pump like a nuisance P8, P16 Perceiving pump as limiting independence P8 |
4.Worrying over pump therapy | WORRYING OVER DAMAGE OR DETACHMENT of the pump Worrying over pump detachment P1, P13, P17 Worrying over damaging the pump P12, P19 Worrying over beach routine (on/off) P1 | WORRYING OVER PROJECTED DAMAGE OR LOSS of the pump Worrying over pump cords getting tangled in sports P14, P20 Fearing loss or damage of pump P3, P7, P14 Worrying over beach routine (taking on/off) P20 |
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Tzavela, E.C.; Kossiva, L.; Sakou, I.-I.; Paltoglou, G.; Plarinou, A.; Karanasios, S.; Karavanaki, K. Becoming Autonomous and Integrating Insulin Pump Therapy into Life: A Qualitative Analysis of Adolescent Experiences with Type 1 Diabetes Management. Diabetology 2025, 6, 76. https://doi.org/10.3390/diabetology6080076
Tzavela EC, Kossiva L, Sakou I-I, Paltoglou G, Plarinou A, Karanasios S, Karavanaki K. Becoming Autonomous and Integrating Insulin Pump Therapy into Life: A Qualitative Analysis of Adolescent Experiences with Type 1 Diabetes Management. Diabetology. 2025; 6(8):76. https://doi.org/10.3390/diabetology6080076
Chicago/Turabian StyleTzavela, Eleni C., Lydia Kossiva, Irine-Ikbale Sakou, George Paltoglou, Adamantini Plarinou, Spyridon Karanasios, and Kyriaki Karavanaki. 2025. "Becoming Autonomous and Integrating Insulin Pump Therapy into Life: A Qualitative Analysis of Adolescent Experiences with Type 1 Diabetes Management" Diabetology 6, no. 8: 76. https://doi.org/10.3390/diabetology6080076
APA StyleTzavela, E. C., Kossiva, L., Sakou, I.-I., Paltoglou, G., Plarinou, A., Karanasios, S., & Karavanaki, K. (2025). Becoming Autonomous and Integrating Insulin Pump Therapy into Life: A Qualitative Analysis of Adolescent Experiences with Type 1 Diabetes Management. Diabetology, 6(8), 76. https://doi.org/10.3390/diabetology6080076