Health Seeking Behaviour and Diabetes Self-Management Among Young Adults with Type 1 Diabetes Transitioning from Paediatric to Adult Care: Evidence from the Sweetlings Program in India
DOI:
https://doi.org/10.61194/jhlqr.v6i1.1041Keywords:
Type 1 Diabetes Mellitus (T1DM), health-seeking behaviour, diabetes self-management (DSM), Academic Performance, Sweetlings program in India, mixed method studyAbstract
Type 1 Diabetes (T1D) requires intensive diabetes self-management (DSM) and consistent engagement with healthcare services. Adherence to DSM declines during transition from paediatric to adult care. Substantial socio-financial barriers in India leads to limited health-seeking behaviour (HSB) and DSM research among young adults’ post-transition. The Sweetlings program, a comprehensive paediatric T1D support initiative, provides a unique context to examine these changes. This study aimed at the assessment of the HSB, self-care practices, and barriers to DSM among young adults with T1D transitioned from Sweetlings paediatric program to adult care. Two-phased mixed-method was used. In first phase, preliminary information from 33 eligible participants identified via program database captured using Google form. Face-to-face or telephonic in-depth semi-structured interviews were conducted for them in the second phase. Data were transcribed and analysed thematically to identify patterns in DSM, adherence, and barriers after transition. Participants reported strong DSM during Sweetlings program due to structured supervision, regular reminders, provision of supplies and counselling. After transition, most of them experienced reduced glycaemic control and poorer adherence to diet, physical activity, insulin routines. Domains of decline are: supervision, self-control, counselling, occupational constraints, financial strain, discomfort about dependence on family for medical expenses. Post-transition non-adherence rose from 24.24% to 54.54% (percentages are based on 33 interviewed participants). Persistent barriers included cost of care, demanding work schedules, stigma, clinic attendance, emotional distress. Transition to adult care weakened DSM and HSB. Strengthening transitional care through structured counselling, financial-educational support, youth-friendly OPD environments, and peer mentoring may improve DSM in young adults with T1DM in India.
References
1. Byrne M, O’Connell A, Egan AM, Dinneen SF, Hynes L, O’Hara MC, et al. A Core Outcomes Set for Clinical Trials of Interventions for Young Adults with Type 1 Diabetes: An International, Multi-Perspective Delphi Consensus Study. Trials. 2017;18(1):602. doi:10.1186/s13063-017-2364-y
2. Spaic T, Robinson T, Goldbloom E, Gallego P, Hramiak I, Lawson ML, et al. Closing the Gap: Results of the Multicenter Canadian Randomized Controlled Trial of Structured Transition in Young Adults with Type 1 Diabetes. Diabetes Care. 2019;42(6):1018–26. doi:10.2337/dc18-2187
3. Butalia S, Kaplan GG, Khokhar B, Haubrich S, Rabi DM. The Challenges of Identifying Environmental Determinants of Type 1 Diabetes: In Search of the Holy Grail. Diabetes Metab Syndr Obes. 2020;13:4885–95. doi:10.2147/DMSO.S275080
4. Alassaf A, Gharaibeh L, Grant C, Punthakee Z. Predictors of Type 1 Diabetes Mellitus Outcomes in Young Adults after Transition from Pediatric Care. J Diabetes. 2017;9(12):1058–64. doi:10.1111/1753-0407.12536
5. O’Hara MC, Cunningham Á, Keighron C, Allen G, Caulfield A, Duffy C, et al. Formation of a Type 1 Diabetes Young Adult Patient and Public Involvement Panel to Develop a Health Behaviour Change Intervention: The D1 Now Study. Res Involv Engagem. 2017;3:21. doi:10.1186/s40900-017-0068-9
6. Karguppikar M, Mondkar S, Shah N, Kajale N, Kulkarni S, Gondhalekar K, et al. Resting Metabolic Rate in Indian Adolescents and Youth with Type 1 Diabetes Mellitus: A Case-Controlled Study. Indian J Endocrinol Metab. 2024;28(5):529–35. doi:10.4103/ijem.ijem_139_23
7. International Diabetes Federation. IDF Diabetes Atlas. 11th ed. International Diabetes Federation; 2025.
8. Almigbal TH, Almutairi KM, Vinluan JM, Batais MA, Alodhayani A, Alonazi WB, et al. Association of Health Literacy and Self-Management Practices and Psychological Factor among Patients with Type 2 Diabetes Mellitus in Saudi Arabia. Saudi Med J. 2019;40(11):1158–66. doi:10.15537/smj.2019.11.24585
9. Al-Qahtani AM. Frequency and Factors Associated with Inadequate Self-Care Behaviors in Patients with Type 2 Diabetes Mellitus in Najran, Saudi Arabia. Saudi Med J. 2020;41(9):955–64. doi:10.15537/smj.2020.9.25339
10. Altobelli E, Valenti M, Verrotti A, Masedu F, Tiberti S, Chiarelli F, et al. Family and Disease Management in Young Type 1 Diabetic Patients. Acta Diabetol. 2000;37(4):173–8. doi:10.1007/s005920070001
11. O’Hara MC, Hynes L, O’Donnell M, Nery N, Byrne M, Heller SR, et al. A Systematic Review of Interventions to Improve Outcomes for Young Adults with Type 1 Diabetes. Diabetic Medicine. 2017;34(6):753–69. doi:10.1111/dme.13276
12. Morrissey EC, Casey B, Hynes L, Byrne M, Dinneen SF. Supporting Self-Management and Clinic Attendance in Young Adults with Type 1 Diabetes: Development of the D1 Now Intervention. Pilot Feasibility Stud. 2021;7(1):186. doi:10.1186/s40814-021-00922-z
13. Sharma SK, Kant R, Kalra S, Bishnoi R. Prevalence of Primary Non-Adherence with Insulin and Barriers to Insulin Initiation. Eur Endocrinol. 2020;16(2):143–7. doi:10.17925/EE.2020.16.2.143
14. Jewell RR, Gorey KM. Psychosocial Interventions for Emergent Adults with Type 1 Diabetes. Diabetes Spectrum. 2019;32(3):249–56. doi:10.2337/ds18-0063
15. Ng AH, Pedersen ML, Rasmussen B, Rothmann MJ. Needs of Young Adults with Type 1 Diabetes During Life Transitions. Patient Educ Couns. 2022;105(5):1338–41. doi:10.1016/j.pec.2021.09.007
16. Ng AH, Crowe TC, Ball K, Rasmussen B. A mHealth Support Program for Australian Young Adults with Type 1 Diabetes. Digit Health. 2019;5:2055207619882179. doi:10.1177/2055207619882179
17. Williams S, Newhook LAA, Power H, Shulman R, Smith S, Chafe R. Improving the Transitioning of Pediatric Patients with Type 1 Diabetes into Adult Care. Clin Diabetes Endocrinol. 2020;6:11. doi:10.1186/s40842-020-00099-z
18. O’Hara MC, Hynes L, O’Donnell M, Keighron C, Allen G, Caulfield A, et al. Strength in Numbers: An International Consensus Conference to Develop a Novel Approach to Care Delivery. Res Involv Engagem. 2017;3:25. doi:10.1186/s40900-017-0076-9
19. Wambui Charity K, Kumar AM V, Hinderaker SG, Chinnakali P, Pastakia SD, Kamano J. Do Diabetes Mellitus Patients Adhere to Self-Monitoring of Blood Glucose? Diabetes Res Clin Pract. 2016;112:37–43. doi:10.1016/j.diabres.2015.11.006
20. Rao P V, Makkar BM, Kumar A, Das AK, Singh AK, Mithal A, et al. RSSDI Consensus on Self-Monitoring of Blood Glucose in Types 1 and 2 Diabetes Mellitus in India. Int J Diabetes Dev Ctries. 2018;38:260–79. doi:10.1007/s13410-018-0677-3
21. Lv W, Luo J, Long Q, Yang J, Wang X, Guo J. Factors Associated with Adherence to Self-Monitoring of Blood Glucose among Young People with Type 1 Diabetes in China. Patient Prefer Adherence. 2021;15:2809–19. doi:10.2147/PPA.S340971
22. Sakane N, Hirota Y, Yamamoto A, others. To Use or Not to Use a Self-Monitoring of Blood Glucose System? Internal Medicine. 2023;62(18):2607–15. doi:10.2169/internalmedicine.0639-22
23. Chang CW, Yeh CH, Lo FS, Shih YL. Adherence Behaviours in Taiwanese Children and Adolescents with Type 1 Diabetes Mellitus. J Clin Nurs. 2007;16(7B):207–14. doi:10.1111/j.1365-2702.2005.01541.x
24. Johansen CB, Pouwer F, Beck-Nielsen H, Rothmann MJ. Positive Facilitators of Diabetes Management in Emerging Adults with Type 1 Diabetes. Endocrinol Diabetes Metab. 2020;3(3):e00161. doi:10.1002/edm2.161
25. Selvan C, Thukral A, Dutta D, Ghosh S, Chowdhury S. Impact of Self-Monitoring of Blood Glucose Log Reliability on Long-Term Glycemic Outcomes. Indian J Endocrinol Metab. 2017;21(3):382–6. doi:10.4103/ijem.IJEM_342_16
26. Garvey KC, Finkelstein JA, Zhang F, LeCates R, Laffel L, Wharam JF. Health Care Utilization Trends Across the Transition Period. Diabetes Care. 2022;45(11):2509–17. doi:10.2337/dc22-0152
27. Nakhla M, Daneman D, To T, Paradis G, Guttmann A. Transition to Adult Care for Youths with Diabetes Mellitus. Pediatrics. 2009;124(6):e1134–e1141. doi:10.1542/peds.2009-0041
28. Kalra S, Sridhar GR, Balhara YPS, others. National Recommendations: Psychosocial Management of Diabetes in India. Indian J Endocrinol Metab. 2013;17(3):376–95. doi:10.4103/2230-8210.111608
29. National Institute for Health, Excellence C. Diabetes (Type 1 and Type 2) in Children and Young People: Diagnosis and Management (NG18). 2023.
30. Helgeson VS, Vaughn AK, Seltman H, Orchard T, Libman I, Becker D. Trajectories of Glycemic Control over Adolescence and Emerging Adulthood. J Pediatr Psychol. 2018;43(1):8–18. doi:10.1093/jpepsy/jsx083
31. Hood KK, Beavers DP, Yi-Frazier J, Bell R, Dabelea D, McKeown RE, et al. Psychosocial Burden and Glycemic Control During the First 6 Years of Diabetes. Journal of Adolescent Health. 2014;55(4):498–504. doi:10.1016/j.jadohealth.2014.03.011
32. Walsh DMJ, Hynes L, O’Hara MC, McSharry J, Dinneen SF, Byrne M. Embedding a User-Centred Approach in the Development of a Complex Behaviour Change Intervention. HRB Open Res. 2018;1:8. doi:10.12688/hrbopenres.12803.2
33. Mohan V. Viswanathan Mohan 2018 Full Interview. 2018.
34. Rohilla L, Gujjar N, Kaur G, Walia P, Dayal D. Financial Burden for Families of Children with Type 1 Diabetes. Diabetol Int. 2022;13(4):665–71. doi:10.1007/s13340-022-00589-8
35. Kane S, Joshi M, Desai S, Mahal A, McPake B. People’s Care Seeking Journey for a Chronic Illness in Rural India. Soc Sci Med. 2022;312:115390. doi:10.1016/j.socscimed.2022.115390
36. Alassaf A, Gharaibeh L, Zurikat RO, Ibrahim S, Zayed AA, Odeh R. Prevalence of Depression in Patients with Type 1 Diabetes. J Diabetes Res. 2023;2023:3542780. doi:10.1155/2023/3542780
37. Agarwal S, Raymond JK, Schutta MH, Cardillo S, Miller VA, Long JA. An Adult Health Care-Based Pediatric to Adult Transition Program. Diabetes Educ. 2017;43(1):87–96. doi:10.1177/0145721716677098
38. Lyons SK, Becker DJ, Helgeson VS. Transfer from Pediatric to Adult Health Care: Effects on Diabetes Outcomes. Pediatr Diabetes. 2014;15(1):10–7. doi:10.1111/pedi.12106
39. Greeley SAW, Polak M, Njølstad PR, others. ISPAD Clinical Practice Consensus Guidelines 2022: The Diagnosis and Management of Monogenic Diabetes in Children and Adolescents. Pediatr Diabetes. 2022;23(8):1188–211. doi:10.1111/pedi.13426
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