UNDERSTANDING THE LIVED EXPERIENCE OF TYPE 1 DIABETES: FAMILY NARRATIVES AND COPING STRATEGIES
Main Article Content
Keywords
anthropology, paediatric nursing, family law, type 1 diabetes mellitus, qualitative research
Abstract
Background: The study aims to analyze pathology interpretations among families with children diagnosed with type 1 diabetes mellitus (T1DM), considering disease discovery, aetiology, treatment choices, and prognosis.
Methods: A qualitative methodological approach was utilized using principles from medical anthropology and narrative techniques. In-depth interviews were conducted with twelve families at a specialized centre during follow-up appointments for children with T1DM. Data collected were subjected to inductive thematic analysis.
Results: Explanatory models constructed by families revealed their efforts to comprehend the signs and symptoms of T1DM. Families underwent a reorganization to meet the new healthcare demands, including dietary adjustments, physical activity engagement, and blood glucose monitoring for their children.
Conclusion: Understanding the explanatory models of families sheds light on how they attribute meaning to their child's illness, facilitating daily nursing care and effective disease management. This insight is crucial for healthcare providers to consider for improved patient support and treatment outcomes.
References
2. Craig, M. E., Kim, K. W., Isaacs, S. R., Penno, M. A., Hamilton-Williams, E. E., Couper, J. J., & Rawlinson, W. D. (2019). Early-life factors contributing to type 1 diabetes. Diabetologia, 62, 1823-1834.
3. Garg, S. K., Rodbard, D., Hirsch, I. B., & Forlenza, G. P. (2020). Managing new-onset type 1 diabetes during the COVID-19 pandemic: challenges and opportunities. Diabetes technology & therapeutics, 22(6), 431-439.
4. Harbison, J. E., Roth‐Schulze, A. J., Giles, L. C., Tran, C. D., Ngui, K. M., Penno, M. A., Thomson, R. L., Wentworth, J. M., Colman, P. G., & Craig, M. E. (2019). Gut microbiome dysbiosis and increased intestinal permeability in children with islet autoimmunity and type 1 diabetes: A prospective cohort study. Pediatric diabetes, 20(5), 574-583.
5. Hilliard, M. E., Levy, W., Anderson, B. J., Whitehouse, A. L., Commissariat, P. V., Harrington, K. R., Laffel, L. M., Miller, K. M., Van Name, M., & Tamborlane, W. V. (2019). Benefits and barriers of continuous glucose monitoring in young children with type 1 diabetes. Diabetes technology & therapeutics, 21(9), 493-498.
6. McGlinchey, A., Sinioja, T., Lamichhane, S., Sen, P., Bodin, J., Siljander, H., Dickens, A. M., Geng, D., Carlsson, C., & Duberg, D. (2020). Prenatal exposure to perfluoroalkyl substances modulates neonatal serum phospholipids, increasing the risk of type 1 diabetes. Environment International, 143, 105935.
7. Moser, O., Riddell, M. C., Eckstein, M. L., Adolfsson, P., Rabasa-Lhoret, R., van den Boom, L., Gillard, P., Nørgaard, K., Oliver, N. S., & Zaharieva, D. P. (2020). Glucose management for exercise using continuous glucose monitoring (CGM) and intermittently scanned CGM (isCGM) systems in type 1 diabetes: a position statement of the European Association for the Study of Diabetes (EASD) and of the International Society for Pediatric and Adolescent Diabetes (ISPAD) endorsed by JDRF and supported by the American Diabetes Association (ADA). Diabetologia, 63(12), 2501-2520.
8. Nielsen, N. F., Gaulke, A., Eriksen, T. M., Svensson, J., & Skipper, N. (2019). Socioeconomic inequality in metabolic control among children with type 1 diabetes: a nationwide longitudinal study of 4,079 Danish children. Diabetes care, 42(8), 1398-1405.
9. Odeh, R., Gharaibeh, L., Daher, A., Kussad, S., & Alassaf, A. (2020). Caring for a child with type 1 diabetes during COVID-19 lockdown in a developing country: challenges and parents' perspectives on the use of telemedicine. Diabetes research and clinical practice, 168, 108393.
10. Patterson, C. C., Harjutsalo, V., Rosenbauer, J., Neu, A., Cinek, O., Skrivarhaug, T., Rami-Merhar, B., Soltesz, G., Svensson, J., & Parslow, R. C. (2019). Trends and cyclical variation in the incidence of childhood type 1 diabetes in 26 European centres in the 25 years 1989–2013: a multicentre prospective registration study. Diabetologia, 62, 408-417.
11. Seckold, R., Fisher, E., De Bock, M., King, B., & Smart, C. (2019). The ups and downs of low‐carbohydrate diets in managing Type 1 diabetes: a review of clinical outcomes. Diabetic Medicine, 36(3), 326-334.
12. Tornese, G., Ceconi, V., Monasta, L., Carletti, C., Faleschini, E., & Barbi, E. (2020). Glycemic control in type 1 diabetes mellitus during COVID-19 quarantine and the role of in-home physical activity. Diabetes technology & therapeutics, 22(6), 462-467.
13. Tsvyatkova, D., & Storni, C. (2019). Designing an educational interactive eBook for newly diagnosed children with type 1 diabetes: Mapping a new design space. International Journal of child-computer interaction, 19, 1-18.
14. Verbeeten, K. C., Perez Trejo, M. E., Tang, K., Chan, J., Courtney, J. M., Bradley, B. J., McAssey, K., Clarson, C., Kirsch, S., & Curtis, J. R. (2021). Fear of hypoglycemia in children with type 1 diabetes and their parents: Effect of pump therapy and continuous glucose monitoring with the option of low glucose suspend in the CGM TIME trial. Pediatric diabetes, 22(2), 288-293.
15. Wang, K., Ye, F., Chen, Y., Xu, J., Zhao, Y., Wang, Y., & Lan, T. (2021). Association between enterovirus infection and type 1 diabetes risk: a meta-analysis of 38 case-control studies. Frontiers in endocrinology, 12, 706964.
16. Wang, X., Shu, W., Du, J., Du, M., Wang, P., Xue, M., Zheng, H., Jiang, Y., Yin, S., & Liang, D. (2019). Mobile health in managing type 1 diabetes: a systematic review and meta-analysis. BMC endocrine disorders, 19, 1-10.
17. Ware, J., Allen, J. M., Boughton, C. K., Wilinska, M. E., Hartnell, S., Thankamony, A., de Beaufort, C., Schierloh, U., Fröhlich-Reiterer, E., & Mader, J. K. (2022). Randomized trial of closed-loop control in very young children with type 1 diabetes. New England Journal of Medicine, 386(3), 209-219.
18. Wersäll, J. H., Adolfsson, P., Forsander, G., Ricksten, S. E., & Hanas, R. (2021). Delayed referral is common even when new‐onset diabetes is suspected in children. A Swedish prospective observational study of diabetic ketoacidosis at onset of Type 1 diabetes. Pediatric diabetes, 22(6), 900-908.
19. Wu, N., Bredin, S. S., Guan, Y., Dickinson, K., Kim, D. D., Chua, Z., Kaufman, K., & Warburton, D. E. (2019). Cardiovascular health benefits of exercise training in persons with type 1 diabetes: a systematic review and meta-analysis. Journal of Clinical Medicine, 8(2), 253.
Article Sidebar
Article Details
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.
All articles published in JPTCP are licensed under Copyright Creative Commons Attribution-NonCommercial 4.0 International License.
Dr. Joe Cornel Nelson
Doctor of Social Work/Professor, Department of Human Services, Bluegrass Community and Technical College, Lexington, KY, United States
Shagufta Munir
Nursing Officer, Department of Nursing, Tehsil Headquarter Hospital Sillanwali, Sargodha, Pakistan
Sahil Kumar
Postgraduate Trainee (IM), Department of Internal Medicine, GMMMC Sukkur, Pakistan
Nosheen Akhtar
Univeristy Nursing College, University of Sargodha, Pakistan,
Sana Kainat
ANMCH, Isra University (Al-Nafiees Medical College and Hospital), Rawalpindi, Pakistan