Experience of Burden in Self-Care of Type 2 Diabetes Mellitus: A Qualitative Study in Indonesian Context
DOI:
https://doi.org/10.31674/mjn.2025.v16i04.004Abstract
Background: Effective management of Type 2 Diabetes Mellitus (T2DM) depends on self-care practices, including lifestyle modifications, dietary management, and medication adherence. However, in rural Indonesian populations, these practices are often hindered by limited healthcare access, low health literacy, and sociocultural barriers, resulting in diverse and complex patient experiences. Methods: This qualitative study used a phenomenological approach to explore the lived experiences of T2DM patients in rural Indonesia. Participants were recruited through snowball sampling, starting with initial referrals from local healthcare workers. A total of 25 participants (15 females and 10 males) were included. Semi-structured interviews were conducted to investigate self-care practices, challenges, and support systems. Data were analysed using the Colaizzi method to systematically identify key themes and subthemes. Results: Three main themes emerged: (1) Knowledge and Health Literacy, highlighting significant gaps in understanding and low literacy levels among participants; (2) Emotional Impact, encompassing anxiety, diabetes-related distress, and efforts to maintain well-being; and (3) Influencing Factors in Self-Care, such as adherence to treatment, barriers to healthcare access, cultural influences, and the role of family and social support. Participants faced substantial challenges managing their condition, underscoring the need for improved education and tailored support systems. Conclusion: This study highlights the need for culturally sensitive interventions and enhanced education to improve Type 2 Diabetes Mellitus (T2DM) management in rural Indonesia. Addressing emotional well-being, health literacy, and healthcare barriers is essential. Family involvement and community-based support can foster sustainable self-care practices and improve diabetes outcomes.
Keywords:
Cultural Barriers, Health Literacy, Indonesia, Qualitative Study, Rural Population, Self-Care, Type 2 Diabetes MellitusDownloads
References
Agidew, E., Wale, M. Z., Kerebih, H., Yirsaw, M. T., Zewdie, T. H., Girma, M., & Miskir, A. (2021). Adherence to diabetes self-care management and associated factors among people with diabetes in Gamo Gofa Zone public health hospitals. SAGE Open Medicine, 9. https://doi.org/10.1177/20503121211053953
Alshammari, M., Windle, R., Bowskill, D., & Adams, G. (2021). The Role of nurses in diabetes care: a qualitative study. Open Journal of Nursing, 11(08), 682–695. https://doi.org/10.4236/ojn.2021.118058
Atlas, C. (2019). Indonesian Culture-Family. Repéré le, 2. Retrieved from: https://culturalatlas.sbs.com.au/indonesian-culture/indonesian-culturefamily. Accessed on 18th February, 2023.
Azeem, S., Khan, U., & Liaquat, A. (2022). The increasing rate of diabetes in Pakistan : A silent killer. Annals of Medicine and Surgery, 79. https://doi.org/10.1016/j.amsu.2022.103901
Bayhakki, Hatthakit, U., & Thaniwatthananon, P. (2019). Self-caring in islamic culture of muslim persons with esrd and hemodialysis: an ethnographic study. Enfermeria Clinica, 29(xx), 38–41. https://doi.org/10.1016/j.enfcli.2018.11.015
Berkoh, D. A., Owiredu, W. B. K. A., Gyasi, S. F., Donkoh, E. T., & Ngala, R. A. (2022). Factors associated with noncompliance to diabetes medication in a rapidly urbanizing region in Ghana : A mixed-methods study. Porto Biomedical Journal, 7(3), 1–6. https://doi.org/10.1097/j.pbj.0000000000000148
Bingham, J. M., Black, M., Anderson, E. J., Li, Y., Toselli, N., Fox, S., Martin, J. R., Axon, D. R., & Silva-Almodóvar, A. (2021). Impact of telehealth interventions on medication adherence for patients with type 2 diabetes, hypertension, and/or dyslipidemia: A systematic review. Annals of Pharmacotherapy, 55(5), 637–649. https://doi.org/10.1177/1060028020950726
Bogale, E. K., Wondiye, H., Debela, Y., Fentabil Anagaw, T., Worku, L., & Kebede, N. (2022). Self-care practice, lived experience of type 1 diabetes mellitus patients at Kemisse General Hospital, North Eastern Ethiopia: Phenomenological study. SAGE Open Medicine, 10. https://doi.org/10.1177/20503121221126862
Burleson, J., Stephens, D. E., & Rimal, R. N. (2025). Adherence definitions, measurement modalities, and psychometric properties in hiv, diabetes, and nutritional supplementation studies: a scoping review. Patient Preference and Adherence, 19, 319–344. https://doi.org/10.2147/PPA.S498537
Celik, S., Olgun, N., Yilmaz, F. T., Anataca, G., Ozsoy, I., & Ciftci, N. (2022). Assessment the effect of diabetes education on self ‑ care behaviors and glycemic control in the Turkey Nursing Diabetes Education Evaluating Project ( TURNUDEP ): A multi ‑ center study. BMC Nursing, 1–9. https://doi.org/10.1186/s12912-022-01001-1
Creswell, W. J., & Creswell, J. D. (2018). Research Design: Qualitative, Quantitative adn Mixed Methods Approaches, vol. 53, no. 9. 2018.[Online]. SAGE Publication, USA. Retrieved from: https://spada.uns.ac.id/pluginfile.php/510378/mod_resource/content/1/creswell.pdf . Accessed on 10th March, 2023.
Cresswell, J. (2013). Qualitative inquiry & research design: Choosing among five approaches. Retrieved from: https://revistapsicologia.org/public/formato/cuali2.pdf. Accessed on 17th July, 2023.
Creely, E. (2018). ‘Understanding things from within’. A husserlian phenomenological approach to doing educational research and inquiring about learning. International Journal of Research & Method in Education, 41(1), 104-122. https://doi.org/10.1080/1743727X.2016.1182482
Diane, A., Ali, N., Shukri, A., Bin, R., Mu, A., & Siddiqi, H. H. Al. (2022). β ‑ cell mitochondria in diabetes mellitus : A missing puzzle piece in the generation of hPSC ‑ derived pancreatic β ‑ cells ? Journal of Translational Medicine, 5, 1–10. https://doi.org/10.1186/s12967-022-03327-5
Eliza, E., Sumarman, S., Yunianto, A. E., & Fadly, D. (2022). Nutrition education regarding the glycemic index on the knowledge of patients with diabetes mellitus. Open Access Macedonian Journal of Medical Sciences, 10(E), 1174–1177. https://doi.org/10.3889/oamjms.2022.9986
Enggarwati, P., Dahlia, D., & Maria, R. (2022). Social support as a mediator between depressive symptoms and self-care activities in adults patient with type 2 diabetes mellitus. Journal of Public Health Research, 11(2), jphr-2021. https://doi.org/10.4081/jphr.2021.2734
Franquez, R. T., de Souza, I. M., & de Cássia Bergamaschi, C. (2023). Interventions for depression and anxiety among people with diabetes mellitus: Review of systematic reviews. PLoS One, 18(2 February), 1–13. https://doi.org/10.1371/journal.pone.0281376
Goins, R. T., Grant, M. K., Conte, K. P., & Lefler, L. (2022). Social support and diabetes management among Older American Indians. Front. Public Health, 10, 1–10. https://doi.org/10.3389/fpubh.2022.780851
Gupta, S., Fischer, J., Roy, S., & Bhattacharyya, A. (2024). Emotional regulation and suicidal ideation—Mediating roles of perceived social support and avoidant coping. Frontiers in Psychology, 15. https://doi.org/10.3389/fpsyg.2024.1377355
Huang, K. (2024). Nursing interventions of nurse-led health education for diabetes patients: To promote self-care (Bachelor’s thesis). Jamk University of Applied Sciences. Retrieved from: https://urn.fi/URN:NBN:fi:amk-202404197012, Accessed on 28th August, 2024.
Indrayana, S., Guo, S. E., Lin, C. L., & Fang, S. Y. (2019). Illness perception as a predictor of foot care behavior among people with type 2 diabetes mellitus in Indonesia. Journal of Transcultural Nursing, 30(1), 17–25. https://doi.org/10.1177/1043659618772347
Leslie Kolb, R. A. (2020). An effective model of diabetes care and education: revising the aade7 self-care behaviors®. Diabetes Educator, 46(2), 139–160. https://doi.org/10.1177/0145721719894903
Liang, W., Chow, K. M., Ni, X., Tola, Y. O., & Lo, S. H. S. (2024). Development, feasibility, and preliminary effects of a culturally adapted, evidence-based, and theory-driven diabetes self-management programme for Chinese adults with type 2 diabetes receiving insulin injection therapy. Primary Care Diabetes, 18(6), 649-659. https://doi.org/10.1016/j.pcd.2024.09.010
Lu, X., Yang, D., Liang, J., Xie, G., Li, X., Xu, C., Liao, H., Zhou, H., Xu, Z., Ye, C., Chen, H., Liang, M., Shen, Q., Sun, T., Hu, Y., Zhang, W., & Ning, Y. (2021). Effectiveness of intervention program on the change of glycaemic control in diabetes with depression patients: A meta-analysis of randomized controlled studies. Primary Care Diabetes, 15(3), 428–434. https://doi.org/10.1016/j.pcd.2021.01.006
Lukman, N. A., Leibing, A., & Merry, L. (2020). Self-care experiences of adults with chronic disease in indonesia: An integrative review. International Journal of Chronic Diseases, 2020, 1–17. https://doi.org/10.1155/2020/1379547
Misra, R., Adelman, M. M., Kirk, B., & Sambamoorthi, U. (2022). Relationship among diabetes distress, health literacy, diabetes education, patient-provider communication and diabetes self-care. American Journal of Health Behavior, 46(5), 528-540. https://doi.org/10.5993/AJHB.46.5.4
Molla, I. B., Berhie, M. A., Germossa, G. N., & Hailu, F. B. (2022). Perceived social supports and associated factors among diabetes mellitus patients. Journal of Diabetes & Metabolic Disorders, 21(2), 1651–1659. https://doi.org/10.1007/s40200-022-01116-x
Mutyambizi, C., Pavlova, M., Hongoro, C., & Groot, W. (2020). Inequalities and factors associated with adherence to diabetes self-care practices amongst patients at two public hospitals in Gauteng, South Africa. BMC Endocrine Disorders, 20(1), 1–10. https://doi.org/10.1186/s12902-020-0492-y
Orem, D. E., Taylor, S. G., & Renpenning, K. M. (2001). Nursing: Concepts of practice (6th ed). Mosby, St. Louis, United States. Retrived from: https://search.worldcat.org/title/Nursing-:-concepts-of-practice/oclc/45103042. Accessed on 28th August 2024.
Onyango, J. T., Namatovu, J. F., Besigye, I. K., Kaddumukasa, M., & Mbalinda, S. N. (2022). The relationship between perceived social support from family and diabetes self-management among patients in Uganda. Pan African Medical Journal, 41(1). https://doi.org/10.11604/pamj.2022.41.279.33723
Oser, T. K., Oser, S. M., Parascando, J. A., Hessler-jones, D., Sciamanna, C. N., Sparling, K., Jr, D. N., Litchman, M. L., Hessler-jones, D., & Sparling, K. (2020). Social media in the diabetes community : A novel way to assess psychosocial needs in people with diabetes and their caregivers. Current Diabetes Reports, 20(10), 1–10. https://doi.org/10.1007/s11892-020-1294-3
Paudel, G., Dahal, K., Biswas, T., & Sugishita, T. (2022). Self-care behaviours among people with type 2 diabetes mellitus in South Asia : A systematic review and meta-analysis. 12. https://doi.org/10.7189/jogh.12.04056
Polit, D. F., & Beck, C. T. (2021). Nursing research: Generating and assessing evidence for nursing practice. Wolters Kluwer. United States. Retrieved from: https://shorturl.at/GjLGv. Accessed on 28th August, 2024.
Pourhabibi, N., Mohebbi, B., Sadeghi, R., Shakibazadeh, E., Sanjari, M., Tol, A., & Yaseri, M. (2022). Determinants of Poor treatment adherence among patients with type 2 diabetes and limited health literacy: a scoping review. Journal of Diabetes Research, 2022. https://doi.org/10.1155/2022/2980250
Queirós, P. J. P., Vidinha, T. D. S., & Almeida Filho, A. J. (2014). Self-care: Orems theoretical contribution to the nursing discipline and profession. Revista de Enfermagem [internet], 4(3), 157-63. http://dx.doi.org/10.12707/RIV14081
Sabarathinam, S. (2023). A glycemic diet improves the understanding of glycemic control in diabetes patients during their follow-up. Future Science OA, 9(3). https://doi.org/10.2144/fsoa-2022-0058
Schubert, K. H. (2024). Supporting patients with diabetes’ disease management through improved presentations of test results: A qualitative study (Master’s thesis). Aalborg University, Department of Planning. Rertieved from: https://vbn.aau.dk/ws/files/718956391/TAN10_KHS_FINAL.pdf, Accessed on 22nd July, 2024.
Seidu, S., Cos, X., Brunton, S., Harris, S. B., Jansson, S. P. O., Mata-Cases, M., Neijens, A. M. J., Topsever, P., & Khunti, K. (2022). 2022 update to the position statement by Primary Care Diabetes Europe: A disease state approach to the pharmacological management of type 2 diabetes in primary care. Primary Care Diabetes, 16(2), 223–244. https://doi.org/10.1016/j.pcd.2022.02.002
Sinclair, A. J., Abdelhafiz, A. H., Summerbell, A. M., Cukierman‐Yaffe, T., Wylie, S. L., Muzulu, S., ... & Si, P. E. H. (2025). Special Issues in old age: Frailty. Care of Older People with Diabetes: A Manual for Healthcare Practice, 241-403. https://doi.org/10.1002/9781394205066.ch16
Sinclair, A. J., Abdelhafiz, A. H., Summerbell, A. M., Cukierman‐Yaffe, T., Wylie, S. L., Muzulu, S., ... & Si, P. E. H. (2025). Special issues in old age: frailty. Care of Older People with Diabetes: A Manual for Healthcare Practice, 241-403. https://doi.org/10.1002/9781394205066.ch16
Speziale, H. S., Streubert, H. J., & Carpenter, D. R. (2011). Qualitative research in nursing: Advancing the humanistic imperative (5th ed.). Lippincott Williams & Wilkins, USA.
van der Gaag, M., Heijmans, M., Spoiala, C., & Rademakers, J. (2022). The importance of health literacy for self-management: a scoping review of reviews. Chronic Illness, 18(2), 234-254. https://doi.org/10.1177/17423953211035472
Vitale, R. J., Wentzell, K., & Laffel, L. M. (2022). “Fear that one day i may not be able to afford insulin”: The emotional burden of diabetes costs during emerging adulthood. Diabetes Technology & Therapeutics, 24(12), 915-919. https://doi.org/10.1089/dia.2022.0170
Yoon, S., Kwan, Y. H., Phang, J. K., Tan, W. B., & Low, L. L. (2022). Personal goals, barriers to self-management and desired mhealth application features to improve self-care in multi-ethnic asian patients with type 2 diabetes: a qualitative study. International Journal of Environmental Research and Public Health, 19(22), 1–13. https://doi.org/10.3390/ijerph192215415
Zeynali, M., Alipour, K., Tarvirdizadeh, B., & Ghamari, M. (2025). Non-invasive blood glucose monitoring using PPG signals with various deep learning models and implementation using TinyML. Scientific Reports, 15(1), 1–23. https://doi.org/10.1038/s41598-024-84265-8
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