Lived experiences of Type 1 diabetes patients visiting a tertiary care hospital of Nepal: A descriptive phenomenological study

Type 1 diabetes is a non-preventable chronic disease that predominantly affects young people, accounting for 10-15% of all diabetes cases. The condition is multidimensional, affecting various aspects of life, and daily living requires consistent effort, lifestyle modification, and close monitoring. This study aimed to explore the lived experiences of patients with Type 1 diabetes attending the outpatient department of Patan Hospital, focusing on their perspectives on living with the disease condition. A descriptive phenomenological research design was used for the study. Data were collected from 22 purposively selected patients who attended the Medicine and Pediatrics Outpatient Department (OPD) of Patan Hospital. Patients aged 15 years and above, with at least one year since initial diagnosis, were included in the study. Colaizzi's descriptive phenomenological method was used for data analysis. Ten themes emerged from the analysis: (1) Initial hospitalization (2) Solidarity in illness and support systems (3) Learning process and acceptance (4) Changes and adjustments (5) Diabetes management challenges (6) Concerns and worries (7) Socioeconomic and structural challenges (8) Healthcare experiences (9) Type 1 diabetes-related stigma (10) Experiences of living with Type 1 diabetes during the COVID-19 pandemic. The study highlights a lack of awareness in the community on Type 1 diabetes, experiences of stigma were also reported by the participants. It also emphasizes the need for regular parental counseling to prevent overprotection. Financial burden appeared as a significant challenge in the study. The study further suggests that authorities ensure access to insulin and other essential medical supplies during lockdowns, as participants reported difficulties in obtaining them. School-related difficulties point towards the importance of effective implementation of the "School Health Nurse" program. These findings indicate the need for greater awareness, psychological support, and healthcare preparedness to improve the quality of life of individuals living with Type 1 diabetes.