Lived experiences of children with type 1 diabetes mellitus and their parents: a qualitative descriptive study from eastern India

Objectives This study explores the lived experiences of children with type 1 diabetes mellitus (T1DM) and their parents, focusing on the physical, emotional and social challenges they encounter. Design Qualitative descriptive study with a phenomenological orientation. Setting The study was conducted in the outpatient endocrinology unit of a tertiary hospital in eastern India. Participants Twelve children aged 10–19 years living with T1DM for at least 1 year and their parents were selected through purposive sampling and interviewed. Results Five key themes emerged from parents’ narratives: physical and emotional toll of T1DM on children; emotional turmoil and the initial shock; challenges in diabetes management; navigating relationships amidst diabetes and balancing hopes and uncertainties with diabetes. From the children’s accounts, three themes were identified: enduring the strain: the physical and emotional toll with diabetes; coping mechanisms and adaptation to life with diabetes and social hurdles and future hopes with diabetes. Conclusions Children with T1DM and their parents face multidimensional challenges in managing the condition. Holistic interventions that address emotional, financial and social aspects of care are essential. Strengthening support systems for both children and families is crucial for improving quality of life and coping mechanisms.