Abstract
Purpose
This study aimed to explore the lived experiences of children diagnosed with Epidermolysis Bullosa (EB) regarding their illness and treatment processes.Design and methods
A phenomenological qualitative research design was employed. The study was conducted with 10 children aged 6-18 years diagnosed with EB and followed in the Home Healthcare Services Unit of Tarsus State Hospital. Data were collected through a sociodemographic information form and semi-structured in-depth interviews. Interviews were audio-recorded, transcribed verbatim, and analysed using thematic analysis with MAXQDA software.Results
Five main themes emerged: (1) diagnosis and onset of disease, (2) physical limitations and daily life, (3) emotional dimensions of living with the disease, (4) social life and relationships, and (5) family support and caregiving experience. Children described EB as a condition affecting not only their physical health but also their emotional well-being, social participation, school life, and sense of independence. Themes reflected experiences related to pain and wound care, emotional burden, social isolation, dependency on caregivers, treatment challenges, and difficulties in peer relationships and school participation. Children also described feelings of restriction, fear, frustration, and a struggle to maintain normal childhood experiences despite chronic illness.Conclusion
Children with EB experience multidimensional challenges extending beyond physical symptoms. EB significantly affects children's emotional, social, and developmental experiences and may disrupt participation in normal childhood activities.Practice implications
Pediatric nurses should provide holistic and child-centered care addressing psychosocial well-being in addition to wound management. Interventions supporting emotional coping, school adaptation, family support, and social participation may improve the quality of life of children with EB.