Peer-reviewed article
Living on fragile skin: the lived experiences of children with epidermolysis bullosa.
Tuna P, Karakul A, Külcü DP ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This qualitative study explored how 10 children aged 6-18 years with Epidermolysis Bullosa (EB), a rare genetic skin condition, experience their illness and daily lives. Children reported that EB affects not only their physical health but also their emotional well-being, social relationships, school participation, and sense of independence. Key challenges included pain from wound care, emotional distress, social isolation, dependency on caregivers, and difficulty maintaining normal childhood activities. The study concludes that children with EB need holistic care addressing both physical symptoms and psychological and social support.
Key points
- EB impacts multiple dimensions of children's lives: physical, emotional, social, and developmental
- Children experience pain, wound care challenges, emotional burden, and social isolation
- EB disrupts school participation, peer relationships, and normal childhood experiences
- Children struggle with feelings of restriction, fear, and frustration related to their condition
- Family support and caregiver dependency are central to children's daily management of the disease
Limitations
This is a small qualitative study with 10 children in one hospital setting in Turkey, so findings may not generalise to all children with EB or different healthcare contexts. The study describes experiences but does not evaluate interventions or provide comparative evidence about what helps children cope.
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.