Experiences of mothers in the care of children and adolescents with epidermolysis bullosa

Abstract Objective to know and analyze mothers’ experiences in caring for children adolescents with Epidermolysis Bullosa. Method a descriptive qualitative study was developed ten mothers of epidermolysis bullosa from different regions Brazil using semi-structured interviews recorded remotely Google Meet® between September November 2021. The thematic analysis technique guided the appreciation empirical material. Results aged 23 53 years participated study. Two categories translate maternal experience: i) “shock” diagnosis initial challenges ii) “Stop living live them”: changes families’ daily life. Final considerations implications practice experienced fear insecurity when their child diagnosed, care routine, especially dressing changes, caused physical emotional burden. These results can support follow-up these families provide them tools support.