CHALLENGES IN TECHNICAL CARE AND EMOTIONAL SUPPORT IN NURSING CARE FOR CHILDREN WITH EPIDERMOLYSIS BULLOSA IN PEDIATRIC UNITS

Abstract

Epidermolysis bullosa is a rare genetic disorder characterized by extreme skin fragility, compromising its resistance and leading to the development of blisters and lesions after minimal trauma. In this context, nursing plays a fundamental role in providing specialized care and addressing the clinical needs of these patients. This study aimed to identify, analyze, and synthesize the scientific evidence regarding the technical and emotional challenges faced by nursing professionals in the care of children with epidermolysis bullosa in pediatric hospital settings. This is a systematic literature review with a qualitative and descriptive approach, based on the analysis of scientific articles published between 2021 and 2026, selected from the Virtual Health Library (VHL), Scientific Electronic Library Online (SciELO), and Google Scholar databases. The findings revealed that the main technical challenges are related to the management of skin lesions, the performance of atraumatic wound dressings, pain control, infection prevention, and the lack of standardized clinical care protocols. Difficulties arising from limited material resources and the need for specialized professional training were also identified. It is concluded that caring for children with epidermolysis bullosa requires specialized technical and scientific knowledge, continuing education, emotional support, and a multidisciplinary approach. Furthermore, the implementation of evidence-based protocols is essential to improve the quality of care, enhance patient safety, and promote a better quality of life for patients and their families.