Epidermólise bolhosa: atualização sobre cuidados prestados por Enfermeiros e seus desafios

Abstract

INTRODUCTION: this study addresses Epidermolysis Bullosa (EB), a rare and incurable genetic disease that severely impacts patients’ quality of life. The research focuses on the care provided by Brazilian nurses in hospital settings, highlighting the challenges faced and the technologies available for managing this condition. OBJECTIVE: to identify the strategies used by nurses in caring for patients with EB in Brazilian institutions and the challenges they face in delivering care. METHOD: the research is a narrative literature review on nursing care strategies for patients with EB in the Brazilian context. The study was conducted using the following databases: Virtual Health Library (VHL), Latin American and Caribbean Health Sciences Literature (LILACS), and Scientific Electronic Library Online (SciELO), employing the following descriptors: “Epidermolysis Bullosa” AND “Care” OR “Strategies” OR “Treatment.” Full articles addressing care strategies, technologies used, and challenges faced by professionals were included, while experience reports, theses, and duplicate articles were excluded. RESULTS: the research identified gaps in professional training, highlighting a lack of specific preparation for managing patients with EB. The analyzed studies emphasized the importance of adopting technologies, such as specialized dressings, to prevent complications and minimize pain. The lack of standardized protocols and the high costs of materials were also identified as significant barriers. CONCLUSION: the study concluded that nurses play a vital role in caring for patients with EB, making it essential to invest in professional training, improve access to technologies, and integrate multidisciplinary teams. These actions are necessary to overcome the challenges faced and provide more effective and humanized care, thereby improving patients’ quality of life.