Role of Pediatric Nurses in the Long-Term Management of Osteogenesis Imperfecta

Abstract

Pediatric nurses play a crucial role in the long-term management of Osteogenesis Imperfecta (OI), a genetic disorder characterized by brittle bones that fracture easily. These nursing professionals are responsible for the comprehensive care of children with OI, encompassing education, care coordination, and emotional support for both patients and their families. They assess the child’s physical condition, monitor for potential complications, and implement individualized care plans that address specific needs. This includes facilitating regular check-ups, promoting safe mobility practices, and educating families about fracture prevention strategies, nutrition, and medication management. Pediatric nurses also serve as advocates for their patients, collaborating with multidisciplinary teams to ensure that children receive holistic care tailored to their physical and psychosocial needs. In addition to clinical responsibilities, pediatric nurses play a pivotal role in providing emotional support and psychological counseling to children living with OI and their families. They help foster a positive environment by encouraging children to participate in age-appropriate activities and social interactions while managing their condition. By offering guidance on coping strategies and resources, pediatric nurses empower families to navigate the unique challenges posed by OI. Furthermore, they stay updated on the latest research and advancements in OI management, allowing them to offer evidence-based care and support that can enhance the quality of life for children affected by this condition.

Keywords

• Pediatric nurses, Osteogenesis Imperfecta, long-term management, brittle bones, care coordination, education, fracture prevention, emotional support, multidisciplinary teams, evidence-based care