Degree of functionality of children with myelomeningocele and the burden on their informal caregivers

• Grant number: 23/05801-3
• Support Opportunities: Scholarships in Brazil - Scientific Initiation
• Start date: April 01, 2024
• End date: July 19, 2025
• Field of knowledge: Health Sciences - Medicine
• Principal Investigator: Alessandra Mazzo
• Grantee: Fernanda Petrini Rodrigues das Neves
• Host Institution: Faculdade de Medicina. Universidade de São Paulo (USP). Campus Bauru. Bauru , SP, Brazil
• Associated scholarship(s): 24/14911-0 - Distracting factors for collaborative clinical reasoning in interprofessional work, BE.EP.IC

Abstract

Introduction: Myelomeningocele (MMC) is a congenital malformation caused by incomplete closure of the neural tube, leading to the protrusion of the spinal cord through an opening in the vertebral column. Depending on the level of the lesion, motor, cognitive, and sensory disabilities can result in a decrease in functionality. Defining a patient's functional level can contribute to the delineation of appropriate interventions, both for the patient and for their social environment, such as their caregiver. The caregiver is the one who provides care for those with limitations in their daily activities. The intensity of care required of them can result in harmful levels of burden. Objective: This study seeks to relate the degree of functionality of children with myelomeningocele and the burden of their informal caregivers. Methods and materials: This study will be conducted in a rehabilitation unit in the interior of the state of São Paulo with children with MMC between 0 and 12 years old and their informal caregivers. Data collection will be conducted, after due consent, through characterization instruments, the PEDI-CAT questionnaire, which measures pediatric functional development, and the QASCI questionnaire, which evaluates the burden on informal caregivers. The data obtained will be analyzed according to the authors' proposal and discussed based on the literature. Expected results: It is expected to obtain a relationship between the functionality of the child with MMC and the burden on their informal caregiver, speculating that the more compromised the functionality, the greater the burden.