Profile of mother of children with Duchenne Muscular Dystrophy

• Grant number: 12/08587-8
• Support Opportunities: Scholarships in Brazil - Master
• Start date: March 01, 2013
• End date: July 31, 2014
• Field of knowledge: Health Sciences - Medicine
• Principal Investigator: Monica Levy Andersen
• Grantee: Karen Tieme Nozoe
• Host Institution: Escola Paulista de Medicina (EPM). Universidade Federal de São Paulo (UNIFESP). Campus São Paulo. São Paulo , SP, Brazil

Abstract

The Duchenne Muscular Dystrophy (DMD) is a neuromuscular disease characterized by genetic alteration, whose consequence is the progression of muscle degeneration. The incidence of this disease is approximately 1 in 3.500 male newborns. During its progression there is loss of mobility, swallowing difficulties and a significant reduction in respiratory capacity. Due to the severity and consequences, is inevitable the need for a caregiver, that normally rely the mother. This mother-caregiver dedicates herself entirely to her son, putting aside the care of their physical and psychological health. The responsibility and workload to care for the child is high. Because of this extreme amount of work associated with other factors such as stress, this mothers-caregivers are more likely to develop hypertension, respiratory disease, susceptibility to infections, depression, anxiety, insomnia, impaired immune and cardiovascular problems. Moreover, they are more likely to develop sleep disorders, those who may cause a high health risk, since many sleep disorders are related to cardiovascular, respiratory, neurological and immune systems. The objective of this study will evaluate the physical and psychological health of mothers caring for children and adolescents with DMD. It will be also included a control group of mothers with children with any sleep disorder, but that is not due to any kind of neuromuscular disease or chronic disease (bronchiolitis obliterans, cystic fibrosis, a genetic syndrome). In both groups of mothers will be assessed the sleep patterns, immunologic parameters, inflammatory, metabolic, cardiovascular, hormonal, menstrual cycle, sexuality, pain threshold, mood, anxiety, stress, skin, nutritional status and quality of life. Analyze the effects caused by the work of caregivers can provide a significant contribution in the lives of these mothers, as more attention and care.