Análise da qualidade de vida de adolescentes com paralisia cerebral na APAE Goiânia: perspectiva dos cuidadores

Abstract

Introduction: Cerebral palsy (CP) is a disease that occurs in the central nervous system (CNS) in the structural and functional maturation phase that may occur in the pre, peri or postnatal period, interfering with normal motor development kid. There are two concepts for quality of life (QoL) in the health area, we will address the Quality of Life Related to Health (HRQoL), which implies aspects directly associated with diseases or health interventions. The QoL of individuals with CP is difficult to measure. The Child Health Questionnaire - Parents' Report 50 makes it possible to assess this aspect from the perspective of parents and / or caregivers. Objective: To identify the HRQoL of adolescents with CP in the face of the disease and the consequences of the disease, under the perception of parents and / or caregivers. Methodology: A descriptive study, developed at APAE Complexo II / CER II, located in Goiânia / GO. As a collection instrument, the Child Health Questionnaire - Parents Report 50 (CHQ-PF50) was applied, with (20) twenty parents and / or caregivers of adolescents diagnosed with PC and who signed the Free and Informed Consent Form (TCLE). For the data analysis we used the Microsoft Access and SPSS - Statistical Package for Social Sciences for Windows version 15.0. Results: The survey found that about 60% of parents and / or caregivers consider the adolescent very satisfied with their appearance, abilities, family relationships, and life in general. However, 75% perceived as poor the overall health of their children, with worsening health compared to a year ago, presenting pictures of: severe physical pain, limitation in the performance of functional activities, school, and emotional aspects such as aggressiveness, immaturity, feeling of anxiety and depression. Besides being considered a cause of limitation in the personal activities of caregivers and family tension. Conclusion: Dissemination of the differentiated profile of HRQoL among adolescents with cerebral palsy is the first step in the development of strategies to prioritize this vulnerable group.