O olhar do cuidador na paraplegia ou quadriplegia: desvendando a saúde e a qualidade de vida.

Abstract

The Statute of Children and Adolescents along the National Health Policy of Disabled Person ensure specialized care to children and adolescents with disabilities. Thus, the objective of this research is: grasp the impact of disability on health and quality of life of children and / or adolescents with paraplegia or quadriplegia, from the perspective of caregivers. The literature review of this research is subdivided into two chapters, namely: historical review on health and quality of life programs and policies; and the barriers of disability: disclosing paraplegia and quadriplegia. It is methodologically anchored in an exploratory, descriptive study with a qualitative approach, the sample followed the criterion of saturation and the sample was based on convenience. This study was conducted with 12 caregivers of children and / or adolescents with paraplegia or quadriplegia registered and users of the Integrated Center for Support Person Foundation services with Disabilities in the city of João Pessoa, Paraíba, selected from the inclusion and exclusion criteria. As a tool for data collection, we used the interview direct approach, led by a semi-structured. Because it is a study involving human subjects, it was submitted to the Ethics Committee of the University Hospital Research Alcides Carneiro, for analysis and opinion in accordance with what is established by Resolution 466/12 of the National Health Council under the CAAE Nº 40571215.0.0000.5182. From the results emerged six thematic categories, which are: Unraveling the health of children and adolescents with paraplegia or quadriplegia from the perspective of caregivers; Identifying the positive factors of disability in the health of children and adolescents with paraplegia or quadriplegia by caregivers; Knowing the negative factors of disability in the health of children and adolescents with paraplegia or quadriplegia for caregivers; Understanding caregivers insight into quality of life in physical disability of children and adolescents with paraplegia or quadriplegia; Checking the contributing factors of disability in the quality of life of children and adolescents with paraplegia or quadriplegia in the light of caregivers and; Revealing the aggravating factors of disability on quality of life of children and adolescents with paraplegia or quadriplegia by caregivers. Also identified in the second, the third, the fifth and sixth category corresponding subcategories. Before the data analyzed is evident the important contribution of this research in the process of care, since care is inherent to the human being as a response to meet their needs as well as the perception and the caregiver role in addressing the health and quality life of beings care.