Children and adolescents with cerebral palsy: Analysis of care longetudinality

Abstract

Objective: to analyze the longitudinality of care perceived by caregivers of children and adolescents with cerebral palsy. Method: qualitative and descriptive investigation, performed with 27 caregivers, through interviews, analyzed using the thematic analysis technique based on Care Longitudinality. Results: the need of extreme dedication of the caregivers to the care of their children and adolescents with cerebral palsy was highlighted with the need to abandon their free time, daily activities and the abandonment of the professional activities. As the child grows, the complexity of daily activities increases and, consequently, the pronouncement of the difficulties experienced by the families. The statements demonstrate the absence / lack of formal responses from the State to the needs of care of the studied population, a condition that helps to naturalize this support as family responsibility. They indicate the inexistence of articulated care network for this population, implying the discontinuity of care among services which impacts on the quality of life of children and their families. Conclusion: the lack of articulation between services implies discontinuity of health care, deteriorating the quality of life of children and their families and negatively impacting on the health outcomes of the health care system, since there is an inefficient use of resources. The establishment of care and the way it given is an inseparable component of care services management responsible for guaranteeing equity and integrality of the research.