Abstract
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.
Highlights
Chronic illness is a condition that lasts for a long time and causes limitations and incapacity in a progressive way, impacting the patient, the family, the society and interferes with public policies because it represents a complex clinical condition that generates high costs.[1]
Cerebral palsy is classified as a physical disability in children and is strongly associated with public health issues and is characterized by the presence of multiple disabilities and different levels of dependency.[2,3]
Caregivers were questioned about the type of relationship they had with the child or adolescent and about the health services that were established after the birth of the child with cerebral palsy
Summary
Chronic illness is a condition that lasts for a long time and causes limitations and incapacity in a progressive way, impacting the patient, the family, the society and interferes with public policies because it represents a complex clinical condition that generates high costs.[1]. The health care of this population is guided by a logic of offering services that reduce mortality rates. Caring for these children demands a complex and long-term actions, since most have multiple chronic diseases and require different care according to their development. Primary care is the most appropriate attention for the implementation of care for this population.[4]
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