Abstract
ABSTRACTObjective:To investigate the relationship of family management with sociodemographic and physical dependence aspects of children and adolescents with neurological impairment. Method:Descriptive, cross-sectional study conducted at a child neurology center. A non-probabilistic sample was obtained from 141 family members who answered two instruments: a) Sociodemographic condition of families; b) Family Management Measure. In the statistical analysis, we used the Spearman Coefficient and the Mann Whitney Test. Results:the longer the specialized care time, the lower the identity score (rs = - 0.209, p = 0.01); the higher the effort score (rs = 0.181, p = 0.03), the family difficulty score (rs = 0.239, p = 0.001) and the impact of the disease on family life (rs = 0.213, p = 0.01). The families of children and adolescents with physical dependence for activities of daily living presented a higher score in the following dimensions: management effort (<0.001), family difficulty (p = 0.004) and perception of disease impact (p = 0.001). Conclusion:There was evidence of a correlation between management with sociodemographic and child dependence aspects, with an association between management difficulty and longer time of child and adolescent care.
Highlights
Neurological disease in children and adolescents is a worldwide reality[1,2,3]
The following research question was defined: Is the family management of children and adolescents with neurological impairment related to the sociodemographic and physical aspects of children and adolescents? And the following objective was drawn for this research: To investigate the relationship of family management with sociodemographic and physical dependence aspects of children and adolescents with neurological disorders. This is a descriptive, cross-sectional study with a quantitative approach, delimited by the participation of 141 family members of children and adolescents with neurological diseases, attended at a Child Neurology Center of the Unified Health System, located in a state of southern region of Brazil. This Center is a reference at the state and provides care in several subspecialties: Autism Spectrum Disorder (ASD), Encephalopathy, Epilepsy, Recent Epilepsy, Cerebral Palsy (CP), Premature and Risk Newborn, Febrile Seizure, General Neuropediatrics, Headache and Child and Adolescent Psychiatry
In the evaluation of physical dependence in the ADL, we considered those related to the physical condition associated with the disease, and not to the phase of the child/adolescent’s development
Summary
Neurological disease in children and adolescents is a worldwide reality[1,2,3]. A retrospective study estimated that in the United States approximately 11% of the 960,020 hospitalizations of children aged 29 days to 19 years presented a neurological disease[4]. In 2013, it was found that 1.3% of 200.6 million people presented physical restraint, of which 0.3% had occurred since birth and 1% was acquired. With regard to these people, 46.8% had an intense or moderate degree of limitation or could not perform normal activities of daily living[6]. It is evident that a child or adolescent with neurological impairment and physical dependence on daily tasks requires a more complex care. This calls for greater family involvement in the daily life of this population[7]
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