A sobrecarga na família de crianças com paralisia cerebral / Overload on the families of children with cerebral palsy.

AUTOR(ES)
DATA DE PUBLICAÇÃO

2009

RESUMO

Cerebral Palsy (CP) is an alteration to ones posture and movement. It is permanent, but not unchangeable, and results from an unprogressive brain disorder, which can be genetic or due to events occurred during pregnancy, delivery, in the neonatal period, or during the first two years of life. This condition causes impairment to ones motor activities, usually accompanied by disorders to the persons sensations, cognition, communication, perception, and behavior. When a child is born with these conditions, the family is deeply affected, since they have to face a new, and often unexpected, situation. In addition, it puts emphasis on the caregiver, who, in general, is one of the family members that takes on a fundamental role in improving the childs quality of life. The purpose of this study was to identify and describe the overload that a child with CP brings on his or her family, and verify if there is any relationship between the overload, the childs degree of dependence, and the familys socioeconomic level. Participants were 150 family members of children with CP following treatment at the University of São Paulo Child Neurology Outpatient Clinic at the Hospital das Clinicas of the Faculdade de Medicina de Ribeirão Preto. Data were collected before or after the consultation with the physician, using an interview form containing information about the child, the familys socioeconomic data, information about the overload that the child brings on the family, obtained with the Burden Interview Scale, translated and validated for the Portuguese language, and through open questions that address the physiotherapy treatment. The results showed that most children were between one and ten years old, their type of CP was quadriplegia/spastic diplegia, and were usually dependent on others for hygiene care, feeding, and walking. The data analysis for family members showed that the caregiver was usually the childs mother, and that most had a low socioeconomic level, with nine-month pregnancy, with cesarean as the most common type of delivery. The caregivers reported an overload of low to moderate intensity, though stating different concerns regarding the childs dependence and future, as well as the financial difficulties and the feeling that they could be doing more for their child. The answers to the open questions showed the family members had to deal with several difficulties regarding the childrens behavior, the frequency of the physiotherapy sessions, and the difficulty of performing the exercises proposed by the professionals at home. The study made it possible to describe and understand the challenges reported by the childrens family members regarding the overload and the physiotherapy treatment, and to understand and discuss the role of the family member who is the caregiver and deserves to be acknowledged by the family and the society as well, through the implementation of public policies that would reduce the difficulties and problems brought on by this role.

ASSUNTO(S)

caregivers família cerebral palsy family overload cuidadores paralisia cerebral physiotherapy. fisioterapia family sobrecarga familiar

ACESSO AO ARTIGO

Documentos Relacionados