Práticas de cuidado, redes de apoio e satisfação social de cuidadores primários de crianças com paralisia cerebral

Abstract

The present study aimed to understand the care of the child with cerebral palsy from the perspective of the primary caregiver focusing on their practices, social satisfaction, learning, dedication and support received. To do so, it was subdivided as follows: a theoretical study in periodicals linked to the Psynet APA database using a protocol adapted from the Cochrane Collaboration guidelines for the systematic review of the literature with the descriptors child care and cerebral palsy and four empirical researches. Two quantitative studies carried out with 101 primary caregivers of children aged 0 to 12 years with diagnosis of cerebral palsy and two qualitative studies using the Teoria Fundamentada on interviews with 13 mothers of children with CP performed in their homes. Study 1, about reviewing, made possible the understanding of the scientific productions about care in cerebral palsy, indicating five main areas: the parents' perception of the rehabilitation process, experiences in daily care, support received, parental satisfaction and experiences by feeding. Based on the themes raised by the review, empirical research was delineated. In this sense, the second study sought to understand the care practices and supports received, the results indicated that caregivers showed higher frequencies regarding primary care and body contact. Emotional support was strongly correlated with the information received and the positive social interaction experienced by the primary caregiver. In addition to the supports, the levels of caregiver satisfaction, which was the objective of the third study, were investigated, and the results indicated good general social satisfaction mainly among caregivers of children evaluated as being more compromised. Such evidence was unexpected, but extremely positive when it was reflected on the psychology of primary caregivers, with emphasis on the family satisfaction dimension, which was significantly more present, especially among caregivers of children with greater impairment. The other articles related to studies 4 and 5 were qualitative, inspired by the Teoria Fundamentada on interviews with 13 mothers of children with CP performed in their homes and the analyzes about the data emerged from the speeches themselves. The analysis of maternal care in the CP highlighted three main elements: dedication as a central aspect in care; the practices performed in solitary way, associated with the fears of diagnosis, convulsions and the future; and finally, the support related to the lack of orientation and professional care. The last work, fifth study, with the same methodology applied to the fourth study, emphasized the learning about the perception of being a special mother and the construction of intense and never imagined learning.