Estresse parental de cuidadores de crianças com paralisia cerebral no estado do Pará

Abstract

Children with Cerebral Palsy (CP) require care that can be lifelong and, for this reason, it is of scientific and social interest to investigate aspects related to their primary caregivers. Thus the aim of this doctoral thesis has been to investigate indicators of parental stress among caregivers of children with CP living in urban centres of the meso-Regions of the State of Pará, and to verify if these are associated with caregivers’ sociodemographic profile and their perceptions of social support. The study covered a total of 132 caregivers of children aged one to 12 years old, who used free philanthropic facilities in the cities of Belém, Castanhal, Marabá and Santarém. Caregivers were interviewed individually and responded to the following four data-collection instruments: the Sociodemographic Inventory, the Medical Outcomes Study Social Support Survey (MOS-SSS), the Gross Motor Function Classification System (GMFCS) and the Parental Stress Index (PSI/SF). The data were analysed using descriptive statistics with particular emphasis being given to central tendency measures, and the Correspondence Analysis technique was also employed. The results showed that in all cities most caregivers were mothers living in a stable union, with low family income and little schooling. In addition, the data suggested that there existed physical barriers in the built environment in proximity to the caregivers’ homes. The mean values of the MOS-SSS score ranged from 72 and 79.3, indicating that the sample’s caregivers had a high level of perception of regarding the extent of social support. However, a significant proportion of caregivers (30%) said that they rarely or never benefited from the presence of someone able to help them relax. Regarding parental stress, almost half (46%) of the sample experienced high levels. The results of the correspondence analysis showed that caregiver profiles varied according to their levels of stress and the classification of the city in which they resided. Among the variables that were shown to be associated with parental stress in at least three different cities are: schooling, age and the income of the caregiver’s family, as well as the extent of material and emotional support. The knowledge acquired by the research reported on in this thesis concerning the interrelationships between parental stress, caregivers’ perception of social support, and the sociodemographic characteristics of the caregivers of children with CP in the State of Pará, contributes to a better understanding of the impacts of this clinical condition on caregivers who live in these specific urban context.