No dia-a-dia... a luta: a família da criança com deficiência física

Abstract

This descriptive, qualitative study is aimed at identifying how low-income families manage to restructure themselves after giving birth to a physically disabled child due to Chronic Childhood Encephalopathy. Parents (n=11) from eight nuclear families with a physically disabled child attending a physiotherapeutic clinic/school in Salvador (Bahia, Brazil) were selected for semistructured interviews followed by a socioeconomic and cultural survey. Through content analysis, data were grouped in eight thematic axes showing that among the many difficulties faced by those families were the loss of the object of desire, a decrease in income and social contacts, and emotional imbalance, which comprised the internal and external factors both contributing to an increased family stress and exerting heavy influence on family interactions. Families were shown to face their adversity by devising strategies for adaptation and solution seeking. It could be concluded that new ways of restructuring took place so that balance could be kept. A greater family and societal mobilization is urged towards the creation or support of public policies designed to validate the physically disabled as a subject and a citizen. Given the importance of the matter and the paucity of studies in the field, further research should be carried out on the dynamics of family behavior for a better evaluation of the impact of physical disability on family structure.