Necessidades de famílias pobres de crianças com deficiência

Abstract

The arrival of a child in a family is one of the main developmental milestones, and tends to be even more intense when it involves a child with a disability. The family has to adapt to a new reality, usually different from what was expected. The existing demands are added to those that arise with the arrival of the child, directly influencing the family adaptation process. In this sense, the present work aimed to investigate the needs of poor families of children with disabilities. Two studies were carried out. Study 1 aimed to carry out the cross-cultural adaptation and validation of the Family Needs Survey for the Brazilian population. For this, it had two stages, namely: cross-cultural adaptation (translation, synthesis of translations, reverse translation, expert committee, pre-test and second meeting of the expert committee) and validation (by checking Cronbach's Alpha and the Confirmatory Factor Analysis). The results showed good semantic and cultural agreement of the items of the adapted instrument, and a value of 0.0833 in Kappa. Regarding validation, Cronbach's alpha of 0.87 was observed for the reliability of the instrument, equally good values were found for each subscale of the instrument. Regarding validity, the application of the KMO test and Bartlett showed values greater than 0.50, which indicates a good level of validity. Finally, the instrument was considered validated for the Brazilian context. Study 2 aimed to investigate the relationship between family needs and poverty. Fifty caregivers of children with disabilities participated, and data collection was carried out in three reference services specialized in child rehabilitation. The Sociodemographic Inventory (ISD), the Family Poverty Index (IPF) and the Family Needs Questionnaire (QNF) were used. With regard to data analysis, Descriptive Analysis and Pearson's Correlation Test were performed. The results showed that the majority of caregivers were mothers, married, with a family income of 1 to two minimum wages, and most receiving Continuous Cash Benefit or Bolsa Família. Most children had Cerebral Palsy and a mean age of 5 years, and most were attending school. The existence of correlations between needs and poverty was also found, and there was an emphasis on the Needs to Explain to Others (N.EXP) and Needs for Professional and Religious Support (N.SPR), as well as for the dimensions Housing and Vulnerability of family poverty .