Adaptação transcultural e validação da escala Evaluación de las Necesidades Familiares para uso com famílias brasileiras de crianças e adolescentes com deficiência

Abstract

In Brazil, there are few studies that investigate the support needs of families that have handicap children in their daily context. There are few instruments as well that try to identify and evaluate the support needs level in the areas of family life that influence the family’s well-being in a certain moment of life. Therefore, the objective of this study was to perform the cross-cultural adaptation and the validation of the Evaluación de las Necesidades Familiares – ENF scale for the use with families of children and adolescents with disabilities. This is an instrument with the potential to help the families and their service providers to identify the needs and to make decisions that result in measures of support and quality of family life. To this end, two studies were performed: the first one was cross-sectional, multicenter and methodological of cross-cultural adaptation of the scale for its usage in Brazil. The second study was about the validation of the scale, which is also multicenter, cross-sectional, exploratory, descriptive and correlational, with a quantitative approach. The cross-cultural adaptation study was held in six stages (translation, reconciliation, back-translation, specialist’s evaluations, cognitive unfolding and pre-test) that resulted in a scale called Avaliação das Necessidades da Família – ANF in Portuguese, with 49 items and with an excellent index of internal consistency (Cronbach’s Alfa coefficient of 0.98). These items were obtained from analysis performed in the Software SPSS 21 version, with a sample of 38 families of children and adolescent with disabilities between 0 and 18 years old, residents in four Brazilian cities (São Paulo-SP, Santos-SP, Lagarto-SE and Maceió-AL). For the validation study of the Brazilian version of ENF two more instruments were used: the Escala de Qualidade de Vida Familiar (QdVF Brasil), used to verify the validation of criterion of ANF, is an instrument that has 25 questions that evaluate the family satisfaction in the last 12 months in a series of family activities; and the Questionário de Identificação da Família, that was made by the researchers to obtain the socioeconomic data of the participants. In this study participated 151 families of children and adolescents with disability, between 0 and 18 years old, residents in four Brazilian cities (São Paulo-SP, Santos-SP, Pelotas-RS e Maceió-AL), in which 130 of them were part of the main sample and 21 participated in the test retest. For the data analysis, it was used the Software R (The R project for Statistical Computing) 3.6.1 version. The structure of the scale validation process is indicated as valid from a structure obtained from the Structural Equation Modeling (SEM), that confirmed a final model for the ANF with 46 items distributed in seven dimensions (education, family life, community life, leisure time, economy, acquisition and management of products and services and health and emotional well-being) with a good index of data adjustment (RMSEA = 0.041 e SRMR = 0.063), satisfactory convergent validity (rs (130) = -0.27, p < 0,001) and excellent index of reliability obtained (Cronbach’s Alfa = 0.92 and McDonald’s Omega = 0.94) and reaffirmed by the test retest technique (R1F = 0.98). From the obtained results it can be said that the ANF is valid and trustworthy to evaluate the necessities of the Brazilian families of children and adolescents with disability under 18 years old.