The assessment of family experience and expected outcomes from early intervention in preschool children with Autism Spectrum Disorder: translation and cross-cultural adaptation of the Autism Family Experience Questionnaire (AFEQ) to the Italian context

Abstract

ABSTRACTBackgroundAutism spectrum disorder (ASD) is a neurodevelopmental disorder characterized by deficits in social communication and the presence of restricted interests and repetitive behaviours (Hodges et al., 2020). According to the American guidelines, the impact of disability can affect the family’s well-being and have consequences for the siblings and the organisation of family life, both economically and psychologically (ASHA, 2006). Given the lack of parent-focused measures to assess these aspects, Leadbitter et al. (2018) developed the Autism Family Experience Questionnaire (AFEQ), aimed at assessing priority outcomes for parents of preschool-aged children with ASD who were previously enrolled in the Pre-school Autism Communication Trial, a randomized controlled trial study on parent-mediated intervention (Leadbitter et al., 2018; Green et al., 2010). The aim of the present study was to translate and culturally adapt into Italian the AFEQ (Leadbitter et al., 2018) and to verify the main psychometric performances of the adapted version.MethodsLinguistic validation and cross-cultural adaptation to the Italian context were based on the guidelines of Beaton et al. (2000). Once the direct and inverse translation phases were completed with the favourable opinion of the panel of experts recruited for the study, further tests on the psychometric properties of the adapted questionnaire were required. Following the consensus obtained from the authors of the original questionnaire and according to the recommendations of Polit et al. (2007) and Polit and Beck (2006), a second panel of selected experts determined the content validity of the adapted instrument through the calculation of the Content Validity Index (CVI), according to the indications for each item (I-CVI) and for the scale (S-CVI).ResultsA medical doctor and a non-medical expert, both native Italian speakers with an adequate knowledge of English, independently produced a translation. The latter were then compared and discrepancies in the translation process were resolved in a discussion. Two independent, native English-speaking translators produced reverse translations of the resulting version; neither of them had experience or knowledge of the objectives of the study nor of the healthcare sector. The two translations were similar to each other and one of them was almost identical to the original. The original questionnaire and the material obtained in the previous stages were made available to an interdisciplinary panel of experts recruited for the study. All members agreed on that T1-2 was the only accepted translated version. Analysing the I-CVI, all items exceeded the expected cut-off of ≥ 0.78 except for one (I-CVI value 0.6). The S-CVI reached and exceeded the cut-off when obtained with the S-CVI/Ave calculation mode, while with the S-CVI/UA the value was 0.73 and was slightly below the cut-off.Discussion and ConclusionTo the authors’ knowledge, this study is the first to develop an Italian version of the AFEQ questionnaire. The involvement of two translators in the forward and reverse translation phases avoided, in the former, the presence of bias and the enrichment of the synthesis process; in the latter, it facilitated the verification of the semantic equivalence of the translation. Evaluation of the final version by a panel of experts ensured its linguistic validity. The Italian version of the AFEQ obtains very positive I-CVI, S-CVI/UA-Ave values, meaning a very positive assessment of the scale items regarding their relevance for the investigated constructs. As the study is still in progress, it has not yet been possible to carry out a test of the adapted version that coincides with the final phase of the adaptation process described by Beaton et al. (2000). The work represents a first step in the Italian validation process of the questionnaire, which is still ongoing.