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A qualidade de vida dos adultos com dificuldade intelectual e desenvolvimental
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Esta tese tem como objetivo analisar a Qualidade de Vida (QV) das pessoas com Dificuldade Intelectual e Desenvolvimental (DID). Para o efeito, desenvolveram-se quatro estudos para a adaptação cultural e análise das propriedades psicométricas da Escala Pessoal de Resultados (EPR), a versão portuguesa da Personal Outcomes Scale (POS), que avalia a QV de pessoas com DID. A relação entre o constructo de QV, medido por duas escalas diferentes, e a sua relação com o comportamento adaptativo (CA) e os apoios foi analisada em outros dois estudos. Adicionalmente, descreveu-se e analisou-se a QV das pessoas com DID através de três estudos diferenciados. Das diversas amostras englobadas nesta investigação, salienta-se que a amostra final incluiu 1,929 adultos, dos quais 1,264 apresentavam DID ligeira ou moderada. No tratamento estatístico dos dados utilizou-se, predominantemente, o Statistical Package for the Social Sciences (SPSS). Os resultados dos quatro estudos iniciais sustentaram coeficientes psicométricos adequados em termos da validade e fiabilidade do instrumento, bem como a multidimensionalidade e hierarquia do constructo de QV, com os dados recolhidos dos adultos com DID e dos seus cuidadores. O quinto estudo evidenciou a diferença de se medir a QV na DID com um instrumento criado para a população em geral e baseado somente em medidas subjetivas versus a EPR, elaborada para a população com DID, com indicadores subjetivos e objetivos. O sexto estudo demonstrou que o CA é um preditor mais robusto da QV do que os apoios. Os últimos três estudos revelaram que as características pessoais e os fatores contextuais são preditores da QV, sobressaindo a discrepância entre os valores das pessoas com e sem DID. Os resultados permitem propor um novo paradigma para a intervenção baseado em indicadores, domínios e fatores de QV com robustez psicométrica. Implicações para os profissionais, os serviços e as políticas portuguesas são igualmente apresentadas.
This thesis aims to analyze the Quality of Life (QOL) of the people with Intellectual and Developmental Disability (IDD). Four studies were conducted to the cross-cultural adaptation and analysis of the psychometric properties of the Escala Pessoal de Resultados (EPR), the Portuguese version of the Personal Outcomes Scale (POS), which assesses the QOL of people with IDD. The relationship between the QOL construct, assessed through two different scales, and the relationship with the adaptive behavior (AB) and supports was examined in two other studies. Additionally, three studies were performed to describe and analyze the QOL of people with IDD. Of the several samples involved in the research, it is stressed that the final sample included 1,929 adults, of which 1,264 had mild or moderate IDD. Data were analyzed, predominantly, using the Statistical Package for the Social Sciences (SPSS). Findings of the first four studies showed evidence of suitable psychometric properties related to the validity and reliability of the scale, as well as revealed that the QOL is a multidimensional and hierarchical construct, by examining the ratings of the people with IDD and their proxies. The fifth study exposed the difference of assessing the QOL of people with IDD with an instrument designed for the general population, only based in subjective measures, versus the EPR, designed for people with IDD, with subjective and objective indicators. In the sixth study, the AB proved to be a stronger predictor of QOL than the support needs. The last three studies revealed that QOL is predicted by individual characteristics and environmental factors, highlighting the discrepancy between the scores of people with and without IDD. The results allow us to propose a new paradigm for the intervention based in indicators, domains and factors of QOL with psychometric robustness. Implications for practitioners, service systems and Portuguese policies are presented.
This thesis aims to analyze the Quality of Life (QOL) of the people with Intellectual and Developmental Disability (IDD). Four studies were conducted to the cross-cultural adaptation and analysis of the psychometric properties of the Escala Pessoal de Resultados (EPR), the Portuguese version of the Personal Outcomes Scale (POS), which assesses the QOL of people with IDD. The relationship between the QOL construct, assessed through two different scales, and the relationship with the adaptive behavior (AB) and supports was examined in two other studies. Additionally, three studies were performed to describe and analyze the QOL of people with IDD. Of the several samples involved in the research, it is stressed that the final sample included 1,929 adults, of which 1,264 had mild or moderate IDD. Data were analyzed, predominantly, using the Statistical Package for the Social Sciences (SPSS). Findings of the first four studies showed evidence of suitable psychometric properties related to the validity and reliability of the scale, as well as revealed that the QOL is a multidimensional and hierarchical construct, by examining the ratings of the people with IDD and their proxies. The fifth study exposed the difference of assessing the QOL of people with IDD with an instrument designed for the general population, only based in subjective measures, versus the EPR, designed for people with IDD, with subjective and objective indicators. In the sixth study, the AB proved to be a stronger predictor of QOL than the support needs. The last three studies revealed that QOL is predicted by individual characteristics and environmental factors, highlighting the discrepancy between the scores of people with and without IDD. The results allow us to propose a new paradigm for the intervention based in indicators, domains and factors of QOL with psychometric robustness. Implications for practitioners, service systems and Portuguese policies are presented.
Descrição
Palavras-chave
Qualidade de vida Dificuldade intelectual e desenvolvimental Validação Avaliação Intervenção Quality of life Intellectual and developmental disability Validation Assessment Intervention