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Tradução, adaptação cultural e contributo para a validação do CARES para o português europeu
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Objetivo: Traduzir, adaptar culturalmente e avaliar as propriedades psicométricas preliminares do Caregiver Analysis of Reported Experiences with Swallowing Disorders para o português europeu (CARES-PE), instrumento destinado a rastrear a sobrecarga funcional e emocional de cuidadores informais de pessoas com perturbações da deglutição.
Método: Estudo observacional e metodológico em duas fases: tradução e adaptação cultural com validação de conteúdo por painel de peritos e pré-teste de clareza e compreensão; e estudo-piloto para avaliação exploratória da validade de construto, consistência interna, fidelidade temporal e interpretabilidade. A validade de construto foi examinada por hipóteses de associação com a Escala de Sobrecarga do Cuidador de Zarit, o WHOQOL-BREF e a FOIS. Resultados: O CARES-PE evidenciou validade de conteúdo elevada e boa compreensibilidade. As associações com medidas de sobrecarga e de qualidade de vida sustentaram a validade de construto. A consistência interna foi adequada nas dimensões funcional e emocional e no total. A estabilidade temporal foi positiva, mas não significativa. A distribuição das pontuações não revelou efeitos de chão ou teto, indicando interpretabilidade favorável e sensibilidade para distinguir diferentes níveis de sobrecarga. Conclusão: O CARES-PE apresenta resultados promissores, constituindo o primeiro instrumento adaptado para o português europeu destinado ao rastreio da sobrecarga funcional e emocional do cuidador informal associada às perturbações da deglutição, com potencial para apoiar a prática clínica e a investigação numa abordagem centrada no cuidador e na família. Recomendam-se estudos com
amostras mais amplas, análises estruturais confirmatórias, avaliação de responsividade e definição de valores normativos para consolidar o instrumento como referência.
Objective: To translate, culturally adapt, and preliminarily evaluate the psychometric properties of the Caregiver Analysis of Reported Experiences with Swallowing Disorders into European Portuguese (CARES-PE), an instrument designed to screen the functional and emotional burden experienced by informal caregivers of individuals with swallowing disorders. Methods: This observational methodological study was conducted in two phases: translation and cultural adaptation with expert-panel content validation and pre-testing for clarity and comprehension; and a pilot study for exploratory assessment of construct validity, internal consistency, test–retest reliability, and interpretability. Construct validity was examined through hypothesis testing using the Zarit Burden Interview, the WHOQOL – BREF, and the FOIS. Results: CARES-PE demonstrated high content validity and good comprehensibility. Associations with caregiver burden and quality-of-life measures supported construct validity. Internal consistency was adequate for the functional and emotional dimensions and for the total score. Temporal stability was positive but not statistically significant. Score distributions showed no floor or ceiling effects, indicating favorable interpretability and sensitivity to distinguish different levels of caregiver burden. Conclusion: CARES-PE presents promising results and represents the firstinstrument adapted for European Portuguese specifically aimed at screening functional and emotional caregiver burden associated with swallowing disorders. It shows potential to support clinical practice and research within a caregiver- and family-centered approach. Further studies with larger samples, confirmatory structural analyses, assessment of responsiveness, and the establishment of normative values are recommended to consolidate the instrument as a reference measure.
Objective: To translate, culturally adapt, and preliminarily evaluate the psychometric properties of the Caregiver Analysis of Reported Experiences with Swallowing Disorders into European Portuguese (CARES-PE), an instrument designed to screen the functional and emotional burden experienced by informal caregivers of individuals with swallowing disorders. Methods: This observational methodological study was conducted in two phases: translation and cultural adaptation with expert-panel content validation and pre-testing for clarity and comprehension; and a pilot study for exploratory assessment of construct validity, internal consistency, test–retest reliability, and interpretability. Construct validity was examined through hypothesis testing using the Zarit Burden Interview, the WHOQOL – BREF, and the FOIS. Results: CARES-PE demonstrated high content validity and good comprehensibility. Associations with caregiver burden and quality-of-life measures supported construct validity. Internal consistency was adequate for the functional and emotional dimensions and for the total score. Temporal stability was positive but not statistically significant. Score distributions showed no floor or ceiling effects, indicating favorable interpretability and sensitivity to distinguish different levels of caregiver burden. Conclusion: CARES-PE presents promising results and represents the firstinstrument adapted for European Portuguese specifically aimed at screening functional and emotional caregiver burden associated with swallowing disorders. It shows potential to support clinical practice and research within a caregiver- and family-centered approach. Further studies with larger samples, confirmatory structural analyses, assessment of responsiveness, and the establishment of normative values are recommended to consolidate the instrument as a reference measure.
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Perturbações da deglutição Sobrecarga do Cuidador Qualidade de Vida Psicometria Estudos de Validação Swallowing disorders Caregiver Burden Quality of Life Psychometrics Validation Studies