RESUMO
OBJECTIVE: The objective of this paper is to describe how the ICF framework was applied as the foundation for a longitudinal study of changes in quality-of-life (QoL) for youth with chronic conditions. METHOD: This article will describe the study's aims, methods, measures and data analysis techniques. It will point out how the ICF framework was used--and expanded upon--to provide a model for studying the impact of factors on changes in QoL for youth with chronic conditions. Further, it will describe the instruments that were chosen to measure the components of the ICF framework and the data analysis techniques that will be used to examine the impact of factors on changes in youths' QoL. CONCLUSIONS: Qualitative and longitudinal designs for studying QoL based on the ICF framework can be useful for unraveling the complex ongoing inter-relationships among functioning, contextual factors and individuals' perceptions of their QoL.
Assuntos
Doença Crônica/psicologia , Qualidade de Vida/psicologia , Atividades Cotidianas , Adolescente , Criança , Protocolos Clínicos , Feminino , Nível de Saúde , Humanos , Estudos Longitudinais , Masculino , Inquéritos e QuestionáriosRESUMO
This article presents a life needs model of pediatric service delivery that is based on the values of the intrinsic worth, dignity, and strengths of individuals. This developmental, socio-ecological model outlines the major types of service delivery needs of children and youth with disabilities, their families, and their communities within three spheres of life (the personal, interpersonal, and external spheres). The model legitimizes the concept of need, emphasizes the values of family-centered services, and recognizes child and family strengths and capacities. We discuss the utility of this transdisciplinary model in guiding pediatric service delivery to meet the long-range goals of community participation and quality of life of children and youth with disabilities.