Perceived QOL by children with HMV and their families is lower than that of healthy children. Parents are happy to care for their children at home, even though it negatively affects family life. What is Known: • The use of home mechanical ventilation (HMV) in children has increased over the last years. • Normal family functioning is usually disrupted by HMV. What is New: • The aim of HMV is to provide a lifestyle similar to that of healthy children, but perceived quality of life by these patients and their parents is low. • Most of the families caring for children on HMV agree that support and resources provided by national health institutions is insufficient.

ResumenLa calidad de vida (CV) es un concepto utilizado por diferentes disciplinas. Sin embargo, existen diversas definiciones del mismo, lo que puede llevar a problemas teóricos y aplicados. El objetivo de esta investigación es evaluar un modelo de calidad de vida construido desde los datos. En este trabajo se argumenta que una manera de atender a esta variedad es evaluar un modelo de CV que surja a partir de la aplicación simultánea de instrumentos tradicionalmente vinculados a este constructo. Por ello, se realizaron diferentes análisis factoriales para identificar un factor común a los ítems, y factores específicos en caso de ser necesario. Se presentan los resultados de dos estudios: el primero (n=550) midió diferentes aspectos objetivos y subjetivos relacionados a CV. Los datos generados llevaron a un modelo de seis factores de primer orden y uno de segundo orden, con adecuados indicadores de confiabilidad y validez. Este modelo se basa en variables relativas a los aspectos subjetivos de la CV. El segundo estudio (n=304) revela que la estructura planteada en el primer estudio muestra adecuados indicadores aun comparándola con otros modelos que incluyen dimensiones complementarias. Se discuten los resultados en función de su aporte a la investigación en CV, a la definición conceptual del constructo y a su efecto en la intervención social. Palabras clave: bienestar, calidad de vida, indicadores sociales. EVALUATION OF A CONCEPTUAL QUALITY OF LIFE MODEL BUILT FROM DATA AbstractQuality of Life (QL) is a concept used by different disciplines. However, there is a variety of definitions of QL, which might lead to theoretical and applied problems. The present work argues that a way to attend to this problem is by assessing a model of quality of life that arises from the simultaneous application of instruments traditionally associated with this construct. To evaluate this idea, several factor analyses were conducted in order to identify a common factor and specific dimensions in case it was needed. The first study (n=550) measured objective and subjective aspects related to QL. The resulting data generated a model with six first order factors and one second order dimension with appropriate indicators of reliability and validity. This model is based on variables related to the subjective aspects of QL. A second study (n=304) indicated that the aforementioned structure shows good psychometric indicators, even in comparison with other models that include complementary dimensions. Results are discussed in terms of their contribution to research in quality of life, the conceptual definition of the construct and its effect on social intervention.