Rosa Vilaseca

Spanish Family Quality of Life Scales: Under and over 18 years old

Abstract Background Researchers, professionals, and families have shown increasing concern with the family quality of life (FQoL) of people with intellectual disability (ID) and their families. The goals of this research were (a) to explore how Spanish families understand FQoL by developing 2 different measurement tools for families with a member with ID under and over 18 years old, and (b) to provide 2 diagnostic instruments that will be useful for designing action plans. Method The study comprised 4 stages: (a) focus groups, (b) expert assessment, (c) pilot study, and (d) normalisation and standardisation. The data were collected in 5 regions in Spain, and 1,205 families with a member with ID took part in the normalisation and standardisation of the scales. Results Both FQoL scales were consistent and have valid psychometric characteristics. Conclusions The scales have a diagnostic purpose for use in designing action plans aimed at producing significant changes in families’ lives.

Language acquisition by children with Down syndrome: a naturalistic approach to assisting language acquisition

Many child language studies emphasize the value of verbal and social support, of ‘scaffolding’ processes and mutual adjustments that naturally occur in adult-child interactions in everyday contexts. Based on such theories, this study attempted to improve the language and communication skills in children with special educational needs through naturalistic intervention. The results showed positive changes in the targeted language components of three children with Down syndrome. We consider that child language gains were best maintained after intervention if the mothers received at the same time specific advice about verbal interaction at home.

Repensar la atención temprana: propuestas para un desarrollo futuro

Resumen La atención temprana es una realidad suficientemente consolidada en España después de treinta años de trabajo con familias y niños con trastornos del desarrollo o riesgo de padecerlos. Este artículo supone una reflexión en torno a las prácticas profesionales que tienen lugar en los centros de atención temprana de nuestro país y los principios teóricos que les dan cobertura, con la finalidad de realizar algunas propuestas de futuro. En este sentido, se subraya y se reivindica la necesidad de adoptar un enfoque centrado en la familia, en la misma línea que ya se inició hace unos años con la publicación del Libro Blanco de la Atención Temprana. La adopción progresiva de este enfoque por parte de los profesionales contribuiría a mejorar algunos de los puntos débiles que todavía hoy presenta la atención temprana en nuestro país.

La intervención en el área del lenguaje: un modelo interactivo y naturalista

ResumenDurante los ultimas anos, los trabajos sobre el desarrollo del lenguaje infantil, enfatizan el papel que desempena la interaccion social y verbal entre ninos y adultos en relacion a la adquisicion del lenguaje en ninos de desarrollo normal. Sin embargo, a pesar de la idea optimista de que los estudios realizados en poblacion normal pueden dar lugar a modelos de intervencion logopedica con ninos discapacitados, se han disenado muy pocos estudios de investigacion intervencion en este sentido. Este estudio pretende justamente paliar esta falta, empleando algunas de las estrategias observadas en los procesos naturales de adquisicion de la comunicacion y lenguaje, consideradas optimizadoras del desarrollo, en el trabajo terapeutico en el area del lenguaje con ninos que tienen Necesidades Educativas Especiales (NEE). De los resultados obtenidos se pueden derivar consecuencias relativas a la practica clinica y educativa y a la adquisicion de primera o segunda lengua.

Family Quality of Life for Families in Early Intervention in Spain.

Early intervention (EI) has been shown to be an essential resource for meeting the needs and priorities of children with intellectual and developmental disability and their families. The objective of this study was to examine (a) the perceived quality of life of families attending EI centers in Spain and (b) its relationship with characteristics of the children and their families. The Family Quality of Life Scale was administered to a sample of 281 families with children aged 0 to 6 years attending an EI center. To determine the relationship between family quality of life (FQoL) and the family and children’s characteristics, Student’s t test and one-way ANOVA were performed. Likewise, effect size was measured in those groups. The results show that the emotional well-being of families was high, although they were concerned about health and financial well-being. The perceived FQoL varies depending on income, family type, and severity of the child’s disability. Implications for professional practice in EI centers are presented.

Early Intervention in Spain: Some Directions for Future Development

This article presents an overview of the state of early intervention in Spain after 30 years of work with families and children with developmental disorders or at risk of suffering from such disorders. The organisation and conceptual base of early intervention in Spain have gradually evolved over the past few decades. This field is still in the midst of a transformation process, moving toward an intervention model that is more family-focused and more integrated into the communitys services network. However, administrative, financial, and professional training difficulties still remain. This emerging intervention model is described in detail in this article and, as much as possible, illustrated within the framework of the Developmental Systems Model put forward by Guralnick. Results of a pilot study at 4 early intervention centres in Catalonia (Spain) are discussed, including the current state of early intervention and needed improvements. Further discussion of progress in the field of early intervention in Spain and future directions follows.

Quality of Life of the Families of People with Intellectual Disability in Spain

The object of this research is to build up a picture of what families with children with intellectual disability in Spain understand by quality of life and, on this basis, draw up a scale specially focusing on adults (over 18) that will furnish information on the support required by these families and so allow us to promote the necessary resources from the organizations and the different administrations.