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

Abstract

The goals of this research are (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. ConclusionsThe scales have a diagnostic purpose for use in designing action plans aimed at producing significant changes in families' lives. Keywords: family quality of life, family needs, intellectual disability, family quality of life scale Family quality of life 3 IntroductionIn recent decades, researchers, professionals and families themselves have shown growing concern with the quality of life (QoL) of persons with intellectual disability (ID) and their families. Although research on the QoL of persons with ID has a long history and has generated a large corpus of results with consequences for both theory and practical applications for improving the lives of these people (e.g., Brown, 1997; Cummins, 1996; Cummins, 1997a; Keith & Schalock, 2000; Schalock, 1996; Schalock, 1997;Schalock et al., 2002; Schalock, Gardner, & Bradley, 2007;Schalock & Verdugo, 2002), the same has not happened with regard to family quality of life (FQoL).In comparison with research on the QoL of persons with ID, research on FQoL is still limited (Summers et al., 2005) and recent. Nevertheless, there is widespread agreement on the importance of this new construct both for improving families' abilities to cope with a child with ID and for assessing the possible impact of the services and supports these families receive, which represent a significant investment in terms of financial and professional resources. To address these issues, various research teams have put considerable effort into conceptualising, measuring, and improving the quality of the families' lives (Aznar & Castañón, 2005; Brown et al., 2006; Hoffman, Marquis, Poston, Summers, & Turnbull, 2006; Hu, Summers, Turnbull, & Zuna, 2011; Isaacs et al., 2007). This work has led to the development of three scales for measuring FQoL, including different domains: (a) the Beach Center Family Quality of Life Scale (Beach Center FQOL Scale; Hoffman, Marquis, Poston, Summers, & Turnbull, 2006); (b) the Family Quality of Life Survey (FQOLS-2006; Brown et al., 2006; Isaacs et al., 2007); and (c) the Latin American Family Quality of Life Scale (Latin American FQoL Scale; Aznar & Castañón, 2005). Family quality of life 4The research presented here is in line with these initiatives and seeks to provide Spanish professionals and families with instruments based on what they understand by FQoL, their values and beliefs, and is sensitive ...

Diseño de un programa de apoyo a la calidad de vida de familias con jóvenes y adultos con discapacidad intelectual

“…Mientras que existe una considerable literatura sobre la Calidad de Vida individual en personas con discapacidad, la conceptualización de la CdVF adolece de suficiente desarrollo teórico (Wang y Kober, 2011). A pesar de que se han desarrollado diferentes instrumentos para su evaluación (Hoffman et al, 2006;Isaacs et al, 2007;Giné et al, 2013;, su aplicación práctica es casi inexistente (Zuna et al, 2009).…”

“…Aunque en la actualidad no existe una teoría completa sobre la CdVF y resulta necesario seguir investigando sobre sus componentes y las diferentes propuestas vinculadas a los instrumentos de evaluación, incorporando perspectivas diversas (Hu, Summers, Turnbull y Zuna, 2011;Park et al, 2003;Summers, 2005;Werner et al, 2009), existen estudios que concluyen unas dimensiones de CdVF ampliamente coincidentes en la comunidad científica (Giné et al, 2013;Hoffman, Marquis, Poston, Summers y Turnbull, 2006;Brown, Brown et al, 2006;Aznar y Castañón, 2005).…”

“…La propuesta que tomamos como referencia en este trabajo, la Escala de Calidad de vida Familiar para familias con hijos/as mayores de 18 años -ECdVF +18- Giné et al, 2013;Martínez et al, 2012), identifica las siguientes dimensiones: Bienestar emocional, Interacción familiar, Salud, Bienestar económico, Organización y habilidades parentales, Acomodación de la familia, Inclusión y participación.…”

“…Las 5 familias participantes han valorado de forma positiva su participación en el programa. Añadir que también se ha utilizado la Escala de Calidad de Vida Familar CdVF+18 (Giné et al, 2013; tanto al inicio como a la finalización del programa, con el objetivo de valorar su impacto en la calidad de vida. En este sentido, señalar que los resultados no han sido concluyentes debido a las propias características del instrumento y de la muestra.…”

Cómo implementar el modelo centrado en la familia en atención temprana.

“…As mentioned, the role of the ecomap is to make the supports that families have apparent to the parents and professionals and to find out whether there is a balance between formal and informal supports as informal supports are particularly important to promote the well-being of all the family members (Giné et al, 2013;Park et al, 2003). The ecomap allows us not only to explore the amount of supports but also the quality and intensity of each one of them; to this purpose, there are such questions as 'what is the relationship with every annotated member like?…”