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 ...