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 ...
Researchers, professionals, and families have shown increasing concern about the quality of life of people with intellectual disabilities (ID) and their families. Due to the growing interest in family quality of life (FQoL) as a key issue for social policy in the ID field, the aim of this research was to explore FQoL in Catalonia (Spain). The Spanish Family Quality of Life Scales (CdVF-E) were completed by 144 families using the version for households with children up to 18 years of age and by 122 families using the version for households with adult children over 18 years of age. The results show that FQoL is higher in families with adult children over 18 years of age than in families with children up to 18 years of age, and there are differences among domains in both groups. Likewise, there are relations between the scores in the scales and some demographic characteristics such as marital status, level of education, employment status, and family income, particularly in households with children under 18 years of age.
The systemic, ecological, family-centered approach (FCA) has been shown to be the most effective approach to follow worldwide. In Spain, however, the expert-centered approach remains in force and determines the actions of professionals. The objective of this study is to present the training needs perceived by professionals in six early intervention (EI) centers in Spain in which a research process was introduced, namely, the FCA. Two focus groups were held. The needs stated by professionals were for more knowledge about the philosophy of the approach: supervision, learning in reference centers, and exchange sessions with families as the most appropriate training methods; the observation of role models; collaboration between professionals and the trainer as effective instructional designs; and organizational aspects such as training within the work day. A discussion of the results is carried out in the context of current literature and the practical implications are explored.
Besides providing specific support for individuals with intellectual disability, local policymakers and practitioners should apply a family-centred approach to the provision of support for families in order to improve FQoL.
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