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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.
Appendix. Example of how the items are presented in the CdVF-E
Acknowledgements
The project was carried out in collaboration with Almudena Fernández and Ignacio Martínez, Deusto University; Asunción González del Yerro, Autonomous University of Madrid; Virginia Cagigal, Comillas Pontifical University of Madrid; Gabriel Díaz Jiménez and Celia Fernández Sarmiento, University of Las Palmas de Gran Canaria; and José Florido Sanabria, Ministry of Education, Government of the Canary Islands.
We would like to express our thanks to the families with persons with ID and to the professionals from the different associations who participated in our research.
Author note
This research was supported by a grant from the Spanish Ministry of Education and Science under the National R&D&I Plan 2006–2009 (SEJ 2006-04773). The funding bodies have not imposed any restrictions on free access to or publication of the research data.
Conflict of interest: None.