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

  • Climent Giné
  • Marta Gràcia
  • Rosa Vilaseca
  • Anna Balcells
Part of the Social Indicators Research Series book series (SINS, volume 41)


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.

This research is based on the work on the quality of life of people with intellectual disabilities and their families carried out by various research groups over the past few decades. The project involves researchers from the University of Las Palmas de Gran Canaria, the University of Seville, the Autonomous University of Madrid and the University of the Basque Country, as well as from the Ramon Llull University in Barcelona, who coordinated the project.

The work comprises focus groups with parents and siblings, and interviews with people with intellectual disability in the five Autonomous Communities where the universities taking part are based. At the moment we are in a position to present only the general approach of the research (characteristics of the sample, composition and distribution of the focus groups, data analysis procedures, etc.) and the results of the pilot study which will enable us to define more precisely the questions and the methodology to be employed in the fieldwork.


Focus Group Intellectual Disability Intellectual Disability Basque Country Participatory Action Research 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.



Those taking part in the research reported here were researchers from Ramon Llull University (C. Giné, Mª T. Pró, M. Dalmau, J. M. Mas, A. Balcells), the University of Barcelona (M. Gràcia, R. Vilaseca), as well as professionals working in various institutions dealing with people with intellectual disability (L. Zaurin, G. Fornés, N. Tresserras) and mothers of people with disability (N. Gotarda, G. Prats).


  1. Arostegui, I. (2002). Calidad de Vida y Retraso Mental. Bilbao: Ediciones Mensajero, S.A.Google Scholar
  2. Brown, I., Anand, S., Fung, W. L. A., Isaacs, B., & Baum, N. (2003). Family quality of life: Canadian results from an international study. Journal of Developmental and Physical Disabilities, 15(3), 207–230.CrossRefGoogle Scholar
  3. Brown, I., Brown, R. I., Baum, N. T., Isaacs, B. J., Myerscough, T., Neikrug, S., et al. (2006). Family Quality of Life Survey (General Version). Toronto, ON, Canada: Surrey Place Centre.Google Scholar
  4. Brown, R. I. (Ed.). (1997). Quality of life for people with disabilities: Models, research and practice. Cheltenham: Stanley Thornes Pub. Ltd.Google Scholar
  5. Cummins, R. A. (1996). The domains of life satisfaction: An attempt to order chaos. Social Indicators Research, 38, 303–328.CrossRefGoogle Scholar
  6. Cummins, R. A. (1997). Self rated quality of life scales for people with an intellectual disability: A review. Journal of Applied Research in Intellectual Disabilities, 10, 199–216.CrossRefGoogle Scholar
  7. Gallimore, R., Weisner, T. S., Bernheimer, L. P., Guthrie, D., & Nihira, K. (1993). Family responses to young children with developmental delays: Accommodation activity in ecological and cultural context. American Journal on Mental Retardation, 98(2), 185–206.Google Scholar
  8. Giné, C. (2004). Servicios y Calidad de Vida para Personas con Discapacidad Intelectual. Siglo Cero, 35(210), 18–28.Google Scholar
  9. Guralnick, M. (1999). Family and child influence on the peer-related social competence of young children with developmental delays. Mental Retardation and Developmental Disabilities Research Reviews, 5, 21–29.CrossRefGoogle Scholar
  10. Guralnick, M. J. (2001). A developmental systems model for early intervention. Infants and Young Children, 14(2), 1–18.CrossRefGoogle Scholar
  11. Jokinen, N. S., & Brown, R. I. (2005). Family quality of life from the perspective of older parents. Journal of Intellectual Disability Research, 49(10), 789–793.CrossRefGoogle Scholar
  12. Keith, K. D., & Schalock, R. L. (Eds.). (2000). Cross-cultural perspectives on quality of life. Washington, DC: American Association on Mental Retardation.Google Scholar
  13. Krueger, R. (1988). Focus groups: A practical guide to applied research. Newbury Park, CA: Sage.Google Scholar
  14. Park, J., Hoffman, L., Marquis, J., Turnbull, A. J., Poston, D., Mannan, H., et al. (2003). Toward assessing family outcomes of service delivery: Validation of a family quality of life survey. Journal of Intellectual Disability Research, 47(4–5), 367–384.CrossRefGoogle Scholar
  15. Peterander, F. (2000). The best quality cooperation between parents and experts in early intervention. Infants and Young Children, 12(3), 32–45.CrossRefGoogle Scholar
  16. Poston, D., Turnbull, A., Park, J., Mannan, H., Marquis, J., & Wang, M. (2003). Family quality of life: A qualitative inquiry. Mental Retardation, 41(5), 313–328.CrossRefGoogle Scholar
  17. Pérez, G. (1994). Investigación Cualitativa. Retos e Interrogantes. Madrid: Editorial La Muralla.Google Scholar
  18. Schalock, R. L. (Ed.). (1996). Quality of life: Vol. I. Conceptualization and measurement. Washington, DC: American Association on Mental Retardation.Google Scholar
  19. Schalock, R. L. (Ed.). (1997). Quality of life: Vol. II. Application to persons with disabilities. Washington, DC: American Association on Mental Retardation.Google Scholar
  20. Schalock, R. L., Brown, I., Brown, R., Cummins, R. A., Felce, D., Matikka, L., et al. (2002). Conceptualization, measurement and application of quality of life for persons with intellectual disabilities: Report of an international panel of experts. Mental Retardation, 40(6), 457–470.CrossRefGoogle Scholar
  21. Schalock, R. L., Gardner, J. F., & Bradley, V. J. (2007). Quality of life for people with intellectual and other developmental disabilities. Washington, DC: American Association on Intellectual and Developmental Disabilities.Google Scholar
  22. Schalock, R. L., & Verdugo, M. A. (2002). Handbook on quality of life for human services practitioners. Washington, DC: American Association on Mental Retardation.Google Scholar
  23. Summers, J. A., Poston, D., Turnbull, A. P., Marquis, J., Hoffman, L., Mannan, H., et al. (2005). Conceptualizing and measuring family quality of life. Journal of Intellectual Disability Research, 49(10), 777–783.CrossRefGoogle Scholar
  24. Turnbull, A., Brown, I., & Turnbull, R. (Eds.). (2004). Families and people with mental retardation and quality of life: International perspectives. Washington, DC: American Association on Mental Retardation.Google Scholar
  25. Turnbull, A. P., Turbiville, V., & Turnbull, H. R. (2000). Evolution of family-professional partnership models: Collective empowerment as the model for the early 21st century. In J. P. Shonkoff & S. L. Meisels (Eds.), The handbook of early childhood intervention (pp. 630–650). New York: Cambridge University Press.CrossRefGoogle Scholar
  26. Verdugo, M. A., Córdoba, L., & Gómez, J. (2005). Spanish adaptation and validation of the family quality of life survey. Journal of Intellectual Disability Research, 49(10), 794–798.CrossRefGoogle Scholar
  27. Wang, M., Summers, J. A., Little, T., Turnbull, A. P., Poston, D., & Mannan, H. (2006). Perspectives of fathers and mothers of children in early intervention programmes in assessing family quality of life. Journal of Intellectual Disability Research, 50(12), 977–988.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media B.V. 2010

Authors and Affiliations

  • Climent Giné
    • 1
  • Marta Gràcia
    • 2
  • Rosa Vilaseca
    • 2
  • Anna Balcells
    • 1
  1. 1.Ramon Llull UniversityBarcelonaSpain
  2. 2.Barcelona UniversityBarcelonaSpain

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