Advertisement

Individual and Family Quality of Life in Intellectual Disability: A Challenging Relationship

  • Marco Bertelli
  • Annamaria Bianco
  • Daniela Scuticchio
  • Ivan Brown
Chapter
Part of the Social Indicators Research Series book series (SINS, volume 48)

Abstract

Recently, new patient-oriented outcome measures have emerged in disability research and practice. Among these, quality of life (QoL) has gained a central place. Nevertheless, most published articles on QoL still refer to health-related aspects and not to generic ones. The QoL approach represents an effort to mobilize and revalue resources that can help a person (and the holistic system that they represents) to embark on or to continue a lifespan curriculum of life skills development and enjoyment. Despite family QoL is emerging as an important research framework to understand the impact of individuals with ID on the quality of life of their family members, there is a lack of specific knowledge on the relationship between family and individual QoL. This chapter aims to study the correlation between QoL scores of individuals with ID and members of their families. Sixty-five parents or relatives of 65 subjects with ID were recruited in five different facilities across Italy to be administered the Italian adaptation of the Family Quality of Life Survey. QoL of subjects with ID was assessed through the administration of the Italian validation of Quality of Life Instrument Package (BASIQ). Some significant correlations were found between most family QoL area scores and all areas scores of individual QoL. Although further research is required, results suggest that QoL is expressed in somewhat different ways for individuals with ID and in members of their families. Such differences could impact QoL of people with ID, especially in those areas with the strongest correlations.

Keywords

Intellectual Disability Intellectual Disability Family Quality Intellectual Developmental Disorder Opportunity Score 
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.

References

  1. American Psychiatric Association. (2000). DSM-IV-TR Diagnostic and statistic manual of mental disorders (4th ed., text revision). Washington, DC/London: American Psychiatric Association.Google Scholar
  2. Becker, M., Diamond, R., & Sainfort, F. (1993). A new patient focused index for measuring quality of life in persons with severe and persistent mental illness. Quality of Life Research, 2(4), 239–251.CrossRefGoogle Scholar
  3. Bertelli, M., & Brown, I. (2006). Quality of life for people with intellectual disabilities. Current Opinion in Psychiatry, 19, 508–513.CrossRefGoogle Scholar
  4. Bertelli, M., Rossi, M., Scuticchio, D., & Bianco, A. (2009, September 3–5). Italian validation of the family quality of life survey: First results. In Proceedings of the VII mental health in intellectual disability (MH-ID) European Congress (p. 69). Amsterdam: MH-ID.Google Scholar
  5. Bertelli, M., Bianco, A., Rossi, M., Scuticchio, D., & Brown, I. (2011a). Relationship between individual quality of life and family quality of life for people with intellectual disability living in Italy. Journal of Intellectual Disability Research, 55(12), 1136–1150.CrossRefGoogle Scholar
  6. Bertelli, M., Piva Merli, M., Bianco, A., Lassi, S., La Malfa, G., Placidi, G. F., et al. (2011b). La batteria di strumenti per l’indagine della qualità di vita (BASIQ): validazione dell’adattamento italiano del Quality of Life Instrument Package (QoL-IP). Giornale Italiano di Psicopatologia, 17(2), 205–212.Google Scholar
  7. Booth, C. L., & Kelly, J. F. (1999). Child care and employment in relation to infants’ disabilities and risk factors. American Journal on Mental Retardation, 104, 343–364.CrossRefGoogle Scholar
  8. Bouras, N., & Drummond, C. (1992). Behavior and psychiatric disorders of people with mental handicaps living in the community. Journal of Intellectual Disability Research, 36, 349–357.CrossRefGoogle Scholar
  9. Brown, I., & Brown, R. I. (2003). Quality of life and disability: An approach for community practitioners. London: Jessica Kingsley Publishing.Google Scholar
  10. Brown, I., Raphael, D., & Renwick, R. (1997). Quality of life of adults with developmental disabilities in Ontario: Results from the cross-sectional study. Report to Developmental Services Branch, Ontario Ministry of Community and Social Services.Google Scholar
  11. Brown, I., Raphael, D., & Renwick, R. (1998). Quality of life instrument package for adults with developmental disabilities, short version: Manual and instruments. Toronto: Centre for Health Promotion/University of Toronto.Google Scholar
  12. Brown, I., Anand, S., Fung, A. W. L., Isaacs, B. J., & Baum, N. (2003). Family quality of life: Canadian results from an international study. Journal of Developmental and Physical Disabilities, 15, 207–230.CrossRefGoogle Scholar
  13. Brown, I., Brown, R. I., Baum, N. T., Isaacs, B. J., Myerscough, T., Neikrug, S., et al. (2006a). Family quality of life – 2006: Main caregivers of people with intellectual disabilities. Toronto: Surrey Place Centre.Google Scholar
  14. Brown, R., MacAdam-Crisp, J., Wang, M., & Iarocci, G. (2006b). Family quality of life when there is a child with a developmental disability. Journal of Policy and Practice in Intellectual Disabilities, 3, 238–245.CrossRefGoogle Scholar
  15. Costello, H., & Bouras, N. (2006). Assessment of mental health problems in people with intellectual disabilities. Israel Journal of Psychiatry & Related Sciences, 43(4), 241–251.Google Scholar
  16. De Girolamo, G., Becchi, M. A., Coppa, F. S., et al. (2001). Tra evidence-based medicine e misure di qualità della vita: una sintesi possibile. In G. De Girolamo (Ed.), Salute e Qualità della Vita. Torino: Centro Scientifico Editore.Google Scholar
  17. Deb, S., Thomas, M., & Bright, C. (2001). Mental disorder in adults with intellectual disability. 1: Prevalence of functional psychiatric illness among a community-based population aged between 16 and 64 years. Journal of Intellectual Disability Research, 45, 495–505.CrossRefGoogle Scholar
  18. Emerson, E., Hatton, C., Thompson, T., & Parmenter, T. (2004). The international handbook of applied research in intellectual disability. Chichester: Wiley.CrossRefGoogle Scholar
  19. Ferguson, P. M., Ferguson, D. L., & Jones, D. (1988). Generations of hope: Parental perspectives on the transitions of their children with severe mental retardation from school to adult life. Journal of the Association for Persons with Severe Handicaps, 13, 177–187.Google Scholar
  20. Mactavish, J. B., MacKay, K. J., Iwasaki, Y., & Betleridge, D. (2007). Family caregivers of individuals with intellectual disability: Perspectives on life quality and the role of vacations. Journal of Leisure Research, 39(1), 127–155.Google Scholar
  21. McIntyre, L. L., Kraemer, B. R., Blacher, J., & Simmerman, S. (2004). Quality of life for young adults with severe intellectual disability: Mother’s thoughts and reflections. Journal of Intellectual & Developmental Disability, 29(2), 131–146.CrossRefGoogle Scholar
  22. Olson, A. L., & DiBrigida, L. A. (1994). Depressive symptoms and work role satisfaction in mothers of toddlers. Pediatrics, 94, 363–367.Google Scholar
  23. Salvador-Carulla, L., & Bertelli, M. (2008). ‘Mental retardation’ or ‘intellectual disability’: Time for a conceptual change. Psychopathology, 41(1), 10–16.CrossRefGoogle Scholar
  24. Schalock, R. L. (2005). Special issue on quality of life: Introduction and overview. Journal of Intellectual Disability Research, 49(10), 695–698.CrossRefGoogle Scholar
  25. Seltzer, M. M., & Krauss, M. W. (2001). Quality of life of adults with mental retardation/developmental disabilities who live with family. Mental Retardation and Developmental Disabilities Research Reviews, 7, 105–114.CrossRefGoogle Scholar
  26. Smith, T. B., Innocenti, M. S., Boyce, G. C., & Smith, C. (1993). Depressive symptomatology and interaction behaviors of mothers having a child with disabilities. Psychological Reports, 73, 1184–1186.CrossRefGoogle Scholar
  27. Summers, J. A., Poston, D. J., Turnbull, A. P., Marquis, J. G., Hoffman, L., Mannan, H., et al. (2005). Conceptualizing and measuring family quality of life. Journal of Intellectual Disability Research, 49, 777–783.CrossRefGoogle Scholar
  28. Todd, S., Young, P., Shearn, J., & Jones, S. (2004). Family quality of life in Wales. In A. Turnbull, I. Brown, & R. Turnbull (Eds.), Families and persons with mental retardation and quality of life: International perspectives. Washington, DC: American Association on Mental Retardation.Google Scholar
  29. Turnbull, A., & Turnbull, R. (1990). Families, professionals, and exceptionalities: A special partnership. Columbus: Merrill.Google Scholar
  30. Turnbull, A., Brown, I., & Turnbull, R. (Eds.). (2004). Families and persons with mental retardation and quality of life: International perspectives. Washington, DC: American Association on Mental Retardation.Google Scholar
  31. Turnbull, A. P., Summers, J. A., Lee, S. H., & Kyzar, K. (2007). Conceptualization and measurement of family outcomes associated with families of individuals with intellectual disabilities. Mental Retardation and Developmental Disabilities Research Reviews, 13, 346–356.CrossRefGoogle Scholar
  32. United Nations. (2006). Final report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities, UN Web Services Section. Department of Public Information: United Nations.Google Scholar
  33. Verdugo, M. A., Schalock, R. L., Keith, K. D., & Stancliffe, R. J. (2005). Quality of life and its measurement: Important principles and guidelines. Journal of Intellectual Disability Research, 49(10), 707–717.CrossRefGoogle Scholar
  34. Wang, M., Turnbull, A. P., Summers, J. A., Little, T. D., Poston, D. J., Mannan, H., et al. (2004). Severity of disability and income as predictors of parents’ satisfaction with their family quality of life during early childhood years. Research & Practice for Persons with Severe Disabilities, 29, 82–94.CrossRefGoogle Scholar
  35. World Health Organization. (1993). The ICD-10 classification of mental and behavioural disorders – Diagnostic criteria for research. Geneva: WHO.Google Scholar
  36. World Health Organization. (2007). Atlas: Global resources for persons with intellectual disabilities. Geneva: WHO Press.Google Scholar

Copyright information

© Springer Science+Business Media B.V. 2012

Authors and Affiliations

  • Marco Bertelli
    • 1
    • 2
  • Annamaria Bianco
    • 1
  • Daniela Scuticchio
    • 1
  • Ivan Brown
    • 3
  1. 1.CREA (AMG Research and Evolution Centre)FlorenceItaly
  2. 2.AISQuV (Italian Association for the Study of Quality of Life)FlorenceItaly
  3. 3.Faculty of Social WorkUniversity of TorontoTorontoCanada

Personalised recommendations