Skip to main content
Log in

The Impact of Personal and Environmental Characteristics on Quality of Life of People with Intellectual Disability

  • Published:
Applied Research in Quality of Life Aims and scope Submit manuscript

Abstract

The main purpose of this research was to examine the factors that can affect or predict the quality of life (QOL) of people with intellectual disability (ID). Two groups of factors were analyzed: (a) personal characteristics (gender, diagnosis, and age) and (b) environmental characteristics (living circumstances, daytime activity, and geographical location). Data were collected from 1264 individuals with mild or moderate ID levels and their proxies. QOL was assessed by the Escala Pessoal de Resultados (EPR), the Portuguese version of the Personal Outcomes Scale. The results showed that both sets of characteristics influenced the QOL scores of adults with ID. Furthermore, findings revealed that (a) the factors that strongly affected the QOL scores were diagnosis, age, living circumstances, and daytime activity; (b) the factors that strongly predicted the QOL scores were diagnosis, living circumstances, and daytime activity; and (c) the factors self-reported and reported by the proxies were similar. Implications for practitioners, service systems, and public policies that are directed towards addressing the supports of people with ID are discussed.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Similar content being viewed by others

References

  • American Psychiatric Association (2000). Diagnostic and statistical manual of mental disorders text revision: DSM-IV-TR (4th ed.). Washington, DC: American Psychiatric Association.

    Google Scholar 

  • American Psychiatric Association (2014). Diagnostic and statistical manual of mental disorders (5th ed.). Washington, DC: American Psychiatric Association.

    Google Scholar 

  • Andresen, E. (2000). Criteria for assessing the tools of disability outcomes research. Archives of Physical Medicine and Rehabilitation, 81, S15–S20.

    Article  Google Scholar 

  • Balboni, G., Coscarelli, A., Giunti, G., & Schalock, R. (2013). The assessment of the quality of life of adults with intellectual disability: the use of self-report and report of others assessment strategies. Research in Developmental Disabilities, 34, 4248–4254.

    Article  Google Scholar 

  • Bonham, G., Basehart, S., Schalock, R., Marchand, C., Kirchner, N., & Rumenap, J. (2004). Consumer-based quality of life assessment: the Maryland Ask Me! Project. Mental Retardation, 42, 338–355.

    Article  Google Scholar 

  • Bramston, P., Bruggerman, K., & Pretty, G. (2002). Community perspectives and subjective quality of life. International Journal of Disability, Development and Education, 49, 385–397.

    Article  Google Scholar 

  • Brown, I., & Brown, R. (2003). Quality of life and disability: An approach for community practitioners. London, UK: Kingsley.

    Google Scholar 

  • Brown, I., Schalock, R., & Brown, R. (2009). Quality of life: its application to persons with intellectual disabilities and their families-introduction and overview. Journal of Policy and Practice in Intellectual Disabilities, 6, 2–6.

    Article  Google Scholar 

  • Cicchetti, D. (1994). Guidelines, criteria, and rules of thumb for evaluating normed and standardized assessment instruments in psychology. Psychological Assessment, 6, 284–290.

    Article  Google Scholar 

  • Claes, C., Van Hove, G., Van Loon, J., Vandevelde, S., & Schalock, R. (2010a). Quality of life measurement in the field of intellectual disabilities: eight principles for assessing quality of life-related personal outcomes. Social Indicators Research, 98, 61–72.

    Article  Google Scholar 

  • Claes, C., Van Hove, G., Vandevelde, S., Van Loon, J., & Schalock, R. (2010b). Person-centered planning: an analysis of its published literature and effectiveness. Intellectual and Developmental Disabilities, 48, 432–453.

    Article  Google Scholar 

  • Claes, C., Vandevelde, S., Van Hove, G., Van Loon, J., Verschelden, G., & Schalock, R. (2012a). Relationship between self-report and proxy ratings on assessed personal quality of life-related outcomes. Journal of Policy and Practice in Intellectual Disabilities, 9, 159–165.

    Article  Google Scholar 

  • Claes, C., Van Hove, G., Vandevelde, S., Van Loon, J., & Schalock, R. (2012b). The influence of supports strategies, environmental factors, and client characteristics on quality of life-related personal outcomes. Research in Developmental Disabilities, 33, 96–103.

    Article  Google Scholar 

  • Cohen, J. (1988). Statistical Power Analysis for the Behavioural Sciences. New Jersey, NJ: Lawrence Erlbaum Associates Publishers. Retrieved on 7 November 2014, from http://imaging.mrccbu.cam.ac.uk/statswiki/FAQ/effectSize

  • Cummins, R. (2005). Caregivers as managers of subjective wellbeing: A homeostatic perspective. Journal of Applied Research in Intellectual Disabilities, 18, 335–344.

    Article  Google Scholar 

  • De Waele, I., Van Loon, J., Van Hove, G., & Schalock, R. (2005). Quality of life versus quality of care: implications for people and programs. Journal of Policy and Practice in Intellectual Disabilities, 2, 229–239.

    Article  Google Scholar 

  • Dunst, C., & Hamby, D. (2012). Guide for calculating and interpreting effect sizes and confidence intervals in intellectual and developmental disability research studies. Journal of Intellectual and Developmental Disability, 37, 89–99.

    Article  Google Scholar 

  • Fox, J. (1991). Regression diagnostics. Thousand Oaks, CA: Sage.

    Book  Google Scholar 

  • Fujiura, G. (2006). Lessons drawn from the critique of the Hissom closure evaluation. Mental Retardation, 44, 372–375.

    Article  Google Scholar 

  • Gardner, J., & Carran, D. (2005). Attainment of personal outcomes by people with developmental disabilities. Mental Retardation, 43, 157–174.

    Article  Google Scholar 

  • Keith, K., & Bonham, G. (2005). The use of quality of life data at the organization and systems level. Journal of Intellectual Disability Research, 49, 799–805.

    Article  Google Scholar 

  • Kober, R., & Eggleton, I. (2005). The effect of different types of employment on quality of life. Journal of Intellectual Disability Research, 49, 756–760.

    Article  Google Scholar 

  • Lemay, R. (2009). Deinstitutionalization of people with developmental disabilities: A review of the literature. Canadian Journal of Community Mental Health, 28, 181–194.

    Article  Google Scholar 

  • Lipsey, M., & Wilson, D. (2001). Practical meta-analysis (Applied social research methods Series Vol. 49). Thousand Oaks, CA: Sage.

    Google Scholar 

  • Marôco, J. (2007). Análise estatística com utilização do SPSS (3rd ed.). Lisboa, Portugal: Silabo.

    Google Scholar 

  • Neely-Barnes, S., Marcenko, M., & Weber, L. (2008). Does choice influence quality of life for people with mild intellectual disabilities? Intellectual and Developmental Disabilities, 46, 12–26.

    Article  Google Scholar 

  • Perry, J., & Felce, D. (2002). Subjective and objective quality of life assessment: Responsiveness, response bias, and resident: proxy concordance. Mental Retardation, 40, 445–456.

    Article  Google Scholar 

  • Santos, S. (2014). Adaptive behaviour on the Portuguese curricula: A comparison between children and adolescents with and without intellectual disability. Creative Education, 5, 501–509.

    Article  Google Scholar 

  • Schalock, R. (2004). The concept of quality of life: what we know and do not know. Journal of Intellectual Disability Research, 48, 203–216.

    Article  Google Scholar 

  • Schalock, R., & Verdugo, M. (2002). Handbook on quality of life for human service practitioners. Washington, DC: American Association on Mental Retardation.

    Google Scholar 

  • Schalock, R., Brown, I., Brown, R., Cummins, R., 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, 457–470.

    Article  Google Scholar 

  • Schalock, R., Gardner, J., & Bradley, V. (2007). Quality of life for people with intellectual and other developmental disabilities: Applications across individuals, organizations, communities, and systems. Washington, DC: American Association on Intellectual Disability.

    Google Scholar 

  • Schalock, R., Bonham, G., & Verdugo, M. (2008). The conceptualization and measurement of quality of life: implications for program planning and evaluation in the field of intellectual disabilities. Evaluation and Program Planning, 31, 181–190.

    Article  Google Scholar 

  • Schalock, R., Keith, K., Verdugo, M., & Gómez, L. (2010). Quality of life model development and use in the field of intellectual disability. In R. Kober (Ed.), Enhancing the quality of life of people with intellectual disabilities: From theory to practice (pp. 17–32). New York, NY: Springer.

    Chapter  Google Scholar 

  • Schippers, A. (2010). Quality of life in disability studies. Medische Antropologie, 22, 277–288.

    Google Scholar 

  • Schwartz, C., & Rabinovitz, S. (2003). Life satisfaction of people with intellectual disability living in community residences: perceptions of the residents, their parents and staff members. Journal of Intellectual Disability Research, 47, 75–84.

    Article  Google Scholar 

  • Seltzer, M., & Krauss, M. (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.

    Article  Google Scholar 

  • Simões, C., & Santos, S. (2014). Cross cultural adaptation, validity and reliability of the Escala Pessoal de Resultados. Social Indicators Research, 119, 1065–1077.

    Article  Google Scholar 

  • Simões, C., & Santos, S. (2016a). Comparing the quality of life of adults with and without intellectual disability. Journal of Intellectual Disability Research, 60(4), 378–388. doi:10.1111/jir.12256.

  • Simões, C., & Santos, S. (2016b). The quality of life perceptions of people with intellectual disability and their proxies. Journal of Intellectual & Developmental Disability, in press.

  • Simões, C., Santos, S., & Claes, C. (2015a). The Portuguese version of personal outcomes scale: A psychometric validity and reliability study. Intellectual and Developmental Disabilities, 53, 129–142.

    Article  Google Scholar 

  • Simões, C., Santos, S., & Biscaia, R. (2015b). Validation of the Portuguese version of the personal outcomes scale. International Journal of Clinical and Health Psychology. doi:10.1016/j.ijchp.2015.11.002.

    Google Scholar 

  • Simões, C., Santos, S., & Claes, C. (2015c). Quality of life assessment in intellectual disabilities: the Escala Pessoal de Resultados versus the World health quality of Life-BREF. Research in Developmental Disabilities, 37, 171–181.

    Article  Google Scholar 

  • Sousa, J., Casanova, J., Pedroso, P., Mota, A., Gomes, A., Seiceira, F., et al. (2007). O sistema de reabilitação e as trajectórias de vida das pessoas com deficiências e incapacidades em Portugal. Vila Nova de Gaia, Portugal: CRPG.

    Google Scholar 

  • Straughen, J., Caldwell, C., Osypuk, T., Helmkamp, L., & Misra, D. (2013). Direct and proxy recall of childhood socio-economic position and health. Paediatric and Perinatal Epidemiology, 27, 294–302.

    Article  Google Scholar 

  • Tamamović, A. (2015). The impact of the crisis on fundamental rights across member States of the EU: Comparative analysis. Brussels, Belgium: European Union.

    Google Scholar 

  • Thompson, J., Bradley, V., Buntix, W., Schalock, R., Shogren, K., Snell, M., et al. (2009). Conceptualizing supports and the support needs of people with intellectual disability. Intellectual and Developmental Disabilities, 47, 135–146.

    Article  Google Scholar 

  • Townsend-White, C., Pham, A., & Vassos, M. (2012). A systematic review of quality of life measures for people with intellectual disabilities and challenging behaviours. Journal of Intellectual Disability Research, 56, 270–284.

    Article  Google Scholar 

  • Van Loon, J., Van Hove, G., Schalock, R., & Claes, C. (2009). Personal Outcomes Scale: Administration and standardization manual. Ghent, Belgium: Stichting Arduin.

    Google Scholar 

  • Verdugo, M., Schalock, R., Keith, K., & Stancliffe, R. (2005). Quality of life and its measurement: important principles and guidelines. Journal of Intellectual Disability Research, 49, 707–717.

    Article  Google Scholar 

  • Wang, M., Schalock, R., Verdugo, M., & Jenaro, C. (2010). Examining the factor structure and hierarchical nature of the quality of life construct. American Journal on Intellectual and Developmental Disabilities, 115, 218–233.

    Article  Google Scholar 

  • White-Koning, M., Arnaud, C., Bourdet-Loubère, S., Bazex, H., Colver, A., & Grandjean, H. (2005). Subjective quality of life in children with intellectual impairment: how can it be assessed? Developmental Medicine & Child Neurology, 47, 281–285.

    Article  Google Scholar 

  • Wilson, D. (2001). Practical meta-analysis effect size calculator [Computer software]. Retrieved on 12 July 2015, from http://www.campbellcollaboration.org/resources/effect_size_input.php

  • World Medical Association (2008). Declaration of Helsinki: Ethical principles for medical research involving human subjects. Retrieved on 22 December 2014, from http://www.bioetica.ufrgs.br/helsin7.pdf

Download references

Acknowledgments

This manuscript has not been submitted to any other journal.

This manuscript has not been funded by any source.

The research has been approved by the ethics committee of the Centro Hospitalar de São João-Porto.

Thanks for all support.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Cristina Simões.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Simões, C., Santos, S. The Impact of Personal and Environmental Characteristics on Quality of Life of People with Intellectual Disability. Applied Research Quality Life 12, 389–408 (2017). https://doi.org/10.1007/s11482-016-9466-7

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11482-016-9466-7

Keywords

Navigation