Quality of Life

  • Haris Memisevic
  • Mirjana Djordjevic
Part of the Autism and Child Psychopathology Series book series (ACPS)


This chapter deals with the topic of quality of life (QOL) in people with intellectual disability (ID). The chapter begins with an overview of scientific interest in QOL research, along with its impact on human development. Following that is a short history of the QOL, followed by attempts to define it and conceptualize it through its various domains and indicators, both general and ID-specific. Then, the chapter provides a description of main constructs related to QOL including empowerment, choice/self-determination, self-advocacy, inclusion, independent living, and person-centered planning. Consequently, the chapter concludes with ideas on how to further enhance QOL in people with ID.


  1. Beadle-Brown, J. (2006). Person-centred approaches and quality of life. Tizard Learning Disability Review, 11(3), 4–12.CrossRefGoogle Scholar
  2. Bilić, M., Bratković, D., & Nikolić, B. (2004). Evaluacija programa osposobljavanja osoba s mentalnom retardacijom za samozastupanje u području samopoštovanja [Evaluation of training program for persons with intellectual disability for self-advocacy and self-respect]. Hrvatska revija za rehabilitacijska istraživanja, 40(1), 1–12.Google Scholar
  3. Bonham, G. S., Basehart, S., Schalock, R. L., Marchand, C. B., Kirchner, N., & Rumenap, J. M. (2004). Consumer-based quality of life assessment: The Maryland Ask Me! Project. Mental Retardation, 42, 338–355.CrossRefPubMedGoogle Scholar
  4. Bramston, P., Chipuer, H., & Pretty, G. (2005). Conceptual principles of quality of life: An empirical exploration. Journal of Intellectual Disability Research, 49(10), 728–733.PubMedCrossRefGoogle Scholar
  5. Calvès, A. E. (2009). Empowerment: The history of a key concept in contemporary development discourse. Revue Tiers Monde, (4), 735–749.CrossRefGoogle Scholar
  6. Cambridge, P., & Carnaby, S. (2005). Person centred planning and care management with people with learning disabilities. London: Jessica Kingsley Publishers.Google Scholar
  7. Cheung Chung, M. (1997). A critique of the concept of quality of life. International Journal of Health Care Quality Assurance, 10(2), 80–84.CrossRefGoogle Scholar
  8. Chou, Y. C., Schalock, R. L., Tzou, P. Y., Lin, L. C., Chang, A. L., Lee, W. P., & Chang, S. C. (2007). Quality of life of adults with intellectual disabilities who live with families in Taiwan. Journal of Intellectual Disability Research, 51(11), 875–883.PubMedCrossRefGoogle Scholar
  9. Chowdhury, M., & Benson, B. A. (2011). Deinstitutionalization and quality of life of individuals with intellectual disability: A review of the international literature. Journal of Policy and Practice in Intellectual Disabilities, 8(4), 256–265.CrossRefGoogle Scholar
  10. Claes, C., Van Hove, G., van Loon, J., Vandevelde, S., & Schalock, R. L. (2010). Quality of life measurement in the field of intellectual disabilities: Eight principles for assessing quality of life-related personal outcomes. Social Indicators Research, 98(1), 61–72.CrossRefGoogle Scholar
  11. Clapton, J. (2009). A transformatory ethic on inclusion: Rupturing concepts of disability and inclusion. Boston, MA: Sense Publishers.Google Scholar
  12. Clark, P. G. (1988). Autonomy, personal empowerment, and quality of life in long-term care. Journal of Applied Gerontology, 7(3), 279–297.CrossRefGoogle Scholar
  13. Cummins, R. A. (1993). Comprehensive quality of life scale (4th ed.). Melbourne, VIC: Deakin University.Google Scholar
  14. Cummins, R. A. (2005). Moving from the quality of life concept to a theory. Journal of Intellectual Disability Research, 49(10), 699–706.PubMedCrossRefGoogle Scholar
  15. Cummins, R. A., & Lau, A. D. L. (2005). Personal wellbeing index-intellectual disability (3rd ed.). Melbourne, VIC: Deakin University.Google Scholar
  16. Curryer, B., Stancliffe, R. J., & Dew, A. (2015). Self-determination: Adults with intellectual disability and their family. Journal of Intellectual and Developmental Disability, 40(4), 394–399.CrossRefGoogle Scholar
  17. Das, D. (2008). Urban quality of life: A case study of Guwahati. Social Indicators Research, 88(2), 297–310.CrossRefGoogle Scholar
  18. Day, H., & Jankey, S. G. (1996). Lessons from the literature: Toward a holistic model of quality of life. In R. Renwick, I. Brown, & M. Nagler (Eds.), Quality of life in health promotion and rehabilitation (pp. 39–62). Thousand Oaks, CA: Sage.Google Scholar
  19. Diener, E., & Suh, E. (1997). Measuring quality of life: Economic, social, and subjective indicators. Social Indicators Research, 40(1-2), 189–216.CrossRefGoogle Scholar
  20. Duvdevany, I., & Arar, E. (2004). Leisure activities, friendships, and quality of life of persons with intellectual disability: Foster homes vs community residential settings. International Journal of Rehabilitation Research, 27(4), 289–296.PubMedCrossRefGoogle Scholar
  21. Eliason, S. L. (1998). Social integration and satisfaction among individuals with developmental disabilities: A sociological perspective. Education and Training in Mental Retardation and Developmental Disabilities, 33(2), 162–167.Google Scholar
  22. Emerson, E., & Hatton, C. (1996). Deinstitutionalization in the UK and Ireland: Outcomes for service users. Journal of Intellectual and Developmental Disability, 21(1), 17–37.CrossRefGoogle Scholar
  23. Eurostat. (2017). Final report of the expert group on quality of life indicators. Luxembourg: Publications Office of the European Union.Google Scholar
  24. Farquhar, M. (1995). Elderly people’s definitions of quality of life. Social Science & Medicine, 41(10), 1439–1446.CrossRefGoogle Scholar
  25. Felce, D., & Emerson, E. (2001). Living with support in a home in the community: Predictors of behavioral development and household and community activity. Developmental Disabilities Research Reviews, 7(2), 75–83.CrossRefGoogle Scholar
  26. Felce, D., & Perry, J. (1995). Quality of life: Its definition and measurement. Research in Developmental Disabilities, 16(1), 51–74.PubMedCrossRefGoogle Scholar
  27. Flannery, K. B., Newton, S., Horner, R. H., Slovic, R., Blumberg, R., & Ard, W. R. (2000). The impact of person centered planning on the content and organization of individual supports. Career Development for Exceptional Individuals, 23(2), 123–137.CrossRefGoogle Scholar
  28. Florian, L. (2000). Inclusive practice: What, why and how? In C. Tilstone, L. Florian, & R. Rose (Eds.), Promoting inclusive practice. London/New York: Routledge Falmer.Google Scholar
  29. Friedman, C. (2017). Self-advocacy services for People with intellectual and developmental disabilities: A national analysis. Intellectual and Developmental Disabilities, 55(6), 370–376.PubMedCrossRefGoogle Scholar
  30. Friedman, C., & Rizzolo, M. C. (2018). Friendship, quality of life, and people with intellectual and developmental disabilities. Journal of Developmental and Physical Disabilities, 30(1), 39–54.CrossRefGoogle Scholar
  31. Gerben Dejong, M. P. A. (1979). Independent living: From social movement to analytic paradigm. Archives of Physical Medicine and Rehabilitation, 60(10), 435–436.Google Scholar
  32. Goode, D. A. (1990). Thinking about and discussing quality of life. Quality of life: Perspectives and issues, 41–57.Google Scholar
  33. Griffiths, D. M., Owen, F., Gosse, L., Stoner, K., Tardif, C. Y., Watson, S., … Vyrostko, B. (2006). Human rights and persons with intellectual disabilities: An action research approach for community based organizational self-evaluation. Journal of Developmental Disabilities, 12, 165–181.Google Scholar
  34. Haas, B. K. (1999). A multidisciplinary concept analysis of quality of life. Western Journal of Nursing Research, 21(6), 728–742.PubMedCrossRefGoogle Scholar
  35. Harner, C. J., & Heal, L. W. (1993). The multifaceted lifestyle satisfaction scale (MLSS): Psychometric properties of an interview schedule for assessing personal satisfaction of adults with limited intelligence. Research in Developmental Disabilities, 14, 221–236.CrossRefPubMedGoogle Scholar
  36. Hartnett, E., Gallagher, P., Kiernan, G., Poulsen, C., Gilligan, E., & Reynolds, M. (2008). Day service programmes for people with a severe intellectual disability and quality of life: Parent and staff perspectives. Journal of Intellectual Disabilities, 12(2), 153–172.PubMedCrossRefGoogle Scholar
  37. Havercamp, S. M. (2017). Presidential address: Promoting health and wellness. Intellectual and Developmental Disabilities, 55(6), 365–369.PubMedCrossRefGoogle Scholar
  38. Hayes, J., & Hannold, E. L. M. (2007). The road to empowerment: A historical perspective on the medicalization of disability. Journal of Health and Human Services Administration, 30(3), 352–377.PubMedGoogle Scholar
  39. Headey, B., & Wearing, A. J. (1992). Understanding happiness: A theory of subjective well-being. Melbourne, VIC: Longman Cheshire.Google Scholar
  40. Heal, L. W., & Chadsey-Rusch, J. (1985). The lifestyle satisfaction scale (LSS): Assessing individuals’ satisfaction with residence, community settings an associated services. Applied Research in Mental Retardation, 6, 470–495.CrossRefGoogle Scholar
  41. Henderson, H., & Lickerman, J. (2000). In P. Flynn (Ed.), Calvert-Henderson quality of life indicators. Bethesda, MD: Calvert Group.Google Scholar
  42. Holburn, S. (2002). How science can evaluate and enhance person-centered planning. Research and Practice for Persons with Severe Disabilities, 27(4), 250–260.CrossRefGoogle Scholar
  43. Isler, A., Beytut, D., Tas, F., & Conk, Z. (2009). A study on sexuality with the parents of adolescents with intellectual disability. Sexuality and Disability, 27, 229–237.CrossRefGoogle Scholar
  44. Karagiannis, A., Stainback, W., & Stainback, S. (2000). Historical overview of inclusion. In W. Stainback & S. Stainback (Eds.), Inclusion: A guide for educators. Baltimore, MD: Brookes Publishing Co.Google Scholar
  45. Keyserlingk, E. W. (1979). Sanctity of life or quality of life in the context of ethics, medicine and law. Ottow: Law Reform Commission of Canada.Google Scholar
  46. Kozma, A., Mansell, J., & Beadle-Brown, J. (2009). Outcomes in different residential settings for people with intellectual disability: A systematic review. American Journal on Intellectual and Developmental Disabilities, 114(3), 193–222.PubMedCrossRefGoogle Scholar
  47. Lachapelle, Y., Wehmeyer, M. L., Haelewyck, M. C., Courbois, Y., Keith, K. D., Schalock, R., … Walsh, P. N. (2005). The relationship between quality of life and self-determination: An international study. Journal of Intellectual Disability Research, 49(10), 740–744.PubMedCrossRefGoogle Scholar
  48. Lee McIntyre, L., Kraemer, B. R., Blacher, J., & Simmerman, S. (2004). Quality of life for young adults with severe intellectual disability: Mothers’ thoughts and reflections. Journal of Intellectual and Developmental Disability, 29(2), 131–146.CrossRefGoogle Scholar
  49. Li, C., Tsoi, E. W., Zhang, A. L., Chen, S., & Wang, C. J. (2013). Psychometric properties of self-reported quality of life measures for people with intellectual disabilities: A systematic review. Journal of Developmental and Physical Disabilities, 25(2), 253–270.CrossRefGoogle Scholar
  50. Mansell, J., & Beadle-Brown, J. (2004). Person-centred planning or person-centred action? Policy and practice in intellectual disability services. Journal of Applied Research in Intellectual Disabilities, 17(1), 1–9.CrossRefGoogle Scholar
  51. Martin, J. E., Huber Marshall, L., & Maxson, L. L. (1993). Transition policy: Infusing self-determination and self-advocacy into transition programs. Career Development for Exceptional Individuals, 16(1), 53–61.CrossRefGoogle Scholar
  52. McDougall, J., Evans, J., & Baldwin, P. (2010). The importance of self-determination to perceived quality of life for youth and young adults with chronic conditions and disabilities. Remedial and Special Education, 31(4), 252–260.CrossRefGoogle Scholar
  53. McGuire, B. E., & Bayley, A. A. (2011). Relationships, sexuality and decision-making capacity in people with an intellectual disability. Current Opinion in Psychiatry, 24(5), 398–402.PubMedCrossRefGoogle Scholar
  54. Meeberg, G. A. (1993). Quality of life: A concept analysis. Journal of Advanced Nursing, 18(1), 32–38.PubMedCrossRefGoogle Scholar
  55. Memisevic, H., Hadzic, S., Ibralic Biscevic, I., & Mujkanovic, E. (2017). Quality of life of people with disabilities in Bosnia and Herzegovina–is there a moderating effect of the health status? Scandinavian Journal of Disability Research, 1–8.Google Scholar
  56. Memisevic, H., Hadzic, S., Zecic, S., & Mujkanovic, E. (2016). Predictors of quality of life in people with intellectual disability in Bosnia and Herzegovina. International Journal on Disability and Human Development, 15(3), 299–304.CrossRefGoogle Scholar
  57. Milton, C. L. (2013). The ethics of defining quality of life. Nursing Science Quarterly, 26(2), 121–123.PubMedCrossRefGoogle Scholar
  58. Morris, J. (2004). Independent living and community care: A disempowering framework. Disability & Society, 19(5), 427–442.CrossRefGoogle Scholar
  59. Niesz, T., Koch, L., & Rumrill, P. D. (2008). The empowerment of people with disabilities through qualitative research. Work, 31(1), 113–125.PubMedGoogle Scholar
  60. Nota, L., Ferrari, L., Soresi, S., & Wehmeyer, M. (2007). Self-determination, social abilities and the quality of life of people with intellectual disability. Journal of Intellectual Disability Research, 51(11), 850–865.PubMedCrossRefGoogle Scholar
  61. Nota, L., Soresi, S., & Perry, J. (2006). Quality of life in adults with an intellectual disability: The evaluation of quality of life instrument. Journal of Intellectual Disability Research, 50, 371–385.CrossRefPubMedGoogle Scholar
  62. O’Brien, P., Thesing, A., Tuck, B., & Capie, A. (2001). Perceptions of change, advantage and quality of life for people with intellectual disability who left a long stay institution to live in the community. Journal of Intellectual and Developmental Disability, 26(1), 67–82.CrossRefGoogle Scholar
  63. Ouellette-Kuntz, H. (1990). A pilot study in the use of the quality of life interview schedule. Social Indicators Research, 23, 283–298.CrossRefGoogle Scholar
  64. Pacione, M. (1982). The use of objective and subjective measures of life quality in human geography. Progress in Geography, 6(4), 495–514.CrossRefGoogle Scholar
  65. Parley, F. F. (2001). Person-centred outcomes: Are outcomes improved where a person-centred care model is used? Journal of Learning Disabilities, 5(4), 299–308.CrossRefGoogle Scholar
  66. Partington, K. (2005). What do we mean by our community? Journal of Intellectual Disabilities, 9, 241–251.PubMedCrossRefGoogle Scholar
  67. Pinquart, M., & Sörensen, S. (2001). Gender differences in self-concept and psychological well-being in old age: A meta-analysis. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 56(4), P195–P213.CrossRefGoogle Scholar
  68. Piro, B. (2017). Understanding the influence of social networks and social roles on individuals with developmental disabilities: Providing opportunities in order to assess quality of life.Google Scholar
  69. Quarrie, J. (1992). Earth Summit’92. The United Nations Conference on Environment and Development, Rio de Janeiro 1992.Google Scholar
  70. Ruddick, L., & Oliver, C. (2005). The development of a health status measure for self-report by people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 18, 143–150.CrossRefGoogle Scholar
  71. Ryndak, D. L., Jackson, L., & Billingsley, F. (2000). Defining school inclusion for students with moderate to severe disabilities: What do experts say? Exceptionality, 8(2), 101–116.CrossRefGoogle Scholar
  72. Schalock, R. L. (2000). Three decades of quality of life. Focus on Autism and Other Developmental Disabilities, 15(2), 116–127.CrossRefGoogle Scholar
  73. Schalock, R. L. (2004a). The concept of quality of life: What we know and do not know. Journal of Intellectual Disability Research, 48(3), 203–216.CrossRefPubMedGoogle Scholar
  74. Schalock, R. L. (2004b). The concept of quality of life: What we know and do not know. Journal of Intellectual Disability ResearchJournal of intellectual disability research, 48(3), 203–216.CrossRefGoogle Scholar
  75. Schalock, R. L., & Keith, K. D. (1993). Quality of life questionnaire manual. Worthington, OH: IDS Publishing Corporation.Google Scholar
  76. Schalock, R. L., & Verdugo, M. A. (2012). A conceptual and measurement framework to guide policy development and systems change. Journal of Policy and Practice in Intellectual Disabilities, 9(1), 63–72.CrossRefGoogle Scholar
  77. Schalock, R. L., Verdugo, M. A., & Braddock, D. L. (2002). Handbook on quality of life for human service practitioners. Washington, DC: American Association on Mental Retardation.Google Scholar
  78. Schalock, R. L., Verdugo, M. A., & Gomez, L. E. (2017). Translating the quality of life concept into practice. In Handbook of positive psychology in intellectual and developmental disabilities (pp. 115–126). Cham: Springer.CrossRefGoogle Scholar
  79. Schalock, R. L., Verdugo, M. A., Jenaro, C., Wang, M., Wehmeyer, M., Jiancheng, X., & Lachapelle, Y. (2005). Cross-cultural study of quality of life indicators. American Journal on Mental Retardation, 110(4), 298–311.PubMedCrossRefGoogle Scholar
  80. Schneider, M. (2005). The quality of life in large American cities: Objective and subjective social indicators. In Citation classics from social indicators research (pp. 101–115). Dordrecht: Springer.CrossRefGoogle Scholar
  81. Schoch, R. (2006). The secrets of happiness: Three thousand years of searching for the good life. New York: Simon and Schuster.Google Scholar
  82. Shogren, K. A., & Shaw, L. A. (2016). The role of autonomy, self-realization, and psychological empowerment in predicting outcomes for youth with disabilities. Remedial and Special Education, 37(1), 55–62.CrossRefGoogle Scholar
  83. Simões, C., & Santos, S. (2017). The impact of personal and environmental characteristics on quality of life of people with intellectual disability. Applied Research in Quality of Life, 12(2), 389–408.CrossRefGoogle Scholar
  84. Simplican, S. C., Leader, G., Kosciulek, J., & Leahy, M. (2015). Defining social inclusion of people with intellectual and developmental disabilities: An ecological model of social networks and community participation. Research in Developmental Disabilities, 38, 18–29.PubMedCrossRefGoogle Scholar
  85. Smith, R. B., Morgan, M., & Davidson, J. (2005). Does the daily choice making of adults with intellectual disability meet the normalisation principle? Journal of Intellectual and Developmental Disability, 30(4), 226–235.CrossRefGoogle Scholar
  86. Spreitzer, G. M. (1996). Social structural characteristics of psychological empowerment. Academy of Management Journal, 39(2), 483–504.Google Scholar
  87. Stancliffe, R. J., & Keane, S. (2000). Outcomes and costs of community living: A matched comparison of group homes and semi-independent living. Journal of Intellectual and Developmental Disability, 25(4), 281–305.CrossRefGoogle Scholar
  88. Stancliffe, R. J., & Parmenter, T. R. (1999). The choice questionnaire: A scale to assess choices exercised by adults with intellectual disability. Journal of Intellectual & Developmental Disability, 24, 107–132.CrossRefGoogle Scholar
  89. Tamaš, D. M. (2015). Tip stanovanja i kvalitet života osoba sa intelektualnom ometenošću (Doctoral dissertation, Univerzitet u Beogradu-Fakultet za specijalnu edukaciju i rehabilitaciju).Google Scholar
  90. Thorndike, E. L. (1904). The newest psychology. Educational Review, 28, 217–227.Google Scholar
  91. Townsend-White, C., Pham, A. N. T., & Vassos, M. V. (2012). A systematic review of quality of life measures for people with intellectual disabilities and challenging behaviours. Journal of Intellectual Disability Research, 56(3), 270–284.CrossRefPubMedGoogle Scholar
  92. UNCRPD (2006). Convention on the rights of persons with disabilities. Retrieved from
  93. Van Loon, J., Van Hove, G., Schalock, R., & Claes, C. (2009). Personal outcomes scale: Administration and standardization manual. Ghent, Netherlands: Stichting Arduin.Google Scholar
  94. Verdonschot, M. M., De Witte, L. P., Reichrath, E., Buntinx, W. H. E., & Curfs, L. M. (2009). Community participation of people with an intellectual disability: A review of empirical findings. Journal of Intellectual Disability Research, 53(4), 303–318.CrossRefPubMedGoogle Scholar
  95. Verdugo, M. Á., Arias, B., Gómez, L. E., & Schalock, R. L. (2010). Development of an objective instrument to assess quality of life in social services: Reliability and validity in Spain. International Journal of Clinical and Health Psychology, 10(1).Google Scholar
  96. Verdugo, M. A., Navas, P., Gómez, L. E., & Schalock, R. L. (2012). The concept of quality of life and its role in enhancing human rights in the field of intellectual disability. Journal of Intellectual Disability Research, 56(11), 1036–1045.CrossRefPubMedGoogle Scholar
  97. 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.CrossRefPubMedGoogle Scholar
  98. Walsh, P. N., Emerson, E., Lobb, C., Hatton, C., Bradley, V., Schalock, R. L., & Moseley, C. (2010). Supported accommodation for people with intellectual disabilities and quality of life: An overview. Journal of Policy and Practice in Intellectual Disabilities, 7(2), 137–142.CrossRefGoogle Scholar
  99. Wehmeyer, M. L., & Abery, B. H. (2013). Self-determination and choice. Intellectual and Developmental Disabilities, 51(5), 399–411.CrossRefPubMedGoogle Scholar
  100. 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 and Child Neurology, 47(4), 281–285.PubMedCrossRefGoogle Scholar
  101. WHOQoL Group. (1995). The World Health Organization quality of life assessment (WHOQOL): Position paper from the World Health Organization. Social Science & Medicine, 41(10), 1403–1409.CrossRefGoogle Scholar
  102. Wolf, S. (1997). Happiness and meaning: Two aspects of the good life. Social Philosophy and Policy, 14(1), 207–225.CrossRefGoogle Scholar
  103. Wolfensberger, W. (1972). The principle of normalization in human services. Toronto, ON: National Institute on Mental Retardation.Google Scholar

Copyright information

© Springer Nature Switzerland AG 2019

Authors and Affiliations

  • Haris Memisevic
    • 1
  • Mirjana Djordjevic
    • 2
  1. 1.Faculty of Educational SciencesUniversity of SarajevoSarajevoBosnia and Herzegovina
  2. 2.Faculty of Special Education and RehabilitationUniversity of BelgradeBelgradeSerbia

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