In search of the patterns and indicators of quality of life among people with intellectual disability. Review of theoretical approaches and selected empirical studies
Keywords:
intellectual disabilities, quality of lifeAbstract
This article presents the theoretical framework of the current concept of the construct of quality of life as it pertains to persons with intellectual disabilities. The multidimensionality of the concept of quality of life causes that uniform, “generally accepted”, definition has not been developed. However, there are common theoretical reference points: the concept of well-being, theory of needs and theory of development tasks. Research on the quality of life of people with intellectual disabilities has identified eight key, cultural sensitive domains of quality of life. These domains are included in three overarching areas of quality of life: independence, participation in society and well-being. Its subjective indicators have been selected for each domain. This model should be used in designing activities to improve the quality of life of people with intellectual disabilities at the level of public policies as well as assistance and suport practices.
Downloads
References
Adamczak M., Sęk H. (1997), Znaczenie pojęcia „jakość życia” w opiece psychologicznej pacjentów onkologicznych [w:] J. Meyza (red.), Jakość życia w chorobie nowotworowej – wybrane zagadnienia, Wydawnictwo Naukowe PWN.
Allardt E. (1993), Having, Loving, Being: An Alternative to the Swedish Model of Walfera Research [w:] M. Nussbaum, A. Sen, The Quality of Life, Oxford Scholarship, Oxford.
Bańka A. (2005), Jakość życia a jakość rozwoju. Społeczny kontekst płci, aktywności i rodziny [w:] A. Bańka (red.), Psychologia jakości życia, Stowarzyszenie Psychologia i Architektura.
Baurain C., Nader-Grosbois N. (2013), Theory of Mind, Socio-Emotional Problem-Solving, Socio-Emotional Regulation in Children with Intellectual Disability and in Typically Developing Children, Journal of Autism and Developmental Disorders, 43 (5): 1080–1097, https://doi.org/10.1007/s10803-012-1651-4.
Belva B.C., Matson J.L., Sipes M., Bamburg J.W. (2012), An examination of specific communication deficits in adults with profound intellectual disabilities, Research in Developmental Disabilities, 33 (2): 525–529, https://doi.org/10.1016/j.ridd.2011.10.019.
Bernard J. (2018), Rural Quality of Life – Poverty, Satisfaction and Opportunity Deprivation in Different Types of Rural Territories, European Countryside, 10 (2): 191–209, https://doi.org/10.2478/euco-2018-0012.
Bigby C., Beadle-Brown J. (2016), Improving Quality of Life Outcomes in Supported Accommodation for People with Intellectual Disability: What Makes a Difference?, Journal of Applied Research in Intellectual Disabilities, 31 (2): 182–200.
Bonelli R.M., Koenig H.G. (2013), Mental disorders, religion and spirituality 1990 to 2010: A systematic evidence-based review, Journal of Religion and Health, 52 (2), 657–673, https://doi.org/10.1007/s10943-013-9691-4.
Brown I., Hatton C., Emerson E. (2013), Quality of life indicators for individuals with intellectual disabilities: Extending current practice, Intellectual and Developmental Disabilities, 51 (5):316–332, https://doi.org/10.1352/1934-9556-51.5.316.
Brzezińska A., Stolarska M., Zielińska J. (2002), Poczucie jakości życia w okresie dorosłości [w:] K. Appelt, J. Wojciechowska (red.), Zadania i role społeczne w okresie dorosłości, Wydawnictwo Fundacji Humaniora.
Buntinx W.H.E., Schalock R.L. (2010), Models of Disability, Quality of Life, and Individualized Supports: Implications for Professional Practice in Intellectual Disability: Models of Disability, Quality of Life, and Individualized Supports, Journal of Policy and Practice in Intellectual Disabilities, 7 (4): 283–294, https://doi.org/10.1111/j.1741-1130.2010.00278.x.
Corley E.A. (2007), A use-and-transformation model for evaluating public RD: Illustrations from polycystic ovarian syndrome (PCOS) research, Evaluation and Program Planning, 30 (1): 21–35, https://doi.org/10.1016/j.evalprogplan.2006.09.001.
Counted V., Possamai A., Meade T. (2018), Relational spirituality and quality of life 2007 to 2017: An integrative research review, Health and Quality of Life Outcomes, 16, https://doi.org/10.1186/s12955-018-0895-x.
Coyle C.P., Lesnik-Emas S., Kinney W.B. (1994), Predicting life satisfaction among adults with spinal cord injuries, Rehabilitation Psychology, 39 (2): 95–112. https://doi.org/10.1037/h0080309.
Cummins R. A. (1996), The domains of life satisfaction: An attempt to order chaos, Social Indicators Research, 38 (3): 303–328, https://doi.org/10.1007/BF00292050.
Cummins R. A. (2000), Objective and Subjective Quality of Life: An Interactive Model, Social Indicators Research, 52 (1): 55–72, https://doi.org/10.1023/A:1007027822521.
Czapiński J. (1992), Psychologia szczęścia: Przegląd badań teorii cebulowej, Wydawnictwo Akademos.
Daszykowska J. (2007), Jakość życia w perspektywie pedagogicznej, Oficyna Wydawnicza „Impuls”, Kraków.
Davern M., Cummins R.A. (2006), Is life dissatisfaction the opposite of life satisfaction?, Australian Journal of Psychology, 58 (1): 1–7, https://doi.org/10.1080/00049530500125124.
Dlugonski D., Motl R.W. (2012), Possible antecedents and consequences of self-esteem in persons with multiple sclerosis: Preliminary evidence from a cross-sectional analysis, Rehabilitation Psychology, 57 (1): 35–42, https://doi.org/10.1037/a0027176.
Felce D., Perry J. (1995), Quality of life: Its definition and measurement, Research in Developmental Disabilities, 16 (1): 51–74, https://doi.org/10.1016/0891-4222(94)00028-8.
Ferriss A. L. (2002), Religion and the Quality of Life, Journal of Happiness Studies, 3 (3): 199–215, https://doi.org/10.1023/A:1020684404438.
Gardner J.F., Carran D.T. (2005), Attainment of personal outcomes by people with developmental disabilities, Mental Retardation, 43 (3): 157–174, https://doi.org/10.1352/0047-6765(2005).
Golubović S., Skrbić R. (2013), Agreement in quality of life assessment between adolescents with intellectual disability and their parents, Research in Developmental Disabilities, 34 (6): 1863–1869, https://doi.org/10.1016/j.ridd.2013.03.006.
Gorzkowski J.A., Kelly E.H., Klaas S.J., Vogel L.C. (2010), Girls with spinal cord injury: Social and job-related participation and psychosocial outcomes, Rehabilitation Psychology, 55 (1): 58–67, https://doi.org/10.1037/a0018275.
Hagerty M.R., Cummins R.A., Ferriss A.L., Land K., Michalos A.C., Peterson M., Sirgy, J., Vogel J. (2001), Quality of Life Indexes for National Policy, Review and Agenda for Research, Social Indicators Research, 1–96.
Heszen I., Sęk H. (2007), Psychologia zdrowia, Wydawnictwo Naukowe PWN.
Jenaro C., Verdugo M.A., Caballo C., Balboni G., Lachapelle Y., Otrebski W., Schalock R.L. (2005), Cross-cultural study of person-centred quality of life domains and indicators: A replication, Journal of Intellectual Disability Research: JIDR, 49 (Pt 10): 734–739, https://doi.org/10.1111/j.1365-2788.2005.00742.x.
Kaljaèa S., Duèić B., Ðorðić S. (2018), Quality of life in adults with intellectual disabilities: Objective indicators, Specijalna Edukacija i Rehabilitacija, 17 (3): 307–334, https://doi.org/10.5937/specedreh17-18344.
Keith K.D., Heal L.W., Schalock R.L. (1996), Cross-cultural measurement of critical quality of life concepts, Journal of Intellectual and Developmental Disability, 21 (4): 273–293, https://doi.org/10.1080/13668259600033201.
Keith K.D., Schalock R.L. (1994), The measurement of quality of life in adolescence: The Quality of Student Life Questionnaire, American Journal of Family Therapy, 22 (1): 83–87, https://doi.org/10.1080/01926189408251300.
Kim W.H., Lee J., Bezyak J. (2017), Five-Year Quality of Life Trajectories for Persons With Disabilities, Rehabilitation Counseling Bulletin, 61 (1): 8–19, https://doi.org/10.1177/0034355216662201.
King M., Shields N., Imms C., Black M., Ardern C. (2013), Participation of children with intellectual disability compared with typically developing children. Research in Developmental Disabilities, 34(5), 1854–1862. https://doi.org/10.1016/j.ridd.2013.02.029.
Klebaniuk J. (2006), Materialne uwarunkowania jakości życia [w:] B. Bartosz, J. Klebaniuk (red.), Wokół jakości życia - studia psychologiczne, Wydawnictwo „Jakopol”.
Kober R. (2011), The effect of employment on the quality of life of people with intellectual disabilities:A review of the literature [w:] Enhancing the Quality of Life of People with Intellectual Disabilities: From Theory to Practice, Springer Netherlands, 127–136.
Kober R., Eggleton I.R. (2005), The effect of different types of employment on quality of life, Journal of Intellectual Disability Research: JIDR, 49 (Pt 10): 756–760, https://doi.org/10.1111/j.1365-2788.2005.00746.x.
Kortte K.B., Gilbert M., Gorman P., Wegener S.T. (2010), Positive psychological variables in the prediction of life satisfaction after spinal cord injury, Rehabilitation Psychology, 55 (1): 40–47,https://doi.org/10.1037/a0018624.
Kowalik S. (1995), Jakość życia pacjentów w procesie leczenia [w:] B. Waligóra (red.), Elementy psychologii klinicznej, t. 4, Wydawnictwo Naukowe UAM.
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, https://doi.org/10.1352/1944-7558-114.3.193.
Lachapelle Y., Wehmeyer M.L., Haelewyck M.C., Courbois Y., Keith K.D., Schalock R., Verdugo M.A., Walsh P.N. (2005), The relationship between quality of life and self-determination: An international study, Journal of Intellectual Disability Research: JIDR, 49 (Pt 10): 740–744, https://doi.org/10.1111/j.1365-2788.2005.00743.x.
Lundqvist L.O. (2013), Prevalence and risk markers of behavior problems among adults with intellectual disabilities: A total population study in Örebro County, Sweden, Research in Developmental Disabilities, 34 (4): 1346–1356, https://doi.org/10.1016/j.ridd.2013.01.010.
Lyons G. (2011), Quality of Life for Persons with Intellectual Disabilities: A Review of the Literature [w:] R. Kober (red.), Enhancing the Quality of Life of People with Intellectual Disabilities: From Theory to Practice (s. 73–126), Springer Netherlands, https://doi.org/10.1007/978-90-481-9650-0_6.
Manning M.L. (2002), Havighurst’s Developmental Tasks, Young Adolescents, and Diversity, The Michalos A. C. (red.). (2014), Encyclopedia of Quality of Life and Well-Being Research, Springer Netherlands.
Oleś M. (2010), Jakość życia młodzieży w zdrowiu i chorobie, Katolicki Uniwersytet Lubelski Wydawnictwo, Lublin.
Perry J., Felce D. (2005), Factors associated with outcome in community group homes, American Journal of Mental Retardation: AJMR, 110 (2): 121–135, https://doi.org/10.1352/0895-8017(2005)110y.
Raphael D., Brown I., Renwick R., Rootman I. (1996), Assessing the quality of life of persons with developmental disabilities: Description of a new model, measuring instruments, and initial findings, International Journal of Disability, Development and Education, 43 (1): 25–42, https://doi.org/10.1080/0156655960430103.
Rokicka E. (2013), Jakość życia–konteksty, koncepcje, interpretacje [w:] J. Grotowska-Leder, E. Rokicka (red.), Nowy ład? Dynamika struktur społecznych we współczesnych społeczeństwach, Wydawnictwo Uniwersytetu Łódzkiego, Łódź.
Sadowska S. (2006), Jakość życia uczniów z niepełnosprawnością intelektualną w stopniu lekkim, Oficyna Wydawnicza „Impuls”, Kraków.
Sands, D. J., Kozleski, E. B. (1994), Quality of life differences between adults with and without disabilities, Education & Training in Mental Retardation & Developmental Disabilities, 29 (2): 90–101.
Schalock R.L. (2000), Three Decades of Quality of Life, Focus on Autism and Other Developmental Disabilities, 15 (2): 116–127, https://doi.org/10.1177/108835760001500207.
Schalock R.L. (2004), The concept of quality of life: What we know and do not know, Journal of Intellectual Disability Research, 48 (3): 203–216, https://doi.org/10.1111/j.1365-2788.2003.00558.x.
Schalock R.L., Brown I., Brown, R., Cummins R.A., Felce D., Matikka L., Keith K.D., Parmenter T. (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, https://doi.org/10.1352/0047-6765(2002)040I:CMAAOQ 2.0.CO;2.
Schalock R.L., Gardner J.F., Bradley V.J. (2007), Quality of Life: Applications for People with Intellectual and Developmental Disabilities (1 ed.), American Association on Intellectual and Developmental Disabilities.
Schalock R.L., Keith K.D. (1993), Quality of Life Questionnaire Manual, IDS Publischer.
Schalock R.L., Keith K.D., Verdugo M.Á., Gómez L.E. (2011), Quality of Life Model Development and Use in the Field of Intellectual Disability [w:] R. Kober (red.), Enhancing the Quality of Life of People with Intellectual Disabilities: From Theory to Practice(s. 17–32), Springer Netherlands, https://doi.org/10.1007/978-90-481-9650-0_2.
Schalock R.L., Verdugo M. (2002), Handbook on quality of life for human service practitioners, American Association on Mental Retardation.
Schalock R.L., Verdugo M.A., Bonham G.S., Fantova F., Loon J.V. (2008), Enhancing Personal Outcomes: Organizational Strategies, Guidelines, and Examples, Journal of Policy and Practice in Intellectual Disabilities, 5 (4): 276–285, https://doi.org/10.1111/j.1741-1130.2007.00135.x.
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 of Mental Retardation: AJMR, 110 (4): 298–311, https://doi.org/10.1352/0895-8017(2005)110[298:CSOQOL]2.0.CO;2.
Simões C., Santos S. (2016), Comparing the quality of life of adults with and without intellectual disability, Journal of Intellectual Disability Research: JIDR, 60 (4): 378–388, https://doi.org/ 10.1111/jir.12256.
Stancliffe R.J., Abery B.H., Smith J. (2000), Personal control and the ecology of community living settings: Beyond living-unit size and type, American Journal on Mental Retardation, 105 (6): 431–454, https://doi.org/10.1352/0895-8017(2000)105/:PCATEO2.0.CO;2.
Tengs T.O., Yu M., Luistro E. (2001), Health-Related Quality of Life After Stroke A Comprehensive Review, Stroke, 32 (4): 964–972, https://doi.org/10.1161/01.STR.32.4.964.
Tipton L.A., Christensen L., Blacher J. (2013), Friendship Quality in Adolescents with and without an Intellectual Disability, Journal of Applied Research in Intellectual Disabilities, https://doi.org/10.1111/jar.12051.
Veenhoven R. (2000), The Four Qualities of Life: Ordering Concepts and Measures of the Good Life, Journal Of Happiness Studies, 1: 1–39, https://doi.org/10.1023/A:1010072010360.
Veerman J.W., van Yperen T.A. (2007), Degrees of freedom and degrees of certainty: A developmental model for the establishment of evidence-based youth care, Evaluation and Program Planning, 30 (2): 212–221, https://doi.org/10.1016/j.evalprogplan.2007.01.011.
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, 10: 105–123.
Verri A., Cummins R. A., Petito F., Vallero E., Monteath S., Gerosa E., Nappi, G. (1999), An Italian-Australian comparison of quality of life among people with intellectual disability living in the community, Journal of Intellectual Disability Research, 43 (6): 513–522, https://doi.org/10.1046/j.1365-2788.1999.00241.x.
Verté S., Roeyers H., Buysse A. (2003), Behavioural problems, social competence and self-concept in siblings of children with autism, Child: Care, Health and Development, 29 (3): 193–205, https://doi.org/10.1046/j.1365-2214.2003.00331.x.
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, https://doi.org/10.1111/j.1741-1130.2010.00256.x.
Wang M., Schalock R.L., Verdugo M.A., Jenaro C. (2010), Examining the factor structure and hierarchical nature of the quality of life construct, American Journal on Intellectual and Developmental Disabilities, 115 (3): 218–233, https://doi.org/10.1352/1944-7558-115.3.218.
Webster A.A., Carter M. (2007), Social relationships and friendships of children with developmental disabilities: Implications for inclusive settings. A systematic review, Journal of Intellectual and Developmental Disability, 32 (3): 200–213, https://doi.org/10.1080/13668250701549443.
Wehmeyer M.L., Abery B.H. (2013), Self-determination and choice, Intellectual and Developmental Disabilities, 51 (5): 399–411, https://doi.org/10.1352/1934-9556-51.5.399.
Wehmeyer M.L., Schwartz M. (1998), The Relationship Between Self-Determination and Quality of Life for Adults with Mental Retardation, Education and Training in Mental Retardation and Developmental Disabilities, 33 (1): 3–12, JSTOR.
Wnuk M., Zielonka D., Purandare B., Kaniewski A., Klimberg A., Ulatowska-Szostak E., Palicka E., Zarzycki A., Kaminiarz E. (2013), Przegląd koncepcji jakości życia w naukach społecznych, Hygeia Public Health, 48 (1): 10–16.
World Health Organization (1948), Summary report on proceedings, minutes and final acts of the International Health Conference held in New York from 19 June to 22 July 1946, United Nations, World Health Organization, Interim Commission, https://extranet.who.int/iris/restricted/handle/10665/85573.
Young-An R., Won Ho K. (2016), Impact of Employment and Age on Quality of Life of Individuals With Disabilities: A Multilevel Analysis, Rehabilitation Counseling Bulletin, 59 (2): 112–120, https://doi.org/10.1177/0034355215573538.