Quality of life (QOL) is currently a popular and challenging concept within the field of learning disabilities. In this article the measurement of QOL and the challenges involved are examined through Raphael's debates. This includes detailed discussion on objective and subjective measures, value-based and value-free approaches, and traditional versus participatory approaches. The major issue of using self-reports or proxies to gather and measure QOL data is discussed. A short case study demonstrates the authors' experience of administering a particular QOL instrument. The article concludes with a brief review of the future of QOL, and emphasizes the belief that research and practice should involve all individuals concerned.
AGER, A.
(1990) The Life Experiences Checklist. Windsor: NFER-Nelson.
2.
ANTAKI, C.
& RAPLEY, M. (1996) `Questions and Answers to Psychological Assessment Schedules: Hidden Troubles in “Quality of Life” Interviews', Journal of Intellectual Disability Research40 (5): 421-437.
3.
BIRREN, J.
, LUBBEN, J., ROWE, J. & DEUTSCHMAN, D. (1991) The Concept and Measurement of Quality of Life in the Frail Elderly. New York: Academic.
4.
BURKE, A.
, MCMILLAN, J., CUMMINS, L., THOMPSON, A., FORSYTH, W., MCLELAN, J., SNOW, L., FRASER, A., FRASER, M., FULTON, C., MCRINDLE, E., GHILLES, L., LEFORT, S., MILLER, G., WHITEHALL, J., WILSON, J., SMITH, J. & WRIGHT, D. (2002) `Setting Up Participatory Research: A Discussion of the Initial Stages', British Journal of Learning Disabilities30: 1-5.
5.
CHAPPELL, A.
(2000) `Emergence of Participatory Methodology in Learning Difficulty Research: Understanding the Context', British Journal of Learning Disabilities28: 38-43.
6.
CUMMINS, A. R.
(1993) Comprehensive Quality of Life Scale, 4th edn.Melbourne: Deakin University.
7.
CUMMINS, A. R.
(1997) `Self Rated QOL Scales for People with an Intellectual Disability: A Review', Journal of Applied Research in Intellectual Disabilities10 (3): 199-212.
8.
FELCE, D.
& PERRY, J. (1995) `Quality of Life: Its Definition and Measurement', Research in Developmental Disabilities16 (4): 51-74.
9.
GOODE, D.
(1997) `Quality of Life as International Disability Policy: Implications for International Research', in R. L. SCHALOCK (ed.) Quality of Life. Volume II: Application to Persons with Disabilities, pp. 211-221. Washington, DC: American Association on Mental Retardation.
10.
HATTON, C.
(1998) `Whose Quality of Life Is It Anyway? Some Problems with the Emerging Quality of Life Consensus', Mental Retardation36 (2): 104-115.
11.
KEITH, K. D.
(2001) `International Quality of Life: Current Conceptual, Measurement, and Implementation Issues', International Review of Research in Mental Retardation24: 49-74.
12.
KEITH, K. D.
, HEAL, L. W. & SCHALOCK, R. L. (1996) `Cross-Cultural Measurement of Critical Quality of Life Concepts', Journal of Intellectual and Developmental Disability21 (2): 273-293.
13.
MYERS, D. G.
(2000) `The Funds, Friends, and Faith of Happy People', American Psychologist55 (1): 56-67.
14.
NOCON, A.
& QURESHI, H. (1996) Outcomes of Community Care for Users and Carers: A Social Services Perspective. Buckingham: Open University Press.
15.
OUELLETTE-KUNTZ, H.
& MCCREARY, B. (1996) `Quality of Life Assessment for Persons with Severe Developmental Disabilities', in R. RENWICK, I. BROWN & M. NAGLER (eds) Quality of Life in Health Promotion and Rehabilitation, pp. 268-278. Thousand Oaks, CA: Sage.
16.
RAPHAEL, D.
(1996) `Defining Quality of Life: Eleven Debates Concerning its Measurement', in R. RENWICK, I. BROWN & M. NAGLER (eds) Quality of Life in Health Promotion and Rehabilitation, pp. 146-165. Thousand Oaks, CA: Sage.
17.
RAPLEY, M.
, RIDGWAY, J. & BEYER, S. (1998) `Staff:Staff and Staff:Client Reliability of the Schalock and Keith (1993) Quality of Life Questionnaire', Journal of Intellectual Disability Research42: 37-42.
18.
SCHALOCK, R. L.
(1990) `Preface', in R. L. SCHALOCK (ed.) Quality of Life: Perspectives and Issues. Washington, DC: American Association on Mental Retardation.
19.
SCHALOCK, R. L.
(1996) Quality of Life Conceptualization and Measurement, Chapters 12 and 16. Washington, DC: American Association on Mental Retardation.
20.
SCHALOCK, R. L.
& KEITH, K. (1993) Quality of Life Manual, pp. 4-33. Worthington, OH: IDS.
21.
SCHALOCK, R. L.
, BONHAM, G. S. & MARCHAND, C. B. (2000) `Consumer Based Quality of Life Assessment: A Path Model of Perceived Satisfaction', Evaluation and Programme Planning23: 77-87.
22.
SCOTTISH EXECUTIVE
(2000) The Same As You? A Review of Services for People with Learning Disabilities.
23.
SIGELMAN, C. K.
, BUDD, E. C., SPANHEL, C. L. & SCHOENROCK, C. J. (1981) `Asking Questions of Retarded Persons: A Comparison of Yes/No and Either/Or Formats', Applied Research in Mental Retardation2: 347-357.
24.
STALKER, K.
(1998) `Some Ethical and Methodological Issues in Research with People with Learning Difficulties', Disability and Society13 (1): 5-19.
25.
STALKER, K.
& HARRIS, P. (1998) `The Exercise of Choice by Adults with Intellectual Disabilities: A Literature Review', Journal of Applied Research in Intellectual Disabilities2 (1): 60-76.
26.
STANCLIFFE, R. J.
(2000) `Proxy Respondents and Quality of Life', Evaluation and Programme Planning23: 89-93.
27.
VOELKER, S. T.
, SHORE, D. L., BROWN-MORE, C., HILL, L. C., MILLER, L. T. & PERRY, J. (1990) `Validity of Self-Report of Adaptive Behaviour Skills by Adults with Mental Retardation', Mental Retardation28: 305-309.
28.
WOLFENSBERGER, W.
(1994) `Let's Hang Up “Quality of Life” as a Hopeless Term', in D. GOODE (ed.) Quality of Life for Persons with Disabilities: International Perspectives and Issues, pp. 285-321. Cambridge, MA: Brookline.
