The Development of a Health Status Measure for Self-report by People with Intellectual Disabilities
Loraine Ruddick,
Chris Oliver,
Loraine Ruddick
Psychology Services, Sutton Coldfield, West Midlands, UK
Search for more papers by this authorChris Oliver
School of Psychology, The University of Birmingham, Edgebaston, Birmingham, UK
Search for more papers by this authorLoraine Ruddick,
Chris Oliver,
Loraine Ruddick
Psychology Services, Sutton Coldfield, West Midlands, UK
Search for more papers by this authorChris Oliver
School of Psychology, The University of Birmingham, Edgebaston, Birmingham, UK
Search for more papers by this authorAbstract
Background Health status is an important domain of quality of life of people with intellectual disabilities. This paper describes the development of a self-report health status measure for use with people with intellectual disabilities living in staffed community-based accommodation, and reports preliminary reliability data for the schedule.
Method Question and response items were adapted from a well-established measure (SF-36) used in the general population incorporating subscales such as General Health, Physical Functioning, Bodily Pain, Vitality, Mental Health, and Sensory Functioning. A variety of closed and open response formats were used based on the growing literature examining methods for interviewing people with intellectual disabilities.
Results Internal reliability and response consistency were investigated. Reliability for Physical Functioning, General Health and Bodily Pain was reasonable, but was unsatisfactory for Sensory Functioning, and Mental Health.
Conclusions The findings are discussed in light of the challenge of eliciting reliable responses from people with intellectual disabilities. Question methodologies can be built upon in further research.
References
- Aitchinson C., Easty D. L. & Jancar J. (1990) Eye abnormalities in the mentally handicapped. Journal of Mental Deficiency Research 34, 41–48.
-
Atkinson D. (1988) Research interviews with people with mental handicaps.
Mental Handicap Research
1, 75–90.
10.1111/j.1468-3148.1988.tb00006.x Google Scholar
- Aylward E. H., Burt D. B., Thorpe L. U., Lai F. & Dalton A. J. (1995) Diagnosis of Dementia in Individuals with Intellectual Disability. American Association on Mental Retardation, Washington, DC.
- Bergner M., Bobbitt R. A., Carter W. B. & Gilson B. S. (1981) The Sickness Impact Profile: development and final revision of a health status measure. Medical Care 19, 787–805.
- Bieri D., Reeve R. A., Champion G. D., Addicoat L. & Ziegler J. (1990) The faces pain scale for the self-assessment of the severity of pain experienced by children: development, initial validation, and preliminary investigation for ratio scale properties. Pain 41, 139–150.
- Cummins R. (1992) Comprehensive Quality of Life Scale – Intellectual Disability (COMQol-ID), 3rd edn. Deakin University, Australia.
- Cummins R. A. (1997) Self-rated quality of life scales for people with an intellectual disability: a review. Journal of Applied Research in Intellectual Disabilities 10, 199–216.
- Dagnan D. & Ruddick L. (1995) The use of analogue scales and personal questionnaires for interviewing people with learning disabilities. Clinical Psychology Forum 79, 21–24.
-
Dagnan D.,
Dennis S. &
Wood H. (1994) A pilot study of the satisfaction of people with learning disabilities with the services they receive from community psychology services.
British Journal of Developmental Disabilities
78, 38–44.
10.1179/bjdd.1994.006 Google Scholar
- Department of Health (1998) Signposts for Success. HMSO, London.
- Dunn L., Dunn L., Whetton C. & Pintillie D. (1982) The British Picture Vocabulary Scale. NFER-Nelson Publishing Co. Ltd, Windsor.
- Evenhuis H. M. (1997) The natural history of dementia in ageing people with intellectual disability. Journal of Intellectual Disability Research 41, 92–96.
- Everitt B. S. (1996) Making Sense of Statistics in Psychology. Oxford University Press, Oxford.
- Felce D. & Perry J. (1995) Quality of life: its definition and measurement. Research in Developmental Disabilities 16, 51–74.
- Heal L. W. & Chadsey-Rusch J. (1985) The Lifestyle Satisfaction Scale (LSS): assessing individuals’ satisfaction with residence, community setting and associated services. Applied Research in Mental Retardation 6, 475–490.
- Heal L. D. & Sigelman C. K. (1996) Methodological issues in quality of life measurement. In: Quality of Life, Vol 1: Conceptualisation and Measurement (ed. R. L. Schalock), pp. 91–104. American Association on Mental Retardation, Washington, DC.
- Hunt S. M., McKenna S., McEwen J., Williams J. & Papp E. (1981) The Nottingham Health Profile: subjective health status and medical consultations. Social Science in Medicine 15A, 221–229.
- Janicki M. P., Davidson P. W., Henderson C. M., McCallion P., Taets J. D., Force L. T., Sulkes S. B., Frangenberg E. & Ladrigan P. M. (2002) Health characteristics and health services utilization in older adults with intellectual disability living in community residences. Journal of Intellectual disability Research 46, 287–298.
- Jansen D. E. M. C., Krol B., Groothoff J. W. & Post D. (2004) People with intellectual disability and their health problems: a review of comparative studies. Journal of Intellectual Disability Research 48, 93–102.
-
Jones J.,
Dagnan D. &
Ruddick L. (1997) A pilot study of the use of the SF-36 to assess health status of adults with learning disabilities living in small community based homes.
British Journal of Developmental Disabilities
84, 27–35.
10.1179/bjdd.1997.004 Google Scholar
- Jordens W. C. S., Evenhuis H. M. & Janssen C. G. C. (1997) Ageing and cognitive decline in people with Down's syndrome. The British Journal of Developmental Disabilities 43, 79–84.
- Kapell D., Nightingale B., Rodriguez A., Lee J. H., Zigman W. B. & Schupf N. (1998) Prevalence of chronic medical conditions in adults with mental retardation: comparison with the general population. Mental Retardation 36, 269–279.
-
Kerr M.,
Fraser W. &
Felce D. (1996) Primary health care for people with a learning disability: a keynote review.
British Journal of Learning Disability
24, 2–8.
10.1111/j.1468-3156.1996.tb00192.x Google Scholar
- Kushlick A., Blunden R. & Cox G. (1973) A method of rating behaviour characteristics for use in large scale surveys of mental handicap. Psychological Medicine 3, 466–478.
- Lindsay W., Machie A., Baty F., Smith A. & Millar S. (1994) The consistency of reports about feelings and emotions for people with learning difficulties. Journal of Intellectual Disability Research 38, 61–66.
- Lowe K. & De Paiva S. (1988) Canvassing the views of people with a mental handicap. The Irish Journal of Psychology 9, 220–234.
- Matikka L. M. (1996) Effects of psychological factors on the perceived quality of life of people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 9, 115–128.
- Matikka L. M. & Vesala H. T. (1997) Acquiescence in quality-of-life interviews with adults who have mental retardation. Mental Retardation 35, 75–82.
- Perry J. & Felce D. (1994) Outcomes of ordinary housing services in Wales: objective indicators. Mental Handicap Research 7, 286–311.
- Pitts M. (1998) An introduction to health psychology. In: The Psychology of Health, 2nd edn (eds M. Pitts & K. Phillips), pp. 3–23. Routledge, London.
- Sarafino E. P. (1990) Health Psychology: Biopsychosocial Interactions. John Wiley & Sons, New York.
- Saxby H., Felce D., Harman M. & Repp A. (1988) The maintenance of client activity and staff-client interaction in small community homes for severely and profoundly handicapped adults: a two year follow-up. Behavioural Psychotherapy 16, 189–206.
- 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, 457–470.
- Sigelman C., Budd E., Spanhel C. & Schoenrock C. (1981) Asking questions of retarded persons: a comparison of yes/no and either/or formats. Applied Research in Mental Retardation 2, 347–357.
- Smith P. & McCarthy G. (1996) The development of a semi-structured interview to investigate the attachment-related experiences of adults with learning disabilities. British Journal of Learning Disabilities 24, 154–160.
- Turner S. & Moss S. (1996) The health needs of adults with learning disabilities and the health of the nation strategy. Journal of Intellectual Disability Research 40, 438–450.
- Wadsworth J. S. & Harper D. C. (1991) Increasing the reliability of self-report by adults with moderate mental retardation. Journal of the Association for People with Severe Handicaps 16, 228–232.
- Walsh K. K. & Kastner T. A. (1999) Quality of health care for people with developmental disabilities: the challenge of managed care. Mental Retardation 37, 1–15.
- Ware J. E., Snow K. K., Kosinski M. & Gandek B. (1993) SF-36 Health Survey. Manual and Interpretation Guide. The Health Institute, New England Medical Centre, Boston.
- Wilson D. & Haire A. (1990) Health care screening for people with a mental handicap living in the community. British Medical Journal 301, 1379–1381.
