Issues concerning self-report data and population-based data sets involving people with intellectual disabilities

Intellectual and Developmental Disabilities

Volumn 51, Issue 5, 2013, Pages 333-348

  Emerson, Eric ^a,c   Felce, David ^b   Stancliffe, Roger J ^c  

^a LANCASTER UNIVERSITY   (United Kingdom)

^b CARDIFF UNIVERSITY   (United Kingdom)

^c UNIVERSITY OF SYDNEY   (Australia)

Author keywords

Intellectual disabilities; Population based data; Proxy; Response bias; Secondary analysi; Self report

Indexed keywords

ADULT; CHILD; HUMAN; INFORMATION PROCESSING; MENTAL PATIENT; OBSERVER VARIATION; OUTCOME ASSESSMENT; PERSONAL AUTONOMY; PRESCHOOL CHILD; PROXY; PSYCHOLOGY; QUALITY OF LIFE; QUESTIONNAIRE; REHABILITATION; REPRODUCIBILITY; STATISTICAL BIAS; STATISTICS AND NUMERICAL DATA;

ADULT; BIAS (EPIDEMIOLOGY); CHILD; CHILD, PRESCHOOL; DATA COLLECTION; HUMANS; MENTALLY DISABLED PERSONS; OBSERVER VARIATION; PATIENT OUTCOME ASSESSMENT; PERSONAL AUTONOMY; PROXY; QUALITY OF LIFE; QUESTIONNAIRES; REPRODUCIBILITY OF RESULTS;

EID: 84885682737     PISSN: 19349491     EISSN: 19349556     Source Type: Journal    
DOI: 10.1352/1934-9556-51.5.333     Document Type: Article

References (66)

1. Balogh, R., Brownell, M., Ouellette-Kuntz, H., & Colantonio, A. (2010). Hospitalisation rates for ambulatory care sensitive conditions for persons with and without an intellectual disability-A population perspective. Journal of Intellectual Disability Research, 54, 820-832.
2. Balogh, R., Hunter, D., & Ouellette-Kuntz, H. (2005). Hospital utilization among persons with an intellectual disability, Ontario, Canada, 1995-2001. Journal of Applied Research in Intellectual Disabilities, 18, 181-190.
3. Boslaugh, S. (2007). Secondary data sources for public health. Cambridge, United Kingdom: Cambridge University Press.
4. Brooks-Gunn, J., Berlin, L. J., Leventhal, T., & Fuligini, A. S. (2000). Depending on the kindness of strangers: Current national data initiatives and developmental research. Child Development, 71, 257-268.
5. Bulmer, M., Sturgis, P., & Allum, N. (Eds.). (2009). The secondary analysis of survey data. London, United Kingdom: Sage.
6. Chapman, D., Scott, K., & Stanton-Chapman, T. (2008). Public health approach to the study of mental retardation. American Journal on Mental Retardation, 113(2), 102-116.
7. Cummins, R. (1997). The comprehensive quality of life scale: Intellectual disability (5th ed.). Melbourne, Australia: Deakin University.
8. Cummins, R. A. (2000). Objective and subjective quality of life: An interactive model. Social Indicators Research, 52, 55-72.
9. Cummins, R. A. (2002). Proxy responding for subjective well-being: A review. International Review of Research in Mental Retardation, 25, 183-207.
10. Cummins, R. A. (2005). Moving from the quality of life concept to a theory. Journal of Intellectual Disability Research, 49, 699-706.
11. Cuthill, F. M., Espie, C. A., & Cooper, S.-A. (2003). Development and psychometric properties of the Glasgow Depression Scale for people with a learning disability: Individual and carer supplement versions. The British Journal of Psychiatry, 182, 347-353.
12. Dunn, L., Dunn, L., Whetton, C., & Burley, J. (1997). The British picture vocabulary scale (2nd ed.). Windsor, United Kingdom: NFER-Nelson.
13. Einfeld, S., & Emerson, E. (2008). Intellectual disability. In M. Rutter, D. Bishop, D. Pine, S. Scott, J. Stevenson, E. Taylor, & A. Thapar (Eds.), Rutter's child and adolescent psychiatry (5th ed.; pp. 820-840). Oxford, United Kingdom: Blackwell.
14. Elsabbagh, M., Divan, G., Koh, Y., Kim, Y. S., Kauchali, S., Marcín, C. Fombonne, E. (2012). Global prevalence of autism and other pervasive developmental disorders. Autism Research, 5, 160-179.
15. Emerson, E. (2012a). Household deprivation, neighbourhood deprivation, ethnicity and the prevalence of intellectual and developmental disabilities. Journal of Epidemiology and Community Health, 66, 218-224.
16. Emerson, E. (2012b). Understanding disabled childhoods: What can we learn from population- based studies?. Children & Society, 26, 214- 222.
17. Emerson, E., & Einfeld, S. (2010). Emotional and behavioural difficulties in young children with and without developmental delay: A bi-national perspective. Journal of Child Psychology and Psychiatry, 51, 583-593.
18. Emerson, E., Einfeld, S., & Stancliffe, R. J. (2011). Predictors of the persistence of conduct difficulties in children with cognitive delay. Journal of Child Psychology and Psychiatry and Allied Disciplines, 52, 1184-1194.
19. Emerson, E., & Glover, G. (2012). The 'transition cliff' in the administrative prevalence of learning disabilities in England. Tizard Learning Disability Review, 17, 139-143.
20. Emerson, E., & Halpin, S. (in press). Anti-social behaviour and police contact among 13-15 year English adolescents with and without mild/ moderate intellectual disability. Journal of Applied Research in Intellectual Disabilities.
21. Emerson, E., & Hatton, C. (2008). The selfreported well-being of women and men with intellectual disabilities in England. American Journal on Mental Retardation, 113, 143-155.
22. Emerson, E., McCulloch, A., Graham, H., Blacher, J., Llewellyn, G., & Hatton, C. (2010). The mental health of parents of young children with and without developmental delays. American Journal on Intellectual and Developmental Disability, 115, 30-42.
23. Emerson, E., Robertson, J., Gregory, N., Hatton, C., Kessissoglou, S., Hallam, A., Netten, A. (2000). Quality and costs of community-based residential supports, village communities, and residential campuses in the UK. American Journal of Mental Retardation, 105, 81-102.
24. Fang, J., Fleck, M. P., Green, A., McVilly, K., Hao, Y., Tan, W., Power, M. (2011). The response scale for the intellectual disability module of the WHOQOL: 5-point or 3-point. Journal of Intellectual Disability Research, 55, 537-549.
25. Felce, D. (1997). Defining and applying the concept of quality of life. Journal of Intellectual Disability Research, 41, 126-143.
26. Finlay, W. M. L., & Lyons, E. (2001). Methodological issues in interviewing and using selfreport questionnaires with people with mental retardation. Psychological Assessment, 13, 319- 335.
27. Fujiura, G. T. (2012). Self-reported health of people with intellectual disability. Intellectual and Developmental Disabilities, 50, 352-369.
28. Glover, G., & Ayub, M. (2010). How people with learning disabilities die. Durham, United Kingdom: Improving Health & Lives: Learning Disabilities Observatory.
29. Glover, G., & Evison, F. (2013). Hospital admissions that should not happen: Admissions for ambulatory care sensitive conditions for people with learning disabilities in England. Stocktonon- Tees, United Kingdom: Learning Disabilities Public Health Observatory.
30. Hatton, C., Emerson, E., Graham, H., Blacher, J., & Llewellyn, G. (2010). Changes in family composition and marital status in families with a young child with cognitive delay. Journal of Applied Research in Intellectual Disabilities, 23, 14-26.
31. Hill, R. A., & Dunbar, R. I. M. (2003). Social network size in humans. Human Nature, 14, 53-72.
32. Hofferth, S. L. (2005). Secondary data analysis in family research. Journal of Marriage & the Family, 67, 891-907.
33. Hussein, S. (2011). The use of 'large scale datasets' in UK social care research. London, United Kingdom: NIHR School for Social Care Research.
34. Kiely, M. (1987). The prevalence of mental retardation. Epidemiologic Reviews, 9, 194-218.
35. Kover, S. T., & Atwood, A. K. (2013). Establishing equivalence: Methodological progress in groupmatching design and analysis. American Journal on Intellectual and Developmental Disabilities, 118, 3-15.
36. Kratochwill, T. R., Hitchcock, J., Horner, R. H., Levin, J. R., Odom, S. L., Rindskopf, D. M., & Shadish, W. R. (2010). Single-case designs technical documentation. Retrieved from http:// ies.ed.gov/ncee/wwc/pdf/wwc_scd.pdf
37. Larson, S., Lakin, K. C., & Anderson, L. L. (2003). Definitions and findings on intellectual and developmental disabilities within the NHIS-D. In B. M. Altman, S. N. Barnartt, G. E. Hendershot, & S. A. Larson (Eds.), Using survey data to study disability: Results from the National Health Interview Survey on Disability (pp. 229-255). Boston, MA: Elsevier.
38. Larson, S., Lakin, K. C., Anderson, L., Kwak, N., Lee, J. H., & Anderson, D. (2001). Prevalence of mental retardation and developmental disabilities: Estimates from the 1994/1995 National Health Interview Survey Disability Supplements. American Journal on Mental Retardation, 106, 231-252.
39. Leonard, H., Nassar, N., Bourke, J., Blair, E., Mulroy, S., De Klerk, N., & Bower, C. (2008). Relation between intrauterine growth and subsequent intellectual disability in a ten-year population cohort of children in Western Australia. American Journal of Epidemiology, 167, 103-111.
40. Leonard, H., Petterson, B., Bower, C., & Sanders, R. (2003). Prevalence of intellectual disability in Western Australia. Paediatric and Perinatal Epidemiology, 17, 58-67.
41. Leonard, H., Petterson, B., De Klerk, N., Zubrick, S. R., Glasson, E., Sanders, R., & Bower, C. (2005). Association of sociodemographic characteristics of children with intellectual disability in Western Australia. Social Science & Medicine, 60, 1499-1513.
42. McVilly, K. R., Burton-Smith, R. M., & Davidson, J. A. (2000). Concurrence between subject and proxy ratings of quality of life for people with and without intellectual disabilities. Journal of Intellectual and Developmental Disability, 25, 19-39.
43. National Center on Birth Defects and Developmental Disabilities. (2010). U.S. surveillance of health of people with intellectual disabilities: A white paper. Atlanta, GA: Centers for Disease Control and Prevention.
44. Novaco, R. W. (1994). Anger as a risk factor for violence among the mentally disordered. In J. Monahan & H. J. Streadman (Eds.), Violence and disorder: Developments in risk assessment (pp. 21-59). Chicago, IL: University of Chicago Press.
45. Perry, J.,&Felce, D. (2002). Subjective and objective quality of life assessment: Responsiveness, response bias and resident:proxy concordance. Mental Retardation, 40, 445-456.
46. Perry, J., & Felce, D. (2005). Correlation between subjective and objective measures of outcome in staffed community housing. Journal of Intellectual Disability Research, 49, 278-287.
47. Petry, K., & Maes, B. (2006). Identifying expressions of pleasure and displeasure by persons with profound and multiple disabilities. Journal of Intellectual and Developmental Disability, 31, 28-38.
48. Robertson, J., Emerson, E., Gregory, N., Hatton, C., Kessissoglou, S., Hallam, A., & Linehan, C. (2001). Social networks of people with mental retardation in residential settings. Mental Retardation, 39, 201-214.
49. Rose, J., Willner, P., Shead, J., Jahoda, A., Gillespie, D., Townson, J., Hood, K. (2013). Different factors influence self-reports and third-party reports of anger by adults with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 26, 410-419.
50. Schalock, R., & Keith, K. (1993). Quality of Life Questionnaire. Worthington, OH: IDS.
51. Schalock, R. L., Brown, I., Brown, R., Cummins, R. A., Felce, D., Matikka, L., 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.
52. Smith, E. (2006). Using secondary data in educational and social research. Maidenhead, United Kingdom: McGraw-Hill.
53. Stancliffe, R. J. (2000). Proxy respondents and quality of life. Evaluation and Program Planning, 23, 89-93.
54. Stancliffe, R., & Parmenter, T. (1999). The Choice Questionnaire: A scale to assess choices exercised by adults with intellectual disability. Journal of Intellectual and Developmental Disability, 24, 107-132.
55. Stancliffe, R. J., Wilson, N. J., Bigby, C., Balandin, S., & Craig, D. (2013). Responsiveness to selfreport questions about loneliness: A comparison of mainstream and intellectual-disabilityspecific instruments. Journal of Intellectual Disability Research. Advance online publication. doi:10.1111/jir.12024
56. Taylor, J. L., Novaco, R. W., Gillmer, B. T., Robertson, A., & Thorne, I. (2005). Individual cognitive-behavioural anger treatment for people with mild-borderline intellectual disabilities and histories of aggression: A controlled trial. British Journal of Clinical Psychology, 44, 367- 382.
57. Thomas, K., Bourke, J., Girdler, S., Bebbington, A., Jacoby, P., & Leonard, H. (2011). Variation over time in medical conditions and health service utilisation of children with Down syndrome. Journal of Pediatrics, 158, 194-200.
58. Totsika, V., & Hastings, R. P. (2012). How can population cohort studies contribute to our understanding of low prevalence clinical disorders?. The case of autism spectrum disorders Neuropsychiatry, 2, 87-91.
59. Totsika, V., Hastings, R. P., Emerson, E., Berridge, D. M., & Lancaster, G. A. (2011). Behavior problems at five years of age and maternal mental health in autism and intellectual disability. Journal of Abnormal Child Psychology, 39, 1137-1147.
60. Totsika, V., Hastings, R. P., Emerson, E., Berridge, D. M., Lancaster, G. A., & Vagenas, D. (in press). Is there a bidirectional relationship between maternal well-being and child problem behaviors? Longitudinal evidence in autism spectrum disorders. Autism Research.
61. Totsika, V., Hastings, R. P., Emerson, E., Lancaster, G. A., & Berridge, D. M. (2011). A population- based investigation of behavioural and emotional problems and maternal mental health: Associations with autism spectrum disorder and intellectual disability. Journal of Child Psychology & Psychiatry and Allied Disciplines, 52, 91-99.
62. Trzesniewski, K. H., Donnellan, M. B., & Lucas, R. E. (2011). Secondary data analysis: An introduction for psychologists. Washington, DC: American Psychological Association.
63. United Nations. (2006). Convention on the rights of persons with disabilities. New York, NY: United Nations.
64. Urbano, R. C., & Hodapp, R. M. (2007). Divorce in families of children with Down syndrome: A population-based study. American Journal on Mental Retardation, 112(4), 261-274.
65. Vartanian, T. P. (2011). Secondary data analysis. Oxford, United Kingdom: Oxford University Press.
66. 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, 707-717.