Using individualised communication for interviewing people with intellectual disability: A case study of user-centred research

Journal of Intellectual and Developmental Disability

Volumn 28, Issue 1, 2003, Pages 5-23

  Cambridge, Paul ^a   Forrester Jones, Rachel ^a  

^a UNIVERSITY OF KENT   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; CASE REPORT; CASE STUDY; CLINICAL RESEARCH; CLINICAL TRIAL; FEMALE; HUMAN; INTELLECTUAL IMPAIRMENT; INTERPERSONAL COMMUNICATION; INTERVIEW; MALE; METHODOLOGY; MULTICENTER STUDY; PHOTOGRAPHY; SIGN LANGUAGE; SYMBOLISM;

EID: 0038032012     PISSN: 13668250     EISSN: None     Source Type: Journal    
DOI: 10.1080/136682503100008687     Document Type: Article

References (63)

1. American Speech-Language-Hearing Association (ASHA). (1991). Report: Augmentative and alternative communication. ASHA, 33 (Suppl. 5), 9-12.
2. Arscott, K. (1997). Assessing the capacity of people with learning disabilities to make decisions about treatment. Tizard Learning Disability Review, 2(2), 17-28.
3. Arscott, K., Dagnan, D., & Kroese, B. (1998). Consent to psychological research by people with an intellectual disability. Journal of Applied Research in Intellectual Disabilities, 11(1), 77-83.
4. Bartlett, C. (1997). The importance of communication partnerships: a study to investigate the communicative exchanges between staff and adults with learning disabilities. British Journal of Learning Disabilities, 25, 148-158.
5. Beukelman, D., & Mirenda, P. (1998). Augmentative and alternative communication: management of severe communication disorders in children and adults. Baltimore: Paul H. Brookes.
6. Blackwell, C., Hulbert, C., Bell, J., Elston, L., Morgan, W., Robertshaw, B., & Tomas, C. (1989). A survey of the communication abilities of people with learning difficulties. Disability, Handicap and Society, 3, 213-226.
7. Bradshaw, J. (1998). Assessing and intervening in the communication environment. British Journal of Learning Disabilities, 26, 62-66.
8. Bradshaw, J. (2000). Commentary: a total communication approach towards meeting the communication needs of people with learning disabilities. Tizard Learning Disability Review, 5(1), 27-30.
9. British Medical Association. (1993). Medical ethics today. London: British Medical Association.
10. British Medical Association and the Law Society. (1995). Assessment of mental capacity: guidance for doctors and lawyers. London: British Medical Association.
11. Brown, H., & Thompson, D. (1997). Service responses to men with intellectual disabilities who have unacceptable or abusive sexual behaviours; the case against inaction. Journal of Applied Research in Intellectual Disabilities, 10(2), 176-197.
12. Brown, J., & Turk, V. (1992). Defining sexual abuse as it affects adults with learning disabilities. Mental Handicap, 20, 44-55.
13. Bull, R. (1995). Interviewing people with communicative disabilities. In R. Bull & D. Carson (Eds.), Handbook of psychology in legal contexts. Chichester: Wiley.
14. Cambridge, P. (1993). Taking account of user choice in community care. In P. Alderson (Ed.), Report on the consent conference series. London: SSRU, Institute of Education, University of London.
15. Cambridge, P. (1997). At whose risk? Priorities and conflicts for policy development in HIV and intellectual disability. Journal of Applied Research in Intellectual Disabilities, 10(2), 83-104.
16. Cambridge, P. (1999). More than just a quick fix? The potential for joint commissioning services for people with learning disabilities. Research, Policy and Planning, 17(2), 12-22.
17. Cambridge, P., & Carnaby, S. (2000). Making it personal: providing intimate and personal care for people with learning disabilities. Brighton: Pavilion.
18. Cambridge, P., Carpenter, J., Beecham, J., Hallam, A., Knapp, M., Forrester-Jones, R., & Tate, A. (2001). Twelve years on: the outcomes and costs of community care for people with learning disabilities and mental health problems. Canterbury: Tizard Centre, University of Kent at Canterbury.
19. Cambridge, P., Hayes, L., & Knapp, M. (1994). Care in the community: five years on. Aldershot: Arena.
20. Cambridge, P., & McCarthy, M. (1997). Developing and implementing sexuality policy for a learning disability provider service. Health and Social Care in the Community, 5(4), 227-236.
21. Cambridge, P., & McCarthy, M. (2001). User focus groups and best value in services for people with learning disabilities. Health and Social Care in the Community, 9(6), 476-489.
22. Carnaby, S. (1997). A comparative approach to evaluating individual planning for people with learning disabilities. Disability and Society, 12, 381-394.
23. Carnaby, S. (1998). Reflections on social integration for people with intellectual disability: does interdependence have a role. Journal of Intellectual & Developmental Disability, 23(3), 219-228.
24. Clare, I., & Gudjonsson, G. (1993). Interrogative suggestibility, confabulation and acquiescence in people with mild learning disability (mental handicap): implications for reliability during policy interrogations. British Journal of Clinical Psychology, 32, 295-301.
25. Conroy, J., & Bradley, V. (1985). The Pennhurst longitudinal study: a report of five years of research and analysis. Boston: Human Services Research Institute, Developmental Disabilities Center, Temple University.
26. Department of Health. (1993). Who decides? Making decisions on behalf of mentally incapacitated adults. A consultation paper issued by the Lord Chancellor's Department. Cm 3803. London: HMSO.
27. Department of Health. (2001). Valuing people: a new strategy for learning disability for the 21st century. London: Department of Health.
28. Downs, C., & Craft, A. (1997). Sex in context. Brighton: Pavilion.
29. Emerson, E., & Hatton, C. (1994). Moving out: relocation from hospital to community. Manchester: University of Manchester/HMSO.
30. Estroff, S. (1995). 'Brokenhearted lifetimes': ethnography, subjectivity and psychosocial rehabilitation. International Journal of Mental Health, 24(1), 82-92.
31. Felce, R. D. (1994). Facilitated communication: results from a number of recently published evaluations. British Journal of Learning Disabilities, 22, 122-126.
32. Flesch, R. (1948). A new readability yardstick. Journal of Applied Psychology, 32, 221-223.
33. Forrester-Jones, R., & Cambridge, P. (1998). The social network guide for Ten Years On. Canterbury: Tizard Centre, University of Kent at Canterbury (unpublished).
34. Forrester-Jones, R., & Grant, G. (1997). Resettlement from large psychiatric hospital to small community residence. Aldershot: Avebury.
35. Grisso, T., & Appelbaum, P. (1998). Assessing competence to consent to treatment. A guide for physicians and other health professionals. Oxford: Oxford University Press.
36. Hewett, D., & Nind, M. (1998). Interaction in action. Reflections on the use of intensive interaction. London: David Fulton Publishers.
37. Jones, J. (1997). Somerset Total Communication. Bridgewater: Somerset Total Communication.
38. Jones, J. (2000). A total communication approach towards meeting the needs of people with learning disabilities. Tizard Learning Disability Review, 5(1), 20-26.
39. Kirk, E. (1995). Research and patients: the legal perspective. In J. Tingle & A. Cross (Eds.), Missing law and ethics. London: Blackwell Science.
40. Knapp, M., Cambridge, P., Thomason, C., Beecham, J., Allen, C., & Darton, R. (1992). Care in the community: challenge and demonstration. Aldershot: Ashgate.
41. Law, J., & Lester, R. (1991). Speech therapy provision in a social education centre: is it possible to target intervention? Mental Handicap, 19, 22-28.
42. McCarthy, M., & Thompson, D. (1994). Sex and staff training: a training manual for staff working with people with learning disabilities. Brighton: Pavilion.
43. Morris, S. (1997). Experiences of risk: the role of therapy in sexual health. In P. Cambridge & H. Brown (Eds.), HIV and learning disability. Kidderminster: British Institute of Learning Disabilities.
44. Murphy, G., & Clare, I. (1997). Consent issues. In J. O'Hara & A. Sperlinger (Eds.), Adults with learning disabilities: a practical approach for health professionals (pp. 171-186). Chichester: John Wiley and Sons.
45. Nirje, B. (1969). The normalisation principle and its human management implications. In R. Kugel & W. Wolfensberger (Eds.), Changing patterns in residential services for the mentally retarded (pp. 179-195). Washington: Government Printing Office.
46. Nocon, A., & Qureshi, H. (1996). Outcomes of community care for users and carers. Buckingham: Open University Press.
47. Oliver, M. (1996). Understanding disability. London: Macmillan.
48. Patton, M. (1997). Utilization focused evaluation. London: Sage.
49. Purvis, K. (1996). Somerset Total Communication: an evaluation of the implementation of Somerset Total Communication. Bridgwater: Avalon Somerset NHS Trust.
50. Remington, B. (1997). Verbal communication in people with learning difficulties: an overview. Tizard Learning Disability Review, 2(4), 6-14.
51. Renshaw, J., Hampson, R., Thomason, C., Darton, R. A., Judge, K., & Knapp, M. (1988). Care in the community: the first steps. Aldershot: Gower.
52. Richards, S. (1985). A right to be heard. Social Services Research, 14(4), 49-56.
53. Scheerenberger, R., & Felsenthal, D. (1977). Community settings for mentally retarded persons: satisfactions and activities. Mental Retardation, 15(4), 3-7.
54. Sigelman, C., Budd, E., Spanhel, C., & Schoenrock, C. (1981). When in doubt say yes: acquiescence in interviews with mentally retarded persons. Mental Retardation, 19, April, 53-58.
55. Simons, K., Booth, T., & Booth, W. (1989). Speaking out: user studies and people with learning difficulties. Research, Policy and Planning, 7(1), 9-17.
56. Sinclair, L. (1997). Assessing the capacity of people with learning disabilities to make decisions about treatment. Tizard Learning Disability Review, 2(2), 29-30.
57. Stalker, K. (1997). Doing research with people with learning difficulties. Research, Policy and Planning, 15(2), 46.
58. Ware, J. (1996). Creating a responsive environment for people with profound and multiple learning difficulties. London: David Fulton.
59. Whittaker, A. (1999). Symbols in practice: a discussion paper about the use of symbols for communication by people with learning disabilities. London: King's Fund.
60. Wolfensberger, W. (1972). Normalisation. Canadian Institute for the Mentally Retarded.
61. Wolfensberger, W. (1983). Social role valorization: a proposed new term for the principle of normalisation. Mental Retardation, 21(6), 235-239.
62. Wong, J. (1997). Assessment of capacity to make treatment decisions in adults with learning disabilities. Tizard Disability Review, 2(3), 35-39.
63. Yorkston, K., Dowden, P., Honsinger, M., Marriner, N., & Smith, K. (1988). A comparison of standard and user vocabulary lists. Augmentative and Alternative Communication, 4(4), 189-210.