Going to the Doctor's

Abstract

The article examines the potential of the focus group as a specific tool for appropriately engaging people with learning disabilities in the research process. The focus group is advocated as an appropriate tool that can `collectivize' the experiences of people who may have limited communication skills. This method can be used in conjunction with others to gain service user viewpoints and to involve people with learning disabilities in research. In the article I share some of the findings from a study which involved people with learning disabilities through a focus group. Issues of how I obtained consent from the participants and how I attempted to acknowledge the power differential between participants and myself as the researcher are highlighted. Obtaining consent and recognizing the power difference between the researcher and people with learning disabilities are put forward as key challenges for those wishing to engage in disability research.

Get full access to this article

View all access options for this article.

References

ARSCOTT, K., DAGNAN, D. & KROESE, B. S. (1998) `Consent to Psychological Research by People with an Intellectual Disability' , Journal of Applied Research in Intellectual Disabilities 11 (2): 77-83 .

BOLLARD, M. (2000) `Going to the Doctor's: The Expectations of People with Down's Syndrome, Their Carers and General Practitioners', unpublished MA dissertation, University of Warwick.

BOOTH, T. & BOOTH, W. (1994) Parenting under Pressure: Mothers and Fathers with Learning Difficulties. Buckingham: Open University .

BOOTH, T. & BOOTH, W. (1996) `The Use of Depth Interviewing with Vulnerable Subjects: Lessons from a Research Study of Parents with Learning Difficulties' , Social Science and Medicine 39 (3): 415-424 .

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 .

CLEMENTS, J., RAPLEY, M. & CUMMINS, M. (1999) `On, To, For, With: Vulnerable People and the Research Practices of the Research Community' , Behavioural and Cognitive Psychotherapy 27: 103-115 .

DETR (1998) Successful Best Value Pilot Authorities Announced. London: Department of the Environment, Transport and the Regions .

DOH (1999) A First Class Service: Quality in the NHS. London: Department of Health .

FRASER, M. & FRASER, A. (2001) `Are People with Learning Disabilities Able to Contribute to Focus Groups on Health Promotion?' , Journal of Advanced Nursing 33 (2): 225-233 .

10.

GOODMAN, K. (1998) `Service User Involvement', in M. BURTON & J. KELLAWAY (eds) Developing and Managing High Quality Services for People with Learning Disabilities, Chapter 16, pp. 257-269. Aldershot: Ashgate .

11.

JOHNSON, A. (1996) ` “It's Good To Talk”: The Focus Group and the Sociological Imagination' , The Sociological Review 4: 517-538 .

12.

KIERNAN, C. (1999) `Participation in Research by People with Learning Disabilities: Origins and Issues' , British Journal of Learning Disabilities 27: 43-47 .

13.

KITZENGER, J. (1994) `The Methodology of Focus Groups: The Importance of Interaction between Research Participants' , Sociology of Health & Illness 16 (1): 103-121 .

14.

KOCH, T., MARKS, J. & TOOKE, E. (2001) `Evaluating a Community Nursing Service: Listening to Voices of Clients with an Intellectual Disability and or Their Proxies' , Journal of Clinical Nursing 10 (3): 352-363 .

15.

KRUGAR, R. (1994) Focus Groups: A Practical Guide for Applied Research. London: Sage .

16.

LANGAN, J., WHITEFIELD, M. & RUSSELL, O. (1994) `Paid and Unpaid Carers: Their Role in and Satisfaction with Primary Care for People with Learning Disabilities' , Health and Social Care 2 (6): 357-365 .

17.

LENNOX, N. G., DIGGENS, J. N. & UGONI, A. M. (1997) `Barriers and Solutions to General Practice Care for People with Learning Disabilities' , Journal of Intellectual Disability Research 41 (5): 380-390 .

18.

LLOYD, M., PRESTON-SHOOT, M., TEMPLE, P., BOGUSIA, W. & WUU, R. (1996) `Whose Project Is It Anyway? Sharing and Shaping the Research and Development Agenda' , Disability & Society 11 (3): 301-315 .

19.

MARTIN, D. M., ROY, A., WELLS, M. B. & LEWIS, J. (1997) `Health Gain through Screening: Users' and Carers' Perspectives of Health Care: Developing Primary Health Care Services for People with an Intellectual Disability' , Journal of Intellectual & Developmental Disability 22 (4): 241-249 .

20.

NORTHWAY, R. (2000) `Disability, Nursing Research and the Importance of Reflexivity' , Journal of Advanced Nursing 32 (2): 391-397 .

21.

OLIVER, M. (1992) `Changing the Social Relations of Research Production?' , Disability, Handicap and Society 7 (2): 101-114 .

22.

ONG, L. M., DE HAES, C. J. M. & HOOES, A. M. (1995) `Doctor-Patient Communication: A Review of the Literature' , Social Science and Medicine 7 (40): 903-918 .

23.

STALKER, K. (1998) `Some Ethical and Methodological Issues in Research with People with Learning Difficulties' , Disability and Society 13 (1): 5-19 .

24.

STEIN, K. (2000) `Caring for People with Learning Disability: A Survey of General Practitioners' Attitudes in Southampton and South West Hampshire' , British Journal of Learning Disabilities 28 (1): 9-15 .

25.

STONE, E. & PRIESTLEY, M. (1996) `Parasites, Pawns and Partners: Disability Research and the Role of Non-Disabled Researchers' , British Journal of Sociology 47 (4): 699-715 .

26.

WARD, L. & SIMONS, K. (1998) `Practising Partnership: Involving People with Learning Difficulties in Research' , British Journal of Learning Disabilities 26 (4): 128-131 .

27.

ZARB, G. (1997) `Researching Disabling Barriers', in C. BARNES & C. MERCER (eds) Doing Disability Research, Chapter 4. pp. 37-48. Leeds: Disability Press .