Research ethics committees and the benefits of involving people with profound and multiple learning disabilities in research

British Journal of Learning Disabilities

Volumn 39, Issue 3, 2011, Pages 173-180

  Boxall, Kathy ^a   Ralph, Sue ^b  

^a UNIVERSITY OF SHEFFIELD   (United Kingdom)

^b UNIVERSITY OF NORTHAMPTON   (United Kingdom)

Author keywords

Profound and multiple learning disabilities; Research ethics; Research methods; Visual methods

Indexed keywords

EID: 79961155774     PISSN: 13544187     EISSN: 14683156     Source Type: Journal    
DOI: 10.1111/j.1468-3156.2010.00645.x     Document Type: Article

References (48)

1. Bach M. & Rock M. (1996) Seeking Consent to Participate in Research From People Whose Ability To Make An Informed Decision Could Be Questioned: The Supported Decision-Making Model. Ontario, The Roeher Institute.
2. Banks M. (2001) Visual Methods in Social Research. London, Sage.
3. BILD (2009) Information and Resources to Support Complaints from People with Learning Disabilities and Complex Communication Needs. Kidderminster, British Institute of Learning Disabilities, - accessed 06/04/2010.
4. Boddy J., Boaz A., Lupton C. & Pahl J. (2006) What counts as research? The implications for research governance in social care. Int J Social Res Methodol, 9: 317-30.
5. Booth T., Simons K. & Booth W. (1990) Outward Bound: Relocation and Community Care for People with Learning Difficulties. Buckingham, Open University Press, pp. 113-28.
6. Boxall K. & Ralph S. (2009) Research ethics and the use of visual images in research with people with intellectual disability. J Intellect Dev Disabil, 34: 45-54.
7. Boxall K., Warren L. & Chau R. (2007) User Involvement. In: Hodgson S., Irving Z., editors. Policy Reconsidered: Meanings, Politics and Practices. Bristol, The Policy Press: 155-72.
8. Brewster S. (2004) Putting words into their mouths? Interviewing people with learning disabilities and little or no speech. British Journal of Learning Disabilities, 32: 166-9.
9. Brydon-Miller M. & Greenwood D. (2006) A re-examination of the relationship between action research and human subjects review processes. Action Res, 4: 117-28.
10. Cambridge P. & Forrester-Jones R. (2003) Using individualised communication for interviewing people with intellectual disability: a case-study of user-centred research. J Intellect Dev Disabil, 28: 5-23.
11. Cameron L. & Murphy J. (2007) Obtaining consent to participate in research: the issues involved in including people with a range of learning and communication disabilities. British Journal of Learning Disabilities, 35: 113-20.
12. Carnaby S. (2004) People with Profound and Multiple Learning Disabilities: A Review of Research About their Lives. London, Mencap.
13. Clements J., Rapley M. & Cummins R. (1999) On, to, for, with - vulnerable people and the practices of the research community. Behav Cogn Psychother, 27: 103-15.
14. Dawkins B. (2009) Valuing Tom: Will Valuing People Now change the lives of people with profound and multiple learning disabilities? Tizard Learn Disabil Rev, 14: 3-12.
15. DH (2001a) Research Governance Framework for Health and Social Care. London, Department of Health.
16. DH (2001b) Valuing People: A New Strategy for Learning Disability for the 21st Century. London, Department of Health.
17. DH (2002) Housing and Support Options for People with Learning Disabilities. London, Department of Health/Office of the Deputy Prime Minister.
18. DH (2005) Research Governance Framework for Health and Social Care, 2nd edn. London, Department of Health.
19. DH (2008) Guidance on Nominating a Consultee for Research Involving Adults Who Lack Capacity to Consent: Issued by the Secretary of State and the Welsh Ministers in Accordance with Section 32(3) of the Mental Capacity Act 2005. London, Department of Health, - accessed 06/04/2010
20. DH (2009a) Valuing People Now: A New Three-year Strategy for People With Learning Disabilities - 'Making it Happen for Everyone'. London, Department of Health.
21. DH (2009b) Valuing People Now: The Delivery Plan - 'Making it Happen for Everyone'. London, Department of Health.
22. Dingwall R. (2006) Confronting the anti-democrats: the unethical nature of ethical regulation in social science. Medical Sociology Online 1, 51-8, - accessed 06/04/2010.
23. Edge J. (2001) Who's in Control?: Decision-Making by People with Learning Difficulties Who have High Support Needs. London, Values Into Action.
24. Emerson E., Malam S., Davies I. & Spencer K. (2005) Adults with Learning Difficulties in England 2003/4. London, NHS Health and Social Care Information Centre, - accessed 06/04/2010.
25. Grant G. & Ramcharan P. (2007) Valuing People and Research: The Learning Disability Research Initiative - Overview Report. London, Department of Health, - accessed 06/04/2010.
26. Griffin T. & Balandin S. (2004) Ethical research involving people with intellectual disabilities. In: Emerson E., Hatton C., Thompson T., Parmenter T.R., editor. The International Handbook of Applied Research in Intellectual Disabilities. Chichester, Wiley: 61-82.
27. Hannigan B. & Allen D. (2003) A tale of two studies: research governance issues arising from two ethnographic investigations into the organisation of health and social care. Int J Nurs Stud, 40: 685-95.
28. Iacono T. (2006) Ethical challenges and complexities of including people with intellectual disability as participants in research. J Intellect Dev Disabil, 31: 173-9.
29. Iacono T. & Murray V. (2003) Issues of informed consent in conducting medical research involving people with intellectual disabilities. J Appl Res Intellect Disabil, 15: 41-52.
30. Johns R. (2007) Who decides now? protecting and empowering vulnerable adults who lose the capacity to make decisions for themselves Br J Soc Work, 37: 557-64.
31. Kiernan C. (1999) Participation in research by people with learning difficulties: origins and issues. British Journal of Learning Disabilities, 27: 43-7.
32. LDRT (The Learning Difficulties Research Team, Catherine Bewley and Linsay McCulloch) (2006) Let Me In - I'm a Researcher! London, Department of Health, - accessed 06/04/2010.
33. McVilly K.R. & Dalton A.J. (2006) Commentary on Iacono (2006): ethical challenges and complexities of including people with intellectual disability as participants in research. J Intellect Dev Disabil, 31: 186-8.
34. Mostert M. (2001) Facilitated communication since 1995: a review of published studies. J Autism Dev Disord, 31: 287-313.
35. Nind M. (2008) Conducting Qualitative Research with People with Learning, Communication and Other Disabilities: Methodological Challenges. Southampton, University of Southampton, National Centre for Research Methods, - accessed 06/04/2010
36. NRES (2007) Research Involving Adults Unable to Consent for Themselves. London, NHS national Patient Safety Agency, - accessed 06/04/2010.
37. PMLD Network (undated) About profound and multiple learning disabilities. PMLD Network - available from accessed 06/04/2010.
38. Porter J., Ouvry C., Morgan M. & Downs C. (2001) Interpreting the communication of people with profound and multiple learning difficulties. Br J Learn Disabil, 29: 12-6.
39. Prosser J. & Loxley A. (2008) Introducing Visual Methods, Esrc Methods Review Paper NCRM/010. Southampton, University of Southampton, National Centre for Research Methods - available from accessed 06/04/2010.
40. Ramcharan P., Grant G. & Flynn M. (2004) Emancipatory and participatory research: How far have we come?. In: Emerson E., Hatton C., Thompson T., Parmenter T., Eds. The International Handbook of Applied Research in Intellectual Disabilities. Chichester, Wiley: 83-114.
41. Richardson S. & McMullan M. (2007) Research Ethics in the UK: What can sociology learn from health? Sociology, 41: 1115-32.
42. Rose G. (2001) Visual Methodologies: An Introduction to the Interpretation of Visual Materials. London, Sage.
43. Rosenblum N. (1997) A World History of Photograph. New York, Abbeville.
44. Schwartz D. (1989) Visual ethnography: using photographs in qualitative research. Qual Sociol, 12: 119-54.
45. SSRG (2005) Research Governance Framework Resource Pack. London, Department of Health Research Governance in Social Care Advisory Group/Association of Directors of Social Services, available from - accessed 06/04/2010.
46. Walmsley J. & Rolph S. (2001) The development of community care for people with learning difficulties 1913 to 1946. Crit Soc Policy, 21: 59-80.
47. Wang C. & Burris M.A. (1997) Photovoice: concept, methodology, and use for participatory needs assessment. Health Edu Behav, 24: 369-87.
48. Webb T. (2004) Photovoice: a starting point for social action? - accessed 06/04/2010.