Applying the Mental Capacity Act to research with people with learning disabilities

British Journal of Learning Disabilities

Volumn 43, Issue 2, 2015, Pages 128-134

  Jepson, Marcus ^a  

^a UNIVERSITY OF BRISTOL   (United Kingdom)

Author keywords

Learning disabilities; Mental Capacity Act; Research ethics

Indexed keywords

EID: 84929325021     PISSN: 13544187     EISSN: 14683156     Source Type: Journal    
DOI: 10.1111/bld.12122     Document Type: Article

References (35)

1. Boxall K. & Ralph S. (2011) Research ethics committees and the benefits of involving people with profound and multiple learning disabilities in research. British Journal of Learning Disabilities, 39: 173-80.
2. 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.
3. Cleaver S., Ouellette-Kuntz H. & Sakar A. (2010) Participation in intellectual disability research: a review of 20 years of studies. Journal of Intellectual Disability Research, 54: 187-93.
4. Crang M. & Cook I. (2007) Doing ethnographies. London, Sage.
5. Cook T. & Inglis P. (2012) Participatory research with men with learning disability: informed consent. Tizard Learning Disability Review, 17: 92-101.
6. Department for Constitutional Affairs. (2007) Mental Capacity Act 2005 Code of Practice.
7. Dewing J. (2007) Participatory research: a method for process consent with persons who have dementia. Dementia, 6: 11-25.
8. Dye L., Hare D.J. & Hendy S. (2003) Factors impacting on the capacity to consent in people with learning disabilities: a review of research and practice. Tizard Learning Disability Review, 8: 11-20.
9. Edge J. (2001) Who's in Control? Decision-making by people with learning difficulties who have high support needs. London, VIA.
10. Fisher C.B., Cea C.D., Davidson P.W. & Fried A.L. (2006) Capacity of persons with mental retardation to consent to participate in randomized clinical trials. American Journal of Psychiatry, 163: 1813-20.
11. House of Lords Select Committee on the Mental Capacity Act 2005 Report of Session 2013-14 Mental Capacity Act 2005: post-legislative scrutiny. London, The Stationery Office.
12. Iacano T. (2006) Ethical challenges and complexities of including people with intellectual disability as participants in research. Journal of Intellectual and Developmental Disability, 31: 173-9.
13. Jepson M. (2011) Who decides? Decision making with people with learning disabilities under the Mental Capacity Act 2005. PhD Thesis, University of Bristol.
14. Keywood K., Fovargue S. & Flynn M. (1999) Best Practice? Health care decision making by, with and for adults with learning disabilities. Manchester, National Development Team.
15. Lennox N., Taylor M., Rey-Conde T., Bain C., Purdie D.M. et al. (2005) Beating the barriers: recruitment of people with intellectual disability to participate in research. Journal of Intellectual Disability Research, 49: 296-305.
16. Lepping P. (2011) Overestimating patients' capacity. The British Journal of Psychiatry, 199: 355-6.
17. Loyd D. (2013) Obtaining consent from young people with autism to participate in research. British Journal of Learning Disabilities, 41: 133-40.
18. Masson J. (2004) The legal context. In: Fraser S., Lewis V., Ding S., Kellett M., Robinson C., editors. Doing research with children and young people. London, Sage: 42-58.
19. McDonald K.E. & Kidney C.A. (2012) What Is right? Ethics in intellectual disabilities research. Journal of Policy and Practice in Intellectual Disabilities, 9: 27-39.
20. Mental Capacity Act. (2005) Mental Capacity Act. London: The Stationery Office.
21. Myron R., Gillespie S., Swift P. & Williamson T. (2008) Whose decision? Preparation for and implementation of the Mental Capacity Act in statutory and non-statutory services in England and Wales. London, Mental Health Foundation.
22. Nicholson L., Colyer M. & Cooper S.A. (2012) Recruitment to intellectual disability research: a qualitative study. Journal of Intellectual Disability Research, 57: 647-56.
23. Nind M. (2008) Conducting qualitative research with people with learning, communication and other disabilities: methodological Challenges. ESRC National Centre for Research Methods, Methods Review Paper. Available at: http://eprints.ncrm.ac.uk/491/ (last accessed on 18 December 2014).
24. Ramasubramanian L., Ranasinghe N. & Ellison J. (2011) Evaluation of a structured assessment framework to enable adherence to the requirements of Mental Capacity Act 2005. British Journal of Learning Disabilities, 39: 314-20.
25. Rapley M. & Antaki C. (1996) A conversation analysis of the 'acquiescence' of people with learning disabilities. Journal of Community & Applied Social Psychology, 6: 207-27.
26. Rodgers J., Townsley R., Tarleton B., Folkes L. & Mears C. (2004) Information for All: Guidance. Available at: http://www.easyinfo.org.uk (last accessed on 16 October 2006).
27. Sherratt C., Soteriou T. & Evans S. (2007) Ethical issues in social research involving people with dementia. Dementia, 6: 463-79.
28. Skinner R., Joiner C., Chesters L., Bates L. & Scrivener L. (2011) Demystifying the process? A multi disciplinary approach to assessing capacity for adults with a learning disability. British Journal of Learning Disabilities, 39: 92-7.
29. Taua C., Neville C. & Hepworth J. (2014) Research participation by people with intellectual disability and mental health issues: an examination of the processes of consent. International Journal of Mental Health Nursing, 23: 513-24.
30. Usher K.J. & Arthur D. (1998) Process consent: a model for enhancing informed consent in mental health nursing. Journal of Advanced Nursing, 27: 692-7.
31. Waight M.P. & Oldreive W.J. (2012) Evaluating the ability of and enabling a blind adult with learning disability to sign a tenancy agreement. British Journal of Learning Disabilities, 40: 55-61.
32. Ward L. & Townsley R. (2005) 'It's about a dialogue...' Working with people with learning difficulties to develop accessible information. British Journal of Learning Disabilities, 33: 59-64.
33. Williams V., Boyle G., Jepson M., Swift P., Williamson T. & Heslop P. (2014) Best interests decisions: professional practices in health and social care. Health and Social Care in the Community, 22: 78-86.
34. Willner P., Jenkins R., Rees P., Griffiths V.J. & John E. (2010) Knowledge of mental capacity issues in community teams for adults with learning disabilities. Journal of Applied Research in Intellectual Disabilities, 24: 159-71.
35. Wong J.G., Clare I.C.H., Holland A.J., Watson P.C. & Gunn M. (2000) The capacity of people with a 'mental disability' to make a health care decision. Psychological Medicine, 30: 295-306.