'You need to let your voice be heard': Research participants' views on research

Journal of Intellectual Disability Research

Volumn 57, Issue 3, 2013, Pages 216-225

  Mcdonald, K E ^a   Kidney, C A ^b   Patka, M ^b  

^a SYRACUSE UNIVERSITY   (United States)

^b PORTLAND STATE UNIVERSITY   (United States)

Author keywords

Intellectual disabilities; Research ethics; Research participation

Indexed keywords

ACCESS TO INFORMATION; ADULT; AGED; ARTICLE; CLINICAL ARTICLE; DECISION MAKING; DEVELOPMENTAL DISORDER; FEMALE; HUMAN; INTELLECTUAL IMPAIRMENT; INTERVIEW; MALE; MOTIVATION; QUALITY OF LIFE; RESEARCH; RESEARCH ETHICS; TRUST;

ADULT; AGED; ATTITUDE; DEVELOPMENTAL DISABILITIES; FEMALE; HUMANS; INTELLECTUAL DISABILITY; INTERVIEWS AS TOPIC; MALE; MIDDLE AGED; PATIENT PARTICIPATION; QUALITATIVE RESEARCH; QUALITY OF LIFE; RESEARCHER-SUBJECT RELATIONS; TRUST; YOUNG ADULT;

EID: 84873245581     PISSN: 09642633     EISSN: 13652788     Source Type: Journal    
DOI: 10.1111/j.1365-2788.2011.01527.x     Document Type: Article

References (32)

1. Aldridge J. (2007) Picture this: the use of participatory photographic research methods with people with learning disabilities. Disability & Society 22, 1-17. doi: 10.1080/09687590601056006.
2. Alessandra T. (no date) The Platinum Rule. Available at: http://www.squarewheels.com/articles2/platinum.html (retrieved 15 August 2011).
3. Aman M. & Handen B. (2006) Reactions to 'ethical challenges and complexities of including people with intellectual disability as participants in research' by Dr. Teresa lacono. Journal of Intellectual & Developmental Disability 31, 180-2. doi: 10.1080/13668250600876400.
4. Andre-Barron D., Strydom A. & Hassiotis A. (2008) What to tell and how to tell: a qualitative study of information sharing in research with adults with intellectual disability. Journal of Medical Ethics 34, 501-6. doi: 10.1136/jme.2006.019521.
5. Atlas.ti Scientific Software Development (2009) Atlas.ti (v.6.0). Atlas.ti Scientific Software Development, Berlin.
6. Becker H., Roberts G., Morrison J. & Silver J. (2004) Recruiting people with disabilities as research participants: challenges and strategies to address them. Mental Retardation 42, 471-5. doi: 10.1352/0047-6765(2004)42<471:RPWDAR>2.0.CO;2.
7. 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. doi: 10.1111/j.1468-3156.2006.00404.x.
8. Clarkson R., Murphy G., Coldwell J. & Dawson D. (2009) What characteristics do service users with intellectual disability value in direct support staff within residential forensic services? Journal of Intellectual & Developmental Disability 34, 283-98. doi: 10.3109/13668250903285630.
9. Coleman C., Menikoff J., Goldner J. & Dubler N. (2005) The Ethics and Regulations of Research with Human Subjects. LexisNexis, Newark, NJ.
10. Dalton A. & McVilly K. (2004) Ethics guidelines for international multicenter research involving people with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities 1, 57-70. doi: 10.1111/j.1741-1130.2004.04010.x.
11. Diesfeld K. (1999) International and ethical safeguards: genetics and people with learning disabilities. Disability & Society 14, 21-36. doi: 10.1080/09687599926352.
12. Dybwad G. & Bersani H. (1996) New Voices: Self-Advocacy by People with Disabilities. Brookline Books, Cambridge, MA.
13. Ellem K., Wilson J., Hong Chui W. & Knox M. (2008) Ethical challenges of life story research with ex-prisoners with intellectual disability. Disability & Society 23, 497-509. doi: 10.1080/09687590802177064.
14. Fisher C. B. (2003) Goodness-of-fit ethic for informed consent to research involving adults with mental retardation and developmental disabilities. Mental Retardation and Developmental Disabilities Research Reviews 9, 27-31. doi: 10.1002/mrdd.10052.
15. 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. doi: 10.1176/appi.ajp.163.10.1813.
16. Ham M., Jones N., Mansell I., Northway R., Price L. & Walker G. (2004) 'I'm a researcher!' Working together to gain ethical approval for a participatory research study. Journal of Learning Disabilities 8, 397-407. doi: 10.1177/1469004704047507.
17. Heller T., Pederson E. & Miller A. (1996) Guidelines from the consumer: improving consumer involvement in research and training for persons with mental retardation. Mental Retardation 34, 141-8.
18. Iacono T. (2006) Ethical challenges and complexities of including people with intellectual disability as participants in research. Journal of Intellectual & Developmental Disability 31, 173-9. doi: 10.1080/13668250600876392.
19. Lai R., Elliott D. & Ouellette-Kuntz H. (2006) Attitudes of research ethics committee members towards individuals with intellectual disabilities: the need for more research. Journal of Policy and Practice in Intellectual Disabilities 3, 114-18. doi: 10.1111/j.1741-1130.2006.00062.x.
20. Lincoln Y. & Guba E. (1985) Naturalistic Inquiry. Sage Publications, Inc, Newbury Park, CA.
21. McCarthy M. (1998) Interviewing people with learning disabilities about sensitive topics: a discussion of ethical issues. British Journal of Learning Disabilities 26, 140-5. doi: 10.1111/j.1468-3156.1998.tb00070.x.
22. McDonald K. & Kidney C. (2012) What's right? Ethics on intellectual disability research. Journal of Policy and Practice in Intellectual Disabilities 9 (in press).
23. McDonald K., Keys C. & Henry D. (2008) The gatekeepers of science: attitudes toward the research participation of adults with intellectual disability. American Journal of Mental Retardation 113, 466-78.
24. McDonald K., Kidney C., Nelms S., Parker M., Kimmel A. & Keys C. (2009) Including adults with intellectual disabilities in research: scientists' perceptions of risk and protections. Journal of Policy and Practice in Intellectual Disabilities 6, 244-52. doi: 10.1111/j.174-1130.2009.00225.x.
25. Miles M. B. & Huberman A. M. (1994) Qualitative Data Analysis. Sage, Thousand Oaks, CA.
26. Nicolaidis C., Raymaker D., McDonald K., Dern S., Ashkenazy E., Boisclair C. etal. (2011) Collaboration strategies in nontraditional community-based participatory research partnerships: lessons from an academic-community partnership with autistic self-advocates. Progress in Community Health Partnerships 5, 143-50. doi: 10.1353/cpr.2011.0022.
27. O'Neill P. T. (1989) Responsible to whom? Responsible to what? Some ethical issues in community intervention. American Journal of Community Psychology 17, 323-41. doi: 10.1007/BF00931040.
28. Roberts L., Warner T., Anderson C., Smithpeter M. & Rogers M. (2004) Schizophrenia research participants' responses to protocol safeguards: recruitment, consent, and debriefing. Schizophrenia Research 67, 283-91. doi: 10.1016/S0920-9964(03)00101-4.
29. Rodgers J. (1999) Trying to get it right: undertaking research involving people with learning difficulties. Disability & Society 14, 421-33. doi: 10.1080/09687599926046.
30. Sheppard B. & Sherman D. (1998) The grammars of research: a model and general implications. The Academy of Management Review 23, 422-37.
31. Turnbull A. & Lakin C. (2005) National Research Goals for People with Intellectual and Developmental Disabilities. American Association on Intellectual and Developmental Disabilities, Washington, DC.
32. Woodring J., Foley S., Santoro Rado G., Brown K. & Hamner D. (2006) Focus groups and methodological reflections: conscientious flexibility in the field. Journal of Disability Policy Studies 16, 248-58. doi: 10.1177/10442073060160040601.