Reflections on a participatory project: The rewards and challenges for the lead researchers

References

• Alm, N. (2010). Invited commentary on Bigby and Frawley's reflections on the challenges of doing inclusive research as part of the “Making Life Good in the Community” study. Journal of Intellectual & Developmental Disability, 35 62–63. doi: 10.3109/13668251003726846
   PubMed Web of Science ®Google Scholar
• Bigby, C., & Frawley, P. (2010). Reflections on doing inclusive research in the “Making Life Good in the Community” study. Journal of Intellectual & Developmental Disability, 35 53–61. doi: 10.3109/13668251003716425
   PubMed Web of Science ®Google Scholar
• Björnsdóttir, K., & Soffía Svensdóttir, A. (2008). Gambling for capital: Learning disability, inclusive research and collaborative life histories. British Journal of Learning Disabilities, 36 263–270. doi: 10.1111/j.1468-3156.2008.00499.x
   Google Scholar
• Bonham, G.S., Basehart, S., Schalock, R.L., Marchand, C.B., Kirchner, N., & Rumenap, J.M., (2004). Consumer-based quality of life assessment: The Maryland Ask Me! Project. Mental Retardation, 42 338–355. doi: 10.1352/0047-6765(2004)42<338:CQOLAT>2.0.CO;2
   PubMedGoogle Scholar
• Brookfield, S.D. (1995). Becoming a critically reflective teacher, San Francisco, CA: Jossey-Bass.
   Google Scholar
• Brooks, M., & Davies, S. (2007). Pathways to participatory research in developing a tool to measure feelings. British Journal of Learning Disabilities, 36 128–133. doi: 10.1111/j.1468-3156.2007.00476.x
   Google Scholar
• Donald Beasley Institute & IHC Self Advocacy Advisory Committee (2009). The Great Life Project: A report prepared for IHC/IDEA services by the Donald Beasley Institute in collaboration with the IHC Self Advocacy Advisory Committee, Dunedin, NZ: Donald Beasley Institute.
   Google Scholar
• Garcia-Iriarte, E., Kramer, J.C., Kramer, J.M., & Hammel, J. (2009). ‘Who did what?’: A participatory action research project to increase group capacity for advocacy. Journal of Applied Research in Intellectual Disabilities, 22 10–22. doi: 10.1111/j.1468-3148.2008.00431.x
   Web of Science ®Google Scholar
• Gilbert, T. (2004). Involving people with learning disabilities in research: Issues and possibilities. Health and Social Care in the Community, 12 298–308. doi: 10.1111/j.1365-2524.2004.00499.x
   PubMed Web of Science ®Google Scholar
• Goodall, H.L.,Jr (2008). Writing qualitative inquiry: Self, stories, and academic life, Walnut Creek, CA: Left Coast Press.
   Google Scholar
• Grant, G., & Ramcharan, P. (2007). Valuing people and research: The learning disability research initiative. Overview report, London, UK: Department of Health.
   Google Scholar
• Grant, G., & Ramcharan, P. (2009). Valuing people and research: Outcomes of the learning disability research initiative. Tizard Learning Disability Review, 14 2 25–34.
   Google Scholar
• Hensel, E., Rose, J., Stenfert Kroese, B., & Banks-Smith, J. (2002). Subjective judgements of quality of life: A comparison study between people with intellectual disability and those without disability. Journal of Intellectual Disability Research, 46 95–107. doi: 10.1046/j.1365-2788.2002.00343.x
   PubMed Web of Science ®Google Scholar
• Kemmis, S., & McTaggart, R. (2003). Participatory action research. Strategies of qualitative inquiry, Denzin, N. K., & Lincoln, Y. S. 2nd edThousand Oaks, CA: Sage.336–396.
   Google Scholar
• Kemmis, S., & McTaggart, R. (2005). Participatory action research. The Sage handbook of qualitative research, K. Denzin, N., & S. Lincoln, Y. 3rd edThousand Oaks, CA: Sage.559–603.
   Google Scholar
• Labonte, R. (1989). Community and professional empowerment. Canadian Nurse, 85 3 23–30.
   PubMedGoogle Scholar
• Mactavish, J., Lutfiyya, Z., Iwasaki, Y., MacKay, K., Mahon, K., & Rodrique, M. 2005, October Thanks for asking me … Individuals with intellectual disability on life quality and leisure connection. Paper presented at the The Leisure Research Symposium, San Antonio, Texas.
   Google Scholar
• Marquis, R., & Jackson, R. (2000). Quality of life and quality of service relationships: Experiences of people with disabilities. Disability & Society, 15 411–425. doi: 10.1080/713661967
   Web of Science ®Google Scholar
• McClimens, A. (2008). This is my truth, tell me yours: Exploring the internal tensions within collaborative learning disability research. British Journal of Learning Disabilities, 36 271–276. doi: 10.1111/j.1468-3156.2007.00485.x
   Google Scholar
• McClimens, A. (2010). These self-evident truths: Power and control in intellectual disability research. Journal of Intellectual & Developmental Disability, 35 64–65. doi: 10.3109/13668251003726861
   PubMed Web of Science ®Google Scholar
• McLaughlin, H. (2010). Keeping service user involvement in research honest. British Journal of Social Work, 40 1591–1608. doi: 10.1093/bjsw/bcp064
   Web of Science ®Google Scholar
• Noffke, S., & Somekh, B. (2005). Action research. Research methods in the social sciences, Somekh, B., & Lewin, C. London, UK: Sage.89–96.
   Google Scholar
• Patton, M. (2002). Qualitative research & evaluation methods, 3rd ed.Thousand Oaks, CA: Sage.
   Google Scholar
• Perry, J., & Felce, D. (2004). Initial findings on the involvement of people with an intellectual disability in interviewing their peers about quality of life. Journal of Intellectual & Developmental Disability, 29 164–171. doi: 10.1080/13668250410001709502
   Web of Science ®Google Scholar
• Piggot-Irvine, E.., & Bartlett, B. (2008). Evaluating action research, Wellington, New Zealand: NZCER Press
   Google Scholar
• Ramcharan, P., Grant, G., & Flynn, M. (2004). Emancipatory and participatory research: How far have we come?. The international handbook of applied research in intellectual disabilities, Emerson, E., Hatton, C., Thompson, T., & R. Parmenter, T. Chichester, England: Wiley.83–111. doi: 10.1002/9780470713198.ch4
   Google Scholar
• Reason, P. (1994). Three approaches to participative inquiry. Handbook of qualitative research, Denzin, N. K., & Lincoln, Y. S. Thousand Oaks, CA: Sage.324–339.
   Google Scholar
• Schalock, R.L., & Felce, D. (2004). Quality of life and subjective well-being: Conceptual and measurement issues. The international handbook of applied research in intellectual disabilities, Emerson, E., Hatton, C., Thompson, T., & Parmenter, T. R. Chichester, England: Wiley.261–279.
   Google Scholar
• Walmsley, J. (2004). Inclusive learning disability research: The (nondisabled) researcher's role. British Journal of Learning Disabilities, 32 65–71. doi: 10.1111/j.1468-3156.2004.00281.x
   Google Scholar
• White, G.W., Suchowierska, M., & Campbell, M. (2004). Developing and systematically implementing participatory action research. Archives of Physical Medicine and Rehabilitation, 85 S3–S12. doi: 10.1016/j.apmr.2003.08.109
   PubMed Web of Science ®Google Scholar
• Young, A.F., & Chesson, R. A. (2007). Determining research questions on health risks by people with learning disabilities, carers and care-workers. British Journal of Learning Disabilities, 36 22–31. doi: 10.1111/j.1468-3156.2007.00444.x
   Google Scholar
• Zarb, G. (1992). On the road to Damascus: First steps towards changing the relations of disability research production. Disability, Handicap & Society, 7 125–138. doi: 10.1080/02674649266780161
   Google Scholar