Nothing about us without us: Does action research in developmental disabilities research measure up?

Journal of Policy and Practice in Intellectual Disabilities

Volumn 11, Issue 2, 2014, Pages 83-91

  Stack, Erin ^a   McDonald, Katherine E ^b  

^a PORTLAND STATE UNIVERSITY   (United States)

^b SYRACUSE UNIVERSITY   (United States)

Author keywords

Action research; Developmental disability; Inclusive research; Intellectual disability; Participatory research

Indexed keywords

EID: 84902482490     PISSN: 17411122     EISSN: 17411130     Source Type: Journal    
DOI: 10.1111/jppi.12074     Document Type: Article

References (54)

1. Allen, M., Culhane-Pera, K., Pergament, S., & Call, K. (2010). Facilitating research faculty participation in CBPR: Development of a model based on key informant interviews. Clinical and Translational Science, 3, 233-238.
2. Atkinson, D. (2004). Research and empowerment: Involving people with learning difficulties in oral and life history research. Disability & Society, 19, 691-702.
3. Atkinson, D. (2005). Research as social work: Participatory research in learning disability. British Journal of Social Work, 35, 425-434.
4. Balcazar, F., Taylor, R., & Kielhofner, G. (2004). Participatory Action Research (PAR): General principles and a case study with chronic fatigue syndrome. L. A. Jason, C. B. Keys, Y. E. Suarez-Balcazar, R. R. Taylor, M. I. Davis, J. Durlag & D. Isenberg (Eds.), Participatory Community Research: Theories and Methods in Action (pp. 17-35). Washington, DC: American Psychological Association.
5. Balcazar, F. E., Keys, C., Kaplan, D. L., & Suarez-Balcazar, Y. (2006). Participatory action research and people with disabilities: Principles and challenges. Canadian Journal of Rehabilitation, 12, 105-112.
6. Barton, L. (2005). Emancipatory research and disabled people: Some observations and questions. Educational Review, 57, 317-327.
7. Bazzano, A. T., Zeldin, A. S., Shihady Diab, I. R., Garro, N. M., Allevato, N. A., & Lehrer, D.; the WRC Project Oversight Team. (2009). The healthy lifestyle change program: A pilot of a community-based health promotion intervention for adults with developmental disabilities. American Journal of Preventive Medicine, 37, 201-208.
8. 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.
9. Björnsdóttir, K., & Svensdóttir, A. S. (2008). Stuck in the land of disability? The intersection of learning difficulties, class, gender, and religion. Disability & Society, 25, 49-62.
10. Björnsdóttir, K., & Traustadóttir, R. (2010). Gambling for capital: Learning disability, inclusive research and collaborative life histories. British Journal of Learning Disabilities, 36, 263-270.
11. 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.
12. Bricher, G. (2000). Disabled people, health professionals and the social model of disability: Can there be a research relationship? Disability & Society, 15, 781-793.
13. Brydon-Miller, M. (1997). Participatory action research: Psychology and social change. Journal of Social Issues, 53, 657-666.
14. Chambers, R. (2007). Participation and poverty. Society for International Development, 50, 20-25.
15. Chappell, A. L. (2001). Emergence of participatory methodology in learning difficulty research: Understanding the context. British Journal of Learning Disabilities, 28, 38-43.
16. Clements, J., Rapley, M., & Cummins, R. A. (1999). On, to, for, with-Vulnerable people & the practices of the research community. Behavioural & Cognitive Psychotherapy, 27, 103-115.
17. Cocks, E., & Cockram, J. (1995). The participatory research paradigm and intellectual disability. Journal of Applied Research in Intellectual Disability, 8, 25-37.
18. Conder, J., Milner, P., & Mirfin-Veitch, B. (2011). Reflections on a participatory project: The rewards and challenges for the lead researchers. Journal of Intellectual and Developmental Disability, 36, 39-48.
19. Davidson, A. (2009). Producing self-advocacy videos through a process of collaborative research with adults living with intellectual disabilities. International Journal of Learning, 16, 687-698.
20. Dias, J., Eardley, M., Harkness, E., Townson, L., Brownlee-Chapman, C., & Chapman, R. (2012). Keeping wartime memory alive: An oral history project about the wartime memories of people with learning difficulties in Cumbria. Disability & Society, 27, 31-49.
21. Dowse, L. (2009). "It's like being in a zoo." Researching with people with intellectual disability. Journal of Research in Special Educational Needs, 9, 141-153.
22. Dybwad, G., & Bersani, H. Jr (1996). New voices: Self-advocacy by people with disabilities. Cambridge, MA: Brookline Books, Inc.
23. 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.
24. Gilbert, T. (2004). Involving people with learning disabilities in research: Issues and possibilities. Health and Social Care in the Community, 12, 298-308.
25. Israel, B. A., Schulz, A. J., Parker, E. A., & Becker, A. B. (1998). Review of community-based research: Assessing partnership approaches to improve public health. Annual Review of Public Health, 19, 173-202.
26. Israel, B. A., Schulz, A. J., Parker, E. A., Becker, A. B., Allen, A. J. III, & Guzman, J. R. (2003). Critical issues in developing and following community-based participatory research principles. In M. Minkler & N. Wallerstein (Eds.), Community-based participatory research for health (pp. 53-76). San Francisco, CA: Jossey-Bass.
27. Jurkowski, J. M. (2008). Photovoice as participatory action research tool for engaging people with intellectual disabilities in research and program development. Intellectual and Developmental Disabilities, 46, 1-11.
28. Jurkowski, J. M., & Paul-Ward, A. (2007). Photovoice with vulnerable populations: Addressing disparities in health promotion among people with intellectual disabilities. Health Promotion Practice, 8, 358-365.
29. Jurkowski, J. M., Rivera, Y., & Hammel, J. (2009). Health perceptions of Latinos with intellectual disabilities: The results of a qualitative pilot study. Health Promotion Practice, 10, 144-155.
30. Kiernan, C. (1999). Participation in research by people with learning disability: Origins and issues. British Journal of Learning Disabilities, 27, 43-47.
31. Knox, M., Mok, M., & Parmenter, T. R. (2000). Working with experts: Collaborative research with people with intellectual disability. Disability & Society, 15, 49-61.
32. Kramer, J. M., Kramer, J. C., Garcia-Iriarte, E., & Hammel, J. (2011). Following through to the end: The use of inclusive strategies to analyze and interpret data in participatory action research with individuals with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 24, 263-273.
33. Lewin, K. (1946). Action research and minority problems. Journal of Social Issues, 2, 34-46.
34. McLaughlin, H. (2010). Keeping service user involvement in research honest. British Journal of Social Work, 40, 1591-1608.
35. McTaggart, R. (1991). Principles for participatory action research. Adult Education Quarterly, 41, 168-197.
36. Minkler, M. (2005). Community-based research partnerships: Challenges and opportunities. Journal of Urban Health, 82, ii3-ii12.
37. Nicolaidis, C., Raymaker, R., McDonald, K., Robertson, S., Dern, S., & Ashkenzy, E. (2011). Collaboration strategies in non-traditional CBPR partnerships: Lessons from a geographically-dispersed partnership with autistic self-advocates. Progress in Community Health Partnerships: Research, Education, and Action, 5, 143-150.
38. Oliver, M. (1992). Changing the social relations of research production? Disability, Handicap and Society, 7, 101-114.
39. Paiewonsky, M. (2011). Hitting the reset button on education: Student reports on going to college. Career Development for Exceptional Individuals, 34, 31-44.
40. 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 and Developmental Disability, 29, 164-171.
41. Richardson, M. (2000). How we live: Participatory research with six people with learning difficulties. Journal of Advanced Nursing, 32, 1383-1395.
42. Richardson, M. (2002). Involving people in the analysis. Journal of Learning Disabilities, 6, 47-60.
43. Rodgers, J. (1999). Trying to get it right: Undertaking research involving people with learning difficulties. Disability & Society, 14, 421-433.
44. Sample, P. L. (1996). Beginnings: Participatory action research and adults with developmental disabilities. Disability & Society, 11, 317-332.
45. Shapiro, J. P. (1993). No pity: People with disabilities forging a new civil rights movement. New York, NY: Three Rivers Press.
46. Stalker, K. (1998). Some ethical and methodological issues in research with people with learning difficulties. Disability & Society, 13, 5-19.
47. Tandon, R. (1988). Social transformation and participatory research. Convergence: An International Journal of Adult Education, 21, 5-18.
48. Timmons, J., Hall, A., Bose, J., Wolfe, A., & Winsor, J. (2011). Choosing employment: Factors that impact employment decision for individuals with intellectual disabilities. Intellectual and Developmental Disabilities, 49, 285-299.
49. Walmsley, J. (2001). Normalisation, emancipatory research and inclusive research in learning disability. Disability & Society, 16, 187-205.
50. Whyte, W. F. (Ed.). (1991). Participatory action research. Newbury Park, CA: Sage Publishers.
51. Williams, V., & Simons, K. (2005). More researching together: The role of nondisabled researcher in working with people first members. British Journal of Learning Disabilities, 33, 6-14.
52. Williams, V. (1999). Researching together. British Journal of Learning Disabilities, 27, 28-51.
53. Williams, V. (2005). Did you solve it yourself? Evaluation of self narratives of discrimination by people with "learning difficulties." Communication & Medicine, 2, 77-89.
54. Williams, V., Ponting, L., Ford, K., & Rudge, P. (2010). Skills for support: Personal assistants and people with learning disabilities. British Journal of Learning Disabilities, 38, 59-67.