Participatory action research and evaluation with mental health self-help initiatives: A theoretical framework

Mental Health Self-Help: Consumer and Family Initiatives

Volumn , Issue , 2010, Pages 39-58

  Nelson, Geoffrey ^a   Janzen, Rich ^b   Ochocka, Joanna ^b   Trainor, John ^c  

^a WILFRID LAURIER UNIVERSITY   (Canada)

^b Center for Community Based Research   (Canada)

^c UNIVERSITY OF TORONTO   (Canada)

Author keywords

Evaluation; Participatory action research; Values

Indexed keywords

EID: 84866354896     PISSN: None     EISSN: None     Source Type: Book    
DOI: 10.1007/978-1-4419-6253-9_3     Document Type: Chapter

References (86)

1. Abma, R. A., & Stake, R. E. (2001). Stake's responsive evaluation: Core ideas and evolution. New Directions in Evaluation, 92, 7-22.
2. Bradley, J. E., Mayfield, M. V., Mehta, M. P., & Rukonge, A. (2002). Participatory evaluation of reproductive health care quality in developing countries. Social Science and Medicine, 55, 269-282.
3. Brown, L. D. (2009a). How people can benefit from mental health consumer-run organizations. American Journal of Community Psychology, 43, 177-188.
4. Brown, L. D. (2009b). Making it sane: Using narrative to explore theory in a mental health consumer-run organization. Qualitative Health Research, 19, 243-257.
5. Brown, L. D., Shepherd, M. D., Merkle, E. C., Wituk, S. A., & Meissen, G. (2008). Understanding how participation in consumer-run organizations relates to recovery. American Journal of Community Psychology, 42, 167-178.
6. Burti, L., Amaddeo, F., Ambrose, M., Bonetto, C., Cristofalo, D., Ruggeri, M., & Tansella, M. (2005). Does additional care provided by a consumer self-help group improve psychiatric outcomes? A study based in an Italian community-based psychiatric service. Community Mental Health Journal, 41, 705-720.
7. Campbell, J. (2005). The historical and philosophical development of peer-run support programs. In S. Clay, B. Schell, P.W. Corrigan, & R. O. Ralph (Eds.), On our own, together: Peer program for people with mental illness (pp. 17-64). Nashville, TN: Vanderbilt University Press.
8. Cargo, M., & Mercer, S. L. (2008). The value and challenges of participatory research: Strengthening its practice. Annual Review of Public Health, 29, 325-350.
9. Chamberlin, J. (1978). On our own: Patient-controlled alternatives to the mental health system. Toronto, ON: McGraw-Hill.
10. Chamberlin, J. (1984). Speaking for ourselves: An overview of the ex-psychiatric patients' movement. Psychosocial Rehabilitation Journal, 8(2), 56-63.
11. Chamberlin, J. (1990). The ex-psychiatric patients' movement:Where we've been and where we're going. The Journal of Mind and Behavior, 11, 323-336.
12. Chen, H.-T. (2005). Practical program evaluation: Assessing and improving planning, implementation, and effectiveness. Newbury Park, CA: Sage.
13. Collins, A. (1998). In the sleep room: The story of the CIA brainwashing experiments in Canada. Toronto, ON: Key Porter Books.
14. Constantino, V., & Nelson, G. (1995). Changing relationships between self-help groups and mental health professionals: Shifting ideology and power. Canadian Journal of Community Mental Health, 14(2), 55-70.
15. Cook, T. D., & Shadish, W. R. Jr. (1986). Program evaluation: The worldly science. Annual Review of Program Evaluation, 37, 193-232.
16. Corrigan, P. W. (2006). Impact of consumer-operated services on empowerment and recovery of people with psychiatric disabilities. Psychiatric Services, 57, 1493-1496.
17. Corrigan, P. W., Slopen, N., Gracia, G., Phelan, Keogh, C. B., & Keck, L. (2005). Some recovery processes in mutual-help groups for persons with mental illness; II: Qualitative analysis of participant interviews. Community Mental Health Journal, 41, 721-735.
18. Deutsch A. (1948). The shame of the states. New York: Harcourt Brace.
19. Dewa, C. S., Durbin, J., Wasylenki, D., Ochocka, J., Eastabrook, S., Boydell, K. M., & Goering, P. (2002). Considering a multisite study? How to take the leap and have a soft landing. Journal of Community Psychology, 30, 173-187.
20. Donaldson, S. I., & Scriven, M. (2003). Diverse visions for evaluation in the new millennium: Should we integrate or embrace diversity? In S. I. Donaldson & M. Scriven (Eds.), Evaluating social programs: Visions for the new millennium (pp. 3-16). Mahwah, NJ: Lawrence Erlbaum Associates.
21. Durlak, J. A., & DuPre, E. P. (2008). Implementation matters: A review of research on the influence of implementation on program outcomes and the factors affecting implementation. American Journal of Community Psychology, 41, 327-350.
22. Everett, B. (1994). Something is happening: The contemporary consumer and psychiatric survivor movement in historical context. The Journal of Mind and Behavior, 15, 55-70.
23. Everett, B. (1998). Participation or exploitation? Consumers and psychiatric survivors as partners in planning mental health services. International Journal of Mental Health, 27, 80-97.
24. Fals-Borda, O., & Rahman, M. A. (1991). Action and knowledge: Breaking the monopoly with participatory action-research. New York: The Apex Press.
25. Fetterman, D. M. (2001). Foundations of empowerment evaluation. Thousand Oaks, CA: Sage.
26. Fine, M., Torre, M. E., Boudin, K., Bowen, I., Clark, J., Hylton, D., Martinez, M., Missy, Roberts, R. A., Smart, P., & Upegui, D. (2003). Participatory action research: From within and beyond prison bars. In P. M. Camic, J. E. Rhodes, & L. Yardley, Qualitative research in psychology (pp. 173-198). Washington, DC: American Psychological Association.
27. Fisher, P. A., & Ball, T. J. (2003). Tribal participatory research: Mechanisms of a collaborative model. American Journal of Community Psychology, 32, 207-216.
28. Foley, D., & Valenzuela, A. (2005). Critical ethnography: The politics of collaboration. In N. Denzin & Y. S. Lincoln (Eds.), The Sage handbook of qualitative research (3rd ed., pp. 217-234). Thousand Oaks, CA: Sage.
29. Frechtling, J. A. (2007). Logic modeling methods in program evaluation. San Francisco: Jossey- Bass.
30. Grant, J., Nelson, G., & Mitchell, T. (2008). Negotiating the challenges of participatory action research: Relationships, power, participation, change, and credibility. In P. Reason & H. Bradbury (Eds.), Handbook of action research (2nd ed., pp. 589-607). Thousand Oaks, CA: Sage.
31. Greene, J. (2008). Is mixed methods social inquiry a distinctive methodology? Journal of Mixed Methods Research, 2, 7-22.
32. Guba, E. G., & Lincoln, Y. S. (2005). Paradigmatic controversies, contradictions, and emerging confluences. In N. Denzin & Y. S. Lincoln (Eds.), The Sage handbook of qualitative research (3rd ed., pp. 191-216). Thousand Oaks, CA: Sage.
33. House, E.R. (2004). The role of the evaluator in a political world. Canadian Journal of Program Evaluation, 19, 1-16.
34. Hinshaw, S.P., & Cicchetti, D. (2000). Stigma and mental disorder: Conceptions of illness, public attitudes, personal disclosure, and social policy. Development and Psychopathology, 12, 555-598.
35. Humphrey, C. (2007). Insider-outsider: Activating the hyphen. Action Research, 5(1), 11-26.
36. Isenberg, D., Loomis, C., Humphreys, K., & Maton, K. (2004). Self-help research: Issues of power sharing. In L. Jason, C. Keys, Y. Suarez-Balcazar, R. Taylor, M. Davis, J. Durlak, & D. Isenberg (Eds.), Participatory community research: Theories and methods in action (pp. 123-137). Washington, DC: American Psychological Association.
37. 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.
38. Jacobson, N., Ochocka, J., Wise J., Janzen, R., & the Taking Culture Seriously Partners (2007). Inspiring knowledge mobilization through a communications policy: The case of a Community University Research Alliance. Progress in Community Health Partnerships: Research, Education and Action, 1(1), 99-104.
39. Janzen, R., Nelson, G., Hausfather, N., & Ochocka, J. (2007). Capturing system level activities and impacts of mental health consumer-run organizations. American Journal of Community Psychology, 39, 287-299.
40. Janzen, R., Nelson, G., Trainor, J., & Ochocka, J. (2006). A longitudinal study of mental health consumer/survivor initiatives: Part IV - Benefits beyond the self? A quantitative and qualitative study of system-level activities and impacts. Journal of Community Psychology, 34, 285-303.
41. Johnsen, M., Teague, G., & Herr, E. M. (2005). Common ingredients as a fidelity measure for peer-run programs. In S. Clay, B. Schell, P. W. Corrigan, & R. O. Ralph (Eds.), On our own, together: Peer program for people with mental illness (pp. 213-238). Nashville, TN: Vanderbilt University Press.
42. Kemmis, S. & McTaggart, R. (2005). Participatory action research. In N.K. Denzin & Y.S. Lincoln (Eds.), Handbook of qualitative research (3rd ed., pp. 559-603).Thousand Oaks, CA: Sage.
43. Kennedy, M., Humphreys, K., & Borkman, T. (1994), The naturalistic paradigm as an approach to research with mutual-help groups. In T. J. Powell (Ed.), Understanding self-help organizations (pp. 172-189). Thousand Oaks, CA: Sage.
44. Kincheloe, J. L., & McLaren, P. (2005). Rethinking critical theory and qualitative research. In N. Denzin & Y. S. Lincoln (Eds.), The Sage handbook of qualitative research (3rd ed., pp. 303-342). Thousand Oaks, CA: Sage.
45. Loveland, D., Weaver Randall, K., & Corrigan, P.W. (2005). Research methods for exploring and assessing recovery. In R. O. Ralph & P. W. Corrigan (Eds.), Recovery in mental illness: Broadening our understanding of wellness (pp. 19-59). Washington, DC: American Psychological Association.
46. Mertens, D.M. (2003). Mixed methods and the politics of human research: The transformativeemancipatory perspective. In A. Tashakkori & C. Teddlie (Eds.), Handbook of mixed methods in social & behavioral research (pp. 209-240). Thousand Oaks, CA: Sage.
47. Mertens, D.M. (2009). Transformative research and evaluation. New York: The Guilford Press.
48. McCubbin, M., & Cohen, D. (1996). Extremely unbalanced: Interest divergence and power disparities between clients and psychiatry. International Journal of Law and Psychiatry, 19, 1-25.
49. McLaughlin, J.A., & Jordan, G.B. (2004). Using logic models. In J. S. Wholey, H. P. Hatry, & K. E. Newcomer (Eds.), Handbook of practical program evaluation (pp. 7-32). Thousand Oaks, CA: Sage.
50. Mitten, C., Adair, C. E., McKenzie, E., Patten, S. B., & Perry, B. W. (2007). Knowledge transfer and exchange: Review and synthesis of the literature. Milbank Quarterly, 85, 729-768.
51. Mowbray, C. T., Bybee, D., Holter, M. C., & Lewandoswki, L. (2006). Validation of a fidelity rating instrument for consumer-operated services. American Journal of Evaluation, 27, 9-27.
52. Nelson, G. (1994). The development of a mental health coalition: A case study. American Journal of Community Psychology, 22, 229-255.
53. Nelson, G., Janzen, R., Trainor, J., & Ochocka, J. (2008). Putting values into practice: Public policy and the future of mental health consumer-run organizations. American Journal of Community Psychology, 42, 192-201.
54. Nelson, G., & Lomotey, J. (2006). Quantity and quality of participation and outcomes of participation in mental health consumer/survivor initiatives. Journal of Mental Health, 15, 1-12.
55. Nelson, G., Lord, J., & Ochocka, J. (2001) Shifting the paradigm in community mental health: Towards empowerment and community. Toronto, ON: University of Toronto Press.
56. Nelson, G., Ochocka, J., Janzen, R., Trainor, J., Goering, P., & Lomotey, J. (2007). A longitudinal study of mental health consumer/survivor initiatives: Part V - Outcomes at three-year followup. Journal of Community Psychology, 35, 655-665.
57. Nelson, G., Ochocka, J., Lauzon, S., Towndrow, J., & Cheng, R. (2005). Disseminating the findings of a longitudinal study of mental health Consumer/Survivor Initiatives in Ontario. The Community Psychologist, 38(2), 41-43.
58. Nelson, G., Lord, J., & Ochocka, J. (2001) Shifting the paradigm in community mental health: Towards empowerment and community. Toronto, ON: University of Toronto Press.
59. Nelson, G., Ochocka, J., Griffin, K., & Lord, J. (1998). Nothing about me, without me: Participatory action research with self-help/mutual aid organizations for psychiatric consumer/survivors. American Journal of Community Psychology, 26, 881-912.
60. Nelson, G., Ochocka, J., Janzen, R., & Trainor, J. (2006). A longitudinal study of mental health consumer/survivor initiatives: Part I - Literature review and overview of the study. Journal of Community Psychology, 34, 247-260.
61. Nelson, G., Ochocka, J., Janzen, R., Trainor, J., & Lauzon, S. (2004). A comprehensive evaluation approach for mental health consumer-run organizations: Values, conceptualization, design, and action. Canadian Journal of Program Evaluation, 19(3), 29-53.
62. Ochocka, J., Janzen, R., & Nelson, G. (2002). Sharing power and knowledge: Professional and mental health consumer/survivor researchers working together in a participatory action research project. Psychiatric Rehabilitation Journal, 25, 379-387.
63. Ochocka, J., Nelson, G., Janzen, R., & Trainor, J. (2006). A longitudinal study of mental health consumer/survivor initiatives: Part III - A qualitative study of impacts of participation on new members. Journal of Community Psychology, 34, 273-283.
64. Patton, M. Q. (2008). Utilization-focused evaluation (4th ed.). Thousand Oaks, CA: Sage.
65. Pistrang, N., Barker, C., & Humphries, K. (2008). Mutual help groups for mental health problems: A review of effectiveness studies. American Journal of Community Psychology, 42, 110-121.
66. Prilleltensky, I. (2008). The role of power in wellness, oppression, and liberation: The promise of psychopolitical validity. Journal of Community Psychology, 36, 116-136.
67. Prilleltensky, I., & Nelson, G. (2009). Community psychology: Advancing social justice. In D. Fox, I. Prilleltensky, &S. Austin (Eds.), Critical psychology: An introduction (2nd ed., pp. 126-143). Thousand Oaks, CA: Sage.
68. Postma, J. (2008). Balancing power among academic and community partners: The case of El Proyecto Bienestar. Journal of Empirical Research on Human Research Ethics, 3(2), 17-32.
69. Rappaport, J. (1981). In praise of paradox: A social policy of empowerment over prevention. American Journal of Community Psychology, 9, 1-25.
70. Rappaport, J., Seidman, E., Toro, P. A., McFadden, L. S., Reischl, T. M., Roberts, L. J., Salem, D. A., Stein, C. H., & Zimmerman, M. A. (1985). Finishing the unfinished business: Collaborative research with a mutual help organization. Social Policy, 16, 12-24.
71. Reeve, P., Cornell, S., D'Costa, B., Janzen, R., & Ochocka, J. (2002). From our perspective: Consumer researchers speak about their experience in a community mental health research project. Psychiatric Rehabilitation Journal, 25, 403-408.
72. Roberts, L. J., Salem, D. A., Rappaport, J., Toro, P. A., Luke, D. A., & Seidman, E. (1999). Giving and receiving help: Interpersonal transactions in mutual-help meetings and psychosocial adjustment of members. American Journal of Community Psychology, 27, 841-868.
73. Rowe, M., Bellamy, C., Baranoski, M., Wieland, M., O'Connell, M. J., Benedict, P., Davidson, L., Buchanan, J., & Sells, D. (2007). A peer-support group intervention to reduce substance use and criminality among persons with severe mental illness. Psychiatric Services, 58, 955-961.
74. Rush, B., & Ogborne, A. (1991). Program logic models: Expanding their role and structure for program planning and evaluation. Canadian Journal of Program Evaluation, 6, 95-106.
75. Ryan, K., Green, J., Lincoln, Y., Mathison, S., & Mertens, D. (1998). Advantages and challenges of using inclusive evaluation approaches in evaluation practice. American Journal of Program Evaluation, 19, 101-122.
76. Shadish, W. R., Cook, T. D., & Leviton, L. C. (1991). Foundations of program evaluation: Theories of practice. Newbury Park, CA: Sage.
77. Shoultz, J., Oneha, M. F., Magnussen, L., Hla, M. M., Bress-Suanders, Z., Dela Cruz, M. D., & Douglas, M. (2006). Finding solutions to challenges faced in community-based participatory research between academic and community organizations. Journal of Interprofessional Care, 20, 133-144.
78. Solomon, P. (2004). Peer support/peer provided services: Underlying processes, benefits, and critical ingredients. Psychiatric Rehabilitation Journal, 27, 392-401.
79. Scriven, M. (1980). The logic of evaluation. Inverness, CA: Edgpress.
80. Szasz, T. (Ed.). (1974). The age of madness. New York: Jason Aronson.
81. Tashakkori, A., & Teddlie, C. (Eds.). (2003). Handbook of mixed methods in social and behavioral research. Thousand Oaks, CA: Sage.
82. Tefft, B. (1987). Advocacy coalitions as a vehicle for mental health system reform. In E.M. Bennett (Ed.), Social intervention: Theory and practice (pp. 155-185). Lewiston, New York: The Edwin Mellen Press.
83. Weaver Randall, K., & Salem, D. A. (2005). Mutual-help groups and recovery: The influence of settings on participants' experience of recovery. In R. O. Ralph & P. W. Corrigan (Eds.), Recovery in mental illness: Broadening our understanding of wellness (pp. 173-205). Washington, DC: American Psychological Association.
84. Weiss, C. (1983). The stakeholder approach to evaluation: Origins and promise. In A. S. Bryk (Ed.), Stakeholder-based evaluation (Vol. 17, pp. 3-14). San Francisco, CA: Jossey-Bass.
85. Weitz, D. (1984). "On Our Own": A self-help model. In D. P. Lumsden (Ed.), Community mental health action: Primary prevention programming in Canada (pp. 312-320). Ottawa, ON: Canadian Public Health Association.
86. Whitaker, R. (2001). Mad in America: Bad science, bad medicine, and the enduring mistreatment of the mentally ill. Cambridge, MA: Perseus.