Consumers and carers as partners in mental health research: Reflections on the experience of two project teams in Victoria, Australia

International Journal of Mental Health Nursing

Volumn 20, Issue 4, 2011, Pages 263-273

  Callander, Rosemary ^a   Ning, Lei ^b   Crowley, Anna ^c   Childs, Bianca ^d   Brisbane, Pam ^e   Salter, Tony ^b  

^a Carer Research and Evaluation Unit   (Australia)

^b Victorian Mental Illness Awareness Council   (Australia)

^c ARAFEMI ^*  (Australia)

^d Thomas Embling Hospital   (Australia)

^e Relationships Australia (Ballarat Centre)   (Australia)

Author keywords

Carer participation; Consumer participation; Mental health; Partnership; Research

Indexed keywords

ARTICLE; AUSTRALIA; CAREGIVER; CONSUMER; COOPERATION; HEALTH SERVICES RESEARCH; HUMAN; MENTAL HEALTH; MENTAL HEALTH SERVICE; METHODOLOGY; NEEDS ASSESSMENT; ORGANIZATION AND MANAGEMENT; PILOT STUDY; PSYCHOLOGICAL ASPECT; RESEARCH;

CAREGIVERS; CONSUMER PARTICIPATION; COOPERATIVE BEHAVIOR; HEALTH SERVICES RESEARCH; HUMANS; MENTAL HEALTH; MENTAL HEALTH SERVICES; NEEDS ASSESSMENT; PILOT PROJECTS; RESEARCH; VICTORIA;

EID: 79960079559     PISSN: 14458330     EISSN: 14470349     Source Type: Journal    
DOI: 10.1111/j.1447-0349.2010.00731.x     Document Type: Article

References (49)

1. Alliston, C., Kluge, C. & Fudge, E. (2009). Commentary on consumer and carer participation in a national mental health promotion initiative. Australian E-Journal for the Advancement of Mental Health, 8 (3), 305-314.
2. Australian Health Ministers (2002). National Practice Standards for the Mental Health Workforce. Canberra: Australian Government.
3. Australian Health Ministers (2003). National Mental Health Plan 2003-2008. Canberra: Australian Government.
4. Australian Health Ministers (2008). National Mental Health Policy 2008. Canberra: Australian Government.
5. Australian Health Ministers (2009). National Mental Health Plan 2009-2014. Canberra: Australian Government.
6. Baker, K. (2007). Families: A help or hindrance in recovery? In: P. Stastny & P. Lehmann (Eds). Alternatives beyond Psychiatry. (pp. 254-260). Budapest: Peter Lehmann Publishing.
7. Buckley, R. & Caple, J. (1995). The Theory and Practice of Training. London: Kogan Page.
8. Byas, A., Hills, D., Meech, C. etal. (2003). From the ground up: Collaborative research in child and adolescent mental health services. Families, Systems and Health, 21 (4), 397-414.
9. Council of Australian Governments (2006). COAG national action plan on mental health (2006-2011). [Cited 9 Mar 2010]. Available from: URL:.
10. Delman, J. & Beinecke, R. (2005). Assessing consumer satisfaction in the Massachusetts behavioral health partnership. Administration and Policy in Mental Health and Mental Health Services Research, 32 (4), 373-386.
11. Department of Human Services (1996). Working with Consumers: Guidelines for Consumer Participation in Mental Health Services. Melbourne: Victorian Department of Human Services.
12. Department of Human Services (2005). Participation Indicators. Melbourne: Victorian Department of Human Services.
13. Department of Human Services (2006). Caring Together: An Action Plan for Carer Involvement in Victorian Public Mental Health Services. Melbourne: Victorian Department of Human Services.
14. Goodwin, V. & Happell, B. (2006). Conflicting agendas between consumers and carers: The perspectives of carers and nurses. International Journal of Mental Health Nursing, 15 (2), 135-143.
15. Gray, B., Robinson, C., Seddon, D. & Roberts, A. (2008). 'Confidentiality smokescreens' and carers for people with mental health problems: The perspectives of professionals. Health and Social Care in the Community, 16 (4), 378-387.
16. Happell, B. & Roper, C. (2006). The myth of representation: The case for consumer leadership. Australian E-Journal for the Advancement of Mental Health, 5 (3), 177-184.
17. Happell, B. & Roper, C. (2007). Consumer participation in mental health research: Articulating a model to guide practice. Australasian Psychiatry, 15 (3), 237-241.
18. Harvey, C., Ning, L., Callander, R. etal. (2009). Privacy and Confidentiality Issues Paper. Prepared for the National Mental Health Consumer & Carer Forum. Canberra: NMHCCF. [Cited 1 Sep 2010]. Available from: URL:.
19. Hayman, F. & Fahey, A. (2007). Involving carers in mental health service development. Australasian Psychiatry, 15 (3), 191-194.
20. Horsfall, J., Cleary, M., Walter, G. & Malins, G. (2007). Challenging conventional practice: Placing consumers at the centre of the research enterprise. Issues in Mental Health Nursing, 28 (11), 1201-1213.
21. Lammers, J. & Happell, B. (2004). Mental health reforms and their impact on consumer and carer participation: A perspective from Victoria, Australia. Issues in Mental Health Nursing, 25 (3), 261-276.
22. Leggatt, M. & Furlong, M. (1996). Reconciling the patient's right to confidentiality and the family's need to know. Australian New Zealand Journal of Psychiatry, 30 (5), 614-622.
23. Lincoln, Y. S. & Guba, E. G. (1985). Naturalistic Inquiry. California: Sage.
24. Lloyd, C. & King, R. (2003). Consumer and carer participation in mental health services. Australasian Psychiatry, 11 (2), 180-184.
25. Lynne, V. (2007). Teaching and Learning Together: Emergent Learning in a Workplace Setting. Melbourne: La Trobe University.
26. McCauliffe, D., Andriske, L., Moller, E., O'Brien, M., Breslin, P. & Hickey, P. (2009). 'Who cares': An exploratory study of carer needs in adult mental health. Australian E-Journal for the Advancement of Mental Health, 8 (1), 57-68.
27. McSherry, B. (2006). Confidentiality in therapeutic relationships: The need to develop comprehensive guidelines for mental health professionals. Psychiatry, Psychology and Law, 13 (1), 124-131.
28. Meehan, T., Bergen, H. & Thornton, R. (2002). Development and evaluation of a training program in peer support for former consumers. International Journal of Mental Health Nursing, 11, 34-39.
29. Minogue, V., Boness, A. B. & Girdlestone, J. (2005). The impact of service user involvement in research. International Journal of Health Care Quality Assurance, 18 (2), 103-112.
30. Moynihan, P. (1992). Madness and Community: The Fear Effect of an Exploration of Social Reform. London: University of London.
31. National Mental Health Consumer & Carer Forum (2004). Consumer and Carer Participation Policy. Canberra: NMHCCF. [Cited 5 Jun 2009]. Available from: URL:.
32. National Mental Health Consumer & Carer Forum of Australia (2010). The Mental Health Consumer and Carer Identified Workforce - A Strategic Approach to Recovery. Canberra: NMHCCF. [Cited 10 Sept 2010]. Available from: URL:.
33. Nestor, P. & Galletly, C. (2008). The employment of consumers in mental health services: Politically correct tokenism or genuinely useful? Australasian Psychiatry, 16 (5), 344-347.
34. Plachta-Elliott, S. & Delman, J. (2009). Consumer-Led Evaluation Teams: A Peer-Led Approach to Assessing Consumer Experiences with Mental Health Services. Lawrence, MA: National Empowerment Center.
35. Stacey, K. & Herron, S. (2002). Enacting policy in mental health promotion and consumer participation. Australian E-Journal for the Advancement of Mental Health, 1 (1), 49-65.
36. Strauss, A. & Corbin, J. (1990). Basics of Qualitative Research: Grounded Theory, Procedures, and Techniques. California: Sage.
37. Sweeney, A., Beresford, P., Faulkner, A., Nettle, M. & Rose, D. (Eds) (2009). This Is Survivor Research. London: PCCS Books.
38. Szmukler, G. I. & Bloch, S. (1997). Family involvement in the care of people with psychoses: An ethical argument. British Journal of Psychiatry, 171, 401-405.
39. Tough, A. (1973). The Adult's Learning Projects: A Fresh Approach to Theory and Practice in Adult Learning, 2nd edn. Toronto: Ontario Institute for Studies in Education.
40. United Nations General Assembly (2006). Convention on the Rights of Persons with Disabilities. [Cited 1 Apr 2010]. Available from: URL:.
41. Vella, J. (2002). Learning to Listen, Learning to Teach. San Francisco, CA: Jossey-Bass.
42. Viney, L., Oades, L., Malins, G., Strang, J. & Eman, Y. (2004). A Framework for Consumers Evaluating Mental Health Services. University of Wollongong, NSW: Illawarra Institute for Mental Health.
43. Wadsworth, Y. (2004). Consumer directed mental health research: II. In: K. M. Griffiths, H. Christensen, L. Barney, A. Jenkins, C. Kelly & K. Pullen (Eds). Promoting Consumer Participation in Mental Health Research: A National Workshop. (pp. 67-75). Canberra: The Australian National University: Centre for Mental Health Research.
44. Wadsworth, Y. & Epstein, M. (1996). Understanding and Involvement (UandI) - Consumer Evaluation of Acute Psychiatric Hospital Practice - A Project Concludes. Melbourne, Victoria: Victorian Mental Illness Awareness Council.
45. Wallcraft, J., Schrank, B. & Amering, M. (2009). Handbook of Service User Involvement in Mental Health Research. Oxford: Wiley-Blackwell.
46. Watkins, K. (1991). Facilitating Learning in the Workplace. Geelong, Victoria: Deakin University Press.
47. Wells, K. & Jones, L. (2009). 'Research' in community-partnered, participatory research. Journal of the American Medical Association, 302 (3), 320-321.
48. World Health Organization (1990). Report of a World Health Organization meeting on consumer involvement in mental health services. Psychosocial Rehabilitation Journal, 14 (1), 13-20.
49. Wynaden, D. & Orb, A. (2005). Impact of patient confidentiality on carers of people who have a mental disorder. International Journal of Mental Health Nursing, 14, 166-171.