"People don't want to be research subjects or objects," explains Dr. Nelson. "They want research done with them, not on or to them." PAR is a model of research that gives participants ownership over the research, providing a sense of control and comfort. This is consistent with the general philosophy of CSIs, and makes participation in research more appealing. Consumers are sometimes wary of the motives of professionals. By fully involving participants in the process, however, their doubts can be overcome and they are more likely to respond openly to the researchers.

What are the challenges of participatory action research?

Several consumer/survivor research assistants in this study had social, personal, and health issues that sometimes interfered with their ability to work on the study, and investigators had to build a strong system of communication and support. In some cases, health issues resulted in hospitalization. Extra personal support, in the way of hospital visits, for example, became necessary to maintain the relationship between investigators and research assistants. Rather than being a hindrance to the research, this blurring of the line between work and personal life contributed to the close relationships that were essential to the participatory research process.

How has the research community benefited from this study?

Investigators in the CSI study have demonstrated that focusing on trust, honesty, respect, inclusion and participation is an effective approach. It serves the research, the researcher, and the community being studied. Trusting relationships were built among all involved – researchers, assistants, and participants – and as a result, participants were open and honest. Using PAR enabled the investigators to elicit better information and thus, better study results.

How have these CSIs benfited from their participation?

The four CSIs involved in this study have learned about the research process, raised awareness of their initiatives within their local communities, and gained new knowledge about their own organizations. For example, researchers developed a system tracking tool, a computer program to keep an inventory of CSI activities. Prior to this study, the participating CSIs had no way of mapping this information. Now, however, they can continue to use this tool and the information gleaned from it for their own advantage.

There were a number of benefits to the consumers who were hired as research assistants. Individuals obtained job experience and training they would not otherwise have received, and some have successfully moved on to other employment. Their self-esteem improved, they learned new skills, and they were paid for their efforts. Study participants also reported that their interviews were personally fulfilling – they appreciated being heard and they felt respected, knowing that their opinions were valued.

Finally, this study is demonstrating that CSIs are of great value to consumer/survivors. These findings will help policymakers to determine how best to meet the needs of this population group, and will ultimately benefit CSIs and their members.

For more information about this study, see the project description.

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