Clubhouse Research: Why and How

by Diane Anastasia

Before attending the Eighth International Seminar, I was primarily concerned with raising one question in this workshop on research: "Can we do research and remain faithful to the clubhouse model?" However, having had the advantage of attending several workshops, I now, like the Monday morning quarterback, realize that there is a much more basic issue that needs to be addressed, which is: "Why would or should a clubhouse do research at all?"

Those of us who have experienced clubhouse firsthand - members, families, and staff - know the profound and radical effect participation has on members' lives. While the general population, understandably, may react to a diagnosis of major psychiatric illness with despair and hopelessness, we in the clubhouse community react differently. We have seen the valiant efforts of many members who, through painstakingly small steps, have struggled to regain control over their lives. We know that with support from other members and staff, members can return to the work force. They can form social relationships. They can return to school. And they can become productive and valued members of society.

But although the clubhouse movement has grown considerably over the last few years, we still remain a well kept secret among the population at large. Our members' accomplishments are significantly missing from the academic curriculum and the published literature. Those of us who have witnessed the resurgence of hope among members and the rehabilitative power of being part of this unique, supportive community have a responsibility to educate the public.

Apart from the positive good that clubhouse membership achieves, there are additional, compelling reasons for doing research. The political and economic climate, coupled with the specter of managed care, indicate that funding will be much more competitive than it previously has been. However, since we have the anecdotal evidence of our relative effectiveness and competitiveness, why not provide the `hard data'? If successful results are what funding agencies are seeking, we have nothing to fear.

As to the second question, "Can we do research and still remain faithful to the clubhouse model?" the answer is a resounding Yes! That is, provided we take the time to adhere to two of the basic tenets of clubhouse: relationships, and members being engaged in all of the work of the unit.

Last year, Genesis Club got involved in two research projects. We were fortunate to develop a relationship with Dr. Paul Barreira, a psychiatrist from the University of Massachusetts Medical Center, a neighboring hospital. Our members expressed a desire to have their many questions about medicine and their side effects answered in an informal, relaxed manner. Often they felt that their own doctors were either intimidating or in a rush. To meet this need, Genesis Club invited Dr. Barreira to come to the clubhouse once a month, after the work-ordered day, for an hour of Medical Education. These sessions were very successful and highly informative. Gradually, a mutual respect and regard developed between the membership and Dr. Barreira.

ANASTASIA

Dr. Barreira was aware of the need for clubhouses to produce empirical data to corroborate their members' success in returning to the work force, and he suggested we collaborate on such a research project.

Members were involved from the inception of the project. Together, we designed a database which incorporated members' Transitional Employment history. A group of members retrieved that information from paper files and recorded it onto index cards. Members who were comfortable with the computer then entered the information into the data base. Dr. Barreira was able to enlist a research assistant, Amy Traverso, to do the statistical analysis. Amy came to the clubhouse on a regular basis, and took the time to establish a relationship with several members and engaged them in the project. The result was a study, presented at a Poster Session, which tracked the numbers who participated in Transitional Employment. The study indicated that 49% of members who have moved on to independent employment had first participated in the Transitional Employment program.

Though productive, this study represents only the preliminary stage of the research project. Alexis Henry, a Research Assistant Professor at U. Mass., and a member of the Board of Directors at Genesis, is currently spending two days a week at the clubhouse working on a more thorough outcome study of the relationship between variables such as diagnostic category, previous work history, and employment outcome.

We are confident that these studies will provide empirical data to support the clubhouse contention that T.E. participation not only leads to members' increased sense of well-being, but paves the way to independent employment.

We need to let people know what clubhouses can and are doing. We need to become more responsible for carrying out the kind of research that will not only ensure our future as a movement, but will show the general population the hope that clubhouses can provide for people with mental illness.

Diane Anastasia is on the staff at Genesis Club, in Worcester, Massachusetts

ANASTASIA