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The User Perspective and User Experiences:A Basis for New KnowledgeUniversity of Missouri-Columbia School of Medicine. Her specialty is researching peer-run programs. In January, 2006, she spoke at a meeting in Amsterdam which was hosted by the Trimbos Institute. The meeting was held in a flamboyantly decorated hall of the youth theater. There was no advertising whatsoever on the premises. Dr. Campbell is a charming, motherly woman without a speck of arrogance. She made a point of saying that she was not going to “lecture” but rather tell us about herself. She calls herself a trauma survivor who has suffered depressions and mania, though she used to keep these diagnoses to herself. It was after these experiences that she attained her PhD. She was much influenced by the civil rights movement in the US of the sixties and seventies [of the 20th century]. Her political sympathies are socialist and Marxist. She is not a follower of Jung or Freud. She is more partial to the philosophy of William James and feminist epistomologists. The book “Even the Rat was White” much impressed her. She opposes Popper’s positivism which she regards as denying experiential knowledge. She resisted it at university by not learning it. Campbell was launched into her career by an ad which led her to be hired for research on what promotes the wellbeing of people with psychiatric problems. Before becoming a PhD she had supported herself as an opinion surveyor, doing phone interviews and such. This background provided her with valuable experience and knowledge of what it takes to evaluate research. She found that since her work was financed by the state, there was pressure on her to study politically correct subjects like the deleterious effects of smoking and weight gain, or the benefit of exercise. She was specifically instructed to not study civil rights. Steering the funding of her research in the direction of her targets required ingenuity. Campbell noted that the type of answers you find have everything to do with the type of questions you ask. There is a political struggle around which questions are legitimate. The things that promote wellbeing in the mentally ill are the same things that promote wellbeing in everybody, such as sufficient food, reasonable housing, and social contacts. Professionals and consumers have different perspectives about what constitutes good treatment and what the goals of treatment should be. 55% of people who had been involuntarily committed reported feeling harmed by the experience. People avoid seeking help not because of the stigma involved with mental illness, but because of their justified fear of the mental health system. No one else has studied the negative outcomes of treatment. All other research looks only at the benefits. There has been no study, for instance, on the side effects of drugs. There are almost no statistics available anywhere on how many people are involuntarily committed. Not just in the mental health system, but throughout medicine, the prevailing assumption is that the professional knows best [and therefore must be obeyed] even though he is like the blind men and the elephant. The government has to be convinced of the efficacy of peer-run programs before it will fund them. But first it has to be persuaded to fund the research that can demonstrate that efficacy. The research has to be presented in a way that will make it acceptable to those who review it. Campbell’s research project succeeded in obtaining $20 million in government funding. The first year was spent preparing and recruiting the personnel, the second collecting the data, and the third year analyzing the collected data. The research revealed that peer-run programs are effective in the first place in helping people realize that they are not alone with their problems. They further provide hope, a powerful outcome motivator. Drop-in centers are most robust in promoting wellbeing. They provide a safe, accepting environment. The above is taken from my notes on Dr. Campbell’s talk. At this point there was a break, after which the audience was invited to ask questions. Below is the sampling of questions and answers I caught in my notes. Q. Isn’t it difficult to collect the data, as mental health consumers are reluctant to talk about their negative experiences? A. Yes. One technique for doing this can be conducting the interview in an informal setting, away from the premises of the mental health system. (Suggestions made jokingly by members of the audience: a coffeeshop or dark-room) Q. You mentioned that to get the right answers it’s important to ask the right questions. Do you have a list of such questions that we can access? A. No, but books about the subject have been written by other people. Tip: Don’t ask global questions. Dissatisfaction emerges in the details. Q. Did you encounter a lot of prejudice against the mentally ill in your work? A. Oh yes, very much. Q. Have you done research into hope, and its role in recovery? A. Yes. Hope is a major factor in the outcome of treatment. We found that during the course of psychiatric hospitalization, hope steadily declines. At the end of treatment people have much less hope than when they began. Q. I find that answering questions as a participant in a research study is in itself therapeutic. Did you design your research to take this therapeutic value into account? A. No, our object is to collect data. We do not have therapeutic intentions. Q. Is there not a conflict of interest in your research? We so often today hear psychiatric professionals using terms they learned from the user/survivor movement in a manipulative way. A. Yes, just as we learn the professional language, professionals learn peer-terminology from us. Q. What are the priorities of your research? A. They are to demonstrate that peer-run programs are evidence-based so that the government will fund them. Q. If you knew how psychiatrists think, you’d never believe what they say. A. We found that we had no choice but to use psychiatric jargon and include diagnoses in our research, as otherwise it would be dismissed as unprofessional. The following anecdote was not part of the program, but too good to not tell you: At the beginning of the meeting, when the chairman was announcing the schedule, his eyes turned to the clock on the wall, and all eyes in the room followed his. “Oh, that clock doesn’t work” several people called out in chorus. After the meeting, while talking to two of the guests, I apologized for being compelled to hurry home. Automatically my eyes lifted to the clock, and then I remembered, “Oh, it doesn’t work. But--” I added in surprise, “it has moved.” “It does work,” said one of my conversation partners, and the other said, “Somebody said it doesn’t work, and we all assumed that is true.” “But it’s missing the hour hand,” I protested. “No it’s not. The long red hand is the hour hand.” “No, that’s the seconds hand,” I protested again. “An hour hand is short and fat.” “Not on this clock. The long red hand is the hour hand. The time on the clock is exactly correct.” He was right, I’m sure, but I am too deeply prejudiced about the shape of an hour hand to tell time on a deviant clock. Isn't this exactly our complaint about professionals in the MHS, that they are too deeply prejudiced to listen to what their (often involuntary) clients say? As to Dr. Campbell’s research, from the MeTZelf point of view, it is of mixed benefit. On the one hand, peer contact can be a boon for dealing with certain kinds of problems. It’s not much use in solving homelessness or incompetence, but can be very helpful to people who are coping with overwhelming emotions, bad memories, or hearing voices. Among each other peers often find much longed for non-judgmental recognition, understanding, and identification. Peers can share their experiences and suggest practical ways in coping, personally tested by themselves. The peer-to-peer relationship is less likely to be one of domination, humiliation, threat, or abuse than the professional-patient relationship. Peer programs are safer than therapy because there is hardly any power imbalance. The benefits are mutual. Social status and incomes are not at stake. On the other hand, Campbell’s philosophy seems to be “If you can’t lick ’em, join ’em.” She seeks to support peer programs by making it possible to access public funds for them. To do so, peers have to compete with professionals in the mental health system. They have to talk and act like professionals -- they have to be professionalized. But then they are no longer peers. Calling in the government money-machine means calling in the power that goes with it. The power-balance is tipped again. A lot of professional power and interests are at stake around $20 million (and that was only for the research, not the programs themselves). Furthermore Campbell doesn’t veil her purpose and method of research. Knowledge for knowledge's sake is not her aim. She uses research as a key to open treasury locks. Perhaps naively she confesses to having decided the outcome of her research in advance, and having designed it to obtain that outcome. This is no different from other medical research, but that’s exactly the point. By using such methods to achieve her goals, she is legitimizing them. This is a dangerous strategy. Today she is funded to demonstrate the efficacy of peer-run programs, tomorrow someone else is funded to demonstrate their inefficacy. Then peer-run programs may not only become ineligible for state funding, they may be outlawed as quackery to boot, and we'll have to carry on peer support in secret. The government is like the Biblical Balaam in reverse: whoever seeks its blessing risks incurring its curse. MeTZelf is dedicated to exposing the bias inherent in medical research. Highlighting the pitfalls of professionalism is advantageous to lay views. MeTZelf further seeks to break the stronghold of the state on health care, and the coercion of individual consumers by state licensed and funded professionals. In short, MeTZelf seeks to challenge the authority of the professional, not emulate it.
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