A Study of ECT and Patient Perceptions
Background, Research MethodsA Study of ECT and Patient Perceptions
Background, Research Methods
This study arose from concern that the voices of ECT patients were not being heard. The common complaints of sustained memory loss, cognitive learning difficulties and other effects after a series of ECT, are often met with contempt from the psychiatric community. The medical establishment contends that such effects simply do not occur; they are the result of the underlying depression, or are simply "misunderstandings" by the patients.
In January, the author sent out surveys asking questions about individuals' experiences with ECT. The survey was posted across the Internet in newsgroups, mailing lists, on-line services, bulletin boards and by word of mouth. In addition to posting the survey in mental health related areas, it was sent to several non-mental health newsgroups and mailing lists. (The original survey is available upon request.)
Obviously, a perfect sampling of ECT recipients is not possible. Confidentiality prevents the non-medical researcher from access to lists of patients, and this was one way of securing responses.
In true representative sampling, the sample must be representative of the target population in order for any inferences to be valid across the entire population. Past ECT studies are no different than this study in that respect. Researchers make claims that ECT causes no permanent damage, based on a sample of perhaps 10 or 20 subjects. These subjects are treated at the same time, in the same hospital, by the same doctor. And because they have continued treatment with the same treatment team, one would assume that they were satisfied with treatment.
The Voices study does not investigate any one patient from a particular doctor, a particular area of the world, or one moment in time. Rather, it looks at a variety of patients who have had ECT treatment in a variety of locations, different doctors, and different time periods. Surveys were received from patients who had undergone ECT in the last four decades, and from the United States, New Zealand, Australia, Canada and the UK.
A study that would truly reflect the honest experiences of ECT patients would involve interviewing thousands of patients across the world. Other research that is desperately needed is a before and after-ECT study of the brain. The American Psychiatric Association is on record as saying it opposes such a study.
A large-scale study of ECT recipients' perceptions about their treatment would be a good use of NIMH funds, and something that should be considered by researchers in future studies.
The actual survey was conducted via the Internet and regular mail between the months of January and April, 1996, with a period of follow-up questions in May and June. Participants were given not only an electronic mail address, but a post office box if they had no access to computers or wanted more anonymity. Additionally, anyone could use one of the anonymous servers on the Internet if confidentiality were crucial. Those servers provide an anonymous identification so that the reviewer could follow up with additional questions, yet not know the identity of the responder.
