I’ve been relatively distracted by work & travels, but am posting to alert folks to my research team’s new phenomenology of psychosis study and highlight a few of our innovations.
First, click here to access our official recruitment flyer. (And please spread the word! We’re interested in interviewing folks anywhere in the world, with any type of “psychotic” or “hallucinatory” experience, including musical hallucinations related to hearing loss, visual flashbacks in PTSD, and epileptic visions & auras, though our experience as a time certainly revolves around “schizophrenic” forms of psychosis.)
Now for the innovations:
(1) In addition to being (to our knowledge) the first user/voice hearer-led phenomenological study of “psychotic” experiences in the US, all coding and analysis will be carried out by (multiple) individuals with diverse first-person experiences (in an adaptation of Sweeney et al’s (2012) “multiple coding” procedure).
(2) Several of the researchers involved in the study (myself included) will serve as both interviewers and interviewees (though no one will code their own interview). The idea here, in part, is to subject the team’s researchers to similar “conditions” as participants, and learn from the inevitable gap between researcher-participant narratives and researcher-led analysis.
(3) All participants will have the chance to (a) request additional interview time (at a later point); (b) review and clarify/modify their own interview transcripts; and (c) review and comment on journal drafts prior to submission.
(4) Our intention is to suspend normative categorical assumptions regarding the differences between such phenomena as intrusive thoughts, “hallucinations,” “delusions,” “passivity symptoms,” “thought disorder,” “derealization,” and so on, and also to explicitly attend to the dynamic and synergistic relationships between phenomena (cross-sectionally and over time). In addition, we are explicitly interested in the role of agency, intention and awareness: e.g. how do individuals actively shape not only their experience of psychosis, but also (and perhaps more fundamentally) the form and nature of their “symptoms”? Also, what role does language (and the deployment of particular “cultural scripts”) play?
Our working hypothesis, in the loosest sense, is that “psychosis” often functions as a kind of dynamical system—a system, that is, generated by the relationships between components (including various forms of agency, decoupled from a central executive, and alterations in the domains of space, time, sound, vision, etc.) as well as the particular constraints and opportunities of the sociocultural, biological and physical environment.
Lived experience ,questioning the why of what occurred ,than doing relativly safe self initiated experimentation will lead to cure.Relying on so called professionals who are always ready to do dangerous experiments on others leads to the continuing nightmare discribed in Robert Whitaker’s book Mad in America and continued in his Anatomy of an Epidemic.When the center is lost the pieces that are left are what the human going through this grasps to consolidate.That these experiences are usually lived friendship free and social worked and psychiatrized to death leave us with what we have.Even newborn and children are not spared.See Edwin Black’s book War Against The Weak.By the way it takes money to do safe self initiated experimentation.Fortunately some finally came my way and I succeeded. Sincerely, Fred Abbe
Thanks for posting, Fred. I’d be interested in what you think about user/survivor-led research specifically. Have you ever read the British volume This is Survivor Research?
I have never read This is Survivor Research but I will look for it.The idea of user/survivor-led research should include only user/survivors on the entire team directed to the teams self generated inquiry toward a goal of relieving human suffering and making possible long life,health,and happiness.To be subverted by the established psychiatric jugernut is an ever present danger.This must be funded by those without a hidden agenda. Sincerely,Fred Abbe
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