Survivor-Controlled Research: A New Foundation for Thinking about Psychiatry and Mental Health

Puede percibirse a la investigación controlada por el sobreviviente en el campo de la salud mental como el desarrollo más amplio de la investigación participativa. Esto no es solo porque anula el papel de los sujetos en la investigación, si no porque el conocimiento experiencial (como opuesto al clínico) adquiere un rol central durante todo el proceso de la investigación, desde del diseño al análisis y la interpretación de resultados.La primera parte de este artículo brinda alguna información de fondo acerca del contexto y el desarrollo de la investigación controlada por el usuario/sobreviviente en el Reino Unido. En la segunda parte, la discusión se enfoca en los primeros dos estudios alemanes que aplican esta metodología de investigación en el campo de la psiquiatría. Se usan ambos estudios como ejemplos de este enfoque, que favorece la cercanía al sujeto como opuesta a la "distancia científica".El objetivo general de este artículo es exponer los logros generales y desafíos de una investigación controlada por el sobreviviente. Al discutir el valor de este enfoque de investigación espero demostrar las formas en las cuales emergen cuestiones fundamentales relacionadas a la producción del conocimiento convencional y a los desafíos de la naturaleza de lo que cuenta como evidencia psiquiátrica.URN: http://nbn-resolving.de/urn:nbn:de:0114-fqs120187Betroffenen-kontrollierte Forschung kann als weiteste Entwicklung des partizipativen Ansatzes im psychiatrischen Bereich betrachtet werden: nicht nur, weil sie mit der Rolle der "Forschungssubjekte" abschließt, sondern auch, weil das Erfahrungswissen (im Gegensatz zum klinischen) eine zentrale Stellung einnimmt – angefangen vom Forschungsdesign bis zu den Phasen der Analyse und Interpretation der Ergebnisse. Der erste Teil dieses Beitrags bietet einige Hintergrundinformationen über den Entstehungskontext und die Entwicklung der betroffenen-kontrollierten Forschung in Großbritannien Im zweiten Teil werden die beiden ersten deutschen Studien dargestellt, die mit diesem Ansatz gearbeitet haben. Beide Studien sind Beispiele für einen methodischen Zugang, in dem die Nähe zum Forschungsthema dem der "wissenschaftlichen Distanz" bevorzugt wird. Das Anliegen meines Beitrags ist es, einen Einblick in die Erfolge sowie die Herausforderungen des betroffenen-kontrollierten Forschungsansatzes zu eröffnen. Für seinen Wert argumentierend möchte ich aufzeigen, wie dieser Ansatz konventionelle Wissensproduktion auf fundamentale Weise hinterfragt und das, was als Evidenz in der Psychiatrie gilt, anzweifelt.URN: http://nbn-resolving.de/urn:nbn:de:0114-fqs120187Survivor-controlled research in the field of mental health can be perceived as the most extended development of participatory research. This is not only because it does away with the role of research subjects, but because the experiential knowledge (as opposed to clinical) acquires a central role throughout the whole research process—from the design to the analysis and the interpretation of outcomes stages. The first part of this article provides some background information about the context and development of user/survivor-controlled research in the UK. In the second part, the discussion focuses on the first two German studies which apply this research methodology in the field of psychiatry. Both studies are used as examples of the approach, which favors closeness to the subject as opposed to "scientific distance." The overall objective of this paper is to outline the general achievements and challenges of survivor-controlled research. Arguing for the value of this research approach I hope to demonstrate the ways in which it raises fundamental issues related to conventional knowledge production and challenges the nature of what counts as psychiatric evidence.URN: http://nbn-resolving.de/urn:nbn:de:0114-fqs12018

Survivor-controlled research: a new foundation for thinking about psychiatry and mental health

Betroffenen-kontrollierte Forschung kann als weiteste Entwicklung des partizipativen Ansatzes im psychiatrischen Bereich betrachtet werden: nicht nur, weil sie mit der Rolle der "Forschungssubjekte" abschließt, sondern auch, weil das Erfahrungswissen (im Gegensatz zum klinischen) eine zentrale Stellung einnimmt – angefangen vom Forschungsdesign bis zu den Phasen der Analyse und Interpretation der Ergebnisse. Der erste Teil dieses Beitrags bietet einige Hintergrundinformationen über den Entstehungskontext und die Entwicklung der betroffenen-kontrollierten Forschung in Großbritannien Im zweiten Teil werden die beiden ersten deutschen Studien dargestellt, die mit diesem Ansatz gearbeitet haben. Beide Studien sind Beispiele für einen methodischen Zugang, in dem die Nähe zum Forschungsthema dem der "wissenschaftlichen Distanz" bevorzugt wird. Das Anliegen meines Beitrags ist es, einen Einblick in die Erfolge sowie die Herausforderungen des betroffenen-kontrollierten Forschungsansatzes zu eröffnen. Für seinen Wert argumentierend möchte ich aufzeigen, wie dieser Ansatz konventionelle Wissensproduktion auf fundamentale Weise hinterfragt und das, was als Evidenz in der Psychiatrie gilt, anzweifelt.Survivor-controlled research in the field of mental health can be perceived as the most extended development of participatory research. This is not only because it does away with the role of research subjects, but because the experiential knowledge (as opposed to clinical) acquires a central role throughout the whole research process—from the design to the analysis and the interpretation of outcomes stages. The first part of this article provides some background information about the context and development of user/survivor-controlled research in the UK. In the second part, the discussion focuses on the first two German studies which apply this research methodology in the field of psychiatry. Both studies are used as examples of the approach, which favors closeness to the subject as opposed to "scientific distance." The overall objective of this paper is to outline the general achievements and challenges of survivor-controlled research. Arguing for the value of this research approach I hope to demonstrate the ways in which it raises fundamental issues related to conventional knowledge production and challenges the nature of what counts as psychiatric evidence.Puede percibirse a la investigación controlada por el sobreviviente en el campo de la salud mental como el desarrollo más amplio de la investigación participativa. Esto no es solo porque anula el papel de los sujetos en la investigación, si no porque el conocimiento experiencial (como opuesto al clínico) adquiere un rol central durante todo el proceso de la investigación, desde del diseño al análisis y la interpretación de resultados.La primera parte de este artículo brinda alguna información de fondo acerca del contexto y el desarrollo de la investigación controlada por el usuario/sobreviviente en el Reino Unido. En la segunda parte, la discusión se enfoca en los primeros dos estudios alemanes que aplican esta metodología de investigación en el campo de la psiquiatría. Se usan ambos estudios como ejemplos de este enfoque, que favorece la cercanía al sujeto como opuesta a la "distancia científica".El objetivo general de este artículo es exponer los logros generales y desafíos de una investigación controlada por el sobreviviente. Al discutir el valor de este enfoque de investigación espero demostrar las formas en las cuales emergen cuestiones fundamentales relacionadas a la producción del conocimiento convencional y a los desafíos de la naturaleza de lo que cuenta como evidencia psiquiátrica

Unmaking madness: Exploring collective first-person epistemology

This thesis was submitted for the award of Doctor of Philosophy and was awarded by Brunel University LondonThis PhD research investigates the potential emergence of a new paradigm in understanding and approaching madness that is grounded in the first-person, collective knowledge of people who have personal experience of madness and who oppose its biomedical explanation. Unlike established participatory approaches in mental health and psychiatric research that involve experiential perspectives as subjective, add-on components, this inquiry takes first-person knowledge as a departure point and centers it throughout the research process. The notion of experiential knowledge in this thesis also extends to the researcher’s background. The emphasis is on the process of merging diverse first-person perspectives into a collective body of knowledge of madness that can offer a counter-discourse to the dominant, biomedical one. The investigation was undertaken in two main phases. In the first phase, I analysed a selection of written sources (conceptual, analytical and research work) authored by people who have first-person experience of madness and its treatment, and whose work challenges the biomedical paradigm. In the second phase, the analysis of written sources was used to generate questions for interviews with a subsample of the authors and activists from phase one. Fourteen people from six countries participated in this phase. Documenting the process of knowledge generation in these interviews is the central part of this inquiry. This thesis contributes to, and can be situated within Mad Studies, an emerging field of inquiry and activist scholarship. The overall approach is informed by the key values and principles of emancipatory disability research and, more specifically, by the key values and principles of survivor-controlled research in mental health. The research process is of equal importance to the findings. This thesis offers a methodological and ethical example of the value of solidarity, dialogue and working with difference whilst searching for connections and generating knowledge of complex human experiences

"But what if nobody's going to sit down and have a real conversation with you?" Service user/survivor perspectives on human rights

Purpose – The purpose of this paper is to discuss human rights assessment and monitoring in psychiatric institutions from the perspectives of those whose rights are at stake. It explores the extent to which mental health service user/psychiatric survivor priorities can be addressed with monitoring instruments such as the WHO QualityRights Tool Kit. Design/methodology/approach – The paper is based on the outcomes of a large-scale consultation exercise with people with personal experience of detention in psychiatric institutions across 15 European countries. The consultation took place via one focus group per country and extended to a total of 116 participants. The distinctive characteristic of this research is that it imparts an insider perspective: both the research design and the qualitative analysis of the focus group discussion transcripts were done by a social researcher who shared the identity of service user/survivor with the participants. Findings – The paper highlights human rights issues which are not readily visible and therefore less likely to be captured in institutional monitoring visits. Key issues include the lack of interaction and general humanity of staff, receipt of unhelpful treatment, widespread reliance on psychotropic drugs as the sole treatment and the overall impact of psychiatric experience on a person's biography. Research limitations/implications – Because of the way participants were recruited, the research findings do not offer a representative picture of the human rights situation in particular countries. They point clearly, however, to new directions for human rights research in the psychiatric context. Originality/value – This paper demonstrates the indispensability of experiential knowledge for not only securing and improving but also extending the understanding of human rights standards in psychiatry. </jats:sec

Between exclusion and colonisation: seeking a place for mad people’s knowledge in academia

The omnipresent psychiatric narrative of mental illness has always had its counter-narrative – the life stories of people labelled mad. The relationship between these two accounts has always been one of domination: mad voices have been – and continue to be – not heard, overwritten, silenced or even erased in the course of psychiatric treatment. As survivor researchers who have had these kinds of experiences, we wish to discuss parallels between this tradition and some contemporary academic efforts that claim to disrupt it

Eccrine spiradenoma of the nipple: Case report, differential diagnosis and literature review

Eccrine spiradenoma is a rare lesion originating from eccrine sweat glands, with only few cases reported in breast tissue: we here describe for the first time, an eccrine spiradenoma arising in the nipple. An 84 year-old woman with a lesion enlarging her right nipple, showing ulcerations and eczema-like changes of the covering skin, was admitted to our hospital. Surgical excision of the central quadrant with nipple-areola complex was performed, followed by histopathological evaluation which revealed an adenoma with predominantly basaloid epithelial cells. The lesion was composed of tightly packed small and large groups of cells, arranged in diffuse alveolar/pseudorosette formations. The small cells expressed p63 and calponin, while a positive expression of CK7 and CD117 was detected in large cells. After careful and detailed examination, excluding various similar entities, a diagnosis of eccrine spiradenoma has been rendered. Although extremely rare, eccrine spiradenoma should be taken into account in the differential diagnosis of subcutaneous primary breast tumors