"Ethnoscapes" domésticos y rite de passage: significación y cronicidad del diagnóstico en esquizofrenia

Based on the results of an ethnographic study with people diagnosed with schizophrenia and their relatives in Barcelona and Tarragona along one year, I problematize the transformation of roles and relationships inside the household from the first burst and the assignation of a diagnosis as rite of passage. I appeal to a cultural interpretation of family, understanding the family group as a specific ethnoscape. I analyze the chronicity meaning, and its consequences in the conformation of the “role of sick person” in the context of parental relationships. I also discuss the paradoxes in terms of autonomy for the affected persons because of the projection of cultural connotation of chronicity.A partir de los resultados de un estudio etnográfico realizado con personas diagnosticadas de esquizofrenia y sus familiares en Barcelona y Tarragona durante un año, se problematizan las transformaciones de los roles y relaciones dentro del espacio doméstico a partir del acontecimiento del primer brote y la asignación del diagnóstico como ritual de paso. Para ello, se recurre a una lectura cultural de la familia, entendiendo el grupo como un ethnoscape específico. Se analiza la concepción de la cronicidad, y sus consecuencias en la conformación del rol de enfermo en el marco de las relaciones de parentesco, y se discuten las paradojas en términos de autonomía para los afectados, debido a la proyección de la connotación cultural de cronicidad

Contribuciones literarias, biográficas y autoetnográficas a la antropología médica en España: el caso catalán

El método autoetnográfico ha sido un importante aporte al desarrollo de la antropología médica en España. En la primera parte de este artículo, se exploran y revisan documentos habitualmente clasificados como literatura y autobiografías, vinculados a los procesos de salud-enfermedad-atención y publicados antes de 1980, cuyo paradigma es el diario de Ramona Via, Com neixen els Catalans, publicado en 1972. La segunda parte se enfoca en las contribuciones desarrolladas desde la década de 1980, a partir del concepto de autoetnografía, cuyos objetos son el cuerpo, la salud y la enfermedad a partir de la experiencia etnográfica subjetiva. A diferencia del primer periodo, éste se caracteriza por el surgimiento de autores antropólogos que han impulsado el desarrollo de este método legitimado desde la escuela de Tarragona, y concretizado en el primer congreso español de autoetnografía en 2015.The autoethnographic method has been an important contribution to the development of medical anthropology in Spain. This article first reviews and explores documents published before 1980 that are usually classified as literature and autobiography and are linked to the health-disease-care process, a paradigmatic example of which is Ramona Via’s diary Com neixen els Catalans [How Catalans are born] published in 1972. The second part of the article is focused on contributions carried out since the 1980s using the concept of autoethnography, which have as their object the body, health and illness based on a subjective ethnographic experience. This period, unlike the first, is characterized by the emergence of anthropologist authors who have promoted the development of this method, legitimized by the Tarragona School and substantialized in the first Spanish conference of autoethnography in 2015

Internados en casa: del manicomio a la “institución doméstica total”

El presente estudio pretende explorar los aportes percibidos por los miembros de un grupo de escucha de voces (GEV) que acuden a un Centro de Día para personas con trastorno mental grave. Se ha utilizado una metodología cualitativa realizando entrevistas en profundidad a los participantes. Las experiencias previas que estas personas tuvieron cuando intentaron hablar sobre sus voces fueron generalmente negativas. Los resultados muestran que la participación en el GEV tiene un impacto positivo en la vivencia subjetiva de la persona, refiriendo un mayor control sobre la experiencia, una visión menos negativa de la misma y un menor temor ante la presencia de las voces. El hecho de compartir la experiencia con “iguales” fomenta la esperanza, disminuye el aislamiento y mejora la relación de la persona con sus voces. Los resultados plantean la necesidad de reflexionar sobre el tipo de prácticas que se llevan a cabo en los dispositivos de atención en salud mental y servicios sociales y la filosofía que subyace a las mismas

Contribuciones literarias, biográficas y autoetnográficas a la antropología médica en España: el caso catalán

The autoethnographic method has been an important contribution to the development of medical anthropology in Spain. This article first reviews and explores documents published before 1980 that are usually classified as literature and autobiography and are linked to the health-disease-care process, a paradigmatic example of which is Ramona Via’s diary Com neixen els Catalans [How Catalans are born] published in 1972. The second part of the article is focused on contributions carried out since the 1980s using the concept of autoethnography, which have as their object the body, health and illness based on a subjective ethnographic experience. This period, unlike the first, is characterized by the emergence of anthropologist authors who have promoted the development of this method, legitimized by the Tarragona School and substantialized in the first Spanish conference of autoethnography in 2015.El método autoetnográfico ha sido un importante aporte al desarrollo de la antropología médica en España. En la primera parte de este artículo, se exploran y revisan documentos habitualmente clasificados como literatura y autobiografías, vinculados a los procesos de salud-enfermedad-atención y publicados antes de 1980, cuyo paradigma es el diario de Ramona Via, Com neixen els Catalans, publicado en 1972. La segunda parte se enfoca en las contribuciones desarrolladas desde la década de 1980, a partir del concepto de autoetnografía, cuyos objetos son el cuerpo, la salud y la enfermedad a partir de la experiencia etnográfica subjetiva. A diferencia del primer periodo, éste se caracteriza por el surgimiento de autores antropólogos que han impulsado el desarrollo de este método legitimado desde la escuela de Tarragona, y concretizado en el primer congreso español de autoetnografía en 2015

Del hospital de pobres a la cultura hospitalo-céntrica. Economía política y cambio cultural en el sistema hospitalario catalán / From the poor hospital to the hospital-centric culture. Political economy and cultural change in the Catalan hospital system

This article describes the evolution of the Catalan Health System, using the development of a key cultural concept ?hospital-centrism? to understand the hegemony of the hospital institution in the current health devices. To this purpose, and using two complementary perspectives such as anthropological history and medical anthropology, the article analyzes a case study from three examples: the demand for hospital emergencies related with a cultural conception of what is ?severe?, and with its effectiveness embodied by the citizens; the need of the asylum role in chronic or terminal diseases; and the transformation of domestic care to ?domestic hospitalization? in mental health cases. Keywords: hospital-centrism, health system, history of hospitals, emergencies, chronic care, mental health

Emoções e relações em tempos de COVID-19: uma etnografia digital em tempos de crise

A pandemia global da COVID-19 e seus derivados na vida social, política e econômica intensificou algumas das desigualdades e vulnerabilidades existentes, ao mesmo tempo em que levou a novas formas de viver o cotidiano, marcadas principalmente pelo confinamento. Nossa pesquisa tem como objetivo analisar, a partir do prisma da antropologia médica, os efeitos emocionais e relacionais da nova situação e sua evolução durante os próximos meses. Para isso, tomamos como ponto de partida a crescente centralidade das redes sociais e as novas tecnologias de comunicação num contexto de distância social e/ou física. Nos baseamos nessas tecnologias e em suas potencialidades metodológicas para coletar dados sobre as condições e efeitos do confinamento e da crise sanitária. Com esse objetivo estamos coletando dados qualitativos e quantitativos através de um questionário online que combina perguntas abertas com perguntas de escolha múltipla. Alguns resultados preliminares são apresentados neste texto.The global pandemic of the COVID-19 and its consequences in social, political and economic life have intensified some of the existing inequalities and vulnerabilities, while at the same time have brought about new ways of daily life, marked by confinement. Our research aims to analyze, from the perspective of medical anthropology, the emotional and relational effects of the new situation, and its evolution over the coming months. To this end, we have taken as our starting point the growing centrality of social networks and new communication technologies in a context of social and/or physical distance. We have based on these technologies and their methodological potentialities to collect data on the effects of confinement and the health crisis. To this end, we are collecting qualitative and quantitative data through an online questionnaire that combines open questions with multiple-choice questions. Some preliminary results are presented in this text.La pandemia global de la COVID-19 y sus derivadas en la vida social, política y económica han intensificado algunas de las desigualdades y vulnerabilidades existentes, a la vez que han propiciado nuevas formas de vivir lo cotidiano, marcadas principalmente por el confinamiento. Nuestra investigación pretende analizar, desde el prisma de la antropología médica, los efectos emocionales y relacionales de la nueva situación y su evolución durante los próximos meses. Para ello hemos partido de la centralidad creciente que tienen las redes sociales y las nuevas tecnologías de comunicación en un contexto de distanciamiento social y/o físico. Nos hemos basado en estas tecnologías y en sus potencialidades metodológicas para recoger datos sobre las condiciones y los efectos del confinamiento y la crisis sanitaria. Con este objetivo, estamos recabando datos cualitativos y cuantitativos mediante un cuestionario online que combina preguntas abiertas con otras de elección múltiple. En este texto se presentan algunos resultados preliminares

Unraveling reactionary care: the experience of mother-caregivers of adults with severe mental disorders in Catalonia

In most Mediterranean countries, people diagnosed with severe mental disorders (SMDs) are typically cared for by the mother, causing a significant burden on people in this family role. Based on a broader mental health participatory action and qualitative research carried out in Catalonia (Spain) of 12 in-depth interviews and 3 focus groups, this article analyses the mother-caregivers' experience in the domestic space. The results show that patients and caregivers are engaged in a relationship of 'nested dependencies', which create social isolation. This produces the conditions of 'reactionary care', practices that limit the autonomy of those affected and that reproduce forms of disciplinary psychiatric institutions. We conclude that both institutional violence derived from economic rationality and that which stems from the gender mandate feed off each other into the domestic sphere. This research argues for placing care at the center of clinical practice and shows the need to consider the structural forces shaping it

The collaborative management of antipsychotic medication and its obstacles: A qualitative study

Antipsychotic medication is the primary treatment for psychotic conditions such as schizophrenia and schizoaffective disorders; nevertheless, its administration is not free from conflicts. Despite taking their medication regularly, 25-50% of patients report no benefits or perceive this type of treatment as an imposition. Following in the footsteps of a previous initiative in Quebec (Canada), the Gestion Autonome de la Médication en Santé Mentale (GAM), this article ethnographically analyses the main obstacles to the collaborative management of antipsychotics in Catalonia (Spain) as a previous step for the implementation of this initiative in the Catalan mental healthcare network. We conducted in-depth interviews with patients (38), family caregivers (18) and mental health professionals (19), as well as ten focus groups, in two public mental health services, and patients' and caregivers' associations. Data were collected between February and December 2018. We detected three main obstacles to collaboration among participants. First, different understanding of the patient's distress, either as deriving from the symptoms of the disorder (professionals) or the adverse effects of the medication (patients). Second, differences in the definition of (un)awareness of the disorder. Whereas professionals associated disorder awareness with treatment compliance, caregivers understood it as synonymous with self-care, and among patients 'awareness of suffering' emerged as a comprehensive category of a set of discomforts (i.e., symptoms, adverse effects of medication, previous admissions, stigma). Third, discordant expectations regarding clinical communication that can be condensed in the differences in meaning between the Spanish words 'trato' and 'tratamiento', where the first denotes having a pleasant manner and agreement, and the second handling and management. We conclude that these three obstacles pave the way for coercive practices and promote patients' de-subjectivation, named here as the 'total patient' effect. This study is the first GAM initiative in Europe

Stultifera domus. Del manicomio a la institución doméstica total: vida cotidiana, familia y esquizofrenia

La desmanicomialització a Espanya va tornar a les persones amb trastorn mental greu (TMG) a casa amb les seves famílies, les principals encarregades de la cura en l'actual model d'atenció ambulatòria. Aquesta investigació presenta una comparativa entre l'antic model manicomial i custodial, i la vida quotidiana de les persones diagnosticades de TMG i les seves famílies cuidadores en l'actualitat, partint de la hipòtesi que hi ha una reproducció de lògiques de custòdia i manicomials en l'espai domèstic. L'objectiu era dilucidar quantes d'aquestes dinàmiques conservem, quins són i com funcionen. El treball de camp es va dur a terme amb persones diagnosticades, famílies cuidadores i professionals, en associacions i espais d'atenció a la salut mental pública de Catalunya. Els resultats mostren nombroses dinàmiques de custòdia, pròpies de les institucions totals en l'espai domèstic, que ens permet parlar d'una «institució domèstica total», amb diversos impactes: la sobrecàrrega de cures de les mares cuidadores i la pèrdua d'autonomia de les persones diagnosticades que es troben entre una identitat de «pacient total» i una «identitat liminal». La vida tutelada i normativitzada, la vigilància, el control, l'auto-reclusió, l'aïllament, l'absència o escassa inserció social, entre altres qüestions, reprodueixen les instàncies quotidianes dels antics manicomis.La desmanicomialización en España devolvió a las personas con Trastorno Mental Grave (TMG) a casa con sus familias, las principales encargadas del cuidado en el actual modelo de atención ambulatoria. Esta investigación presenta una comparativa entre el antiguo modelo manicomial y custodial, y la vida cotidiana de las personas diagnosticadas de TMG y sus familias cuidadoras en la actualidad, partiendo de la hipótesis de que existe una reproducción de lógicas custodiales y manicomiales en el espacio doméstico. El objetivo era dilucidar cuánto de estas dinámicas conservamos, cuáles son y cómo funcionan. El trabajo de campo se llevó a cabo con personas diagnosticadas, familias cuidadoras y profesionales, en asociaciones y espacios de atención a la salud mental pública de Cataluña. Los resultados muestran numerosas dinámicas custodiales, propias de las instituciones totales en el espacio doméstico, que nos permite hablar de una «institución doméstica total», con diversos impactos: la sobrecarga de cuidados de las madres cuidadoras y la merma de autonomía de las personas diagnosticadas que se encuentran entre una identidad de «paciente total» y una «identidad liminal». La vida tutelada y normativizada, la vigilancia, el control, la autoreclusión, el aislamiento, la ausencia o escasa inserción social, entre otras cuestiones, reproducen las instancias cotidianas de los antiguos manicomios.After Spanish psychiatric reform, people diagnosed with Severe Mental Disorder (SMD) moved from being confined in mental hospitals to live at home. In the existing model of ambulatory care, adults with SMD are taken care for by their families, especially their mothers. This research presents a historiographical analysis of the old asylum model, and an ethnographic analysis of the daily lives of people diagnosed with SMD and their family caregivers. Both aspects lead to a comparison of the two models, based on the hypothesis of the custodial and asylum logic reproduction in the domestic space. The aim of this research was to elucidate how much of these dynamics are maintained, what they are and how they function in the family home. The ethnographic analysis was carried out with diagnosed people, family caregivers and professionals, in associations and facilities of the Catalonian network for public mental health care. The results show numerous custodial dynamics typically described for total institutions in the domestic space, which allow us to speak of a «total domestic institution», with many consequences: caregiving mothers have an enormous care overload that affects their well-being, and diagnosed people experience an erosion of their autonomy, while they lead in a contradictory identity of «total patient» and a «liminal identity». Tutored and regulated life, surveillance, self- reclusion and isolation, absence of or limited social insertion, among other issues that occur at present at home, are like the daily circumstances lived by the insane in the old asylums

Household "ethnoscapes" and rite of passage: meaning and chronicity of the diagnosis in schizophrenia

Based on the results of an ethnographic study with people diagnosed with schizophrenia and their relatives in Barcelona and Tarragona along one year, I problematize the transformation of roles and relationships inside the household from the first burst and the assignation of a diagnosis as rite of passage. I appeal to a cultural interpretation of family, understanding the family group as a specific ethnoscape. I analyze the chronicity meaning, and its consequences in the conformation of the “role of sick person” in the context of parental relationships. I also discuss the paradoxes in terms of autonomy for the affected persons because of the projection of cultural connotation of chronicity