The New Paradigm of Recovery From Schizophrenia: Cultural Conundrums of Improvement Without Cure

Abstract

This article is a qualitative investigation of the subjective experience of recovery from the perspective of persons living with schizophrenia-related disorders. An NIMH-sponsored ethnographic study of community outpatient clinics was completed for 90 persons taking second-generation antipsychotic medications. Research diagnostic criteria and clinical ratings were obtained in tandem with an anthropologically developed Subjective Experience of Medication Interview (SEMI) that elicits narrative data on everyday life and activities, medication and treatment, management of symptoms, expectations concerning recovery, and stigma. Ethnographic observations from diverse settings (clinics, public transportation, restaurants, homes) were also obtained. The primary findings are that recovery was experienced in relation to low levels of symptoms, the need to take medications to avoid hospitalization or psychotic episodes, and personal agency to struggle against the effects of illness. The majority of participants articulated their sense of illness recovery and expectation that their lives would improve. Improvement and recovery is an incremental, yet definitively discernable subjective process. Several problems were identified as part of this process surrounding cultural conflicts that generate the experience of ambivalence analyzed here as the "paradox of recovery without cure," irreconcilable "catch-22" dilemmas involving sacrifice (e.g., one must be "fat" or be "crazy"), and substantial stigma despite improvement in illness and everyday life experience.

There's no place like (a) home: Ontological security among persons with serious mental illness in the United States

“…Markers of ontological security were clearly in evidence for those living in their own apartments--a sense of control, reassuring daily routines, privacy, and the capacity to embark upon identity construction and repair. Participants' ability to maintain the 'rhythms of life' (Jenkins & Carpenter-Song, 2005, p. 407) may seem unsurprising to some, but must be viewed in juxtaposition to an entrenched view among mental health providers that persons with schizophrenia or bipolar disorder are too unstable to live on their own or experience the psychological benefits of solitude and personal agency (Koekkoek et al, 2006;Lamb & Weinberger, 2005).…”

“…In addition to the disabling effects of cumulative trauma and adversity, societal stigma and discrimination undermine such efforts (Hopper, 2002). The recent growth in support for 'recovery-driven' services emphasizing selfdetermination and hope (Deegan, 1988;Davidson, 2003;Jenkins & Carpenter-Song, 2005) highlights the legitimacy of calls for system change as well as the difficulties attending such change.…”

0271 Treatment and Recovery in First-Episode Psychosis: A Qualitative Analysis of Client Experiences

“…), ethnography (e.g. Jenkins et al, 2005, Jenkins & Carpenter-Song, 2005, narrative analysis (e.g. Thornhill et al, 2004), and phenomenology (e.g.…”

“…The crucial importance of a sense ofagency and personal control in the subjective experience ofrecovery has been emphasized by numerous researchers (e.g. Jenkins & Carpenter-Song, 2005;. There is a growing body of research exploring the critical personal and sociocultural forces involved in creating and maintaining chronicity (e.g.…”

Cómo encontrar un lugar en el mundo: explorando experiencias de recuperación de personas con trastornos mentales graves

“…Y por otra parte, hallamos historias de resistencia, de pequeños éxitos y alegrías, de búsqueda de sentido y de construcción de una identidad compatible con el mundo social mediante los contactos personales más cercanos y las actividades diarias. Son estas experiencias diarias, que pueden parecer insignificantes, las que sostienen el proceso de recuperación de los pacientes (Boydell, Gladstone, Volpe, 2003;Jenkins, Carpenter-Song, 2006;Ridgway, 2001;Roe, Davidson, 2005;Saavedra 2009). …”