RESUMEN

Community and public engagement (CPE) is increasingly becoming a key component in global health research. The National Institute for Health Research (NIHR) is one of the leading funders in the UK of global health research and requires a robust CPE element in the research it funds, along with CPE monitoring and evaluation. But what does "good" CPE look like? And what factors facilitate or inhibit good CPE? Addressing these questions would help ensure clarity of expectations of award holders, and inform effective monitoring frameworks and the development of guidance. The work reported upon here builds on existing guidance and is a first step in trying to identify the key components of what "good" CPE looks like, which can be used for all approaches to global health research and in a range of different settings and contexts. This article draws on data collected as part of an evaluation of CPE by 53 NIHR-funded award holders to provide insights on CPE practice in global health research. This data was then debated, developed and refined by a group of researchers, CPE specialists and public contributors to explore what "good" CPE looks like, and the barriers and facilitators to good CPE. A key finding was the importance, for some research, of investing in and developing long term relationships with communities, perhaps beyond the life cycle of a project; this was regarded as crucial to the development of trust, addressing power differentials and ensuring the legacy of the research was of benefit to the community.

Asunto(s)

Asunto(s)

RESUMEN

Resumen Objetivo: Comprender las dinámicas mediante las cuales los pacientes significan su experiencia de la depresión. Metodología: Se utilizó una metodología cualitativa, basada en la Teoría Fundamentada. Se realizaron entrevistas semiestructuradas a 10 pacientes diagnosticados de un trastorno del ánimo con episodio depresivo, por el que habían estado en tratamiento psicoterapéutico previamente. Las entrevistas fueron analizadas desde un enfoque descriptivo-relacional, para reconocer las principales unidades temáticas referidas por los participantes y luego identificar sus relaciones y significados subyacentes. Resultados: El significado de la experiencia de la depresión se reveló como un proceso denominado "Construcción subjetiva de la experiencia de la depresión", caracterizado por tres momentos. (1) "La experiencia de un malestar sin nombre"; (2) "Anclaje de la experiencia del paciente en la palabra depresión"; (3) "Apropiación de la experiencia de la depresión". Conclusión: la experiencia de la depresión se presenta como un proceso dinámico de interacción entre el malestar subjetivo y la construcción de significados asociados a él; transitando de una experiencia desconcertante observada en el cuerpo, el ánimo y/o lo conductual, hacia una experiencia elaborable discursivamente, a través de una referencia semántica (depresión) que integra los significados y origina un proceso de apropiación de lo que implica para cada individuo tener depresión o estar deprimido.

Abstract Objective: To understand the dynamics by which patients signify their depressive experience. Methodology: A qualitative methodology was used, based on the Grounded Theory. Semi-structured interviews were conducted with 10 patients diagnosed with a mood disorder with depressive episode, who had been in a psychotherapy treatment about it. The interviews were analyzed from a descriptive-relational approach, recognizing the main thematic units referred by the participants, and then identifying their relationships and underlying meanings. Results: The meaning of "depression" experience was revealed as a process, named "subjective construction of depression experience", characterized by three moments: (1) "The experience of an unnamed discomfort"; (2) "Anchoring the patient's experience in the word depression"; (3) "Appropriation of depression experience". Conclusion: The depressive experience is presented as a dynamic process of interaction between subjective discomfort and the construction of meanings associated to it. Transitioning from a disconcerting experience observed on their body, mood, and/or their behaviour, to something available to be elaborated discursively, through a semantic reference (depression) that integrates them, originates a process of appropriation about what it implies for each individual to be depressed or have depression.

RESUMEN

CONTEXT: Despite a growing interest in service-user involvement in mental health services, the interaction between health institutions and local groups is only beginning to receive attention, particularly in global south settings. OBJECTIVE: Looking at a participatory initiative in Chile, this study explores how, under unfavourable administrative conditions, health organizations approach and work with communities. METHODS: We interviewed policy-makers (5), local professionals (10), service users and community representatives (6) linked to a concrete participatory initiative. Participant observation in relevant meetings helped to enrich the interpretations. Thematic analysis was applied to interview transcripts and field notes. FINDINGS: The findings present a sequence of actions starting with the creation of a network of community-based groups. A set of problems ensued, related to the group's diversity, internal representation, decision-making and funding processes. In response, processionals implemented simultaneously bureaucratic and democratic adjustments, developing a vision of community that ignored the particularities-including the motivations-of local groups. DISCUSSION AND CONCLUSION: Based on these findings, we argue that participatory initiatives should be studied as on-going achievements shaped by broad policy orientations and local configurations of interest. In the process, they produce ad hoc forms of knowledge and visions of community that provide orientation to the agents involved.

Asunto(s)

RESUMEN

The article, "Beyond Participation: Politics, Incommensurability and the Emergence of Mental Health Service Users' Activism in Chile", written by Cristian R. Montenegro, was originally published electronically on the publisher's internet portal (currently SpringerLink) on April 24, 2018 without open access.

RESUMEN

Although the organisation of mental health service users and ex-users in Latin America is a recent and under-researched phenomenon, global calls for their involvement in policy have penetrated national agendas, shaping definitions and expectations about their role in mental health systems. In this context, how such groups react to these expectations and define their own goals, strategies and partnerships can reveal the specificity of the "user movement" in Chile and Latin America. This study draws on Jacques Rancière's theorisation of "police order" and "politics" to understand the emergence of users' collective identity and activism, highlighting the role of practices of disengagement and rejection. It is based on interviews and participant observation with a collective of users, ex-users and professionals in Chile. The findings show how the group's aims and self-understandings evolved through hesitations and reflexive engagements with the legal system, the mental health system, and wider society. The notion of a "politics of incommensurability" is proposed to thread together a reflexive rejection of external expectations and definitions and the development of a sense of being "outside" of the intelligibility of the mental health system and its frameworks of observation and proximity. This incommensurability problematises a technical definition of users' presence and influence and the generalisation of abstract parameters of engagement, calling for approaches that address how these groups constitute themselves meaningfully in specific situations.

Asunto(s)