Contribution short abstract:

This paper contributes insights from a collaborative ethnography between anthropologists and clinicians researching an innovation in NHS psychiatric crisis care named ‘Peer-supported Open Dialogue’. It speaks to the ethics of navigating asymmetrical relationships in healthcare and academic contexts.

Contribution long abstract:

In 2019, the UK’s NHS implemented the world’s largest randomised controlled trial of ‘Peer-supported Open Dialogue’ (POD), a Finnish innovation from the 1980s advocating a social network approach to psychiatric treatment. An ESRC-funded anthropological study (APOD) launched simultaneously as independent but complementary to the RCT, comprising clinicians who trained as ethnographers and anthropologists who trained as Open Dialogue practitioners, of which I am one. We spent three years in the ‘field’ across two RCT sites/community mental health teams, delivering and researching POD. We also incorporated dialogical principles into our collaborative analytical and writing processes.

Improvising a collaborative methodology enabled multi-sited research and the recording of experiences from different subject and disciplinary positions, although this demanded the navigation of multiple sets of relationships between researchers, supervisors, co-practitioners, and patients.

Being the only PhD student and BAME member of the APOD research team marked me as different from the perspective of NHS interlocuters, based on preconceived racialised and gendered roles; perhaps it was inevitable that I aligned with NHS clinicians who were also positioned at the lower ends of organisational hierarchy. How do such alliances induce possibilities and challenges in collaboration?

Significantly, how did these asymmetries translate into therapeutic and research relationships with patients? Being a former patient (peer) myself might counteract ethical quandaries in these relationships to some extent, but what of their continuity? As an NHS practitioner, circumventing boundaries is frowned upon but as an anthropologist, surely it is unethical to abandon patients after using them for ‘data’?

Contribution short abstract:

The BUR-EB project developed a collaborative and multi-situated ethnographic process with patients of Epidermolysis bullosa, a rare disease, and their organizations. We will reflect on the meaning of careful research in our project and address the challenges of collaboration that we encountered.

Contribution long abstract:

Epidermolysis bullosa is a rare disease characterized by the fragility of the skin, leading to varying levels of severity. This condition encompasses four main types and over 30 subtypes, highlighting its complexity. There is no cure available and scientific knowledge is limited, as in most rare diseases. The burden of care for many patients and their families can be immense, particularly evident in the daily dressing changes, which may involve up to 5 hours a day.

In the BUR-EB project, a collaboration of seven EU countries, we have designed a methodology that incorporates patient associations as partners in research (Rabeharisoa and Callon). We developed a collaborative and multi-situated ethnographic process, which weaves a network of supportive relationships to facilitate careful research (Law and Lin) with a flexible and staggered participation strategy that takes into account the burdens and needs of patients and their families, but also patient organizations, clinicians and researchers. The project is based on the concept of ecology of knowledge as a learning device (Casado) and proposes to generate knowledge that improves self-care and health care for the disease. It involves mapping both biomedical/clinical and social knowledge through scientific literature, patient organizations and with groups of patients. The results will be a qualitative systematic review, disease trajectory maps and the development of care guidelines on the topics that patients have prioritized.

In this paper, we will explore the meaning of careful research in the BUR-EB project and address the challenges of collaboration that we encountered.

Contribution short abstract:

Peer support in mental health is a vital case study in participatory collaborative research. As peer movements offer reparative alternatives to institutional psychiatric knowledge, the inclusion of peer researchers is imperative. Diffractive workshopping is a means for navigating such complexities.

Contribution long abstract:

Participatory collaborative research argues that individuals who have historically been the subjects of research should be actively included as producers of research themselves. Peer support in mental health is a vital case study in this context. Peer professionals are individuals with lived experiences as mental health service users who have been trained to support others experiencing psychiatric crises. Peer support offers a reparative alternative to institutional psychiatric knowledge regimes, making the inclusion of peer researchers a methodological imperative. While the inclusion of peer researchers generates diverse multi-professional teams, it also surfaces conflicts regarding how knowledge is produced, the hierarchies embedded in research institutions and protocols, and how the expectations placed on peer researchers risk universalising “lived experience” as a token category. To this roundtable, I offer my firsthand experience as an anthropologist in these spaces of methodological and political transformation over the last twelve years, highlight the challenges I have encountered in developing proposals for participatory collaborative research, and outline a methodological framework for collaborative knowledge production grounded in the work of feminist scholars of science and society. This framework draws on the scholarship of Karen Barad and Isabelle Stengers to develop “diffractive workshopping” as a “slow science” that allows multi-professional research teams to not just approach encounters in the field from a collaborative perspective, but to think divergent positionalities through each other in deliberate and explicit ways that take seriously the dynamics and histories of research team members as factors in the production of knowledge.

Contribution short abstract:

Drawing on a participatory film project with a Williche Community (2010-2012) and an interinstitutional multimodal research on food and health with a Rural School (2022-2024) I discuss how collaboration in medical anthropology is complicated by coexisting authoritative and emancipatory moments.

Contribution long abstract:

Collaborative, participative, action-research, feminist and critical methodologies have been central to my research on health, care and life over the last 15 years in the South of Chile. Through facing the many challenges of collaborative projects within different healthcare initiatives, with different institutions and people, I have moved from a pretty naïve to a more nuanced engagement with collaboration as a method, as an ideal and as a real-life practice.

In this paper I aim to discuss some of the pitfalls of collaboration in medical anthropology drawing on two ethnographical projects that took place in the Island of Chiloé in separate times and places with different groups of people: A participatory film project as part of an ethnography of a Complementary Health Initiative with a Williche Community (2010-2012) and an interinstitutional multimodal research project on food and health with a Rural School (2022-2024). In the first one, I was myself a doctoral student, in the second one I am part of a team of more or less established researchers and ECRs. Being quite different in its methodological proposal and institutional constrictions, both projects addressed health-related issues intending to counter epistemic and social inequality by including diverse forms of knowledge production and experimenting with ways of doing health-research as a caring and loving practice. In both cases collaboration had to be negotiated and transformed in the research process. It ended up including at times pretty vertical or authoritative practices along with some horizontal and emancipatory moments.

Contribution short abstract:

This roundtable contribution discusses the possibilities and limits of collaborative ethnography, based on a project about the lives and labors of healthcare workers in a hospital intensive care unit (ICU) in the US during Covid-19.

Contribution long abstract:

This roundtable contribution discusses the possibilities and limits of collaborative ethnography, based on a project about the lives and labors of healthcare workers in a hospital intensive care unit (ICU) in the US during Covid-19.

The project's collaborative ethnographers included a medical anthropologist and three ICU physicians, each bound by a peculiar and productive dilemma: What does it mean when the trained ethnographer cannot enter the space of ethnographic observation? Due to hospital visitation restrictions during the pandemic, the medical anthropologist always found himself "on the other side of the screen" -- that is, put in relation to his collaborators via Zoom, but rarely in person. Moreover, the site of research -- the hospital ICU -- was off-limits to someone deeply committed to up-close hospital ethnography.

What does it mean to remove close observation from one's ethnographic habits, and what implications does this have for collaborative medical anthropological research in clinical spaces and beyond? The presentation will reflect on this question in light of project insights, as well as emergent conversations in medical anthropology and the anthropology of science about the power relations inherent to collaborative research work.

Contribution short abstract:

This multimodal article shows how my research partner Olof and I "cripped" collaboration by making the science-fiction film “O" together. Moving away from the ideal of inclusion, this project made us arrive at a more relational and interdependent understanding of collaboration and of access.

Contribution long abstract:

Inclusive participatory approaches in disability studies strive to make participants with mild intellectual disabilities (MID) co-researchers. However, academic standards of knowledge production and the demand for specific cognitive and linguistic skills can complicate collaboration. I argue that collaboration with people with disabilities is not about efforts of inclusion, but instead, it is our methodologies that need to be “cripped.” This means moving away from the ideal of inclusion, toward a more interdependent and relational understanding of access and collaboration. This multimodal article shows how my research partner Olof and I explored this way of working together by describing the coproduction of the science-fiction film “O.”

Contribution short abstract:

This paper aims to problematize community care, resulting in Based on 10 narrative productions carried out in 2020-2021, the research team views community care as a collective element, defining it as actions and practices that allow people to exist and organize collectively for a political purpose.

Contribution long abstract:

The concept of care has been widely used in gender studies, gaining significance during the latest feminist wave. It has led to academic, activist, community, and public policy developments, creating a contested field within the Latin American feminist movement. The ongoing challenge is to precisely define what we mean by care. Fisher and Tronto's (1990) definition resonates, portraying care as everything we do to sustain, perpetuate, and mend our world for optimal living. This includes three dimensions: affects and affectation, ethical and political considerations, and material practices.

We made 10 narrative productions (Galaz and Álvarez, 2020) in co-authorship with residents of Independencia, Santiago de Chile to problematize the idea of community care between 2020-2021.

These narratives serve as comprehensive accounts of affections and emotions, intertwined with critical and political stances on the subject. They underscore the pivotal role of women as primary advocates for community care, engaging in diverse care actions across the territory from spaces recognized as domestic and home.

This approach involved situating care within the reflective frameworks of the residents. Consequently, the distinction between the domestic/family and the community began to emerge as interconnected dimensions of care, encompassing various areas, including all community and self-managed practices of survival, organization, and political celebration. We reflect in this paper on community care as a collective element, defining it as actions and practices that allow people to exist and organize collectively with a political purpose.