From lived experience to expert caregiver – new approaches to care in psychiatry

A new project entitled "Situated Care: Subjectivity, Knowledge, and Labor" recently began at the MPI for Social Anthropology, funded by the German Research Foundation's Emmy Noether Program. We spoke with Lauren Cubellis, the head of the research group. We wanted to know what her project is about and what brought her to Halle to work at the MPI.

Lauren, your project deals with new forms of care in psychiatry. That's a rather unusual topic for an anthropologist. How did you come up with it?
In 2013, I was part of a research group in New York City that was looking at alternative forms of care for people experiencing psychiatric crisis. As part of this work, I came into contact with both the psychiatric healthcare system and clients, and understood that mental health care is also fundamentally a cultural process. My work has continued at this intersection for many years now.

What experiences did you have?
I think I learned to listen carefully to people who are going through these kinds of challenges, and to develop an understanding of why many of those affected find traditional treatment ineffective or sometimes even threatening. Or, in some cases, even just getting access to treatment can be extremely difficult. 

Why is that?
There is a huge power imbalance between service users and medical professionals within the traditional psychiatric system. Treatment often involves a profound loss of control, privacy, dignity, and respect, and in many cases, can lead to long stays in closed facilities. In New York City, the system is very fractured. The project that I worked on in 2013 was designed to bridge some of these gaps, and to offer alternative forms of care outside of hospitals.

What was new about this program?
Among other things, the engagement with service users focused less on the administration of medication and more on reconnecting clients with their social networks and thinking towards a more person-centered and long-term recovery plan. Some of the reform ideas I am currently researching were already being tested in practice here: for example, a crisis respite center was set up where people in crisis situations could be supported by others who had had similar experiences. Today, these caregivers are referred to as Genesungsbegleiter/in, in the German, or sometimes as peers, peer support workers, or peer professionals.

What exactly do peer support workers do?
Peer support work can take place formally and informally. In formal care settings, peers are employees in clinic or community-based institutions who bring their own experiences with mental health crises and recovery into the care work. Because of their familiarity with such experiences, and the training they go through, they are able to establish a unique connection with clients in crisis situations and strive to communicate with them on an equal footing. In this way, they complement the work of medical professionals and many times also challenge them, and thus they are part of a process that questions and tries to improve traditional forms of biomedical care. We know from established research in healthcare that incorporating peer support can be difficult for institutions to manage, but, at the same time, it is very beneficial for service users.

Are peer support workers permanently employed or do they work on a voluntary basis?
The idea is that professionalizing the job description for peer professionals will open up new opportunities for them to integrate into the care work force and contribute to the reform of psychiatric systems. And indeed, in recent years, new jobs for this role have been created in many psychiatric institutions. That is why part of my research project is to investigate how the collaboration between peers and medical professionals works in practice and how this cooperation is developing. We are also interested in the places peers might work outside of traditional institutions, or, in other cases, why people who have done this training may ultimately choose not to work in formal employment. 

Can anyone with personal experience as a psychiatric service user become a peer support worker?
This is actually a very important debate in this field. Personal experience is a necessary prerequisite, but personal experiences can vary greatly. And personal experience does not automatically mean that someone is well suited to, or wants to, take on a professional caregiving role. Those who pursue this as a profession undergo a comprehensive training process that transforms lived experience into professional expertise. This means learning to use one’s personal stories and life history in a very particular way. I am very interested in what this learning process is like, and what happens to this knowledge when it is engaged as a workplace skill. 

How do you intend to proceed with your research? Do you have any preferred methods?
Participant observation is the most important component of the methodology, alongside more traditional and open interviews. The team will also create space for reflection on our own processes of knowledge production, which is an essential element of this research.

Why are you focusing on German-speaking countries?
On the one hand, because the formalization of training for peer support workers is uniquely well developed here. The possibilities for comparison, and for identifying different social and culture factors that shape the practice are quite extensive. And on the other hand, we are also interested because psychiatry has a dark and complex history here. The abuses of the T4 program, and the developments in psychiatric science during the National Socialist period, are still prominent in discussions of contemporary psychiatric practice. Reflecting on this history informs important conversations today about power relations and risk of harm in psychiatric treatment. This makes it all the more important to understand the significance of peer support work not only as a new professional role, but also as a political intervention in which people are engaged in exposing and reconfiguring these power structures.

You decided to come to our MPI with your project. What was the deciding factor?
I was looking for an institute where I could work with colleagues conducting innovative research across the discipline and who are committed to asking critical questions about both theory and method. Julia Vorhölter and others have set up a strong working culture around medical and psychological anthropology as well. She and I have been in contact for quite some time, and she has always described the working atmosphere at the MPI for Social Anthropology as very positive. The decision to come to Halle was not a difficult one for me.

How many years is your project scheduled to run?
The German Research Foundation funds Emmy Noether projects for six years. So we are really just getting started. There is a lot to do!

And what are your next steps?
I have hired two really exciting team members, a postdoctoral researcher and a PhD candidate, who will start in June. I just returned from a preliminary fieldwork trip this February, where I met so many thoughtful and engaged people working in this area. We will make a similar trip as a team this coming fall.