https://research.birmingham.ac.uk/portal/files/54809571/Newbigging_Ridley_2018_Epistemic_struggles.pdf

Epistemic struggles: The role of advocacy in promoting epistemic justice and rights in mental health.

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Culture and meaning in health service research: a practical field guide

\n Participatory research, or the practice of involving ‘peers’ with lived experience, has become popular in social work. Peer engagement is lauded for: ‘democratising’ the research process; providing ‘capacity building’ and facilitating opportunities to co-produce knowledge. Yet, these claims are rarely evaluated by empirical investigations into the socio-material work conditions of peer researchers. Here we present findings of a study that examined the experiences of peer researchers, focusing on payment inequities and social workers’ roles in advocating for economic justice. Together with peer research assistants, we conducted a participatory constructivist grounded theory study, interviewing peers (total n = 34) who were compensated to work on studies focused on the following: racialised communities, communities of people who use drugs, consumer/psychiatric survivor/ex-patient and mad communities and trans/non-binary communities. Our findings highlight divergent compensation practices in peer research work. Whilst some peers were satisfied with their treatment on research teams and payment received, others discussed challenges associated with precarious short-term casual work and managing formal income alongside state social assistance such as disability support. We conclude that in some cases, the peer role is characterised by precarious working conditions which compound rather than challenge injustice within the research enterprise, and we discuss implications for social work.

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The Political Economy of Peer Research: Mapping the Possibilities and Precarities of Paying People for Lived Experience

Although rhetoric abounds about the importance of patient-, person- and relationship-centered approaches to health care, little is known about how to address the problem of dehumanization through medical and health professions education. One promising but under-theorized strategy is to co-produce education in collaboration with health service users. To this end, we co-produced a longitudinal course in psychiatry that paired people with lived experience of mental health challenges as advisors to fourth-year psychiatry residents at the University of Toronto. The goal of this study was to examine this novel, relationship-based course in order to understand co-produced health professions education more broadly. Using qualitative interviews with residents and advisors after the first iteration of the course, we explored how participants made meaning of the course and of what learning, if any, occurred, for whom and how. We found that the anthropological theory of liminality allowed us to understand participants’ complex experiences and illuminated how this type of pedagogy may work to achieve its effects. Liminality also helped us understand why some participants resisted the course, and how we could more carefully think about co-produced, humanistic education and transformative learning.

“It was great to break down the walls between patient and provider”: liminality in a co-produced advisory course for psychiatry residents

In its first 25 years, the journal Advances in Health Sciences Education (AHSE) has become known for pushing boundaries to expand notions of what is recognized as relevant and legitimate in the study of health professions education (HPE). In this special edition, the AHSE community celebrates this success, and honours the legacy of its founding Editor-in-Chief, Geoff Norman. We applaud AHSE for using this occasion to consider ways that the field has benefited from a broad range of theories, methodologies, and disciplinary or interdisciplinary perspectives. True to the spirit of the journal, this celebration invites scholarly questioning of how to further advance HPE. As the world moves beyond traditional approaches to teaching and learning in HPE to more international and interconnected approaches (Harden 2006), advances to scholarship in our field must include closer attention to the voices and contexts that are absent or under-represented. Questions that shine light on structural barriers that silence certain voices and/or contexts are essential to consider if the aims of HPE are to be international rather than Euroamerican dominated. The AHSE community of scholars is well positioned to share ideas for levelling the playing field in global HPE research and find ways to have more inclusive scholarly conversations.

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Passing the microphone: broadening perspectives by amplifying underrepresented voices.

Co-production involves service providers and service users collaborating to design and deliver services together and is gaining attention as a means to improve provision of care. Aiming to extend this model to an educational context, the authors assembled a diverse group to develop co-produced education for psychiatry residents and medical students at the University of Toronto over several years. The authors describe the dynamics involved in co-producing psychiatric education as experienced in their work. A collaborative autobiographical case study approach provides a snapshot of the collective experiences of working to write a manuscript about paying service users for their contributions to co-produced education. Data were collected from two in-person meetings, personal communications, emails, and online comments to capture the fullest possible range of perspectives from the group about payment. The juxtaposition of the vision for an inclusive process against the budgetary constraints that the authors faced led them to reflect deeply on the many meanings of paying service user educators for their contributions to academic initiatives. These reflections revealed that payment had implications at personal, organizational, and social levels. Paying mental health service user educators for their contributions is an ethical imperative for the authors. However, unless payment is accompanied by other forms of demonstrating respect, it aligns with organizational structures and practices, and it is connected to a larger goal of achieving social justice, the role of service users as legitimate knowers and educators and ultimately their impact on learners will be limited.

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Co-producing Psychiatric Education with Service User Educators: a Collective Autobiographical Case Study of the Meaning, Ethics, and Importance of Payment.

The benefits of involving patients as partners in research across diverse medical and psychiatric settings are well established in the literature. However, researchers continue to struggle to access, engage and retain participants from hard-to-reach populations. The main objective of this study was to co-create pet therapy activities with patients admitted for serious and complex mental illness to a large urban mental health and addiction hospital. Informed by the principles of participatory action research methodology, we conducted focus group discussions with 38 inpatients in seven different clinical units. An experienced volunteer handler and a certified therapy dog helped facilitate our discussions. Participating researchers, recreational therapists, volunteer handlers and our participants all reported that the presence of a certified therapy dog at each of our discussions was integral to their success. Certified therapy dogs increased the motivation to participate in our study, helped to build rapport with participants and created connections in our discussions that enriched our data. To our knowledge our study is the first to demonstrate the value of using a therapy dog as a participatory research tool in a healthcare setting. The authors believe that therapy dogs are a low-tech intervention that could be used effectively to engage hard-to-reach populations in research about their treatment and care in a diverse range of medical settings. These findings support the creation of a pilot study to test the value of including therapy dogs in patient-centered research with vulnerable and hard-to-reach populations.

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Csilla Kalocsai

Papers

Co-producing Psychiatric Education with Service User Educators: a Collective Autobiographical Case Study of the Meaning, Ethics, and Importance of Payment.

Increasing participation in research with therapy dogs: A qualitative study at a large urban mental health and addiction hospital.

The perils of medico-legal advocacy in ICU conflicts at the end of life: A qualitative study of what happens when advocacy and best interests collide.