Putting ethnic inequalities in severe mental illness centre stage

The Synergi Collaborative Centre’s journey started in February 2017. Our focus is on generating and curating evidence around the narratives of ethnic minority people with severe mental illness while highlighting ethnic inequalities in risk and experiences of treatment, and the impact of racism and multiple disadvantage.

Our motivation was, and is, the over-representation of ethnic minority people with severe mental illness in psychiatric institutions, and the coercive, harsh (rather than therapeutic) forms of treatment they are exposed to. A picture that hasn’t changed in 50 years.

To help transform this unsettling picture, Synergi champions systems change, new science and creative inclusion. Alongside producing new science – we have had six research papers published in leading journals in the past two years, and are committed to releasing informative briefing papers to fill the knowledge gap – Synergi is steadily building collaborative leadership networks.

One such network is Creative Spaces, which aims to develop systems change through inclusive and co-produced approaches to address detention rates and mental health inequalities experienced by people from ethnic minority communities. Dr Karen Newbigging, at the University of Birmingham, is a collaborator. 

Synergi has co-created solution-focused events with a range of stakeholders, from ethnic minority carers and people with lived experience, to local authorities, NHS trusts, commissioners and councillors, in London, Birmingham, Manchester and Leeds. The goal is to launch a national network by the summer, 2020.

It is essential that we influence policy, in the wake of a new government that downplays the impact of racism in society, as part of working towards systems change. The Synergi Participatory Action Research (PAR) project is one such vehicle. This study aims to inform policy development by addressing gaps in our understanding of the life histories of those who experience profound disadvantages.

A key motivator for the PAR project is the fact that despite ethnic inequalities in severe psychological distress and care experiences being well-documented, no national policies exist to address them.

By adopting a Participatory Action Research (PAR) approach, this study – the first of its kind – tackles inequalities by conducting research with the people who experience them so that those who are usually the objects of study become partners in research and policy decision-making. To that end, five ethnic minority researchers with lived experience of severe mental illness have been appointed as research associates to work with us on this project.

A qualitative depth interviewing method, the Biographical Narrative Interpretive Method (BNIM), developed by Tom Wengraf, is embedded in our PAR approach. Allowing for the emergence of rich narratives, BNIM creates a space where people can tell their story in their own way and therefore  is less constrained by the researcher’s view of what is relevant.

This approach is particularly significant for people who have experienced oppression and marginalisation; voices that are rarely heard in other than a filtered way. It promotes a linking of subjective experience with the context that shapes that experience, or inner world with the external world.

PAR’s explicit political and social justice agenda distinguishes it from other participatory approaches. With roots in Paulo Freire’s liberatory education, the ‘action’ in PAR refers to transforming current practices and power structures. Digital stories demonstrating central themes created from the BNIM interviews will be shown during focus groups with key stakeholders (experts by experience, carers, experts by profession and commissioners) to inform policy development and to improve mental health care for ethnic minority people.

It also critically engages with questions of power. While we cannot entirely eliminate power differentials in our team, not only those between academic and co-researcher, but also those that exist within any group (e.g. age, gender, class, sexuality, race, religion), PAR urges us to be upfront about them and encourage review, debate, disagreement and open dialogue.

We provided a five day intensive training programme, which included research principles, PAR, and BNIM. Tom Wengraf consulted with us to tailor the BNIM training for our team.

Consistent with PAR, we preserved plenty of time for dialogue and sharing personal experiences to illustrate theory and research. Using Freire’s ‘problem-posing’ approach allowed a naturalistic emergence of issues to come from the co-researchers’ lived experiences. This enabled expression of insights that those of us without lived experience could not possess.

Synergi is now actively recruiting for research participants for the PAR qualitative life story interviews in Manchester. As we continue to build a clear evidence base, we will work on forging solutions with ethnic minority carers and people with lived experience, commissioners, policymakers, communities, and funders, for necessary change to happen.

Viewpoint written by Joy Francis, co-director, Synergi Collaborative Centre, and Dr Maria Haarmans, Synergi’s Participatory Action Research project lead.  

To find out more about Synergi visit: synergicollaborativecentre.co.uk

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