Experience-based Investigation and Co-design of Psychosis Centred Integrated Care Services for Ethnically Diverse People with Multimorbidity (CoPICS): study protocol.

INTRODUCTION: Ethnic minorities (also called racialised groups) are more likely to experience severe mental illness (SMI). People with SMI are more likely to experience multimorbidity (MM), making psychosis among racialised groups more likely to lead to MM, poor outcomes, disability and premature mortality. METHODS AND ANALYSIS: This National Institute for Health and Care Research-funded study (151887) seeks to use innovative participatory methods including photovoice and biographical narrative interviews in urban and rural areas of England to assemble experience data. These data will be subjected to polytextual thematic analysis, and alongside pictures and captions, will inform an experienced-based co-design of interventions, the implementation of which will be evaluated. There will be an economic analysis and a process evaluation of the implementation. ETHICS AND DISSEMINATION: This programme of work has received ethical (IRAS 322421; Newcastle North Tyneside Research Ethics Committee 23/NE/0143) and sponsor approval. The findings will be disseminated in galleries showing the creative work, as lay and academic summaries and infographics; as practice briefings for practitioners, commissioners and policy makers; peer-reviewed publications. TRIAL REGISTRATION NUMBER: https://www.researchregistry.com/browse-the-registry%23home/registrationdetails/649c08111c037d0027b17d17/.

Using participatory action research methods to address epistemic injustice within mental health research and the mental health system.

In this paper, we describe a model of research practise that addresses epistemic injustice as a central objective, by valuing lived experience and addressing structural disadvantages. We set out here the processes we undertook, and the experiences of those involved in an attempt to transform research practise within a study known as Co-pact. We do not discuss the findings of the research. Rather, we wish to build expertise on how to address epistemic injustice and offer examples of participatory research processes, central values, and practical procedures that we implemented.

Fear, black people and mental illness: a vicious circle?

The relationships between black communities and the mental health (MH) services are fraught. Paradoxically, black communities receive the MH services they don't want, but not the ones they do or might want. Black people mistrust and often fear services, and staff are often wary of the black community, fearing criticism, and not knowing how to respond, are fearful of black people, in particular, young black men. The situation is fueled by prejudice, misunderstanding, misconceptions and sometimes racism. The present paper describes the findings of a study to explore the issues in greater depth. The study was premised on a belief that there are 'circles of fear' which lead to poorer treatment of black communities. A purposive sampling approach was used to seek out groups and individuals in whom the 'circles of fear' were likely to be evident. The findings suggest that there are fears which impact negatively on the interaction between black communities and MH services. Two major themes emerged in this study, i.e. the sources of fear and the consequences of fear. Sources of fear included perceptions of MH services, attitudes to mental illness and diagnosis, and experiences of hospital care. The impact of fear included limited trust, limited engagement and delayed help-seeking behaviour. The study concludes that these fears mar the interactions between these communities and MH services, affect help-seeking behaviour adversely, and lead to restrictive and punitive interventions. Progress will only be made in breaking the 'circles of fear' if there is a systematic change in the experience of black services users at each point in the care pathway.