Racial and ethnic disparities in mental health remain a contentious topic of political initiatives, researchers, theorists and activists. There have been many initiatives by successive governments in the United Kingdom, to improve race equality in mental health. These include Delivering Race Equality in Mental Health (Department of Health 2005) (hereinafter, “DRE“), and the current Patient and Carers Race Equality Framework (PCREF) (NHS England 2023), which began to be rolled out in 2023.
However, overall patterns in tangible action remain intransigent. Local services produce reports on what needs to be done, many of which gather dust on the shelf. Studies and academic papers often set out to identify what causes higher uptake of services than average for many racialised groups. However, as Barnet et al (2019) identified in their meta-analysis, there is little primary research into the underlying causation of disparity.
Citation bias results in newer academic research papers citing previous papers and the hypotheses about causation as if they were fact. Consequently, while there is much known about the dominant narratives around causes for racial disparities, (primarily the higher than average rates of involuntary admissions) critical and iterative exploration based on a scientific examination of causality is limited. There is also a dearth of patient representation and co-production to explain such causality from the perspective of people most affected by it.
The term ‘racial disparities’ can also homogenise, and potentially obscure the severity of the variations between population groups. To put this into perspective, rates of diagnosis for psychosis vary widely across demographics: 3.2% for black men compared with 0.3% for white men, and 1.3% for Asian men (McManus et al. 2016).
This recent paper by Knight and Jarvis (2024) contributes to the knowledge in this arena with a scoping review of literature with definite parameters: focusing specifically on psychosis, and the experiences of English-speaking Afro Caribbean people in North America and the United Kingdom.
Rates of psychosis diagnosis vary widely across demographics, e.g. 3.2% for Black men, compared to 0.3% for white men and 1.3% for Asian men (McManus et al, 2016).
Methods
The research focused on attitudes and beliefs, giving a voice to how the target research group consider their experience of psychosis, so that services can better adapt to meet their needs. As this was not an explicitly comparative study, it is not possible to empirically identify points of divergence with the majority white populations. However by reference to large-scale population studies such as Aetiology and Ethnicity in Schizophrenia and Other Psychoses (AESOP) in the UK, the European Network of National Schizophrenia Networks Studying Gene–Environment Interactions (EU-GEI) across Europe and the National Survey of American Life (NSAL) in America – the paper identifies that mental healthcare services are poorly designed to serve Afro Carribean populations in North America and the UK.
Of note, the research identified notable challenges faced by this population in accessing and utilising services for mental wellbeing:
- reduced familial caregiver involvement,
- associated stigma, and distrust of services,
- greater societal exposure to poverty and social disadvantages,
- societal discrimination, threat, hostility and violence,
- discrimination in access to all healthcare,
- diagnostic error due to cultural bias in mental healthcare,
- in more recent studies, explicit links to racism in healthcare.
To gain a deeper understanding of the challenges faced by this population, the researchers conducted a focused keyword search of Medline, PsychINFO and Scopus databases to identify 296 articles spanning English-speaking Afro-Caribbean populations, of a variety of research methodologies. A further grey literature search was conducted, to “identify and integrate Afro-Caribbean attitudes and beliefs that may not be highlighted in mainstream sources or found through traditional peer-reviewed research”.
Articles exclusively evaluating Haitians (French-Creole), Dominicans (Spanish), or non-Afro Carribean cultural or language groups were excluded. Only English-language full-text articles were included, yielding a final evidence base of 220 studies.
The researchers proceeded with a thematic analysis, including sub-thematic analysis, coding the information in each article in relation to emergent attitudes and views of English speaking Afro Caribbean people in North America and the United Kingdom.
Results
Five themes were identified through this thematic analysis:
- Colonisation: This theme encompassed not only historical, but current geographically located administrations. It encapsulated the ways in which the legacies of colonialism present today, such as ideas about cultural superiority and inferiority, and material inequalities arising from the consequences of colonial exploitation.
- Adaptation: This theme cited the particular challenges of migrants assimilating into a new culture and society, in aspects such as language, cultural norms, foods, values and even climate. Thematic characteristics of the new societies included the experience of being unwelcome in an unwelcoming environment, and there was exploration of the personal challenges of immersion in new societies, to the point that original values and cultural norms were overtaken. A common analogy utilised in the paper, was the sense of being ‘black on the outside (i.e. racialised as black) but effectively being white’, in terms of behaviours and values.
- Cultural mistrust: This theme explored the ongoing social mistrust linked to specific historical breaches of trust in the US, with one such example being the unethical Tuskegee experiments where African American men were made to continue being hosts to syphilis despite treatment options being available, so that ‘researchers’ could see the course of the illness.
- Collectivism: This theme covered the cultural norms of the study communities, to gather and operate within the context of group identities. Afro Caribbean societies were found to be more collectivist, however the experience of migration was found to disrupt this collective identity. The paper cites specific examples of the consequences of disruptions, which may even present at the intra-familial level, e.g. to mother and grandmother relationships. Larger sociocultural value disruption was also captured, such as the experience of ties to ancestors being disrupted, that can be misunderstood in clinical assessment settings.
- Religion and Spirituality: This theme spoke to powerful cultural values and traditions. A wide scope of belief systems were cited, included Christian religion, Rastafarian beliefs, and engagement with African heritage beliefs and practices such as Obeah and voodoo.
The authors also specifically outlined their own positionality, as belonging to racialised communities.
Each theme is discussed as it relates to potential ways in which they influence the relationships of individuals with clinical staff and also with the diagnostic process of psychosis. Verbatim experiences recorded add a rich textual base of lived-experience evidence, to contextualise presentations which may be medically and diagnostically framed as psychosis: from participants experiencing anything from, “nerves” as an emotional state, to religious and supernatural ideas such as being “possessed” or “cursed“.
The discussion section makes links between the views and attitudes to psychosis, of the study group (i.e. English speaking Afro Caribbean people in North America and the United Kingdom) and possible developments in service approaches and design. These include seeking a greater recognition of the impact of historic colonialism and its legacy in society and psychiatry, and the need to decolonise and increase the plurality of understandings about psychosis, including Caribbean sociocultural and collectivist influences on the individual experience.
The authors further identify a need for professionals in mental health services to avoid invalidating experiences of racism described by intended service users from marginalised communities, and to increase cultural understanding by using cultural formulations and paying attention to language and meanings.
Afro Caribbean communities are more collectivist, but the experience of migration was found to disrupt this collective identity.
Conclusions
The authors recognised the heterogeneity between and within Caribbean societies in the Northern Hemisphere, while highlighting the impacts of shared experience of colonialism and social discrimination and its consequences at large, and within populations seeking mental health services.
The presentations of English speaking Afro Caribbean people in North America and the United Kingdom need to be seen in the context of historic and current experiences of discrimination. The authors were explicit in stating that sometimes the experiences of the study group were not solely omissions in practice, which are themselves problematic, but also the discrimination in society that shows up in individual practice, as well as within the models and frameworks employed in the delivery of treatment and care.
The authors conclude: “Historical, sociocultural, and geopolitical themes characterize the English Afro-Caribbean experience of psychosis and inform culturally adapted clinical interventions for patients with psychosis and their families.”
Strengths and limitations
This scoping review provided a focused insight into the beliefs and attitudes of the research subjects, enabling a specific thematic analysis of individuals’ experiences, and examination of the misalignments between these and the underlying assumptions and approaches in psychiatry and psychology. Frontline staff are often interested in the ‘how to’ aspects of these topics and though the authors do not offer a toolkit approach, the paper provides concrete examples for improving practice.
The authors excellently avoided presenting the research as being entirely about cultural understanding. Individual racism and discrimination as well as systemic racism are spotlighted. However, a limitation in the study is the absence of a comparator group, making it difficult to identify whether the themes that emerged were causally linked with racialised inequalities.
Further, the paper refers to misdiagnosis as a possible consequence of the divergence of attitudes, beliefs and perspectives of services and service users. It may have been helpful for the authors to highlight the domains where impact might be achieved, for example in experience of using services and also designing culturally sensitive and specific outcome measures, to contextualise the rates of psychosis diagnosis.
The paper made some reference to intergenerational trauma, without explicitly naming this or providing its theoretical framing. The work of Carter and Pieterse (2020) on what they term ‘race-based traumatic stress’ states that an understanding of the role of intergenerational trauma in race based traumatic stress is essential. Given the emergence of the theme of collectivism and themes of destruction in intra-familial relationships within this paper, the authors may have benefited from using the intergeneration trauma framework for thematic analysis. Considering the greater awareness and inclusion of trauma-informed approaches in psychiatry at large, this may be another helpful lens for designing future inclusive clinical practice.
This is not just about cultural differences. The authors may have benefited from using the intergeneration trauma framework for thematic analysis.
Implications for practice
This is an innovative study that makes clear that a failure to take account of the wider context of racialised lives is not benign, but rather causes harm through invalidation, at the practice level.
Critical texts such as Suman Fernando’s Institutional Racism in Psychiatry and Clinical Psychology (2017) provide one perspective of re-examination of the ways in which evolution of disciplines, particularly those with a coercive and liberty-limiting element in ‘care’, replicate racism. Knight and Jarvis (2024) add to this message, that being non-discriminatory whist utilising processes that lead to racist outcomes is not a neutral end-outcome.
This paper reflects that despite a variety of individual experiences represented in research into mental disorders, there still exists a challenge to uproot established approaches, where there is a partial if impactful evidence base of effectiveness. It is also worth noting that the experience of ‘professionalisation’ itself, as practitioners become experts in a field, leads to a personal investment and identitarian legitimisation of a framework or model with continued practice, which may undermine individuals’ ability to be self-critical, as any attempt to critique or dismantle can feel personal.
At the practice level then, cultural humility and working effectively cross-culturally is important. Effective practice therefore requires some form of collective action, to address and alter systemic discrimination within professions that are ultimately about serving vulnerable communities, and to be prepared to co-produce any change with current and intended service users.
Racial discrimination must be tackled in the development and delivery of mental health services.
Statement of Interests
None.
Links
Primary paper
Knight, S., Yang, X.Q., & Jarvis, G.E. (2024). “Dem sey mi mad”: A scoping review of the attitudes and beliefs of English-speaking Afro-Caribbeans about psychosis. Frontiers in Psychiatry, 15, 1385525. https://doi.org/10.3389/fpsyt.2024.1385525
Other references
Aetiology and Ethnicity in Schizophrenia and Other Psychoses (AESOP) Study, United Kingdom
Barnett P, Mackay E, Matthews H, Gate R, Greenwood H, Ariyo K, Bhui K, Halvorsrud K, Pilling S, Smith S. (2019) Ethnic variations in compulsory detention under the Mental Health Act: a systematic review and meta-analysis of international data. Lancet Psychiatry. 2019 Apr;6(4):305-317. Open Access Published: March 04, 2019 DOI: https://doi.org/10.1016/S2215-0366(19)30027-6
Carter, R & Pieterse, A. (2020) Measuring the Effects of Racism: Guidelines for the Assessment and Treatment of Race-Based Traumatic Stress Injury. New York. Columbia University Press
Department of Health (2005) Delivering Race Equality in Mental Health Care. Crown: London
European Network of National Schizophrenia Networks Studying Gene–Environment Interactions (EU-GEI), Europe
Fernando, S. (2017) Institutional Racism in Psychiatry and Clinical Psychology. London: Palgrave.
McManus S, Bebbington P, Jenkins R, Brugha T. (eds.) (2016) Mental health and wellbeing in England: Adult Psychiatric Morbidity Survey 2014. Leeds: NHS Digital.
NHS England (2023) Patient and Career Race Equality Framework https://www.england.nhs.uk/long-read/patient-and-carer-race-equality-framework/ (last accessed 3 February 2025)
