Psychosis, Society and Ethnicity
Is there a relationship between the psychosis and ethnicity?
There is evidence that, in England, psychosis is more common among some ethnicities than others.
This evidence tells a sad and scary story. It brings together history, economics, society, and health. Today, October 10th, is World Mental Health Day. In many parts of the world, October is also Black History month. This is an opportunity to reflect on a story in which Black history and mental health overlap.
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Once every seven years around 8,000 people from across the country, from all walks of life, genders, ages, income levels, ethnicities, etc., answer a series of questions about their mental health. This is called the Adult Psychiatric Morbidity Survey (APMS).
The survey provides a relatively comprehensive picture of how common different mental health conditions are, and, for the more common conditions, which groups of people are more likely to experience them.
Deep in the survey’s most recent report is a statement about psychosis and ethnicity. Psychotic disorder “was associated with ethnic group, with rates found to be higher in black men (3.2%) than men from other ethnic groups.”
Personally, I was uncomfortable with this analysis. The comparison is based on a sample of just 138 Black men (see excel tables for chapter 5). This seems too small to accurately comment on the prevalence of a rare condition like psychosis.
There are around one million Black men in England. A back of the envelope calculation (or Google of ‘adequate sample size’) suggests a reasonable sample for such an estimate, with a 95% confidence interval covering a 3% margin of error, should be about ten times this size (suggesting that around 1,500 Black men should be interviewed to inform such an estimate). For comparison, the estimated prevalence among White men is based on a sample of 5,574 (for the rare conditions, responses are pooled across surveys to increase numbers).
I emailed some academics who specialise in this subject, expressing my concerns and asking for their advice. Their responses opened my eyes to relationships between ethnicity, society, mental health and mental health care that run deep and in many directions.
A better source of data
The statement, it turns out, is a consistent finding of academic studies spanning the last 60 years.
A relatively recent paper on the topic begins:
“[O]ne of the most consistent findings in the epidemiology of schizophrenia is the high incidence of the disorder among migrant and ethnic minority groups. The most striking and perhaps well-known example is that of the African-Caribbean population in the UK.”
This alone, however, should not give too much confidence. Academia has a long history of providing intellectual support to racist ideas. The important question is whether these findings are based on adequately designed epidemiological studies.
One of the better examples is the Aetiology and Ethnicity in Schizophrenia and Other Psychoses (AESOP) study, being conducted by researchers at Kings College London’s Department of Psychosis Studies.
This ongoing experiment works in the opposite way to the APMS. Instead of surveying the general population and looking for cases of psychosis, the researchers tried to identify every new case of psychosis within three geographic areas and a set time period and then compared these people to the rest of the population in those areas using census data. They also recruited a cohort of people from the same areas but without the experience of psychosis and are now following both groups to monitor outcomes.
Like the APMS, they found elevated rates of psychosis among Black Caribbean and Black African populations in England.
Still problems with the analysis
The benefit of the AESOP approach is that the estimates are based on far more cases of psychosis — hopefully ALL cases of psychosis within the time and geographic boundaries. But there are still problems.
What if you do not find every case?
What if you are better at finding cases among some ethnicities than others? There is evidence to suggest some ethnic groups are more likely to get picked up by their GP, others by the judicial system, and that others to just get diagnosed with depression instead. The pathways that people follow after experiences of psychosis vary a lot, and it is impossible to look everywhere.
What if you have incorrectly estimated the size or demographics of the underlying population? Researchers at the University of Leeds have published modelled population projections that suggest official estimates (pre 2021 census results) may underestimate ethnic minority populations in the UK. This, in turn, would inflate estimates of prevalence and incidence by ethnic minority.
Each of these issues are open doors through which biases may enter. While the AESOP evidence is much stronger than the APMS evidence, it is still far from perfect.
The researchers on the AESOP study acknowledge these problems but suggest that the difference in observed incidence is too large to be explained by such methodological biases alone. Their sentiment is similar to that of one of the academics I initially emailed — there are both measurement problems and real differences in prevalence and incidence of psychosis by ethnicity.
Possible causes
In 2019 researchers from Kings College London (including the lead on the AESOP study) and the University of the West Indies published a “socio-developmental model, that posits greater exposure to systemic social risks over the life course, particularly those involving threat, hostility and violence, to explain high rates of psychoses in some migrant and minority ethnic groups.”
They are pushing against the school of thought that says psychosis is a predominantly genetic disorder uniformly distributed throughout the world’s population. This view (uniform incidence), they argue, gets much of its weight from a ten country World Health Organisation study conducted in the 1960s that found no evidence of a difference in the incidence of schizophrenia across countries.
But the authors point to observed differences within countries, not only by ethnicity, but also between urban and rural areas and over time. They argue that this variation means psychosis must be more than just genetics. It is also worth noting that comparative studies have not found similarly elevated rates of psychosis in Caribbean countries such as Jamaica, Barbados or Trinidad and Tobago (i.e. the African-Caribbean population in England experiences a higher rate of psychosis than the African-Caribbean population in the Caribbean).
It may be that some individuals are genetically more disposed to psychosis, they argue, and this may be uniformly distributed across populations, but that there are other contributory factors that push people over the edge, and these are not uniformly distributed.
They point to evidence of an association between the prevalence of psychosis and reports of experienced racism, verbal abuse and racial attacks. They themselves find evidence that childhood exposures and adult experiences involving severe threat, hostility and violence have the largest impact.
They point to evidence that people from minority ethnic groups are more likely to experience psychosis where their ethnic group forms a smaller part of the local population, and separate evidence that living in such an area is in turn associated with more experiences of racism and less social support.
They point to similar evidence of elevated rates of psychosis among Moroccan and Surinamese populations in The Netherlands and among refugees in Sweden.
For references for each of the above statements, see this paper. Also keep in mind that these analyses generally have the same problems as either the APMS or AESOP analyses discussed above. It is all far from certain.
Based on all of this, they propose a model in which racial discrimination and attack sit alongside other contributory factors such as social disadvantage, trauma, linguistic difference and family break up as primary factors in some people’s development of psychosis. “It further follows from this” they write, “that, in populations where adverse social conditions and experiences are more common, rates of psychosis will be higher.”
The authors draw a wider picture that brings together history, economics and health:
“Higher levels of poverty, discrimination and threat in minority populations stem from long-term historical processes that, in predominantly White societies, have systematically marginalized and excluded those from minority groups, creating systematic barriers to education and economic opportunities, to wealth and upward mobility, to living in more prosperous areas, and to positions of power. In other words, entrenched social structures and practices, at root, determine the differential exposure of ethnic groups to the socio-developmental risks that, we argue, underpin the high rates of psychotic disorders — and subsequent poor outcomes — that have been repeatedly reported across diverse contexts over the past 60 years and more.”
Implications for mental health care
The researchers highlight the obvious problems with the current treatment model that focuses on symptom management and medication for what may partly be individual level symptoms of social problems.
But more than this, there is extensive evidence that a patient’s ethnicity also influences the mental health care that they receive.
In the UK, compared to a White patients, Black African, Black Caribbean and South Asian patients are significantly more likely experience a civil detention during their care.
Black African and Black Caribbean patients are more likely to be detained under the Mental Health Act, and for their care to have more police contact and involvement of the criminal justice system (sometimes with tragic consequences).
Black patients are less likely, however, to have a General Practitioner (GP) involved in their care. Needless to say, GP consultation (primary health care) is a preferred pathway through the system.
In practice, this means, among other things, more coercive forms of treatment, forcible injections of psychotropic medications and time held in isolation.
A recent blog by researchers at the University of Manchester’s Division of Psychology and Mental Health and the Greater Manchester Mental Health NHS Foundation Trust raised many of these issues and added that:
“Black and other UK ethnic minority service users rarely receive culturally-sensitive care. For instance, faith and spirituality (which can buffer symptoms of distress and support recovery) are too often regarded as “irrelevant, harmful, and pathological” by practitioners. People of African and Caribbean origin are also less likely to receive psychological therapies. Those who do, report that their lived experiences and explanations for their difficulties are rejected, nullified or reframed as evidence of illness — particularly when these involve racialisation. Perceptions of practitioners’ lack of empathy and/or cultural awareness have detrimental effects, reinforcing mistrust and increasing the likelihood of disengaging from services; thus further increasing inequalities in access to evidence-based care.”
The authors of the socio-developmental model summarise it all as “high rates of psychoses, poorer outcomes, worse and more coercive experiences of services.”
Where to next?
In response to these observed inequalities, in 2018 the Royal College of Psychiatrists (RCP) endorsed the position that mental health care in the UK is institutionally racist.
The National Institute for Health and Care Excellence (NICE), NHS England and the RCP have all recommended the provision of more ‘culturally sensitive care’, but are less specific about what this means.
As a hopeful step forward, the team at Manchester University have worked with patients, their families, healthcare practitioners, and community members to develop Culturally-adapted Family Intervention (CaFI). This is a talking therapy specifically designed for African and Caribbean people diagnosed with psychosis and their families. Results from trials in Manchester between 2013 and 2017 were positive, and they have been awarded funding to test it in new contexts.
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There is a whole world beneath that single line in the APMS Official Statistics report.
The crude statement is then packaged as an Official Statistic. The Official Statistic is then pumped down the information plumbing of the health system and out into the general population, complete with government seal of approval, moulding people’s opinions up and down the country.
To properly make any evidence based claim three things need to come together — a good quality data set, good quality statistical analysis and good quality interpretation. In this case, do we have all three?
But the more important issue, of course, is the racism that people continue to experience, both in society at large and the mental health care system specifically. This is the bigger disease. The unfortunate few who suffer the psychotic consequences are just one of the many symptoms.
The views expressed are those of the author and may not reflect the official policy or position of his employer.
