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WHO’s diagnostic descriptions can alienate mental health service users

World Health Organization's diagnostic descriptions do not always reflect people’s mental health experiences

A collaborative study by UK and US researchers and the World Health Organization's Department of Mental Health and Substance Abuse found diagnostic descriptions do not always reflect people’s mental health experiences

Diagnostic descriptions do not always resonate with people’s mental health experiences
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People with mental health problems want World Health Organization (WHO) diagnostic descriptions to better reflect what it feels like to live with their conditions.

The feedback from service users, contained in a study by UK and US researchers in collaboration with the WHO Department of Mental Health and Substance Abuse, is the first on such a major mental health diagnosis classification.

The WHO’s International Classification of Diseases (ICD) is used by 194 countries and is the most influential and widely used classification guide, with around 55,000 unique codes for injuries, diseases and causes of death.

Patients asked to compare WHO descriptions of diagnoses with their own experiences

Researchers looked at the latest revision (ICD-11), which will be implemented in 2022, and focused on its chapter on mental, behavioural and neurodevelopmental disorders.

They asked patients with schizophrenia, bipolar disorder, depression, anxiety and personality disorders in the UK, the US and India to compare the WHO descriptions of their diagnoses with their own experiences.

Lead researcher Corinna Hackman said: ‘The descriptions didn’t always resonate with people’s lived mental health experiences. In particular, the descriptions focused on external symptoms, things that can be seen on the outside, rather than the internal, felt experience.

‘Our findings suggest that this may have potential unintended consequences for service users of feeling alienated and misunderstood.’


Find out more

Hackman C et al (2019) Perspectives on ICD-11 to understand and improve mental health diagnosis using expertise by experience (INCLUDE Study): an international qualitative study

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