INTERNATIONAL: People with Mental Health Disorders Amend the Descriptions

Futurity

For the first time, people with lived experience were consulted on the most widely used diagnostic system for mental disorders. Researchers recruited individuals with mental health diagnoses to provide feedback on the upcoming 11th edition of the International Classification of Diseases (ICD-11). Participants reviewed a draft chapter and recommended changes based on their experiences. Study results showed that the draft left out key information about the felt experience of having a mental disorder. For example, participants with schizophrenia said that the draft should add anger, fear, and memory difficulties to its description of the disorder. People with bipolar disorder recommended adding references to anger, nausea, and creativity. Participants also suggested removing negative language, such as “bizarre” and “disorganized.” “We discovered that the current draft reflected an external perspective of these conditions rather than the perspective of the person’s lived experience,” said coauthor Margaret Swarbrick of Rutgers University Behavioral Health Care. “This is a needed perspective for clinicians and researchers.”

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