In July 2011, NAMI (National Alliance on Mental Illness) conducted an online survey of individuals who have experienced psychosis firsthand or directly witnessed the experience of a family member or friend.

Psychosis is not a diagnosis but a symptom or set of symptoms that can have many different causes. Psychosis may be transient, intermittent, short term or part of a longer term psychiatric condition. Early identification and evaluation of the onset of psychosis is an important health concern as outcomes are improved with earlier detection and intervention.

Psychosis is defined as a loss of contact with reality. It typically involves at least one of two experiences:

• Hallucinations which can be auditory in nature (e.g., hearing voices), less commonly visual experiences and more rarely, smelling things that no one else perceives. For the person who experiences hallucinations, they are very real.

• Delusions which are false fixed beliefs, which may involve paranoia (e.g., a man who believes the FBI is chasing him) or mistaken identity (e.g., a woman who believes her mother is an imposter). What makes beliefs delusional is that they do not change when a person is presented with new ideas or facts that demonstrate they are false.

Psychosis is a condition that has historically been associated with shame, humiliation and prejudice, which makes the need for better information more important. NAMI believes that information helps individuals and families make better choices and helps reduce the isolation so common to these experiences.

In response to strong demand from NAMI’s community of individuals and families affected by mental illness, NAMI initiated this survey and as part of a project that includes new resource materials on its website: www.nami.org/psychosis. The survey follows another NAMI survey, Schizophrenia: Public Attitudes, Personal Needs (2008) which found that an average nine year gap occurs between symptoms and the beginning of treatment.

Unnecessary delay in evaluation, diagnosis and treatment represents a public health crisis. Meeting that crisis requires changes in education and culture, as well as the health care system. It requires state-of the-art resources.

With this survey, NAMI has sought to identify needs expressed directly by the people who have the most at stake (i.e., individuals who are at risk of experiencing a first episode of psychosis, those who are recovering from one and their family and friends).

NAMI conducted the survey online from July 15 to July 26, 2011. There were 1,215 responses by persons who identified themselves as having personally experienced psychosis. There were 2,882 by persons who had witnessed someone in early stages of psychosis. In both instances, the respondents were overwhelmingly white, female and with at least a college education.

The average age of those persons who had experienced psychosis was 24 at the time symptoms first began. The oldest age at time of onset was 63 and the youngest age three.

Among family members and friends, parents provided the greatest number of respondents who had witnessed early stages of psychosis in a person: 62.4 percent. The four largest other subgroups were siblings (15.1 percent), spouses or partners (11.5 percent), the person’s own children (9.6 percent) and friends (7.5 percent).

Continued online...  http://www.nami.org/psychosis.