What is the Hearing Voices Movement?

Introduction

The Hearing Voices Movement (HVM) is the name used by organisations and individuals advocating the “hearing voices approach”, an alternative way of understanding the experience of those people who “hear voices”.

In the medical professional literature, ‘voices’ are most often referred to as auditory verbal hallucinations. The movement uses the term ‘hearing voices’, which it feels is a more accurate and ‘user-friendly’ term.

The movement was instigated by Marius Romme, Sandra Escher and Patsy Hage in 1987. It challenges the notion that to hear voices is necessarily a characteristic of mental illness. Instead it regards hearing voices as a meaningful and understandable, although unusual, human variation. It therefore rejects the stigma and pathologisation of hearing voices and advocates human rights, social justice and support for people who hear voices that is empowering and recovery focused. The movement thus challenges the medical model of mental illness, specifically the validity of the schizophrenia construct.

Refer to Hearing Voices Network.

Brief History

The international Hearing Voices Movement is a prominent mental health service-user/survivor movement that promotes the needs and perspectives of experts by experience in the phenomenon of hearing voices (auditory verbal hallucinations). The main tenet of the Hearing Voices Movement is the notion that hearing voices is a meaningful human experience.

The Hearing Voices Movement regards itself and is regarded by others as being a post-psychiatric organisation. It positions itself outside of the mental health world in recognition that voices are an aspect of human difference, rather than a mental health problem. One of the main issues of concern for the Hearing Voices Movement is empowerment and human rights as outlined in its Melbourne Hearing Voices Declaration 2013 and Thessaloniki Declaration 2014.

The Hearing Voices Movement also seeks holistic health solutions to problematic and overwhelming voices that cause mental distress. Based on their research, the movement espouses that many people successfully live with their voices. In themselves voices are not seen as the problem. Rather it is the relationship the person has with their voices that is regarded as the main issue. Research indicates that mindfulness-based interventions can be beneficial for people distressed by hearing voices.

The Hearing Voices Movement has developed interventions for mental health practitioners to support people who hear voices and are overwhelmed by the experience.

Position

The position of the hearing voices movement can be summarised as follows:

  • Hearing voices is not in itself a sign of mental illness.
  • Hearing voices is part of the diversity of being a human, it is a faculty that is common (3-10% of the population will hear a voice or voices in their lifetime) and significant.
  • Hearing voices is experienced by many people who do not have symptoms that would lead to diagnosis of mental illness.
  • Hearing voices is often related to problems in life history.
  • If hearing voices causes distress, the person who hears the voices can learn strategies to cope with the experience.
  • Coping is often achieved by confronting the past problems that lie behind the experience.

Theoretical Overview

The work of Marius Romme, Sandra Escher and other researchers provides a theoretical framework for the movement. They find that:

  • Not everyone who hears voices becomes a patient. Over a third of 400 voice hearers in the Netherlands they studied had not had any contact with psychiatric services. These people either described themselves as being able to cope with their voices and/or described their voices as life enhancing.
  • Demographic (epidemiological) research carried out over the last 120 years provides evidence that there are people who hear voices in the general population (2%-6%) who are not necessarily troubled by them). Only a small minority fulfil the criteria for a psychiatric diagnosis and, of those, only a few seek psychiatric aid indicating that hearing voices in itself is not necessarily a symptom of an illness. Even more (about 8%) have peculiar delusions and do so without being ill.
  • People who cope well with their voices and those who did not, show clear differences in terms of the nature of the relationship they had with their voices.
  • People who live well with their voice experience use different strategies to manage their voices than those voice hearers who are overwhelmed by them.
  • 70% of voice hearers reported that their voices had begun after a severe traumatic or intensely emotional event such as an accident, divorce or bereavement, sexual or physical abuse, love affairs, or pregnancy. Romme and colleagues found that the onset of voice hearing amongst a patient group was preceded by either a traumatic event or an event that activated the memory of an earlier trauma.
  • Specifically, there is a high correlation between voice hearing and abuse. These findings are being substantiated further in on-going studies with voice hearing amongst children.
  • Some people who hear voices have a deep need to construct a personal understanding for their experiences and to talk to others about it without being designated as mad.

Romme, colleagues and other researchers find that people who hear voices can be helped using methods such as voice dialoguing cognitive behaviour therapy (CBT) and self-help methods.

Romme theorises a three phase model of recovery:

StartlingInitial confusion; emotional chaos, fear, helplessness and psychological turmoil.
OrganisationThe need to find meaning, arrive at some understanding and acceptance. The development of ways of coping and accommodating voices in everyday living. This task may take months or years and is marked by the attempt to enter into active negotiation with the voice(s).
StabilisationThe establishment of equilibrium, and accommodation, with the voice(s), and the consequent re-empowerment of the person.

Alternative to Medical Model of Disability

The Hearing Voices Movement disavows the medical model of disability and disapproves of the practises of mental health services through much of the Western world, such as treatment solely with medication. For example, some service users have reported negative experiences of mental health services because they are discouraged from talking about their voices as these are seen solely as symptoms of psychiatric illness. Slade and Bentall conclude that the failure to attend to hallucinatory experiences and/or have the opportunity for dialogue about them is likely to have the effect of helping to maintain them.

In Voices of Reason, Voices of Insanity, Leudar and Thomas review nearly 3,000 years of voice-hearing history. They argue that the Western World has moved the experience of hearing voices from a socially valued context to a pathologised and denigrated one. Foucault has argued that this process can generally arise when a minority perspective is at odds with dominant social norms and beliefs.

Organisation

The Hearing Voices Movement was established in 1987 by Romme and Escher, both from the Netherlands, with the formation of Stichting Weerklank (Foundation Resonance), a peer led support organisation for people who hear voices. In 1988, the Hearing Voices Network was established in England with the active support of Romme. Since then, networks have been established in 35 countries.

INTERVOICE (The International Network for Training, Education and Research into Hearing Voices) is the organisation that provides coordination and support to the Hearing Voices Movement. It is supported by people who hear voices, relatives, friends and mental health professionals including therapists, social workers, nurses, psychiatrists and psychologists.

INTERVOICE was formed in 1997, at a meeting of voice hearers, family members and mental health workers was held in Maastricht, Netherlands to consider how to organise internationally further research and work about the subject of voice hearing. The meeting decided to create a formal organisational structure to provide administrative and coordinating support to the wide variety of initiatives in the different involved countries.

The organisation is structured as a network and was incorporated in 2007 as a non-profit company and charity under UK law. It operates under the name of International Hearing Voices Projects Ltd. The president is Marius Romme and the governing body is made up of people who hear voices and mental health practitioners.

Activities

Hearing Voices Groups

Hearing Voices Groups are based on an ethos of self-help, mutual respect and empathy. They provide a safe space for people to share their experiences and to support one another. They are peer support groups, involving social support and belonging, not necessarily therapy or treatment. Groups offer an opportunity for people to accept and live with their experiences in a way that helps them regain some power over their lives. There are hundreds of hearing voices groups and networks across the world. In 2014 there were more than 180 groups in the UK. These include groups for young people, people in prison, women and people from Black and Minority Ethnic communities.

World Hearing Voices Congress

INTERVOICE hosts the annual World Hearing Voices Congress. In 2015 the 7th Congress was held in Madrid, Spain, the 2016 Congress will be held in Paris, France. Previous conferences have been held in Maastricht, Netherlands, (2009); Nottingham, England (2010), Savona, Italy (2011), Cardiff, Wales (2012); Melbourne, Australia (2013); Thessaloniki, Greece (2014); Madrid, Spain (2015).

Annual World Hearing Voices Day

This is held on 14 September and celebrates hearing voices as part of the diversity of human experience, It seeks to increase awareness of the fact that you can hear voices and be healthy. It also challenges the negative attitudes towards people who hear voices and the assumption that hearing voices, in itself, is a sign of mental illness.

Website and Social Media Platforms

INTERVOICE maintains several forums on Twitter, Facebook and other social media platforms.

Research Committee

INTERVOICE has an international research committee, that commissions research, encourages and supports exchanges and visits between member countries, the translation and publication of books and other literature on the subject of hearing voices and other related extraordinary experiences.

Impact

Appearances in Media

  • Hearing Voices, Horizon Documentary, BBC, UK (1995).
  • Angels and Demons directed by Sonya Pemberton, f2003; produced by ABC Commercial, in Enough Rope, Episode 162.
  • The Doctor Who Hears Voices, Channel 4, UK.
  • The voices in my head TED2013, Filmed February 2013.

Hearing Voices Network Cymru (Wales) maintains a media archive of articles and news items about hearing voices for the last seven years.

A study investigating media reports of the experience of hearing voices found that 84% of the articles in the study contained no suggestion that voice-hearing can be ‘normal’. Half of those that did, put voice-hearing in a religious or spiritual context, for example considering the case of Joan of Arc. Most of the articles (81.8%) connected voice-hearing to mental illness. In some cases, auditory verbal hallucinations were simply equated with insanity.

Criticism of the Hearing Voices Movement

The Hearing Voices Movement has been criticised for its stance on medication and schizophrenia and for promoting non-medical and non-evidence-based approaches to severe mental illnesses in articles by Susan Inman from the Huffington Post, such as “People Who Hear Voices Need Science-Based Advice” in 2013, and “What You’re not Hearing About the Hearing Voices Movement” in 2015.

Specific criticisms of the hearing voices approach include:

  • Using ideas that do not support science-based ways of understanding illness.
  • Undermines people’s trust in medical help that might be crucial to their wellbeing.
  • Encourages people to focus on their voices when they may be having a hard time differentiating between what is real and what is not real.
  • Does not recognise the very different needs of people with severe mental illnesses.
  • By failing to differentiate between the needs of people who actually have psychotic disorders and those who do not, HVM poses serious risks.
  • Poses real danger for the substantial number of people who lack insight into their psychotic disorder.
  • People struggling with psychotic symptoms should not be advised to emphasize the meaning of auditory hallucinations.

What is the Scale for the Assessment of Positive Symptoms?

Introduction

Within psychological testing, the Scale for the Assessment of Positive Symptoms (SAPS) is a rating scale to measure positive symptoms in schizophrenia.

The scale was developed by Nancy Andreasen and was first published in 1984. SAPS is split into 4 domains, and within each domain separate symptoms are rated from 0 (absent) to 5 (severe). The scale is closely linked to the Scale for the Assessment of Negative Symptoms (SANS) which was published a few years earlier.

Items

  • Hallucinations:
    • Auditory Hallucinations.
    • Voices Commenting.
    • Voices Conversing.
    • Somatic or Tactile Hallucinations.
    • Olfactory Hallucinations.
    • Visual Hallucinations.
    • Global Rating of Severity of Hallucinations.
  • Delusions:
    • Persecutory Delusions.
    • Delusions of Jealousy.
    • Delusions of Sin or Guilt.
    • Grandiose Delusions.
    • Religious Delusions.
    • Somatic Delusions.
    • Ideas and Delusions of Reference.
    • Delusions of Being Controlled.
    • Delusions of Mind Reading.
    • Thought Broadcasting.
    • Thought Insertion.
    • Thought Withdrawal.
    • Global Rating of Severity of Delusions.
  • Bizarre Behaviour:
    • Clothing and Appearance.
    • Social and Sexual Behaviour.
    • Aggressive and Agitated Behaviour.
    • Repetitive or Stereotyped Behaviour.
    • Global Rating of Severity of Bizarre Behaviour.
  • Positive Formal Thought Disorder:
    • Derailment (loose associations).
    • Tangentiality.
    • Incoherence (Word salad, Schizophasia).
    • Illogicality.
    • Circumstantiality.
    • Pressure of speech.
    • Distractible speech.
    • Clanging.
    • Global Rating of Positive Formal Thought Disorder.

What is the Scale for the Assessment of Negative Symptoms?

Introduction

The Scale for the Assessment of Negative Symptoms (SANS) is a rating scale that mental health professionals use to measure negative symptoms in schizophrenia.

Negative symptoms are those conspicuous by their absence – lack of concern for one’s appearance, and lack of language and communication skills, for example. Nancy Andreasen developed the scale and first published it in 1984. SANS splits assessment into five domains. Within each domain it rates separate symptoms from 0 (absent) to 5 (severe). The scale is closely linked to the Scale for the Assessment of Positive Symptoms (SAPS), which was published a few years later. These tools are available for clinicians and for research.

Background

Schizophrenia is a severe mental illness characterised by a range of behaviours, including hallucinations and delusions. Hallucinations refer to disorders involving the sensory systems, and are most often manifested as seeing or hearing things (e.g. voices) that do not exist. Delusions include odd or unusual beliefs such as grandiosity or paranoia. Both hallucinations and delusions are inconsistent with reality. Other symptoms of schizophrenia include bizarre behaviour, odd posture or movements, facial grimacing, loss of, or indifference to self-help skills (grooming, washing, toileting, feeding, etc.). Schizophrenia may also be marked by a host of social and communication deficits, such as social withdrawal, odd use of language, including excessive use of made up words (neologisms), incomprehensible combinations of words (word salad) or overall poverty of speech. The symptoms are often classified into two broad categories: positive and negative symptoms. Positive symptoms refer to those behaviours or condition that are present in schizophrenia but that are not present under typical conditions (hallucinations, delusions). Negative symptoms refer to those behaviours that are conspicuous because of their absence (grooming, language, communication). Several measures or rating scales have been developed to assess the positive and negative aspects of schizophrenia.

Items

  • Affective Flattening or Blunting:
    • Unchanging Facial Expression.
    • Decreased Spontaneous Movements.
    • Paucity of Expressive Gestures.
    • Poor Eye Contact.
    • Affective Non-responsivity.
    • Lack of Vocal Inflections.
    • Global Rating of Affective Flattening.
    • Inappropriate Affect.
  • Alogia:
    • Poverty of Speech.
    • Poverty of Content of Speech.
    • Blocking.
    • Increased Latency of Response.
    • Global Rating of Alogia.
  • Avolition – Apathy:
    • Grooming and Hygiene.
    • Impersistence at Work or School.
    • Physical Anergia.
    • Global Rating of Avolition – Apathy.
  • Anhedonia – Asociality:
    • Recreational Interests and Activities.
    • Sexual Interest and Activity.
    • Ability to Feel Intimacy and Closeness.
    • Relationships with Friends and Peers.
    • Global Rating of Anhedonia-Asociality.
  • Attention:
    • Social Inattentiveness.
    • Inattentiveness During Mental Status Testing.
    • Global Rating of Attention.
    • Scale for the Assessment of Positive Symptoms (SAPS).

What is Alogia?

Introduction

In psychology, alogia (from Greek ἀ-, “without”, and λόγος, “speech” + New Latin -ia) is poor thinking inferred from speech and language usage.

There may be a general lack of additional, unprompted content seen in normal speech, so replies to questions may be brief and concrete, with less spontaneous speech. This is termed poverty of speech or laconic speech. The amount of speech may be normal but conveys little information because it is vague, empty, stereotyped, overconcrete, overabstract, or repetitive. This is termed poverty of content or poverty of content of speech. Under Scale for the Assessment of Negative Symptoms (SANS) used in clinical research, thought blocking is considered a part of alogia, and so is increased latency in response.

This condition is associated with schizophrenia, dementia, severe depression, and autism. As a symptom, it is commonly seen in patients suffering from schizophrenia and schizotypal personality disorder, and is traditionally considered a negative symptom. It can complicate psychotherapy severely because of the considerable difficulty in holding a fluent conversation.

The alternative meaning of alogia is inability to speak because of dysfunction in the central nervous system, found in mental deficiency and dementia. In this sense, the word is synonymous with aphasia, and in less severe form, it is sometimes called dyslogia.

Characteristics

Alogia may be on a continuum with normal behaviours. People without mental illness may have it occasionally including when fatigued or disinhibited, when writers use language creatively, when people in certain disciplines – such as politicians, administrators, philosophers, ministers, and scientists – use language pedantically, or in people with intelligence or little education. Hence, deciding if an individual has alogia depends on contextual clues. Is the person in control? Can the person moderate the effect if asked to be specific or concise? Is it better with another topic? Are there other significant symptoms?

Alogia is characterised by a lack of speech, often caused by a disruption in the thought process. Usually, an injury to the left side of the brain may cause alogia to appear in an individual. While in conversation, alogic patients will reply very sparsely and their answers to questions will lack spontaneous content; sometimes, they will even fail to answer at all. Their responses will be brief, generally only appearing as a response to a question or prompt.

Apart from the lack of content in a reply, the manner in which the person delivers the reply is affected as well. Patients affected by alogia will often slur their responses, and not pronounce the consonants as clearly as usual. The few words spoken usually trail off into a whisper, or are just ended by the second syllable. Studies have shown a correlation between alogic ratings in individuals and the amount and duration of pauses in their speech when responding to a series of questions posed by the researcher. The inability to speak stems from a deeper mental inability that causes alogic patients to have difficulty grasping the right words mentally, as well as formulating their thoughts. A study investigating alogiacs and their results on the category fluency task showed that people with schizophrenia who exhibit alogia display a more disorganised semantic memory than controls. While both groups produced the same number of words, the words produced by people with schizophrenia were much more disorderly and the results of cluster analysis revealed bizarre coherence in the alogiac group.

If the condition is assessed using a language other than the individual’s primary language, the medical professional needs to make sure that the problem is not from language barriers.

This condition is associated with schizophrenia, dementia, and severe depression.

Example

The following table shows an example of “poverty of speech” which shows replies to questions that are brief and concrete, with a reduction in spontaneous speech:

Poverty of SpeechNormal Speech
Q: Do you have any children?
A: Yes.
Q: Do you have any children?
A: Yes, a boy and a girl.
Q: How many?
A: Two.
Q: How old are they?
A: Edmond is sixteen and Alice is six.
Q: How old are they?
A: Six and sixteen.
Q: Are they boys or girls?
A: One of each.
Q: Who is the sixteen-year-old?
A: The boy.
Q: What is his name?
A: Edmond.
Q: And the girl’s?
A: Alice.

The following example of “poverty of content of speech” is a response from a patient when asked why he was in a hospital. Speech is vague, conveys little information, but is not grossly incoherent and the amount of speech is not reduced. “I often contemplate—it is a general stance of the world—it is a tendency which varies from time to time—it defines things more than others—it is in the nature of habit—this is what I would like to say to explain everything.”

Causes

Alogia can be brought on by frontostriatal dysfunction which causes degradation of the semantic store, the centre located in the temporal lobe that processes meaning in language. A subgroup of chronic schizophrenia patients in a word generation experiment generated fewer words than the unaffected subjects and had limited lexicons, evidence of the weakening of the semantic store. Another study found that when given the task of naming items in a category, schizophrenia patients displayed a great struggle but improved significantly when experimenters employed a second stimulus to guide behaviour unconsciously. This conclusion was similar to results produced from patients with Huntington’s and Parkinson’s disease, ailments which also involve frontostriatal dysfunction.

Treatment

Medical studies conclude that certain adjunctive drugs effectively palliate the negative symptoms of schizophrenia, mainly alogia. In one study, Maprotiline produced the greatest reduction in alogia symptoms with severity reduction in 50% of patients (out of 10). Of the negative symptoms of schizophrenia, alogia had the second best responsiveness to the drugs, surpassed only by attention deficiency. D-amphetamine is another drug that has been tested on people with schizophrenia and found success in alleviating negative symptoms. This treatment, however, has not been developed greatly as it seems to have adverse effects on other aspects of schizophrenia such as increasing the severity of positive symptoms.

Relation to Schizophrenia

Although alogia is found as a symptom in a variety of health disorders, it is most commonly found as a negative symptom of schizophrenia.

Previous studies and analyses conclude that at least three factors are needed to cover both the positive and negative symptoms of schizophrenia; the three are: psychotic, disorganization, and negative symptom factors. Studies suggest that an inappropriate affect is strongly associated with bizarre behaviour and positive formal thought disorder on a disorganisation factor; attention impairment correlates significantly with psychotic, disorganization, and negative symptom factors. Alogia contains both positive and negative symptoms, with the poverty of content of speech as the disorganization factor, and poverty of speech, response latency, and thought blocking as the negative symptom factors.

Alogia is a major diagnostic sign of schizophrenia, when organic mental disorders have been excluded.

In schizophrenia, negative symptoms including flattening of affect, avolition, and alogia are responsible for the considerable morbidity of the disease compared with other psychotic disorders. Negative symptoms are common in the prodromal and residual phases of the disease and can be severe. During the first year, negative symptoms can progress, especially alogia, which may start off from a relatively low rate. Within 2 years, up to 25% of patients will have significant negative symptoms. Psychotic symptoms tend to diminish as the individuals age, but negative symptoms tend to persist. Prominent negative symptoms at disease onset, including alogia, are good predictors of worse outcomes.

Negative symptoms can arise in the presence of other psychiatric symptoms. Positive symptoms are a common cause of apathy, social withdrawal, and alogia. Secondary causes of negative symptoms, such as depression and demoralisation, often remit within a year, which helps distinguishing them from primary negative symptoms. Symptoms that don’t diminish over a year with medications should be reconsidered as possible primary negative symptoms.

What are Grandiose Delusions?

Introduction

Grandiose delusions (GD) – also known as delusions of grandeur or expansive delusions – are a subtype of delusion that occur in patients suffering from a wide range of psychiatric diseases, including two-thirds of patients in manic state of bipolar disorder, half of those with schizophrenia, patients with the grandiose subtype of delusional disorder, and a substantial portion of those with substance abuse disorders.

GDs are characterised by fantastical beliefs that one is famous, omnipotent, wealthy, or otherwise very powerful. The delusions are generally fantastic and typically have a religious, science fictional, or supernatural theme. There is a relative lack of research into GD, in contrast to persecutory delusions and auditory hallucinations. About 10% of healthy people experience grandiose thoughts but do not meet full criteria for a diagnosis of GD.

Signs and Symptoms

According to the DSM-IV-TR diagnostic criteria for delusional disorders, grandiose-type symptoms include exaggerated beliefs of:

  • Self-worth.
  • Power.
  • Knowledge.
  • Identity.
  • Exceptional relationship to a deity or famous person.

For example, a patient who has fictitious beliefs about his or her power or authority may believe himself or herself to be a ruling monarch who deserves to be treated like royalty. There are substantial differences in the degree of grandiosity linked with grandiose delusions in different patients. Some patients believe they are God, the Queen of the United Kingdom, a president’s son, a famous rock star, and some other examples. Others are not as expansive and think they are skilled athletes or great inventors.

Expansive delusions may be maintained by auditory hallucinations, which advise the patient that they are significant, or confabulations, when, for example, the patient gives a thorough description of their coronation or marriage to the king. Grandiose and expansive delusions may also be part of fantastic hallucinosis in which all forms of hallucinations occur.

Positive Functions

Grandiose delusions frequently serve a very positive function by sustaining or increasing their self-esteem. As a result, it is essential to consider the consequences of removing the grandiose delusion on self-esteem when trying to modify the grandiose delusion in therapy. In many instances of grandiosity, it is suitable to go for a fractional rather than a total modification, which permits those elements of the delusion that are central for self-esteem to be preserved. For example, a person who believes they are a senior secret service agent gains a great sense of self-esteem and purpose from this belief, thus until this sense of self-esteem can be provided from elsewhere, it is best not to attempt modification.

Comorbidity

Schizophrenia

Schizophrenia is a mental disorder distinguished by a loss of contact with reality and the occurrence of psychotic behaviours, including hallucinations and delusions (unreal beliefs which endure even when there is contrary evidence). Delusions may include the false and constant idea that the person is being followed or poisoned, or that the person’s thoughts are being broadcast for others to listen to. Delusions in schizophrenia often develop as a response to the individual attempting to explain their hallucinations. Patients who experience recurrent auditory hallucinations can develop the delusion that other people are scheming against them and are dishonest when they say they do not hear the voices that the delusional person believes that he or she hears.

Specifically, grandiose delusions are frequently found in paranoid schizophrenia, in which a person has an extremely exaggerated sense of his or her significance, personality, knowledge, or authority. For example, the person may declare to own a major corporation and kindly offer to write a hospital staff member a check for $5 million if only help them escape from the hospital. Other common grandiose delusions in schizophrenia include religious delusions such as the belief that one is Jesus Christ.

Bipolar Disorder

Refer to Bipolar Disorder.

Bipolar I disorder can lead to severe affective dysregulation, or mood states that sway from exceedingly low (depression) to exceptionally high (mania). In hypomania or mania, some bipolar patients can suffer grandiose delusions. In its most severe manifestation, days without sleep, auditory and other hallucinations, or uncontrollable racing thoughts can reinforce these delusions. In mania, this illness affects emotions and can also lead to impulsivity and disorganised thinking, which can be harnessed to increase their sense of grandiosity. Protecting this delusion can also lead to extreme irritability, paranoia, and fear. Sometimes their anxiety can be so over-blown that they believe others are jealous of them and, thus, undermine their “extraordinary abilities,” persecuting them or even scheming to seize what they already have.

The vast majority of bipolar patients rarely experience delusions. Typically, when experiencing or displaying a stage of heightened excitability called mania, they can experience joy, rage, and other intense emotions that can cycle out of control, along with thoughts or beliefs that are grandiose. Some of these grandiose thoughts can be expressed as strong beliefs that the patient is very rich or famous or has super-human abilities, or can even lead to severe suicidal ideations. In the most severe form, in what was formerly labelled as megalomania, the bipolar patient may hear voices that support these grandiose beliefs. In their delusions, they can believe that they are, for example, a king, a creative genius, or can even exterminate the world’s poverty because of their extreme generosity.

Cause(s)

There are two alternative causes for developing grandiose delusions:

  1. Delusion-as-defence: Defence of the mind against lower self-esteem and depression.
  2. Emotion-consistent: Result of exaggerated emotions.

Anatomical Aspects

Grandiose delusions may be related to lesions of the frontal lobe. Temporal lobe lesions have been mainly reported in patients with delusions of persecution and of guilt, while frontal and frontotemporal involvement have been described in patients with grandiose delusions, Cotard’s syndrome, and delusional misidentification syndrome.

Diagnosis

Patients with a wide range of mental disorders which disturb brain function experience different kinds of delusions, including grandiose delusions. Grandiose delusions usually occur in patients with syndromes associated with secondary mania, such as Huntington’s disease, Parkinson’s disease, and Wilson’s disease. Secondary mania has also been caused by substances such as L-DOPA and isoniazid which modify the monoaminergic neurotransmitter function. Vitamin B12 deficiency, uraemia, hyperthyroidism as well as the carcinoid syndrome have been found to cause secondary mania, and thus grandiose delusions.

In diagnosing delusions, the MacArthur-Maudsley Assessment of Delusions Schedule is used to assess the patient

Treatment

In patients suffering from schizophrenia, grandiose and religious delusions are found to be the least susceptible to cognitive behavioural interventions. Cognitive behavioural intervention is a form of psychological therapy, initially used for depression, but currently used for a variety of different mental disorders, in hope of providing relief from distress and disability. During therapy, grandiose delusions were linked to patients’ underlying beliefs by using inference chaining. Some examples of interventions performed to improve the patient’s state were focus on specific themes, clarification of patient’s neologisms, and thought linkage. During thought linkage, the patient is asked repeatedly by the therapist to explain their jumps in thought from one subject to a completely different one.

Patients suffering from mental disorders that experience grandiose delusions have been found to have a lower risk of having suicidal thoughts and attempts.

Epidemiology

In researching over 1000 individuals of a vast range of backgrounds, Stompe and colleagues (2006) found that grandiosity remains as the second most common delusion after persecutory delusions. A variation in the occurrence of grandiosity delusions in schizophrenic patients across cultures has also been observed. In research done by Appelbaum et al. it has been found that GDs appeared more commonly in patients with bipolar disorder (59%) than in patients with schizophrenia (49%), followed by presence in substance misuse disorder patients (30%) and depressed patients (21%).

A relationship has been claimed between the age of onset of bipolar disorder and the occurrence of GDs. According to Carlson et al. (2000), grandiose delusions appeared in 74% of the patients who were 21 or younger at the time of the onset, while they occurred only in 40% of individuals 30 years or older at the time of the onset.

Prevalence

Research suggests that the severity of the delusions of grandeur is directly related to a higher self-esteem in individuals and inversely related to any individual’s severity of depression and negative self-evaluations. Lucas et al. (1962) found that there is no significant gender difference in the establishment of grandiose delusion. However, there is a claim that ‘the particular content of Grandiose delusions’ may be variable across both genders. Also, it has been noted that the presence of GDs in people with at least grammar or high school education was greater than lesser educated persons. Similarly, the presence of grandiose delusions in individuals who are the eldest is greater than in individuals who are the youngest of their siblings.

What is the National Alliance on Mental Illness?

Introduction

The National Alliance on Mental Illness (NAMI) is a United States-based advocacy group originally founded as a grassroots group by family members of people diagnosed with mental illness.

NAMI identifies its mission as “providing advocacy, education, support and public awareness so that all individuals and families affected by mental illness can build better lives” and its vision as “a world where all people affected by mental illness live healthy, fulfilling lives supported by a community that cares”. NAMI offers classes and trainings for people living with mental illnesses, their families, community members, and professionals, including what is termed psychoeducation, or education about mental illness. NAMI holds regular events which combine fundraising for the organization and education, including Mental Illness Awareness Week and NAMIWalks.

Headquartered in Arlington, Virginia, NAMI has around 1,000 state and local affiliates and is represented in all 50 US states, Washington, D.C., and Puerto Rico. NAMI is funded primarily through pharmaceutical company donations. Additional funding comes from individual donors, as well as sponsorships and grants. NAMI publishes a magazine around twice a year called The Advocate. NAMI also runs a HelpLine five days a week, which is funded in part by pharmaceutical companies Janssen and Lundbeck.

Brief History

NAMI was founded in Madison, Wisconsin, by Harriet Shetler and Beverly Young. The two women both had sons diagnosed with schizophrenia, and “were tired of being blamed for their sons’ mental illness”. Unhappy with the lack of services available and the treatment of those living with mental illness, the women sought out others with similar concerns. The first meeting held to address these issues in mental health led to the formation of the National Alliance for the Mentally Ill in 1979. In 1997, the legal name was changed to the acronym NAMI by a vote of the membership due to concerns that the name National Alliance for the Mentally Ill did not use person-first language. In 2005, the meaning of NAMI was changed to the backronym National Alliance on Mental Illness.

Mission

NAMI identifies its mission as to promote recovery by preserving and strengthening family relationships “affected by mental illness”. NAMI’s programmes and services include education, support groups, informational publications, and presentations. Although originally focused primarily on family members, in more recent years NAMI has moved toward trying to include people diagnosed with mental illness as well (although activists have criticised these efforts). In addition, NAMI has a strong focus on discriminatory attitudes and behaviours about mental illness (what they term stigma); another identified goal is “to increase public and professional understanding”, and “to improve the mental health system”.

Structure

The National Alliance on Mental Illness is a 501(c)(3) non-profit run by a board of directors who are elected by membership. NAMI National is the umbrella organisation; state and local affiliates operate semi-independently, in an attempt to more accurately represent those in the surrounding communities. Since 2015, NAMI has been using a four-year strategic plan which expires in 2019.

The national chief executive officer from 2014-2019 was Mary Giliberti, who resigned on 24 April 2019. She was immediately preceded by Michael Fitzpatrick. Gilberti, who has a law degree from Yale University and clerked for Judge Phyllis A. Kravitch. Before coming to NAMI, Giliberti worked as a senior attorney at Bazelon Centre for Mental Health Law for almost ten years and the Senate Health, Education, Labour, and Pensions Committee from 2008 to 2014. She worked for NAMI National during this time as the director of public policy and advocacy for federal and state issues. In 2017, she was “appointed by the Secretary of the U.S. Department of Health and Human Service (HHS) to serve as one of 14 non-federal members of HHS’ Interdepartmental Serious Mental Illness Coordinating Committee.”

National and state NAMI organisations function to provide Governance, Public Education, Political Advocacy, and management of NAMI’s Educational Programmes. At the local level, the local NAMI chapters also provide assistance in obtaining mental health resources, scheduling and administration of NAMI’s programmes, and hosting local meetings and events for NAMI members.

In February 2020, NAMI Sioux Falls has merged with the South Dakota Office. The move was a result of a decision by the national NAMI office.

Partnerships

In 2017, NAMI partnered with Alpha Kappa Alpha (since 2015), Instagram, tumblr, Women’s Health, Fox Sports, Stanley Centre for Psychiatric Research at Broad Institute, Jack and Jill of America, The Jed Foundation, and Lokai. Celebrity partnerships included Utkarsh Ambudkar, Maria Bamford, Andrea Barber, AJ Brooks, Sterling K. Brown, Corinne Foxx, Naomi Judd, Dawn McCoy, Stefania Owen, Alessandra Torresani, Wil Wheaton, DeWanda Wise, and Chris Wood.

Philosophy and Positions

NAMI generally endorses a medical model approach to mental illnesses, and previously was a major proponent of terming them “serious brain disorders” during the “decade of the brain”. NAMI endorses the term anosognosia, or “that someone is unaware of their own mental health condition or that they can’t perceive their condition accurately”. While NAMI previously referred to mental illnesses as “serious brain disorders”, current advice on their “How we talk about NAMI” page recommends against this language.

Programmes

NAMI programmes are generally in the area of support and education for individuals and families, often for no cost. The programmes are set up through local NAMI Affiliate organisations, with different programmes varying in their targeted audience.

NAMI Family-to-Family

The NAMI Family-to-Family Education Programme is a free eight-week course targeted toward family and friends of individuals with mental illness, providing education from a medical model perspective of mental illness. Originally offered as a twelve-week programme, but updated to a shorter model in 2020, the courses are taught by a NAMI-trained family member of a person diagnosed with a psychiatric disorder. Family-to-Family is taught in 44 states, and two provinces in Canada. The programme was developed by clinical psychologist Joyce Burland. Facilitators are required to teach material from the curriculum without alteration.

Purpose

The Family-to-Family programme provides general information about mental illness and how it is currently treated from a medical model perspective. The programmes cover mental illnesses including schizophrenia, depression, bipolar disorder, etc., as well as the indications and side effects of medications. Family-to-Family takes a biologically-based approach to explaining mental illness and its treatments.

According to the NAMI website, Family-to-Family programme states its goals as teaching coping and advocacy skills, providing mutual support, how to “handle a crisis”, “information on mental health conditions and how they affect the brain”, and locating resources in the community

Evidence Base

The NAMI Family-to-Family programme has initial research evidence; one randomised clinical trial showed gains in empowerment, increases in problem solving and reductions in participant anxiety scores following the class; these changes persisted at 6 month follow up. These studies confirm an earlier finding that Family-to-Family graduates describe a permanent transformation in the understanding and engagement with mental illness in themselves and their family. Because a randomized controlled trial is at risk of poor external validity by mechanism of self-selection, Dixon and colleges sought out to strengthen the evidence base by confirming the benefits attributed to Family-to-Family with a subset of individuals who declined participation during initial studies.

The NAMI Family-to-Family programme was found to increase self efficacy in family members involved in caring for a family member with schizophrenia while reducing subjective burden and need for information. In light of recent research, Family-to-Family was added to the SAMHSA National Registry of Evidence-Based Programmes and Practices (NREPP), although as of January 2018 this database and designation has been eliminated by SAMHSA.

NAMI Peer-to-Peer

The NAMI Peer-to-Peer is an eight-week educational programme aimed at adults diagnosed with a mental illness. The NAMI Peer-to-Peer programme describes the course as a holistic approach to recovery through lectures, discussions, interactive exercises, and teaching stress management techniques. The programme provides information about biological explanations of mental illness, symptoms, and personal experiences. The programme also includes information about interacting with healthcare providers as well as decision making and stress reducing skills. The Peer-to-Peer philosophy is advertised as being centred around certain values such as individuality, autonomy, and unconditional positive regard. The programme is also available in Spanish.

Preliminary studies have suggested Peer-to-Peer provided many of its purported benefits (e.g. self-empowerment, disorder management, confidence). Peer interventions in general have been studied more extensively, having been found to increase social adjustment.

NAMI In Our Own Voice

The NAMI In Our Own Voice (IOOV) programme started as a mental health consumer education program for people living with schizophrenia in 1996, and was further developed to IOOV with grant funding from Eli Lily & Co. in 2002. The programme was based on the idea that those successfully living with mental illness were experts in a sense, and sharing their stories would benefit those with similar struggles. The programme approached this by relaying the idea that recovery is possible, attempting to build confidence and self-esteem. Because of the initial success of the programme and positive reception, IOOV also took on the role of public advocacy.

NAMI In Our Own Voice involves two trained speakers presenting personal experiences related to mental illness, in front of an audience. Unlike the majority of NAMI’s programmes, IOOV consists of a single presentation educating groups of individuals with the acknowledgement many are likely unfamiliar with mental illness. The programme’s aims include raising awareness regarding NAMI and mental illness in general, addressing stigma, and empowering those affected by mental illness. Other than those directly affected by mental illness, In Our Own Voice often educates groups of individuals like law enforcement, politicians, and students.

In Our Own Voice has been shown to be superior at reducing self stigmatisation of families when compared to clinician led education. Research into the effectiveness of the NAMI In Our Own Voice programme has shown the programme also can be of benefit to Graduate level therapists and adolescents. A 2016 study evaluating IOOV in California found significant reductions in desire for social distancing after attending an IOOV presentation, although no validated measures were used in the evaluation.

NAMI Basics

The NAMI Basics Programme is a six-session course for parents or other primary caregivers of children and adolescents living with mental illness. NAMI Basics is conceptually similar to NAMI Family-to-Family in that it aims to educate families, but recognises providing care for a child living with mental illness presents unique challenges in parenting, and that mental illness in children typically manifest differently than in adults. Because of the development of the brain and nervous system throughout childhood and adolescence, information regarding mental illness biology and its presentation is fundamentally different from with adults. The NAMI Basics programme has a relatively short time course to accommodate parents’ difficulty in attending because of their caregiver status.

NAMI Connection

The NAMI Connection Recovery Support Group Programme is a weekly support group for adults living with mental illness. The programme is for adults 18+ diagnosed with mental illness and groups are usually weekly for 90 minutes. The support groups are led by trained facilitators who identify as having experienced mental illness themselves.

NAMI On Campus

NAMI On Campus is an initiative for university students to start NAMI On Campus organisations within their respective universities. NAMI On Campus was started to address the mental health issues of college-aged students. Adolescence and early adulthood are periods where the onset of mental illness is common, with 75% of mental illnesses beginning by age 24. When asked what barriers, if any, prevented them from gaining support and treatment, surveys found stigma to be the number one barrier.

Ending the Silence

This 50-minute or one hour programme is available for students, school staff, and family members. It involves two presenters: one who shares educational information and one who is a young adult living well in recovery who shares their personal story. This programme has been shown to improve the mental health knowledge of middle- and high school students.

In 2017, Former Second Lady of the United States Tipper Gore gave a $1 million donation to the Ending the Silence programme.

Funding

NAMI receives funding from both private and public sources, including corporations, federal agencies, foundations and individuals. NAMI maintains that it is committed to avoiding conflicts of interest and does not endorse nor support any specific service or treatment. Records of NAMI’s quarterly grants and contributions since 2009 are freely available on its website.

In 2017, NAMI had a 16% increase in overall revenue.

NAMIWalks

The 2017 annual report noted “$11.3 million raised across the country by 68,000 participants.”

Criticism

The funding of NAMI by multiple pharmaceutical companies was reported by the investigative magazine Mother Jones in 1999, including that an Eli Lilly & Company executive was then “on loan” to NAMI working out of NAMI headquarters.

During a 2009 investigation into the drug industry’s influence on the practice of medicine, US Senator Chuck Grassley (R-IA) sent letters to NAMI and about a dozen other influential disease and patient advocacy organisations asking about their ties to drug and device makers. The investigation confirmed pharmaceutical companies provided a majority of NAMI’s funding, a finding which led to NAMI releasing documents listing donations over $5,000.

Dr. Peter Breggin refers to NAMI as an “AstroTurf lobbying organisation” of the “psychopharmaceutical complex”.

What is Stilted Speech?

Introduction

In psychiatry, stilted speech or pedantic speech is communication characterised by situationally-inappropriate formality (refer to Communication Deviance). This formality can be expressed both through abnormal prosody as well as speech content that is “inappropriately pompous, legalistic, philosophical, or quaint”. Often, such speech can act as evidence for autism spectrum disorder (ASD) or a thought disorder, a common symptom in schizophrenia or schizotypal personality disorder.

To diagnose stilted speech, researchers have previously looked for the following characteristics:

  • Speech conveying more information than necessary.
  • Vocabulary and grammar expected from formal writing rather than conversational speech.
  • Unneeded repetition or corrections.

While literal and long-winded word content is often the most identifiable feature of stilted speech, such speech often displays irregular prosody, especially in resonance. Often, the loudness, pitch, rate, and nasality of pedantic speech vary from normal speech, resulting in the perception of pedantic or stilted speaking. For example, overly loud or high-pitched speech can come across to listeners as overly forceful while slow or nasal speech creates an impression of condescension.

These attributions, which are commonly found in patients with ASD, partially account for why stilted speech has been considered a diagnostic criterion for the disorder. Stilted speech, along with atypical intonation, semantic drift, terseness, and perseveration, are all qualities known to be commonly impaired during conversation with adolescents on the autistic spectrum. Often, stilted speech found in children with ASD will also be especially stereotypic or rehearsed.

Patients with schizophrenia are also known to experience stilted speech. This symptom is attributed to both an inability to access more commonly used words and a difficulty understanding pragmatics – the relationship between language and context. However, stilted speech appears as a less common symptom compared to a certain number of other symptoms of the psychosis. This element of cognitive disorder is also exhibited as a symptom in the narcissistic personality disorder.

There is disagreement on the definition of psychophenomenology within the discipline of psychiatry, e.g. published sources provide definitions that are “various and sometimes conflicting (Rule 2005)”.

What is Communication Deviance?

Introduction

Communication deviance (CD) occurs when a speaker fails to effectively communicate meaning to their listener with confusing speech patterns or illogical patterns.

Refer to Stilted Speech.

Background

These disturbances can range from vague linguistic references, contradictory statements to more encompassing non-verbal problems at the level of turn-taking.

The term was originally introduced by Lyman Wynne and Margaret Singer in 1963 to describe a communication style found among parents who had children with schizophrenia. According to Wynne, people are able to focus their attention and identify meaning from external stimuli beginning with their interactions, particularly with their parents, during their early years of life. In family communication, deviance is present in the way members acknowledge or affirm one another as well as in task performance.

A recent meta-analysis reported that communication deviance is highly prevalent in parents of patients diagnosed with schizophrenia and adoption studies have reported significant associations between CD in the parent and thought disorder in the offspring, however, the mechanisms by which CD impacts on the offspring’s cognition are still unknown. Some researchers theorize that, in the case of a high degree of egocentric communication in parents where the sender and the receiver do not speak and listen according to each other’s premises, the child develops uncertainty.

The research of psychiatrists and psychoanalysts Lyman Wynne and Theodore Lidz on communication deviance and roles (e.g. pseudo-mutuality, pseudo-hostility, schism and skew) in families of people with schizophrenia also became influential with systems-communications-oriented theorists and therapists.

What was Disorganised Schizophrenia?

Introduction

Disorganised schizophrenia, or hebephrenia, was a subtype of schizophrenia prior to 2013. Subtypes of schizophrenia were no longer recognised as separate conditions in DSM 5 published in 2013. The disorder is no longer listed in the 11th revision of the International Classification of Diseases (ICD-11).

Disorganised schizophrenia is classified within ICD-10 the existing classification, in practice, until the 01 January 2022, as a mental and behavioural disorder, because the classification was thought to be an extreme expression of the disorganisation syndrome that has been hypothesized to be one aspect of a three-factor model of symptoms in schizophrenia, the other factors being reality distortion (involving delusions and hallucinations) and psychomotor poverty (lack of speech, lack of spontaneous movement and various aspects of blunting of emotion).

Presentation

The condition is also known as hebephrenia, named after the Greek term for “adolescence” – ἥβη (hḗbē) – and possibly the ancient-Greek goddess of youth, Hebe, daughter of Hera. The term refers to the ostensibly more prominent appearance of the disorder in persons around puberty.

The prominent characteristics of this form are disorganised behaviour and speech (see formal thought disorder), including loosened associations and schizophasia (“word salad”), and flat or inappropriate affect. In addition, psychiatrists must rule out any possible sign of catatonic schizophrenia.

The most prominent features of disorganised schizophrenia are not delusions and hallucinations, as in paranoid schizophrenia, although fragmentary delusions (unsystemised and often hypochondriacal) and hallucinations may be present. A person with disorganised schizophrenia may also experience behavioural disorganisation, which may impair his or her ability to carry out daily activities such as showering or eating.

The emotional responses of such people often seem strange or inappropriate. Inappropriate facial responses may be common, and behaviour is sometimes described as “silly”, such as inappropriate laughter. Sometimes, there is a complete lack of emotion, including anhedonia (lack of pleasure), and avolition (lack of motivation). Some of these features are also present in other types of schizophrenia, but they are most prominent in disorganised schizophrenia.

Treatment

This form of schizophrenia is typically associated with early onset (often between the ages of 15 and 25 years) and is thought to have a poor prognosis because of the rapid development of negative symptoms and decline in social functioning.

Use of electroconvulsive therapy has been proposed; however, the effectiveness after treatment is in question.

What is the Kiddie Schedule for Affective Disorders and Schizophrenia?

Introduction

The Kiddie Schedule for Affective Disorders and Schizophrenia (K-SADS) is a semi-structured interview aimed at early diagnosis of affective disorders such as depression, bipolar disorder, and anxiety disorder. There are currently four different versions of the test that are structured to include interviews with both the child and the parents or guardians.

The K-SADS serves to diagnose childhood mental disorders in school-aged children 6-18. The different adaptations of the K-SADS were written by different researchers and are used to screen for many affective and psychotic disorders. Versions of the K-SADS are semi-structured interviews administered by health care providers or highly trained clinical researchers, which gives more flexibility to the interviewer about how to phrase and probe items, while still covering a consistent set of disorders. Due to its semi-structured interview format, time to complete the administration varies based on the youth/adult being interviewed. Most versions of the K-SADS also include “probes”, if these are endorsed, another diagnostic category will be reviewed. If the probe is not endorsed, additional symptoms for that particular disorder will not be queried.

The K-SADS has been found to be reliable and valid in multiple research and treatment settings.

Refer to the Schedule for Affective Disorders and Schizophrenia (SADS).

Development and Brief History

The Schedule for Affective Disorders and Schizophrenia for School Aged Children, or K-SADS, was originally created as an adapted version of the Schedule for Affective Disorders and Schizophrenia, a measure for adults. The K-SADS was written by Chambers, Puig-Antich, et al. in the late 1970s. The K-SADS was developed to promote earlier diagnosis of affective disorders and schizophrenia in children in a way that incorporates reports by both the child and parent and a “summary score” by the interviewer based on observations and teacher ratings.

The first version of the K-SADS differed from other tests on children because it relied on answers to interview questions rather than observances during games and interactions. The 1990s led to the creation of different versions of the K-SADS for different purposes, such as ascertaining lifetime diagnoses (K-SADS-E) or focusing on current episodes (K-SADS-P).

Versions

KSADS-Present Version (KSADS-P)

The KSADS-P was the first version of the K-SADS, developed by Chambers and Puig-Antich in 1978 as a version of the Schedule for Affective Disorders and Schizophrenia adapted for use with children and adolescents 6-19 years old. This version rephrased the SADS to make the wording of the questionnaire pertain to a younger age group. For example, mania symptoms in children might be manifest differently than in adulthood (e.g. children might have not have the same opportunity to spend money impulsively, nor would they likely have access to credit cards or checking accounts; instead, they might give away all their favourite toys or empty their parent’s wallet to gain spending money). The KSADS-P is a structured interview given by trained clinicians or clinical researchers who interview both the child and the parent. This original version assesses symptoms that have occurred in the most current episode (within the week preceding the interview), as well as symptoms that have occurred within the last 12 months. The KSADS-P has many limitations: it does not assess lifetime symptoms and history, does not include many psychiatric diagnoses of interest in childhood (such as autistic spectrum disorders), and does not include diagnosis specific impairment ratings.

KSADS-Present and Lifetime Version (KSADS-PL)

The K-SADS-PL is used to screen for affective and psychotic disorders as well as other disorders, including, but not limited to Major Depressive Disorder, Mania, Bipolar Disorders, Schizophrenia, Schizoaffective Disorder, Generalized Anxiety, Obsessive Compulsive Disorder, Attention Deficit Hyperactivity Disorder, Conduct Disorder, Anorexia Nervosa, Bulimia, and Post-Traumatic Stress Disorder. This semi-structured interview takes 45-75 minutes to administer. It was written by Joan Kaufman, Boris Birmaher, David Brent, Uma Rao, and Neal Ryan. The majority of items in the K-SADS-PL are scored using a 0-3 point rating scale. Scores of 0 indicate no information is available; scores of 1 suggest the symptom is not present; scores of 2 indicate sub-threshold presentation and scores of 3 indicate threshold presentation of symptoms. The KSADS-PL has six components:

ComponentDescription
Unstructured Introductory Interview – Developmental HistoryThe first part of the interview asks about developmental history and the history of the presenting problem. The interviewer takes detailed notes on the record sheet. Prompts cover basic demographic information, physical and mental health history and prior treatments, current complaints, and the youth’s relations with friends, family, school, and hobbies. This section allows flexibility for the interviewer to collect more information on questions that need elaboration.
Diagnostic Screening InterviewThe diagnostic screening interview reviews the most severe current and past symptoms. There are probes and scoring criteria for each symptom presented. Symptoms of disorders are grouped into modules. If the patient does not display any current or past symptoms for the screening questions, then the rest of the module’s questions do not need to be asked.
Completion Checklist SupplementA supplemental checklist is used to screen for additional disorders.
Appropriate Diagnostic SupplementsThese supplements review presence/absence of symptoms for other disorders, including anxiety disorders, behavioural disorders, and substance abuse.
Summary Lifetime Diagnosis ChecklistBased on the previous sections, this section summarises which disorders have been present from first episode to now.
Children’s Global Assessment Scale (C-GAS)Scores the child’s level of functioning.

KSADS-Epidemiological (KSADS-E)

The KSADS-E, which is the epidemiological version of the KSADS, is a tool to interview parents about possible psychopathology in children from preschool onward. It was developed by Puig-Antich, Orvaschel, Tabrizi, and Chambers in 1980 as a structured interview. The tool examines both past and current episodes, focusing on the most severe past episode and the most current episode. However, this tool does not rate symptom severity; it should only be used to assess presence or absence of symptomatology. This version of the K-SADS introduced screening questions, which, if negative, allowed skipping the remaining diagnostic probes. Furthermore, the K-SADS-E also includes “skip out” criteria when assessing other diagnostic disorders (ADHD, PTSD, etc.), allowing those that screen positive to immediately be interviewed for all of the symptoms regarding that diagnosis, and those that screened negative could “skip out” of being interviewed on the remaining symptoms.

WASH-U-KSADS

The WASH-U version of the K-SADS was written by Barbara Geller and colleagues in 1996. It is a modified version of the 1986 K-SADS. This version is like many other versions of the K-SADS in that it is semi-structured, administered by clinicians to both parent and child separately, and assesses present episodes. However, this version specifically expands the mania section in order to be more applicable to pre-pubertal mania. In particular, it queries presence/absence of rapid cycling. It also includes a section on multiple other DSM-IV diagnoses, and examines both present and lifetime symptoms as well as symptom onset and offset items. These modifications made this specific version particularly useful for phenomenology studies.

KSADS Mania Rating Scale (KMRS) and Depression Rating Scale (KDRS)
It also is possible to use the items in the mania and depression modules of some versions of the KSADS to get an interview-based rating of the severity of mood problems. The KMRS and KDRS use a 1 to 6 rating format (the same as in the WASH-U, -P, and PL-Plus versions). Adding up the items provides a measure of the total symptom burden. The KMRS assess 21 symptoms related to mania, hypomania, and rapid cycling. Each item is rated on a 0-6 rating scale. Scores of 0 suggest no information is available (missing data); scores of 1 suggest the symptom is not present at all; scores of 2 suggest the symptom is slightly present; scores of 3 suggest the symptom is mildly severe; scores of 4 suggest the symptom is moderately severe; scores of 5 suggest the symptom is severe; and scores of 6 suggest the symptom is extremely severe. Items with scores of 4 or higher are clinically significant/problematic. Trained clinicians or clinical researchers administer the assessment to both the child and the parent, which each provide their own separate score for each item (P and C), and the total score encompasses the sum of all of the items (S).

The KMRS is an alternative to the Young Mania Rating Scale designed by Young et al. (frequently referred to as the YMRS). The YMRS is more well-known and widely used, but because it was written in 1978, it does not include all of the symptoms of mania from ICD-9 or ICD-10 (nor DSM-IV or DSM-5), as it predated them all. The YMRS was also designed for completion by nurses at the end of their eight-hour shift on an inpatient unit, observing adult patients. The KMRS has several advantages in comparison: It covers all the symptoms used in current versions of ICD and DSM, it was designed for use with children and teenagers, and it was written and validated as an interview. Studies have found excellent internal consistency and inter-rater reliability, as well as exceptionally high correlation with the YMRS. Similarly, the KDRS would be analogous to the Child Depression Rating Scale-Revised. The CDRS-R was also designed to be done as an interview, but the item content predates the current ICD and DSM and omits some important symptoms. The KDRS also shows strong reliability (internal consistency and inter-rater) and exceptionally high correlations with the KDRS.

Impact

The K-SADS is used to measure previous and current symptoms of affective, anxiety, psychotic, and disruptive behaviour disorders. The K-SADS has become one of the most widely used diagnostic interviews in research, particular for projects focused on mood disorders.

The K-SADS-PL has been written and translated into 16 different languages, including Korean, Hebrew, Turkish, Icelandic, and Persian. The K-SADS-PL is also available in several Indian dialects including Kannada, Marathi, Tamil and Telugu.

Limitations

One limitation of the K-SADS is that it requires extensive training to give properly, including observation techniques, score calibration, and re-checks to test inter-rater reliability.