In Focus:

Understanding the Onset of Psychosis Among Youth & Young Adults

In Focus: Understanding the Onset of Psychosis Among Youth & Young Adults

By Aubrey M. Moe, PhD & Melissa F. V. Kilicoglu, MA
The Ohio State University

What is Psychosis?

Psychosis describes a collection of symptoms that can cause alterations in a person’s thinking, perception, and experience of reality. Notably, psychosis is not diagnostically specific to any single illness. Instead, there are multiple underlying causes and psychiatric illnesses that may be characterized by psychosis. For example, individuals with diagnoses of schizophrenia, schizoaffective disorder, and/or some mood disorders (e.g., bipolar disorder or major depressive disorder with psychotic features) may all experience symptoms of psychosis. Though there is significant variation across individuals with regard to how symptoms of psychosis are experienced and expressed, symptoms of psychosis tend to fall into several characteristic clusters or domains.

Positive symptoms include hallucinations and delusions, which are often considered the hallmark signs of psychosis as they contribute to serious changes in perception and reality testing. Negative symptoms describe diminished experiences of different emotional, behavioral, and cognitive processes that can lead to reduced motivation, reduced experiences of pleasure, and changes in the expression and/or experience of emotions. People with psychosis also tend to experience changes in cognition, including impairments across thinking skills like attention, memory, and organization/planning. In addition to positive, negative, and cognitive symptoms of psychosis, youth who experience the onset of psychosis also have high rates of comorbid anxiety, depression, and substance use disorders (Sim et al., 2004) and tend to experience serious difficulties in interpersonal and social functioning (Moe, Pine, et al., 2021; Moe, Weiss, et al., 2021).

How Does the Onset of Psychosis Impact Youth?

The initial onset of psychosis tends to occur in the late teenage or early adult years of life. These same years of life are represented in the developmental phase of “emerging adulthood” (Arnett, 2000), which describes the unique period of life that bridges adolescence into early adulthood. Emerging adulthood is a phase of life characterized by exploration of identity, relatedness to others, and various transitions related to growth and movement toward personal meaning in interpersonal and occupational activities. While often exciting, these normative experiences are simultaneously notable for their heightened instability. Thus, the onset of a major mental health difficulties like psychosis during a developmental period already notorious for uncertainty can have important and reverberating impacts. For example, youth with the recent onset of psychosis often experience instability in their interpersonal relationships, with studies noting that young adults tend to have smaller social networks and fewer peer relationships relative to unaffected youth. The onset of psychosis can also lead to removals from the social environment that can limit or interfere with normative social experiences that are key milestones in emerging adulthood.  Some young people experiencing the onset of psychosis, for example, may require prolonged psychiatric hospitalization or intensive mental healthcare services that may disrupt completion of educational goals or milestones (e.g., graduating high school, starting or staying in college), occupational pursuits (e.g., getting and keeping a job), and development of social skills needed to form and maintain friendships in the increasingly complex social landscape of early adulthood. Thus, efforts to comprehensively address the various needs of youth experiencing the onset of psychosis must extend beyond the management of psychiatric symptoms to also focus on other aspects of illness-related dysfunction – including the domains of social and interpersonal functioning (Breitborde & Moe, 2019; Moe & Breitborde, 2019).

It is also important to recognize that youth with psychosis are at elevated risk for suicide and suicide-related behavior – including suicidal ideation, self-injury, and suicide attempts (Barbeito et al., 2021). Sadly, approximately 25-50% of individuals who experience psychosis attempt suicide during the course of the illness (Meltzer, 2001), with 5-10% of these individuals dying by suicide (Hor & Taylor, 2010). Though it has been recognized that risk for suicide is highest among young people early in the course of a psychotic illness (Olfson et al., 2021), more recent data suggest that this period of risk is most elevated in the first 3 months following an initial diagnosis of psychosis (Moe et al., 2022). Thus, efforts to swiftly connect individuals experiencing psychosis to psychosocial support and early intervention services may be an important strategy to mitigate risk for suicide and self-harm.

How to Support Youth with Recent Onset Psychosis

While existing data suggest that the majority of the decline and difficulty in a person’s functioning will occur during the first few years following the initial onset of psychosis, these early years of illness are at the same time a “critical period” during which specialized early intervention services are most effective in relieving psychiatric symptoms and improving important functional outcomes (Birchwood et al., 1998; Bowie et al., 2014; Dixon et al., 2018; Kane et al., 2016; Perkins et al., 2005). Specialized early interventions for psychosis – often called Coordinated Specialty Care (CSC) in the United States – are multicomponent treatment packages that provide comprehensive care for the young person experiencing psychosis as well as their families and key support providers. Though specific interventions vary across CSC programs, the majority of CSC services will provide psychotherapy, medication management, educational/occupational services, and family psychoeducation or support. There has been a rapid proliferation in the availability of CSC programs in the United States in the past 10-15 years, with an estimated 160+ programs now operating across the country (Read & Kohrt, 2021).

Approaches to providing services to young people experiencing the onset of psychosis – including CSC – recognize that this type of care works best when individuals are empowered to: 1) make decisions about their own care, and 2) consider their unique needs, strengths, and preferences in crafting their personal vision of recovery. Shared-decision making is a key component of empowering young people with psychosis by recognizing that the individual retains the ultimate say in decisions about their treatment, with collaborative guidance and input from their treatment providers (Mueser et al., 2015). Next, a recovery-oriented approach to care recognizes that individuals with psychosis each have unique challenges and strengths as well as personalized preferences for what they would like to address as part of their care. For example, many young people with psychosis have goals for treatment that have little to do with or extend far beyond the experience of psychiatric symptoms – including goals related to making friends, engaging in and finishing school, and finding meaningful occupational activities. As CSC programs provide multiple different services that can extend beyond management of symptoms and that specific interventions are selected by the individual experiencing symptoms of psychosis, CSC programs can promote a personalized, empowering, and holistic experience of treatment.

To learn more about Coordinated Specialty Care (CSC), including how to find CSC programs in your area:

https://medicine.osu.edu/departments/psychiatry-and-behavioral-health/epicenter

https://www.nimh.nih.gov/research/research-funded-by-nimh/research-initiatives/recovery-after-an-initial-schizophrenia-episode-raise

https://strong365.org/find-support/professional-support/psychosis-support-provider-directory#map

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