Early in my career, I focused my clinical work on developing and delivering psychosocial treatments for persons with serious mental illness. I became interested in the trajectory of what happens when a person experiences first-episode psychosis and develops schizophrenia. How could we improve recovery in that population? While pursuing a graduate degree in Psychiatric Rehabilitation, I saw firsthand that people with schizophrenia are underserved, and not enough information regarding the illness is provided to graduate students in mental health. Research has shown that little time or curriculum is devoted to persons with serious mental illness in graduate mental health programs. Yet, schizophrenia is behind only heart disease in terms of health care costs in the U.S.
There’s an unfortunate perception that people with schizophrenia are dangerous and should be committed to hospitals. In reality, it’s quite the opposite. People with schizophrenia are much more likely to be the victim of a crime than the perpetrator. It’s a misconception that is continually reinforced in the media. Unfortunately, there have been some incidents in the media recently that have highlighted persons with mental illness, but more often these incidents highlight a breakdown in accessing mental health treatment– something that isn’t talked about enough. Despite these challenges, recovery-oriented services have become an important component in the U.S. mental health system and across the span of the illness, especially in the beginning when a person experiences their first episode.
Navigating New Pathways: The RAISE Project
In 2009, the Recovery After Initial Schizophrenia Episodes (RAISE) project was created. It was, in large part, a response to major research and early intervention treatment systems that had been developed in other countries – work still very early in the process in the United States. Thanks to the foresight of the National Institute of Mental Health (NIMH) and Robert Heinssen, director of the Division of Services and Intervention Research, they funded two research teams that developed treatments aimed at reducing long-term disability. I was part of the RAISE Early Treatment Program (ETP), which evolved into NAVIGATE.
NAVIGATE is a multi-component, team-based treatment study involving a combination of psychosocial treatment and medication management, with the primary objective of improving quality of life and long-term disability in persons with first-episode psychosis aged 40 and younger. This focus on quality of life was significant; RAISE and the NIMH agreed this should be the primary focus because most research regarding schizophrenia and first-episode psychosis was centered on symptoms and not outcomes. The study was implemented in 17 sites receiving NAVIGATE and 17 community care control sites in more than 20 states across the country. As part of the RAISE-ETP team, we wanted to find out how our comprehensive treatment would compare to current treatment and care in terms of positive outcomes. We enrolled more than 400 people and followed them for two years. Those people experienced the four main components to NAVIGATE’s multifaceted approach:
- Medication Management: We focused on providing low dosage while managing side effects, which a young person early in their psychosis experience is prone to have.
- Supported Employment and Education (SEE): SEE is important, because the ultimate goal of NAVIGATE is to reduce the disability and change the patient’s trajectory – which isn’t easy to access through traditional mental health systems. This is crucial because we know that the goals of a young person are centered on going back to work and school.
- Individual Resiliency Training (IRT): IRT is the individual therapy component that I was most closely involved with. We viewed this as an opportunity to help people get back on track by teaching them self-management skills for their illness. Oftentimes, the experience of first episode psychosis can be traumatic. Traditional systems offer very little support for that, so NAVIGATE offers specific methods to help process that trauma and reduce the self-stigma that is often associated with early psychosis. Positive psychology interventions also have been integrated into IRT to inform and enhance recovery.
- Family Education Program: The unique aspect about targeting this younger population is that we had more than 70% of our sample either living with their family or very closely connected to their family. That’s often not the case with people who have had multiple episodes or experienced the illness for a long period of time. By engaging the family, offering them a core amount of education, and teaching them communication and problem solving skills, we can prepare families for whatever the recovery journey ahead may look like.
Our results were published in October in the American Journal of Psychiatry and our findings confirmed what we’d hoped: those who participated in NAVIGATE saw larger improvements in quality of life. These participants had greater participation in work and school, experienced fewer overall symptoms and stayed in treatment longer.
Additionally, we found that the “duration of untreated psychosis” – the time between the first-episode psychosis and the point where the person begins treatment – is very important to treatment outcomes. Research has shown that the longer someone goes without help, the worse that person’s outcomes are. Our study confirmed the median duration of untreated psychosis in participants was 74 weeks – more than a year of untreated psychosis. Among those who participated in NAVIGATE, people with shorter durations of untreated psychosis experienced better outcomes.
Enhancing Recovery Through Positivity
Building off the success of NAVIGATE, there’s a promising new study that is exploring a mindfulness and positive psychology intervention for people with first-episode psychosis that we are also piloting in Minnesota. It includes some positive psychology elements that are integrated into IRT, but is focused on reducing stress reactivity in participants. We want to help people better adapt to day-to-day hassles and stressful events in their lives.
We received a grant from the NIMH to develop a positive psychology and mindfulness treatment we call Integrated Coping Awareness Therapy (I-CAT). Rather than focusing on remediating symptoms or cognitive deficits, we focus on helping people improve their resilience to stress. We focus on teaching mindfulness strategies to reduce the distress associated with psychosis and positive psychology strategies to generate positive emotions that will buffer against stress. We are aiming to help people find a more adaptive response to stress and to reduce the “Allostatic Load” – the wear and tear that stress has on your body. People with schizophrenia often experience an Allostatic Overload, and they are unable to adequately regulate their response to stress. A normal bell curve occurs when stress is triggered, in most people by building, peaking and receding. For people with schizophrenia, the stress level stays at peak levels longer and only recedes minimally. Over time, this Allostatic Overload contributes to worse trajectories.
Feedback and attendance in our pilot study was very good, with 83% of participants attending the I-CAT sessions. They told us how it helped them enjoy their lives and made them actually look forward to being with people. We saw a significant reduction of psychotic symptoms and stress including improved resiliency, quality of life and wellbeing. That gives us hope that we’re on the right track. In addition, we also plan to collect a battery of biological data – such as saliva, blood and hair – to determine if the intervention creates biological change as well as physiological.
We’ve been approved to continue our research and have enrolled participants in Minnesota. We want to replicate that study here so we can seek out funding for a larger trial.
Know There Is Hope
For those who are struggling with schizophrenia or first-episode psychosis, it’s important to remember this:
- You’re not alone. Psychosis is not as unusual as people think it is. It is a continuum, with people experiencing psychosis in many different ways.
- People can get better with treatment. Despite the stigma surrounding schizophrenia and psychosis, people can recover. There are so many amazing stories of people who have experienced psychosis and have gone on to live happy, healthy lives. It’s important to know that there is hope.
- There are resources. There are options for treatment that are really helpful, and there are many people that want to help others get better. For example, one of the most amazing resources that we are fortunate to have is the University of Minnesota clinic that focuses on first-episode psychosis.
As a result of the RAISE project, the federal government’s mental health block grant funding has been expanded for every state. If you are interested in being trained in the NAVIGATE program, please visit naviegateconsultants.org.
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