You are a person who can change the future for millions of people who experience or will experience psychosis or serious mental illness (SMI). How, precisely? We don’t know – that’s on you. This book will summarize how we got where we are, what’s currently promising, and in what directions our history and evidence point us. Armed with this knowledge, we anticipate you will be a change agent.
This chapter provides a “frame” in which the following chapters, written by experts in SMI and psychosis, may coalesce and help clinicians assist the individuals they serve to live more fulfilling lives. This chapter also briefly introduces perspectives regarding diversity, equity, and inclusion; explanatory models of psychosis; and other topics we could not address in detail in this book.
Recovering the US Mental Healthcare System may parallel personal recovery. Recovery for people and systems requires genuine hope and empowerment, countering stigma and delegitimizing narratives, and listening to lessons from history, science, and people with lived experience. Positive change is unlikely in the absence of frankly accounting for past problems and successes, and learning from mistakes with current innovations in mind. This book samples the history, theory, and evidence base that suggests we can make our country more humane and equitable for people with SMI and psychosis.
Big Picture
We ask readers to hold two seemingly contradictory facts in mind: (1) recovery happens; and (2) SMI is serious. You already know the latter, and it is baked into our culture and systems. So, while both can be true along with every shade of gray between, we should amplify the fact of recovery so that this becomes a more automatic, hope-instilling lens, rather than the current dominant narrative that SMI is a chronic disabling illness.
Fact 1: People with psychosis and/or severe mental illness “recover,” meaning they can live full, meaningful, valuable lives.
Fact 2: Psychosis and SMI can be associated with incredible challenges and burdens on individuals, families, communities, and systems.
Our culture has embraced one fact and mostly ignored the other, and we allocate as much space as possible to the nondominant narrative.
This chapter emphasizes recovery, limitations and failures in healthcare, and how approaches beyond biology are essential to supporting recovery. In so doing, we risk being perceived as invalidating people’s lived experience of severe challenges associated with psychosis, or discounting the work of providers who devote their careers to respectful and effective recovery support. There is no consensus on “messaging” about recovery and psychosis. This is partially because in our society, psychosis, SMI, and all of the challenges that intersect with them are potent barriers to recovery and representation in themselves. More conversations that prioritize voices of people with lived experience are required to simultaneously validate struggle and hold genuine beliefs about recovery. For now, our best answer is to learn from and engage with more first-person narratives of recovery, which contain the reality of and the gray between both facts. We hope to work toward more fact-based and helpful messages about psychosis in our society, acknowledging the tension created by attempting to validate both Fact 1 and Fact 2.
Consistent with prioritizing Fact 1, we will focus on three factors (highlighted in Chapter 7) needed to improve the lives of people with psychosis and SMI:
(1) Hope;
(2) Available effective interventions; and
(3) Changing attitudes to support dignity and autonomy.
As healthcare professionals, we should support people with psychosis and SMI in a manner that increases the likelihood of them experiencing recovery instead of enduring a chronic and disabling illness course, because research shows this is possible. We will talk a lot about effective interventions, but these are impossible without hope and attitude change. Extensive evidence that psychosocial interventions are effective, and that interventions can be implemented supporting (rather than denying) dignity and autonomy supports the convergence of these three factors highlighted in this book.
Target Audience and Language
This book is primarily designed for healthcare professionals and trainees, but we hope it will be useful for other stakeholders as well. The authors are primarily clinical psychologists. The editors and authors have worked together to ensure we cover a range of perspectives (including from people with lived experience) and approaches that will be useful for all readers, but we welcome feedback and questions. We hope this book starts, not ends, a conversation, and that after reading the book you will feel better informed, outraged, hopeful, concerned, motivated, and empowered to play a part in recovering the US mental healthcare system for people with SMI and psychosis.
We acknowledge that some terms we use and stances we take will seem distasteful or even offensive to people whose expertise and opinions we value. We attempt to speak humbly and respectfully in our native academic language (of clinical psychology). Clinical psychology is as guilty of maintaining the problems in the status quo as any mental health profession, if differently guilty (Luigi et al., Reference Luigi, Rapisarda, Corbière, De Benedictis, Bouchard, Felx and Lesage2020; Mueser, Silverstein, & Farkas, Reference Mueser, Silverstein and Farkas2013; Reddy et al., Reference Reddy, Spaulding, Jansen, Menditto and Pickett2010). Medical hierarchy culture and policy often reduces the roles psychologists can play within systems, but the conceptualization and research-to-practice training that characterizes clinical psychology make psychologists particularly valuable in recovery-oriented transformations, consultation, and workforce development.
Ongoing conversation is critical; only through listening to aired grievances and equitable debate between different stakeholders can we change our field, system, and people’s lives. We encourage readers to actively seek out and amplify voices that have been traditionally marginalized and to engage with them because of, rather than despite, differences in opinion. First-person accounts of lived experiences have proliferated with the Internet and social media, and we have found organizations such as ISPS-US, Hearing Voices Network USA, Safe Space Radio, and many, many others invaluable.
“Psychosis” and “SMI” are convenient terms that categorize (and marginalize) an infinite array of experiences that deviate from dominant culture. Here, “dominant” means White, Western, middle-class, heterosexual, educated, suburban, without physical limitations, neurotypical, male-dominated, individualistic, English-speaking, … culture. Hopefully, the number of qualifications listed in the last sentence illustrates another absurdity, or perhaps “dialectic”: Most of us believe that some people are not normal, but “normal” is not real. Chances are, you are too “abnormal” to be anywhere near the “normal American” prototype we have invented. Paradoxically, almost everyone is abnormal in some way. Ten percent of people are left-handed. At least 10% of people have significant psychosis-like characteristics or experiences. More than 40% of people at any given time meet diagnostic criteria for some mental disorder. Mental “disorders” are definitively abnormal. Doesn’t 40% seem a paradoxical rate for something abnormal?
The preceding thought exercise is meant to demonstrate that humans differ dramatically, and dramatic differences are normal, if not always adaptive. This simple fact of humanity is obscured by biases, stigma, and discrimination to which we are all subject. We acknowledge that the term “SMI” is controversial, in part because it implies an illness model. We emphasize “psychosis” as a full range of human experiences, and “SMI” to highlight the severe problems that can be associated with psychosis and other aspects of mental health, mirroring Fact 1 and Fact 2. It is difficult to be “dealt the cards” of mental health in our society. We cannot make assumptions about how much the effect of mental health is due to the “cards” (personal experiences and characteristics) or due to the “game” (society and environment), and it is not always easy to change either the cards or the game.
This book will cite decades of clinical and research evidence, in addition to anecdotal evidence from millions of people’s lives, that demonstrates the fact of recovery and the value of psychosocial approaches (not just medications). Still, most healthcare professionals, healthcare trainees, and the general population think of psychosis and SMI as inherently disabling, chronic brain disorders for which palliative medication and hospitalization are the only things that can help (which is, of course, false).
In healthcare professionals, this large “blind spot” is a classic example of institutionalized stigma maintaining itself over time. Much has changed in mental health science and practice in the past century, but the marginalization of people with psychosis or SMI has mostly shifted locations rather than practices or mindsets. Now, jails and prisons are the largest US mental healthcare providers, and community mental healthcare is primarily guided by risk management rather than prevention or rehabilitation. In this context, professionals are most likely to work with people with psychosis or SMI briefly in acute inpatient units, competency restoration services, or other brief services focused on medical goals of stabilization with forensic involvement (for more information, see: Spaulding, Sullivan, Evans, & Avila, Reference Spaulding, Sullivan, Evans and Avila2021). Within, and with limited exposure outside these contexts, people with psychosis and SMI are viewed as risks, liabilities, or threats. We encourage viewing people with psychosis and SMI as what they are: people. The largest proportion of people with psychosis and SMI are living well in the community, not spending much or any time in hospitals and healthcare settings. Institutional settings have likely been traumatizing or been associated with traumatic moments in their lives. Most healthcare professionals in those settings literally don’t see recovery in their training or practice, or they see brief encounters as exceptions to a rule. As described in Chapter 7, stigmatized beliefs contrary to recovery are maintained by most clinical psychology training programs, and they are certainly maintained in popular media and press.
Recovery and Other Models
We will provide evidence that recovery happens, but you may also ask how it happens. As highlighted in Chapter 9, a common definition of recovery, “A process of change through which individuals improve their health and wellness, live a self-directed life and strive to reach their full potential,” hints at an appropriate response (Ellison, Belanger, Niles, Evans, & Bauer, Reference Ellison, Belanger, Niles, Evans and Bauer2018). “How” recovery happens is surprisingly simple – a person’s life situation or environment changes, and how they function in it changes (not necessarily in that order). Disability Studies and related disciplines provide a useful framework for this way of thinking: “medical model” versus “social model.” Heavily oversimplified, the medical model places the “cause” of mental illness within the person, whereas the social model places the cause in external factors. In the social model, the view is that society inadequately accommodates diverse behaviors and characteristics.
Astute mental health professionals may notice a parallel to attribution theory, concerning how humans assume causality for negative or positive outcomes in characteristic and biased ways. These attributions, causal assumptions, or explanatory models operate mostly automatically. That is part of how our society’s bias toward medical model explanations of mental illness is “bakedin” to our perceptions of psychosis and SMI in the face of contradictory evidence. Like with attributional styles, the most helpful ways to think about psychosis and SMI account for both internal (e.g., personality, brain) and external (e.g., discrimination, disparities, luck) attributions. In the absence of hope and changing attitudes to support dignity and autonomy, we only account for mental health challenges as internal to the person, and we are thus unlikely to provide useful support and likely to contradict the humanity of people with psychosis and SMI.
Humanity and Its Aspects: Understanding Person and Context
Humans, including readers of this book, have many aspects. Here, “aspects” is a simpler way to talk about levels of analysis. Paying attention to different levels/aspects helps to understand a person and their context, similar to biopsychosocial or biosystemic formulation. Reducing problems to one aspect of a person (e.g., “soul,” brain, mind, personality, behavior, environment) risks ignoring the others and the complex relationships between them. Assuming that each aspect is separate and that their relationships are ordered or linear causes substantial problems for understanding and helping people. For example, similar to other models of human functioning (e.g., the integrated biosystemic theory from Spaulding, Sullivan, and Poland, Reference Spaulding, Sullivan and Poland2003, or the simple cognitive behavioral therapy triangle), when we act as if the mind and brain, brain and behavior, or even the brain and the body are truly independent (e.g., Cartesian dualism), we ignore the inseparable connections between these aspects, and we are at risk of ignoring the person containing a brain or mind, as well as their life and environment. This book is not intended to help us fix broken brains, organize people’s minds, or remediate problematic behavior. Our aim is for society, policy, and us to truly acknowledge, support, and respect the humanity of people experiencing psychosis or SMI, and as healthcare professionals to support such people and their loved ones to do the same for themselves. Our sociopolitical, institutional, and individual histories have shaped discrimination, stigma, and injustices in all aspects of our humanity that contradict the human dignity of people seen as “other” or “less than,” such as those with SMI or psychosis. We hope this book will help to recognize the flaws we all have in our thoughts, reactions, and behaviors so that we can contradict the injustices that are reflexively inflicted on the people we aim to support.
The symptoms that characterize psychotic disorders are extremes of human experience. Anyone will experience psychosis if they do not sleep for long enough, and most of us have heard sounds that weren’t real, misperceived objects in our environment, felt paranoid, or clung to beliefs that others think are unrealistic. Psychosis is a “continuum,” but we treat the term and the diagnosis like it is “present or not,” and if it is present it is something “other” and distinct from normal human experience. Many people believe that psychoses are brain disorders caused by a chemical imbalance. Of course, the brain is not a soup for which “a little salt will fix it,” but the problem with the chemical imbalance argument is not in pharmacokinetics but in reductionism: reducing recovery or disability to brain chemicals (Hollon, Reference Hollon2020). When psychoses are troublesome enough to be called “disorders,” they are defined by behaviors and reactions to perceptions, thoughts, and emotions. Perhaps then, psychoses are disorders of the brain, a “mind” that is the more voluntary aspect of the brain, and behavior. This would be a more useful conceptualization (or way of understanding a problem), but it ignores several major factors, including the person’s entire history (e.g., what has happened to them); the impact of their situation and immediate context; structural barriers, inequities, or opportunities and privilege; and the ways in which their civil and human rights are treated with indignity, delegitimized, or disempowered in our society and systems. Changing dopamine in one’s brain may indeed help one recover across the full range of human experience, but only to the extent that the existing problems are related to dopamine and that there are known and achievable paths to recover livelihood and dignity. A person and their life recovers, not just a neurotransmitter.
Stigma, Discrimination, and Civil Rights
We hope readers feel semblances between our arguments and civil rights. This is no coincidence. Not only is mental health a civil rights issue, but also the intersections between disparities and discrimination based on mental illness and those based on other characteristics, race, ethnicity, sexuality, etc., overlap to the extent that they cannot be understood independently. We will briefly highlight the intrinsic overlap between working for the rights of people with SMI and psychosis and working toward diversity, equity, and inclusion, but we encourage readers to pursue further training and experience beyond the scope of this book.
Corrigan, Markowitz, and Watson (Reference Corrigan, Markowitz and Watson2004) describe that there are both intentional and unintentional consequences of structural and institutional discrimination that often diminish the opportunities available to people with mental illness. These can occur both at a macro and at a micro level. As previously mentioned, and for a myriad of reasons, prisons and jails are one of the most common places where individuals with mental illness live. The Medicaid Inmate Exclusion Policy is one example of structural discrimination that contributes to this, through the policy of suspending or terminating access to Medicaid when an individual is incarcerated. This suspension leads to gaps in treatment following release and may subsequently lead to higher recidivism because people are unable to access behavioral healthcare (which is sometimes an essential aspect of their conditional release) in the community (Albertson, Scannell, Ashtari, & Barnert, Reference Albertson, Scannell, Ashtari and Barnert2020). Hence, a “revolving door” is created in which individuals reenter the “criminal justice” system because they did not have access to mental health resources for succeeding in the community.
At the micro level, self-stigma that develops as a result of “buying into” (i.e., internalization of) the public’s stigma of mental illness is also associated with negative outcomes. Rüsch et al. (Reference Rüsch, Corrigan, Wassel, Michaels, Larson, Olschewski and Batia2009) conducted a study with individuals diagnosed with psychotic spectrum disorders and found that people who perceived discrimination as legitimate (i.e., perceived that their group’s lower status based on mental illness was fair and legitimate) were less likely to seek psychotherapy services compared to those who perceived discrimination as unfair and illegitimate. On the contrary, people with high self-stigma were more likely to be hospitalized. As such, Rüsch et al. (Reference Rüsch, Corrigan, Wassel, Michaels, Larson, Olschewski and Batia2009) suggested that “stigma resilience,” the ability to reject public stigma, was more conducive to ongoing and preventive services, whereas accepting and internalizing public stigma (i.e., self-stigma) could increase the likelihood of needing to use emergency hospitalization services. In these ways, structural and institutional discrimination lead to poorer prognosis. We encourage readers to learn more about factors and interventions that target self-stigma (e.g., Bogart, Lund, & Rottenstein, Reference Bogart, Lund and Rottenstein2018; Lucksted et al., Reference Lucksted, Drapalski, Calmes, Forbes, DeForge and Boyd2011).
In addition to discrimination and stigmatization based on illness, some individuals experience what Gary (Reference Gary2005) termed “Double Stigma,” which is the overlapping membership in two or more groups that face prejudice and discrimination. This is an example of “intersectionality.” Intersectionality is the examination of the ways in which living in more than one category of race, sex, and national origin, among others, might play out (Crenshaw, Reference Crenshaw1989; Delgado & Stefancic, Reference Delgado and Stefancic2017). As it relates to this discussion, that overlap might be in SMI and a racial or ethnic minority group. Such intersection would lead to discriminatory experiences based on mental illness and discriminatory experiences related to that person’s race/ethnicity. Research based on medical and prescription claims data shows that even when accounting for insurance and socioeconomic status, Black and Hispanic individuals are less likely to receive outpatient behavioral healthcare services prior to a diagnosis of first episode psychosis (Heun-Johnson et al., 2020), making them less likely to receive timely care and more likely to suffer long-term consequences as a result of untreated psychosis. In addition, results from focus groups have found that Black individuals fear a reality of interconnected systems of oppression; having been oppressed at several institutions (e.g., medical, criminal justice), they expect the same oppression to come from mental health treatment settings (Alang, Reference Alang2019). Further, Hispanic Americans are less likely to both seek care and receive adequate care when they do. Some of the barriers that have been reported include discrimination, lack of health insurance, low acculturation, endorsing self-reliant attitudes, not knowing where to seek services, and protective factors such as large supportive networks (Cabassa, Zayas, & Hansen, Reference Cabassa, Zayas and Hansen2006; S. R. López, Barrio, Kopelowicz, & Vega, Reference López, Barrio, Kopelowicz and Vega2012). Overall, it could be that people who live in intersections of marginalized groups are even less likely to seek psychological help than others who experience oppression for belonging to one marginalized group.
A spotlight was shone on this intersection of mental illness and race due to national attention on several Black Americans killed by police in 2020. Police-perpetrated deaths have occurred more frequently to Black individuals (Edwards, Lee, & Esposito, Reference Edwards, Lee and Esposito2019; Rollins Jr, Reference Rollins2019), to individuals with mental illness (Dempsey, Quanbeck, Bush, & Kruger, Reference Dempsey, Quanbeck, Bush and Kruger2020; Frankham, Reference Frankham2018), and to individuals at those intersections (Cross et al., Reference Cross, Mulvey, Schubert, Griffin, Filone, Winckworth-Prejsnar and Heilbrun2014). In fact, people with SMI account for one in four victims of police-perpetrated deaths (Fuller, Lamb, Biasotti, & Snook, Reference Fuller, Lamb, Biasotti and Snook2015). At the time of this writing, Daniel Prude, a Black man with mental illness, died in the hospital following complications after a police-involved psychiatric emergency response in which the police put a bag over Mr. Prude’s head and pressed it into the pavement. Understandably, Black individuals are less likely to seek police assistance after witnessing police misconduct, brutality, and police-involved deaths (Desmond, Papachristos, & Kirk, Reference Desmond, Papachristos and Kirk2016). As such, Black families may be more hesitant to enlist police help even when their loved one’s mental health symptoms necessitate emergency assistance. As Muhammad (Reference Muhammad2020) poignantly writes, interactions between a Black man with SMI and police are “doubly fraught with peril.” Nonetheless, she describes that the alternative to not calling the police in a psychiatric emergency might result in worsening psychosis; thus, “… we make the call and pray.”
Another timely example of the present inequity has surfaced in the context of the Coronavirus 2019 (COVID-19) pandemic. The COVID-19 pandemic has increased levels of stress, depression, anxiety (Rajkumar, Reference Rajkumar2020), and suicidality (Gunnell et al., Reference Gunnell, Appleby, Arensman, Hawton, John, Kapur and Caine2020; Sher, Reference Sher2020), and particularly vulnerable are people with SMI (Hamada & Fan, Reference Hamada and Fan2020). Nemani et al. (Reference Nemani, Li, Olfson, Blessing, Razavian, Chen and Goff2021) found that among people who tested positive for the virus and had either schizophrenia spectrum, mood, or anxiety disorder, only a diagnosis in the schizophrenia spectrum was significantly associated with mortality; a schizophrenia spectrum diagnosis was the second strongest factor associated with mortality (strongest predictor was age) and individuals with this diagnosis had 2.7 times the odds of dying. Moreover, the COVID-19 pandemic is disproportionately affecting Black individuals (Millett et al., Reference Millett, Jones, Benkeser, Baral, Mercer, Beyrer and Crowley2020), via social determinants of health (e.g., income, incarceration rate, percent of households without Internet; Dalsania et al., Reference Dalsania, Fastiggi, Kahlam, Shah, Patel, Shiau and DallaPiazza2021) and structural racism (Tan, deSouza, & Raifman, Reference Tan, deSouza and Raifman2021) which might jeopardize their mental health in particular, compared to groups that are less affected by this pandemic. To our knowledge, there are no empirical studies that examine the interaction between race and SMI as it relates to COVID-19 mortality; however, one might hypothesize that racial and ethnic minorities with SMI are at a higher risk of mortality following COVID-19 than White individuals with non-SMI diagnoses.
As such, while this book focuses broadly on SMI without distinguishing the nuances of diversity’s role in its treatment, we want to highlight the need for culturally-informed practices, rather than general practices, if we are to increase mental health access to marginalized groups. For example, culturally-informed strategies have been successful in disseminating psychosis literacy among the Spanish-speaking Latinx community (López et al., Reference López, Lara, Kopelowicz, Solano, Foncerrada and Aguilera2009) and in producing culturally-informed, evidence-based treatments for people with schizophrenia (Weisman de Mamani, McLaughlin, Altamirano, Lopez, & Ahmad, Reference Weisman de Mamani, McLaughlin, Altamirano, Lopez and Ahmad2020). However, more work in these areas is needed. In a Call to Action, Mote and Fulford (Reference Mote and Fulford2020) urged that SMI researchers highlight and critically examine race in their studies to better address the “unique challenges of the Black SMI community” brought on by issues of racism in the US that have affected and continue to affect our clients. Moreover, at an organizational level, the American Psychiatric Association (2021) issued an apology statement in which they recognized their contribution to structural racism in practices such as racialized theories of deficit, and variations of schizophrenia-spectrum diagnoses in Black, Indigenous, and other Persons of Color compared to White individuals. They further pledged to take remedial steps by working to enact anti-racist practices. While the intention to remedy these injustices is a step in the right direction, concerted efforts to design culturally-informed treatment that is developed with and for the communities in need will likely be an integral part in building trust with marginalized communities so that they may begin to experience hope and recovery.
Diagnostic Injustice
We return to the argument that recovering the US mental healthcare system for people with SMI and psychosis depends on recognizing recovery and the role of supporting people at every level. Mid-twentieth century research showed that simply making an inpatient unit more livable – i.e., like a place modern humans would live – substantially influences the prosocial behavior of people whose diagnosis previously discounted the possibility of prosocial behavior (Zarlock, Reference Zarlock1966). For the researchers among us, the effect sizes for this and similar studies are the envy of most clinical trials for medication or psychotherapy, for potentially obvious reasons – the way we tend to treat people with psychosis and SMI perpetuates and sustains behavior consistent with chronic, disabling mental illness, regardless of the degree to which the person’s experiences or characteristics actually cause chronic, disabling illness. People hospitalized with psychosis are often functionally treated as inhuman, or at least delegitimized in their autonomy (“epistemic injustice,” see Chapter 8). For the delegitimized person, the most adaptive response is often to embrace a lifetime of being a “patient.” This was traditionally called “the patient role” and has been more recently elaborated in anti-stigma and empowerment literature with ideas including “identity engulfment” (Corcoran, Reference Corcoran2016; Dubreucq, Plasse, & Franck, Reference Dubreucq, Plasse and Franck2021; Link & Phelan, Reference Link and Phelan2001).
In the past, and unfortunately still in some cases today, people entering the system after a first experience of psychosis are given three messages: (1) You are disabled and will never work again or finish school; (2) You will always have to take psychiatric medications; and (3) This disorder is permanent and episodic. Before discussing, we invite readers to think through the implications of these messages and their context. Consider the power differentials at play; restrictiveness, control, or visibility of hope in the settings; effects of having just experienced extremes of psychosis for the first time; and heavy impact of a psychotic disorder diagnosis. If your doctor was telling you these things in that situation, what would it mean to you?
Most of our readers should see these three messages as a “strawman fallacy,” where we are arguing against a distorted (here, outdated) problem. The term “message” was chosen carefully – a message is perceived, not necessarily stated. Further, this book is predicated on the idea that our history can shape our assumptions and beliefs in pernicious ways. We encourage readers to think deeply about the relatively strong points made in this chapter to identify ways in which our individual and institutional practices reflect biased assumptions or purvey harmful messages. In other words, avoiding the three literal phrases above is not enough. Real change requires not only recognizing the ingrained biases in our personal and cultural psyche, but also actively challenging and contradicting them.
Discussing these three messages (i.e., you will never work, you need medications, and it is permanent) with trainees inevitably leads to debate. What if it is true? What if the alternative is glossing over the real implications of a severe diagnosis? Isn’t it better for a person to hear these messages in a safe place than after they are discharged? These reactions demonstrate the power of Fact 2 (severity) over Fact 1 (recovery) in our reactions even to the thought of diagnoses like schizophrenia. They also demonstrate how genuine concern and desire to support people with psychosis can turn well-intentioned messages away from recovery and toward identity engulfment. From a motivation perspective, these statements offer nothing to elicit “change talk” toward valued activities and roles. From a cognitive therapy perspective, the use of “never,” “always,” and “permanent” are clear sign that these messages are in some way irrational and biased.
Even if all professionals use more recovery-oriented messaging, the stigmatized beliefs that drive those three statements remain powerful in our culture. For example, if a person was diagnosed with schizophrenia but recovers or lives their life without medications and hospitalizations, we often assume that they were “misdiagnosed.” This logic would affirm that a schizophrenia diagnosis means one will never recover. Many people have been misdiagnosed in pernicious ways (Metzl, Reference Metzl2010), but psychotic disorder diagnoses are so dangerous because we assume they are untreatable, hopeless, and result in incompetence.
We invite readers now to imagine hearing the three phrases above, and then being told “You lack insight into your illness, meaning you are not aware of your symptoms. You cannot be safely discharged until you’ve developed some insight.” Chapter 8 will provide more depth, but it is a thorny issue worth mentioning. Lack of awareness of symptoms (or lack of insight) is thought of as an important feature of schizophrenia that predicts poor prognosis. The idea is linked to anosognosia – for example, if a person loses an arm and wonders why that hand won’t grasp their coffee, or if a person loses the ability to speak coherently and doesn’t know why no one can understand them. For people with psychosis, recovery is indeed more difficult for a person who does not realize their reality and experience conflicts with that of those around them. This is also true of other psychiatric problems. For example, if a socially anxious person does not believe their social-evaluative perceptions may be biased, it is more difficult for them to overcome anxiety and avoidance, or if a depressed person is unaware of or unable to process any way to interpret the world other than in a pessimistic and self-defeating manner, their depression is self-sustaining. However, the nature of “insight” as applied to SMI is interpreted as more severe and all-encompassing. The possibility of “diagnosing” a person with psychosis as “lacking insight” wagers their legitimacy and autonomy on one check box of a psychiatric evaluation form. If a person is deemed to lack insight, their role in making decisions about their life and treatment is relinquished, and the power is entirely in the hands of others. This can create a paradox for the person – having hope or believing one is getting better can be interpreted as evidence of a lack of insight. What consumers often take away from their clinical experiences is a Catch-22 message along the lines of: You’re in psychiatric treatment because you’re crazy. Being crazy means you are not rational. If you think you are better and can leave the hospital/treatment, it is a sign that you are crazy AND you do not know it. If you weren’t crazy, you would not be in the hospital/treatment. If you’re crazy, you will never be not crazy. Therefore: If you try to leave, it’s because you’re crazy. If you stay, it’s because you’re crazy. On the other hand, there is little evidence to suggest that “gaining insight” facilitates recovery. Healthcare professionals thus have the power to take away a person’s autonomy and hope. This is a topic of much discussion from clinical, legal, and ethical perspectives, but it cannot be denied that having the power to remove a person’s autonomy bears heavy responsibility and risk.
Building Both Empathy and Hope
At this point, it may be worthwhile to emphasize the more “medical model” perspective that we have purposefully underemphasized. Placing blame on our healthcare system is warranted because it needs to change, but this is not the whole truth and risks minimizing the distress sometimes associated with psychosis. Human minds and brains are amazing and terrible things – your brain will incorporate and “make sense” of any input, or anything that happens. Psychological and behavioral distress often result when either the input is incomprehensible, or the way information is integrated causes problems. For example, imagine that your negative inner monologue became louder and eventually became a recognizable external voice, or that coincidences kept happening that all point to an unthinkable threat to you and yours. Even if you maintain the belief that hearing voices or conspiracy beliefs are “not real,” you would experience them, and your experience is your reality. Your mind would make sense of the experiences, and previously incomprehensible experiences are explained by previously incomprehensible beliefs. Terms like “unshared beliefs” and “nonconsensus experiences” are particularly useful to discuss realities that may cause significant problems and distress. It is not our place to determine others’ reality. Some of the harm that has been done by otherwise well-meaning clinicians has been caused by their training to discount and ignore “psychotic” realities. Empathy and understanding must be accompanied by genuine hope and respect if we are to support people whose realities are so acutely distressing.
There is a growing evidence base supporting the need for healthcare professionals to develop empathy, respect, and hope toward people with psychosis, and one of the most promising approaches is listening to and engaging with people who have experienced the bad and good of psychosis and recovery (Amsalem et al., Reference Amsalem, Yang, Jankowski, Lieff, Markowitz and Dixon2020; Holttum & Hayward, Reference Holttum and Hayward2010; Tsoi et al., Reference Tsoi, Chan, Chui, Hui, Chang, Lee and Chen2020). Simply reading a first-person narrative or watching a YouTube video (e.g., “Beyond Possible: How the Hearing Voices Approach Changes Lives”) has some effect. Research and anecdotal experience suggest in-person engagement with a person with lived experience has the most lasting impact (Bromage et al., Reference Bromage, Encandela, Cranford, Diaz, Williamson, Spell and Rohrbaugh2019; Mabe, Ahmed, Duncan, Fenley, & Buckley, Reference Mabe, Ahmed, Duncan, Fenley and Buckley2014). Other approaches have significant power for empathy and respect. Pat Deegan created the first, to our knowledge, audio recording meant to simulate a day of life with auditory hallucinations, and spending a day with “voice simulation” on one’s headphones has had an incredible impact on students and professionals (Dearing & Steadman, Reference Dearing and Steadman2009; Smith, Tamburrino, Naskar, Lynch, & Chen, Reference Smith, Tamburrino, Naskar, Lynch and Chen2014). The way in which people attribute the “cause(s)” of mental illness also has a significant impact on ability to embrace both empathy and hope. These “explanatory models” are strongly influenced by culture (Brown & Brown, Reference Brown and Brown2020; Weisman & López, Reference Weisman and López1997). Historically, in the early days of the National Alliance on Mental Illness (NAMI), advocates rallied to reject the prevalent “moralistic” psychoanalytic explanatory models including “schizophrenogenic parent” theories, collaborating with biological reductionist psychiatric explanatory models, which are often called “biogenetic” models. Unfortunately, the biogenetic assumption of a permanent brain-based disorder may encourage sympathy but negates hope and respect. Accordingly, NAMI has since worked to destigmatize its approach and advocacy. The most popular alternative explanatory models are psychosocial and vulnerability-stress, and although it is clear that these ways of thinking are less stigmatizing than a purely biogenetic or moralistic model, it is unclear how much training from these perspectives changes stigmatized beliefs (Schlier, Lange, Wiese, Wirth, & Lincoln, Reference Schlier, Lange, Wiese, Wirth and Lincoln2016; Schlier, Schmick, & Lincoln, Reference Schlier, Schmick and Lincoln2014). It seems probable that individuals’ experiences of psychosis and recovery are so heterogeneous, and explanatory models are so broad and flexible, that it is easy to fall back on systemic biases based on socially-accepted biogenetic models without entirely discarding the “social” or “environmental” role in a vulnerability-stress model. Reframing how we view psychosis and SMI in a broader model that incorporates both “social” and “medical” models is likely necessary but insufficient to combat deeply ingrained stigma.
Cognitive Behavioral Therapy, Psychosocial Rehabilitation and Recovery, and Evidence-Based Practice in Context
In this book, we hope to summarize a large and longstanding evidence base to bring home the fact of recovery and the necessity of psychosocial supports. “Psychosocial” support addresses social factors and individuals’ thinking and behavior, not targeting brain chemistry exclusively. The research evidence for psychosocial supports and recovery does not discount biological components of mental health but is a crucial counterbalance to purely biogenetic models of psychosis and SMI. We believe strongly in the necessity of science, practice, and bringing the two together. The most common model for bridging science and practice is Evidence-Based Practice, a model borrowed from physical medicine (Goodheart, Kazdin, & Sternberg, Reference Goodheart, Kazdin and Sternberg2006). While this model nominally emphasizes “patient preferences and characteristics,” suggesting tailoring and shared decision-making, it is inherently built on a medical model perspective. There is much debate about applying evidence to practice for psychological problems, although we are not aware of a broadly embraced and effective alternative model. Instead, professionals must be critical consumers of research and understand the ways in which accumulated research does and does not apply to a given individual (a process often addressed in clinical psychology training as bridging nomothetic and idiographic information). One significant problem is heterogeneity. The diagnoses most commonly applied to psychosis and SMI, schizophrenia or schizoaffective disorder, bipolar, depression, etc., are not singular, cohesive biological entities. As they say, “If you’ve met one person with schizophrenia, you’ve met one person with schizophrenia,” and the heterogeneity of biological, cognitive, behavioral, social, and environmental challenges and processes between people with these diagnoses is so wide that it is impossible that any given treatment will “work” for everyone (Spaulding, Sullivan, & Poland, Reference Spaulding, Sullivan and Poland2003). Most psychosocial treatments that are nearly risk-free and objectively “good” ideas (e.g., practicing emotion recognition and social interactions) can change some people’s lives, but in aggregate (across many participants in a research study) have positive but small effects overall that are not long-lasting (Dark et al., Reference Dark, Scott, Baker, Parker, Gordon, Newman and Penn2020; Kurtz, Gagen, Rocha, Machado, & Penn, Reference Kurtz, Gagen, Rocha, Machado and Penn2016). The National Institute of Mental Health (NIMH) has realigned its research priorities with specific processes rather than diagnoses. In addition to other problems with NIMH’s Research Domain Criteria (RDoC), even when recruiting people for a specific problem rather than a diagnosis, psychosis and SMI clinical research often has relatively small, short-lived effects. Part of the problem is that recovery for many people doesn’t happen in a vacuum or in the constrained time period of a clinical trial. It is not clear how much time and effort, or other services or resources would be required to make a substantial, measurable change, or for whom a specific treatment approach would be most useful. Some people with SMI have been “in the system” for decades, and substantial change would mean tearing down and attempting to rebuild their identity and lifestyle – an expectation that is unreasonable for most people. Further, as suggested by Maslow’s hierarchy of needs and modern versions thereof, people are unlikely to complete thought logs, practice mindfulness, etc. when other barriers are more pressing. Issues associated with legal status, home environment, transportation, housing, substance use, and other barriers often interact with symptoms and psychosocial targets of treatment. When professionals’ goals are to “treat” psychosis and “cause” recovery, we are likely not only to be unsuccessful but also to ignore important aspects of a person’s full humanity. Unfortunately, it is difficult to design clinical research whose outcomes extend beyond these goals. To be clear, there is a large evidence base for empirically-supported psychosocial approaches to support people with psychosis and SMI (Mueser et al., Reference Mueser, Silverstein and Farkas2013), but the evidence-based practice perspective may not perfectly serve the development, evaluation, and implementation of recovery supports.
Due to perceptions of risk, the past half-century of evidence for psychosocial approaches to psychosis and SMI has largely ignored the fact that many people prescribed antipsychotics will stop or will never take them (Mitchell & Selmes, Reference Mitchell and Selmes2007). Although research and programs are being developed to test approaches without medication (Francey et al., Reference Francey, O’Donoghue, Nelson, Graham, Baldwin, Yuen and McGorry2020; Morrison et al., Reference Morrison, Pyle, Maughan, Johns, Freeman, Broome and MacLennan2020), most of the evidence is difficult to translate without knowing how antipsychotics or the lack thereof impact psychosocial treatments. Common “comorbidities” such as substance use, homelessness, medical illness, or intellectual disabilities are well-studied but further complicate translating research to practice. On the other hand, while comorbid problems are prevalent and key barriers to recovery for people with SMI (Hartz et al., Reference Hartz, Pato, Medeiros, Cavazos-Rehg, Sobell, Knowles and Pato2014; Shevlin et al., Reference Shevlin, Murphy, Read, Mallett, Adamson and Houston2011; Villa, Ehret, & Depp, Reference Villa, Ehret and Depp2019), people with psychosis or SMI are often not offered evidence-based interventions to address these problems. Despite the broad research base showing that cognitive behavioral therapy (CBT) approaches are effective when adapted to psychosis, evidence-based approaches to problems like PTSD are delayed by decades for people with psychosis (Swan, Keen, Reynolds, & Onwumere, Reference Swan, Keen, Reynolds and Onwumere2017). This is partially due to the small workforce specialized in psychosis or SMI, but it is also due to “psychosis” being excluded from many clinical trials due to stigmatized perceptions of risk, dangerousness, or inappropriateness, despite clear evidence that actual predictors of these problems would mediate risk, whereas a “psychosis” diagnosis by itself is a poor predictor of risk (Elbogen, Beckham, Butterfield, Swartz, & Swanson, Reference Elbogen, Beckham, Butterfield, Swartz and Swanson2008; Swanson, McGinty, Fazel, & Mays, Reference Swanson, McGinty, Fazel and Mays2015). Psychiatric disorders are also generally excluded in medical trials, perpetuating health inequities (Humphreys, Blodgett, & Roberts, Reference Humphreys, Blodgett and Roberts2015). The need to simultaneously support problems related to psychosis, medical issues, trauma, and substances is clearly delineated in US policy and litigation, but a diagnosis like schizophrenia seems to “overshadow” clinicians’ and researchers’ decision-making (Magliano et al., Reference Magliano, Read, Rega, Oliviero, Sagliocchi, Patalano and D’Ambrosio2011).
Considering all these limitations, we need a broad framework for supporting people that can incorporate evidence and empirically supported treatments (often called “Evidence-Based Psychotherapies” or “EBPs”) without negating aspects of their history, life, and humanity.
CBT was initially designed as an approach and toolset for dyadic or group therapy, and several specific treatments associated with CBT (e.g., Cognitive Behavioral Therapy for Psychosis; Kopelovich et al., Reference Kopelovich, Hughes, Monroe-DeVita, Peterson, Cather and Gottlieb2019) have strong evidence for helping people with psychosis change their approach to the internal and external world to be more consistent with their goals and values. This is supported by a large and growing evidence base, although a large portion of the evidence comes from countries with universal healthcare systems and very different government funding priorities. Recovery-oriented CBT training is an essential element for many professionals involved in supporting people with psychosis. However, CBT in itself does not offer a framework to support a person with psychosis or SMI to address the multisystemic issues they are likely to face via mental health systems and intersectional problems. There is little debate that rehabilitating socioeconomic barriers can greatly improve mental health (Gertner, Rotter, & Shafer, Reference Gertner, Rotter and Shafer2019; Haushofer, Mudida, & Shapiro, Reference Haushofer, Mudida and Shapiro2020), and we need a framework that can address barriers in both the individual and the environment.
Psychosocial Rehabilitation and Recovery (PSR) and the earlier term, Psychiatric Rehabilitation, has been the most effective framework for supporting recovery for decades (as detailed in Section 1 of this book; also see: Barrett, Gill, Pratt, & Roberts, Reference Barrett, Gill, Pratt and Roberts2013; Corrigan, Mueser, Bond, Drake, & Solomon, Reference Corrigan, Mueser, Bond, Drake and Solomon2012). PSR is complex and has many definitions, but we note a few key components. “Rehabilitation” is somewhat different from “treatment.” The targeted outcomes concern success and satisfaction in self-determined social and occupational life goals. Symptoms or diagnosis and their biological and behavioral components are often barriers to these goals. Ideal PSR genuinely values the unique perspectives of every stakeholder in a treatment team, prioritizing above all the individual at the center of rehabilitation efforts. Individualized and collaborative plans incorporate the best evidence-based approaches to overcome identified barriers. We should be clear that no single treatment or framework can (or will) address all the many barriers that people with psychosis and SMI face, and PSR is not a panacea. However, PSR has a substantial, enduring evidence base and is flexible enough to incorporate empirically supported treatment modalities, assessment and conceptualization techniques and models, and different approaches (e.g., shared decision-making or deprescribing) as research and practice evolve. The rehabilitation goal, improving functioning and wellbeing rather than necessarily symptoms, allows flexibility and the possibility of empowering one as a human in context rather than only a “patient.”
The term “Psychiatric Rehabilitation,” which is the foundation of PSR, has all but lost its meaning in most current uses. The term was assimilated by the healthcare system in service definitions and subsequently became meaningless as programs billing under psychiatric rehabilitation codes were never held accountable. While there are countless excellent Psychiatric Rehabilitation programs, there is no way to know what services or model are provided in a given program billing under “psych rehab.” The term “Psychosocial Rehabilitation and Recovery” may suffer a similar fate if history continues to repeat itself. We hope this book will provide the central tenets and purpose of PSR rather than a specific model, which is bound to change for the better and for the worse in different contexts.
Both CBT and PSR evolved primarily from intersections of cognitive science with social learning theory and other behaviorist approaches. In modern forms, behavioral formulation and goals remain paramount. People change their lives for the better by changing what they are doing or how they are doing it. Thoughts, emotions, perceptions, beliefs, and other traditional targets of talk therapy are barriers to changing behavior to align with a person’s goals and values. The strength and risk of behavioral approaches is that social learning determines what a person will do or how they will react in the absence of “thinking about it.” Most of our thoughts, emotions, reactions, and actions are automatic and reflexive because our activities and environments are much too complex to “make a decision” about everything. So, behavioral principles (i.e., operant and classical conditioning) that change animal and infant behavior are equally important to adult behavior. In restrictive and intensive treatment settings that often serve people with psychosis and SMI, environmental and interpersonal contingencies and systematic reinforcement will happen. They are unavoidable aspects of human coexistence. Staff can assess and utilize these contingencies to increase the likelihood that people will achieve personal goals and recovery, or they can ignore them. Unfortunately, when behavioral contingencies are ignored, what evolves is unintentional reinforcement of maladaptive behaviors and manipulation that maintains control. This circumstance creates the nightmarish milieus illustrated so poignantly in One Flew Over the Cuckoo’s Nest, and the unfortunate but understandable aversion held by many advocates toward some of the best-researched treatment approaches, like token economy and contingency management. Legal issues like commitment and competency complicate ethics in intensive and restrictive treatment settings, which is beyond the scope of this book (see: Spaulding et al., Reference Spaulding, Sullivan, Evans and Avila2021). However, professional, accountable, and ethical implementation of behavioral principles in the various settings that serve people with SMI and psychosis is needed before our healthcare system can start to heal.
“Snake pit” psychiatric wards of the mid-twentieth century and continuing abuses today warrant drastic action (Wells, Reference Wells2020). We argue above that we still have much to learn from otherwise outdated research from the 1960s, and this argument also applies to systems and programs. As described in Chapter 2, good treatment programs that are humane and budget-friendly in the long-term are often shut down for various reasons and replaced with lower-quality programs that become inhumane. This is often a case of “throwing the baby out with the bathwater.” Wholesale “reform” occurs rather than actual reform, which would involve at the least identifying and protecting what works well while changing or removing what doesn’t. When good treatment programs are allowed to exist and grow, they will highlight problems to address through program evaluation and reform. This is apparent in countries with more consistent and evidence-based healthcare systems, whose problems and debates are entirely different from those in the US. When good PSR programs grow and are cut suddenly, systems fall into cycles of creating then having to address the same problems over and over rather than learning from mistakes and building past them (Sullivan, Reference Sullivan1999; Tarasenko, Sullivan, Ritchie, & Spaulding, Reference Tarasenko, Sullivan, Ritchie and Spaulding2013). These cycles are so prevalent that, anecdotally, SMI Psychologists are advised to expect job changes every few years as PSR programs die, and competent professionals have to find another program to serve people. We must know and learn from our history to recover US mental healthcare, and this will require meticulous identification of “babies” amidst the substantial “bathwater,” along with disruption from within systems in addition to advocacy from outside.
Orientation and Aspiration
We hope we have oriented you in a way to help maximize what you glean from each of the following chapters, which each take deeper dives into different perspectives on our broad goals. As previously stated, we hope to overemphasize the reality of Fact 1 (recovery is real and possible for most people with psychosis and SMI) while acknowledging but not praising the status quo and Fact 2 (psychosis and SMI are often incredibly difficult for all involved). We aim to meet these goals by highlighting three factors needed to improve the lives of people with psychosis and SMI: hope; available effective interventions; and changing attitudes to support dignity and autonomy.
Our coauthors’ chapters are organized in three sections. The first section, Chapters 2–4, provides three different perspectives on the long history of research, clinical practice, and sociopolitical context that have demonstrated the fact of recovery and the value of psychosocial approaches, including the many challenges and self-defeating cycles that have limited our ability to support people with psychosis and SMI. The second section, Chapters 5 and 6, highlight successes, challenges, and lessons learned from broad systems in the US and abroad implementing new approaches to support people with recent-onset psychosis. The third section, Chapters 7–9, provides clear evidence and frameworks to believe in, hope for, and participate in recovering the US mental healthcare system for people with psychosis and SMI. Finally, Chapter 10 provides a summary of lessons learned from the preceding chapters and applies organizational change management strategies to present a path forward.
We write this book in the context of intense polarization amidst racial injustice, sociopolitical turmoil, and a pandemic. Most of us aspire to change ourselves and our country for the better, which will require “crossing the aisle” despite distancing, dehumanizing beliefs, and biases held by all sides. This requires courage and overemphasis on the others’ humanity, with active and explicit openness and genuine curiosity about others’ reality (i.e., intellectual humility). Only when we force ourselves to connect with and understand realities that conflict with ours might we find compromise and unity. We hope the parallels to this chapter are obvious. This book does not target injustice or polarization directly. However, your “local” actions toward hope for recovery, effective interventions, and empowerment and autonomy for people with psychosis and SMI will create a better world for traditionally dehumanized and discriminated neighbors. Your local actions are one way to use your talents and energy toward “global” progress for justice and equity.
