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32. Social Aspects of Schizophrenia Care
Keywords
Social adversitySocial determinants of health (SDOH)HomelessnessStructural violenceRacismSocial advocacyPsychosocial historyStigmaLonelinessEssential Concepts
You cannot practice medicine without considering the impact of social adversity like poverty or homelessness on illness. Social determinants of health (SDOH) matter for all aspects of disease (causation, propagation, recovery).
Some health outcomes of schizophrenia are explained by social factors and are not due to schizophrenia per se.
A significant minority (25%) of the homeless population in the United States have schizophrenia.
Social institutions and structures including laws (written and unwritten) can be set up in a way that they cause “structural violence” to some groups. Drug laws that preferentially target one group are an example.
A psychosocial history needs to inquire about social adversity, trauma, legal problems, education and work history, immigration history, and available resources (financial, social support). The experience of racism represents chronic social stress, with biological (allosteric load) and psychological (identity formation) ramifications.
Professionalism requires some form of advocacy for equitable care and social justice.
Patients with a stigmatizing illness like schizophrenia suffer from both the illness and the reaction that people have to the illness.
Various attempts to destigmatize schizophrenia have not had the hoped for benefit (name change) and at times even backfired (emphasizing biogenetic causation that depicts schizophrenia as a brain disease).
Many patients with schizophrenia are profoundly lonely due to illness (negative symptoms) but also because of social exclusion (stigma).
“Une manière commode de faire la connaissance d’une ville est de chercher comment on y traivailee, comment on y aime et comment on y meurt.”
(Perhaps the easiest way of making a town’s acquaintance is to ascertain how the people in it work, how they love, and how they die.)
– Albert Camus (1913–1960), The Plague.
A useful distinction can be made between the sociology in psychiatry and the sociology of psychiatry. The sociology in psychiatry concerns itself with the impact (either causative or modifying) of social factors on disease (e.g., the role of anomie in suicide, the role of immigration on schizophrenia risk, the role of family stress on relapse risk, the effects of class and race on health). The sociology of psychiatry examines psychiatry’s role in societies, particularly with regard to social control of “deviance” (e.g., the effects of getting a stigmatizing disease label; the parameters for involuntary treatment; the function of the state hospital as a “total institution,” a term coined by Erving Goffman [1]). Many sociologic aspects of care are discussed already throughout this book. In this chapter, I focus on social adversity and stigma.
Social Adversity
According to the World Health Organization, the social determinants of health (SDOH) are “the circumstances in which people are born, grow up, live, work and age, and the systems put in place to deal with illness.” And further, “these circumstances are in turn shaped by a wider set of forces: economics, social policies, and politics.” In other words, the social determinants of health are shaped by how a society organizes itself, reflecting power and values in a society. Those are large forces that impinge on all of us, including our patients.
The social consequences of having schizophrenia are rather significant and lead to much social adversity. Schizophrenia puts you at an economic disadvantage, and many patients experience a downward social drift into unemployment and poverty (social selection theory) [2]. A significant minority of the homeless population has schizophrenia, perhaps as many as 25% [3]. While substance use and nonadherence are contributing factors, the lack of affordable housing plays a large role [4]. Simply providing housing, with no preconditions (housing first), is a successful intervention to house patients with serious mental illness [5]. Some level of support enhances autonomy if it prevents a patient from becoming homeless again (e.g., helping a patient with executive dysfunction pay the rent; arranging for a visiting nurse to assist with medications).
While “schizophrenia” may independently work against patients, poverty and minority status (e.g., being a person of color) alone correlate with many observations in patients with schizophrenia (e.g., increased cancer mortality [6] or smoking [7]). Surviving breast cancer, for example, is tightly connected to ethnicity and income [8]. In a just society, surviving cancer ought not to depend on your cultural background or your “net worth.”
Tip
Bad economic conditions (in other words, poverty) are real for many of your patients. Try to understand the barriers that poverty or living in a shelter puts up for each patient, particularly with regard to practical issues that relate to your treatment efforts, like adherence.
One caveat: even though poverty or unemployment are a significant source of discontent related to social determinants of health, much misery stems from having a serious mental illness [9]. Symptoms of anxiety and depression are distressing, and an awareness of the real cost of having schizophrenia is demoralizing. Not all mental suffering is explained by the social determinants of health.
Structural Violence
It is impossible to practice medicine without acknowledging the social realities of patients. Paul Farmer, an infectious disease specialist who has spent most of his career traveling between Harvard and Haiti to bring modern medicine to rural Haiti, has stressed the importance of biosocial causation of illness [10]. It is not possible to isolate an illness and study its “natural course” without considering how people ended up in harm’s way, their access to care, and their adherence to treatment. The natural illness course is an abstraction. Farmer uses the term “structural violence” (a term coined by Johan Galtung and by liberation theologians in the 1960s to denote social structures that impede humans from reaching their potential) to emphasize the pernicious effects of adverse social conditions on clinical outcomes [11]. The “natural” history of tuberculosis varies greatly, depending on where and how you contract the bacterium and what kind of treatment you get. Similarly, the “natural” history of schizophrenia will be difficult to understand if social and sociocultural factors (e.g., society’s view of autonomy) are ignored.
Tip
Develop some “structural competence:” begin to appreciate and spot how some patients are hemmed in and systematically disadvantaged by the structures (e.g., clinic rules, eligibility for treatment) that we have set up [12].
A blatant example of structural violence would be a system of care that shifts people either to psychiatric care or to the correctional setting, depending on your ability to pay. A more subtle example of invisible structures is the ward rules that govern (punish) behaviors on inpatient units.
Social Advocacy
The social needs for our patients can sometimes be overwhelming and instill a sense of powerlessness. Advocacy is an activity that is empowering and can take different forms. True, improving “the system” so access to care is equitable and resources are allocated fairly would have the biggest impact for the most number of people. However, small acts of advocacy directed at the patient in front of you (writing a letter of support for an agency, prolonging a hospitalization to set up a realistic treatment plan) can go a long way for that patient. While not every physician went into medicine to become a social justice crusader, professionalism requires some engagement for equitable care and social justice [13].
Key Point
A problem without a solution is not a need for psychiatry1. However, many intractable social problems like poverty and homelessness are exactly the problems that your patients struggle with and that have an impact on management and prognosis. Advocacy to improve health disparities falls within a physician’s professional obligation.
Assessment
In addition to obvious social determinants of health (poverty or homeless), understanding your patient’s social background (upbringing, educational achievements, work history, social standings) is a necessary part of your psychiatric assessment as your treatment recommendations will need to be socioculturally appropriate and practically feasible. Many patients seen in medical settings have experienced trauma in their lives. For many, growing up was a never-ending series of traumatic events; they never had an “average expectable upbringing.” Childhood trauma in its many variations (including sexual trauma) is increasingly recognized as an environmental risk factor for schizophrenia [14], so inquire about it, in a sensitive way. Some patients with schizophrenia may have the so-called syndemic conditions (e.g., trauma and HIV) that lead to poor clinical outcomes unless both are recognized and addressed [15].
Depending on where you practice, you will have a significant number of patients whose parents immigrated to the United States or who themselves are immigrants. Cultural humility (which is a better term than “cultural competence”) is a needed curious and non-judgmental attitude to engage patients from different cultural backgrounds successfully [16]. First-generation immigrants are at higher risk for schizophrenia, probably related to social stress from the experience of prejudice and discrimination [17].
Assessment of psychosocial history
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