Priority Areas For Behavioral Translational Research |
|
 |
A. Basic Behavioral Processes in Mental Illness
B. Functional Abilities in Mental Illness
C. Contextual Influences on Mental Illness and Its Care
D. Concluding Comments
The long-term NIMH investment in behavioral science research has yielded a wealth of opportunities for developing and applying behavioral science knowledge and methods to benefit clinical, intervention, and services research and, ultimately, clinical care. These range from studies that clarify basic brain function to studies that enhance understanding of the causes and prevention of violent behavior, to epidemiological research and health services research studies that inform the organization, financing, and delivery of public and private mental health services.
All aspects of basic behavioral science can contribute to improved clinical practice. The excitement and importance of these areas were reviewed in the 1996 NAMHC report Basic Behavioral Science Research for Mental Health: A National Investment. In brief, potential clinical gold resides in substantive areas of basic behavioral research that include:
- Affect /motivation/emotion/personality;
- Perception/memory/learning/reasoning/decision making;
- Social processes/environmental factors;
- Behavior change;
- Life span development;
- Cultural studies and ethnography; and
- Animal and comparative behavior.
Basic behavioral science promises to contribute to the development of a new generation of therapeutic and preventive interventions for many mental illnesses. For example, a program of research on self-concept discrepancy and depression shows how research can progress from theory to laboratory studies to clinical application (see box below, "From Campus to Clinic: Developing a New Psychotherapy for Depression"). It provides an excellent illustration of how basic behavioral science can contribute to clinical practice and intervention.
|
From Campus to Clinic: Developing a New Psychotherapy for Depression
Self-System Therapy is a very new, brief structured psychotherapy for depression that is currently being tested through an NIMH-sponsored randomized clinical trial. This therapy is an outgrowth of very basic behavioral science studies and theories relating to how people regulate their thoughts and moods. One foundation for this research is the basic research finding that normal people react with negative affect (such as depression or anxiety) to certain self-discrepancies (e.g., between their perceptions of who they are vs. their "ideal" or "ought" selves). This finding and others contributed to the hypothesis that when people are chronically aware of these discrepancies, they are more likely to experience repeated bouts of negative affect. Furthermore, it seemed possible that this chronic accessibility, in combination with other risk factors, might increase the risk of more serious emotional problems, such as depression. In 1996, Timothy Strauman delineated these various risk factors in a model of depression involving the psychology of self-evaluation (Strauman, 1996). This model described how predisposing factors (e.g., individual differences in the intensity or regulation of emotional states, traumatic early life events) might combine with factors that influence the development of self-representations (e.g., personality structure, parenting styles) and factors triggering negative self-evaluation (e.g., self-discrepancies, current life difficulties) to lead to a final common pathway to depression. Strauman and his colleagues are now establishing the final link from the model to a treatment intervention for depressed patients. They had previously demonstrated that both cognitive-behavioral therapy (CBT) and interpersonal therapy (IPT) — two effective treatments for mild to moderate clinical depression — decreased self-discrepancies in clinically depressed and anxious individuals. Now, studying patients with major depressive disorder, they are evaluating the impact of Self-System Therapy, an intervention more specifically targeted to two main sources of distress: 1) problematic self-beliefs (i.e., particular beliefs, goals or standards used in self-evaluation that conflict with other important beliefs); and 2) the tendency to invoke ideal or ought standards irrespective of the demands of a given situation. This line of research is exploring, among other questions, whether altering specific self-beliefs can change the onset or duration of depression or anxiety. New findings may also shed light on which active ingredients account for the success of CBT and IPT — an important question for future intervention development. |
Applied research areas with relevance to mental health — such as health psychology/behavioral health, organizational change and management, communications and persuasion, and education — offer still more avenues for improving clinical care. In addition, powerful behavioral science technologies are available in areas such as measurement, testing, survey techniques, observational methods, statistical methods, and research analysis.
Notwithstanding the focus of this report on a single but very broad research area, it is important to remember that no single discipline or cluster of disciplines is sufficient to unravel the mystery of mental disorders, their prevention, and treatment. One of the great lessons of late 20th century research in mental illness is the necessity for intellectual ecumenism in an age of overspecialization. Basic behavioral research, neuroscience, pharmacological research, and genetic science — individually and in various combinations — have enormous potential to contribute to the understanding, prevention, and treatment of mental illness. The challenge to NIMH leadership is to orchestrate the individual strengths and characteristics of these fields into a coherent understanding of these extremely complex disorders of molecule and mind, of brain and behavior. For example, research on the neuroscience and genetics of mental disorders needs to be informed by state-of-the-art concepts, measures, and methods of basic behavioral research if it is to contribute fully to an understanding of psychopathology.
Progress in translating behavioral science advances in knowledge into meaningful advances in clinical care requires building a research environment in which collaborations across disciplines are normal, not exceptional. Realizing the enormous potential of such research requires challenging the trend toward increased disciplinary specialization by encouraging greater collaboration of basic behavioral scientists with their counterparts in biologically and clinically based disciplines, an issue addressed in Chapter IV.
In this chapter, the Workgroup highlights three specific areas of study in which the push of research progress converges with the pull of public health need (i.e., the real-world needs of consumers, practitioners, payers, and policymakers) to create prime targets for intensified study. These priority research areas are critical starting points for progress in translational science because they are at the interface of what end-users have identified as important and what behavioral science researchers regard as areas of opportunity. They offer the prospect of conducting exciting research, advancing scientific understanding of behavior — in health and in illness — and improving the mental health of our Nation.
A. BASIC BEHAVIORAL PROCESSES IN MENTAL ILLNESS
PRIORITY AREA 1. Understand how basic behavioral processes (e.g., cognition, emotion, motivation, development, personality, social interaction) are altered in mental illnesses, how these processes relate to neurobiological functioning, and the implications of these alterations for etiology, diagnosis, course, prevention, treatment, and rehabilitation.
- Develop reliable and valid methods for assessing these basic behavioral processes as part of clinical diagnosis.
- Assess how preventive, treatment, and rehabilitative interventions affect these basic behavioral processes.
- Evaluate these basic behavioral processes as indicators of risk for the development or exacerbation of mental illness.
- Combine basic behavioral research with neuroscientific, pharmacological, and genetic research to produce an integrated approach to understanding, preventing, and treating mental illness.
a. Issue: Many of the most debilitating and problematic aspects of mental illness (for consumers and their families, and for clinicians) are characterized by changes in basic behavioral processes. Assessing these changes — for which many sensitive measures have now been developed by behavioral scientists — offers a promising complement to traditional category-focused diagnostic systems. Further, in combination with other, more biological assessment approaches, these assessments may offer new insights into the functional and structural neurobiology of mental disorders.
An extensive body of behavioral science has identified the specificity and variability of basic behavioral processes in normal populations and has developed a range of methodologies and technologies for such research. This work now needs to be extended to include clinical populations, both to test the generalizability of the basic findings and to clarify how — and in which dimensions — people with certain illnesses or symptoms differ from the population at large. Applying this knowledge and these methodologies to clinical populations can lead to refined diagnosis, better measurement tools, and more precisely identified points of intervention to prevent or lessen symptoms and improve functioning. It also will increase understanding of how behaviors, symptoms, and disabilities actually cluster across disorders.
b. Research Avenues9 : Some important research needs and opportunities within Priority Area 1 are described below.
- Memory and Emotional Processes in Schizophrenia
As basic behavioral researchers have worked to refine and differentiate psychological functions and to understand their interrelatedness, they have developed new methods that are being applied in psychopathology research. For example, the question of whether people with schizophrenia have memory deficits has led to an examination of various types of memory in such patients. Using methods developed by basic behavioral researchers (Cohen & Faulkner, 1988; Conway & Dewhurst, 1995), studies of individuals with schizophrenia recently revealed deficits in their episodic memory, that is, memory for personal events; these individuals find it difficult to recall and review specific experiences (Danlon, Rizzo, & Bruant, 1999). This research on memory may have implications for designing cognitive rehabilitation programs. Testing for deficits and preserved or enhanced process may form the basis for the next generation of diagnostic and rehabilitative approaches.
Basic research also is relevant to studying multiple aspects of the emotional system (emotional experience, emotional expression, emotional physiology) in schizophrenia. People with this disorder have both "positive" symptoms characterized by excess (e.g., hallucinations, delusions) and "negative" symptoms characterized by deficit (e.g., social withdrawal, poverty of speech). A new line of basic research on the emotional system in such individuals is challenging previously held beliefs about the dampening of emotion in schizophrenia (Kring & Neale, 1996). This research has revealed that, in response to viewing emotionally charged films, people with schizophrenia do indeed show markedly less emotional facial behavior than controls, a finding that is consistent with descriptions of emotional flatness in the disorder. However, when the other components of the emotional response to these films were examined, a much more complex picture emerged. The subjective emotional experience reported by people with schizophrenia was comparable to that of controls, but the ill individuals had the same or greater levels of autonomic nervous system response.
Thus, while showing little outer manifestation of emotion and seeming emotionally lifeless and constricted, such patients may actually be experiencing a great deal of emotion. These findings have enormous implications for understanding, treating, and dealing with the disorder. They suggest that at least some people with schizophrenia may live in a world where their emotions are constantly misread and misinterpreted by others, a particularly cruel consequence of the disease. The findings also have important implications for research on the biological underpinnings of schizophrenia. The likelihood that emotional dampening in schizophrenia is limited to facial behavior points toward very different underlying neural mechanisms than would be implicated if all aspects of emotion were dampened.
- Self-Awareness and Depression
Another productive area for translational research concerns the interaction of self-awareness and depression. Recent research suggests that people prone to ruminate in response to their negative emotions — a characteristic more prevalent among women than men — are particularly at risk for more severe and prolonged distress following negative life experiences. Their ruminative style increases the accessibility of negative thoughts and memories, which exacerbate depressed mood (Lyubomirsky & Nolen-Hoeksema, 1995). The greater prevalence of clinical depression among women may stem in part from rumination effects that amplify symptoms and extend depressive episodes. Clinical research suggested by these findings includes studies of the potential efficacy of depression treatments that distract individuals from their self-absorbed thoughts long enough for their depressed mood to be relieved or that encourage people to believe that they can change depression-inducing situations.
Understanding cognitive and emotional abilities — their boundaries and constraints, the mechanisms that underlie them, how people use them, and what they can do to change them — is a crucial task for researchers dedicated to improving mental health. However, the next generation of behavioral science research can and should go beyond simply studying in symptomatic or ill individuals those phenomena found in normal subjects; basic researchers also need to develop hypotheses predicting which processes would be preserved, hindered, or atypical when certain symptoms or disabilities are present. Empirically testing these predictions will be the sharpest test of understanding which processes are involved or affected and how to correct them to improve mental health.
- Measurement Theory and Clinical Diagnosis
Great strides have been made over the last decade in developing instruments to aid in detecting and diagnosing mental disorders. Although these measures have provided a common language for researchers and, in some cases, for reimbursement policy, developing and improving tools for research and practice remain important translational goals. Incorporating newer methodologies developed within the broad domain of the quantitative and measurement sciences could improve the precision of diagnosis and conceptualization of mental illness, shorten testing time for patients, and strengthen the assessment of patient recovery. Three examples of potential applications to clinical diagnosis and practice follow:
- Developing multi-dimensional measurements of functioning that complement traditional symptom-based diagnostic systems could help to refine understanding of treatment outcomes and differentiate individuals who are currently grouped within a single diagnostic category. For example, separate assessments of schizophrenia along dimensions of social interactions, attentional deficits, and neurophysiological abnormalities could both provide a more comprehensive evaluation and suggest potential areas of treatment emphasis. Similarly, developing measurement systems that blend symptom-based indicators with process-based indicators would allow for a richer understanding of the individual client, thereby allowing finer grained treatment approaches and leading to better scientific understanding of the complex interplay of process and symptom.
- Computer adaptive testing approaches (described below) could be modified to address the difficult problem of diagnosis. Adoption of these approaches (already widely used in a number of educational testing domains ranging from ability assessment to tracking outcomes of interventions for reading disabilities) might significantly reduce the amount of testing time required to arrive at a diagnosis, or, perhaps more important, provide an estimate of an individual's functional level. The technology of computer adaptive testing is well established, but has not yet been rigorously explored as a technology for clinical assessment in the mental health domain.
Using these approaches, an assessment begins with an estimate of the individual's level on a trait or behavior (e.g., a small number of probe items). By sequentially presenting questions from an item pool ranging in level of intensity or difficulty, the assessment progressively focuses on a level appropriate for the individual. For example, if the assessment were focused on phobias, the questions might involve behaviors related to limits in daily functioning. Starting with an initial estimate of the average level of restriction, the person would confirm or deny this level of disability. A confirmation would be followed by a question addressing still greater severity. This process would continue until an estimate of the functional level of the individual, with predetermined precision, is obtained. This provides a tailored assessment, and only the number of questions needed to obtain an estimate of pre-specified accuracy would be asked.
- Item response theory (IRT) refers to the development of test questions systematically varying in "difficulty" in order to measure individual differences in ability. Such carefully crafted and tested questions would be helpful to patients and clinicians, as well as researchers, in two ways. The first would be to develop new and better scales of "wellness," "functioning," "satisfaction," or similar important constructs. A second use would be to establish banks of items with similar characteristics, which could be used interchangeably in repeated assessments of the same individual over time to track the course of recovery without the identical item having to be used repeatedly. These applications could improve the ability to monitor change by assessing very fine differences in functions or symptoms during the course of treatment and recovery.
- Developing multi-dimensional measurements of functioning that complement traditional symptom-based diagnostic systems could help to refine understanding of treatment outcomes and differentiate individuals who are currently grouped within a single diagnostic category. For example, separate assessments of schizophrenia along dimensions of social interactions, attentional deficits, and neurophysiological abnormalities could both provide a more comprehensive evaluation and suggest potential areas of treatment emphasis. Similarly, developing measurement systems that blend symptom-based indicators with process-based indicators would allow for a richer understanding of the individual client, thereby allowing finer grained treatment approaches and leading to better scientific understanding of the complex interplay of process and symptom.
- Biobehavioral Research and Mental Illness
The contributions of behavioral science to mental health can be multiplied many times over through collaboration with other vital areas of research. For example, mental health research is likely to benefit exponentially from advances at the interface of neuroscience, genetics, and behavioral science that can clarify how behavioral and biological factors interact in the etiology, course, and amelioration of psychopathology. Examples of research opportunities at this interface are described below.
- Brain Plasticity and Behavior
As research and clinical interest expand from acute control of symptoms to include longer-term issues of rehabilitation or recovery, there is growing interest in recovery of brain functioning. The term "brain plasticity" refers to changes in the structure and functioning of the brain, whether through development, learning, or recovery from injury. Researchers examining brain plasticity have noted that "experience produces multiple, dissociable changes in the brain including increases in dendritic length, increases (or decreases) in spine density, synapse formation, increased glial activity, and altered metabolic activity" (Kolb & Wishaw, 1998). The size of ventricles (open, fluid-filled areas) in the brain — a measurement that is used as an index of brain dysfunction in several disorders — has been found to change over time with changes in experience and nutritional status. Several studies of psychotherapy outcomes have found brain functional changes that are associated with positive behavioral outcomes (Baxter et al., 1992). Research in this area, typically conducted by basic behavioral researchers often in cooperation with psychopathology researchers, is still at the early stages of its development in clinical populations and needs to be expanded.
- Biobehavioral Development and Mental Disorders
Behavioral science offers a rich description of risk factors associated with the onset of mental disorders at multiple levels of analysis/environment. Normal behavioral development (cognitive, linguistic, motor, emotional) has received extensive study, and the behavioral course of some child psychopathologies has been described (e.g., conduct problems, autism). Complementing this area of research progress is a young but growing research area focused on genetic control of the unfolding of brain structure and system development. Also evolving rapidly are visualization technologies (e.g., functional magnetic resonance imaging — fMRI) that provide unprecedented access to the living, behaving, developing brain, even as recently reported, while a fetus responds in utero to its mother's voice. At present, however, these are all too often separate fields of study (e.g., neurodevelopment, behavioral development, and developmental psychopathology/psychiatry) with little crosstalk and with separate literatures, separate schools (medical vs. graduate), and distinct conceptual frameworks (medical model vs. transactional). The potential gains in developmental understanding and in clinical capacity to avert or divert adverse developmental trajectories demand the Institute's best efforts to stimulate greater collaboration and cooperation across these disciplinary lines.
- Genetics and Behavior
Mental disorders are extremely challenging to genetic researchers because they do not stem from errors in single genes. In addition, both genes and environment appear to be complexly and interactively involved in the development of mental disorders, perhaps with multiple components of each. Furthermore, a mental disorder such as schizophrenia may be at the most severe end of a continuum of schizophrenias that include, in descending severity, schizoaffective disorder, schizophreniform disorder, schizotypal personality disorder, and possibly other variants. Growing research evidence suggests that other major mental disorders may follow the same pattern. Thus, collapsing multiple diseases or degrees of illness into a single category makes the search for genetic influences much more difficult, since each subset of a disease may have different genetic influences. A gene hunter may miss an important lead because it is not seen in all members of the affected population.
Circumventing this problem requires careful behavioral and biological descriptions of the behavioral phenotypes of specific subsets of mental disorders (how the mental disorders are expressed in individuals) so that these subsets can be identified genetically — a vital task for behavioral researchers. Vital, too, is the application of behavioral technologies from psychometrics and behavioral genetics to study sources of genetic and environmental variation and to dissect and understand the embedded phenotypes. Therefore, very fine analysis of hypothesized phenotypes is required so that appropriate subsets are defined and genetically linked.
Understanding the behavioral phenotype also is critical in the area of basic genetics, where researchers are testing the role of given genes through powerful "knockout" technologies that genetically alter animals to provide models of presumed genetic deficits. This research has revealed critically important understandings of disease processes at the cellular and molecular levels. However, when attempting to find the genetic basis for certain enduring behavioral dispositions that may confer or reflect susceptibility to mental disorders, identifying specific behaviors associated with specific genetic manipulations is no easy matter. Analyzing the changed behavior of genetically altered species requires the collaboration of experts in animal behavior who bring measures and paradigms developed to understand behavior in genetically normal animals, as well as extensive knowledge of species-specific social and sexual behaviors that might be disrupted.
Genetic manipulation is but one of many potential techniques for creating animal models of mental disorders. Because providing an overarching model of a mental disorder has proved difficult, researchers need to begin with partial models that can aid significantly in the clinical research enterprise. Animal research and comparative behavioral research have provided some partial animal models that are useful for research, such as dogs with acral lick syndrome, a compulsive licking behavior that resembles behaviors seen in obsessive-compulsive disorder, and which, like them, responds to medications such as fluoxetine (Prozac). Again, progress in such research requires, at a minimum, a pooling of behavioral and biological expertise.
In conclusion, the most tantalizing biobehavioral findings would be those in which convergent data across multiple fields and levels of analysis provide a new empirical nexus for understanding specific mental disorders. For example, personality and temperament research, neuroimaging, animal models of behavior, and genetic research recently have all converged in important new theories and findings regarding behavioral and biological aspects of mood and mood regulation. This work has important implications for such topics as the relationship between anxiety and depression, which has long been a source of controversy in both the clinical and experimental literatures. Further multidisciplinary research that builds on this emerging perspective might offer a more cohesive conceptualization of these and other mental disorders.
- Brain Plasticity and Behavior
B. FUNCTIONAL ABILITIES IN MENTAL ILLNESS
PRIORITY AREA 2. Understand how mental illnesses and their treatments affect the abilities of individuals to function in diverse settings and roles (e.g., carrying out personal, educational, family, and work responsibilities).
- Apply methods from basic behavioral science to the development of tools to assess functioning.
- Use methods from basic behavioral science to understand how specific rehabilitation and other intervention techniques improve specific types of functioning.
- Develop interventions that focus on improving functioning in addition to reducing clinical symptoms.
- Include the assessment of functioning as an outcome in intervention, services, and risk-factor research.
a. Issue: A wide range of relationships and activities — including those at home, work, school, and in health care settings — can be limited by acute episodes of mental illness. In addition, chronic and recurrent episodes of severe illness or those that begin before adulthood may limit functioning even after primary symptoms have abated. The levels and domains of activity limitations may vary quite widely both within and across diagnostic categories and in individuals over time. Yet similar levels and types of disabilities can be seen in people with quite different diagnoses. For example, limitations in social functioning may occur in individuals with disorders as diverse as schizophrenia, bipolar disorder, major depression, and social phobia. These illnesses therefore can constrict an individual's social-support network, resulting in fragile resources for coping with crises.
Given these considerations, an assessment focused solely on diagnosis-related symptoms may not suffice for helping people who are struggling to cope with mental disorders. How consumers function at home, with friends, with health care providers, at work, and during leisure time may be equally important outcomes to address. For example, a young man with schizophrenia may find that although the new medications reduce symptoms of psychosis such as hallucinations, he still is having trouble going to a job interview or taking the driver's license test — two tasks essential to realize his wish for self-sufficiency and recovery. Another consumer with bipolar disorder, who now feels more in control of her mood fluctuations, might discover that some of her previously acquired skills — such as getting to work on time, negotiating public transportation, and managing money — need a great deal of improvement. A third person with depression, whose problems in functioning began in early adolescence and interfered with the development of social skills, may never have learned certain age-appropriate skills for initiating a personal relationship — an essential step toward fulfilling his dream of having friends and dating.
Because impaired functioning creates a serious economic and social burden for our society, for people affected by the disorder and for their families, health care providers, payers, researchers, and policymakers need to pay increased attention to clients' levels of functioning--before, during, and after treatment. As the enormous functional toll exacted by mental illness gains increasing recognition (as illustrated by the recent international comparative data on disease disability and the Surgeon General's report on mental illness) (Murray & Lopez, 1996; U.S. Department of Health and Human Services, 1999), so too does the need for demonstrably effective ways to assess and improve consumers' abilities to carry out their responsibilities and manage residual or recurring symptoms of their illness.
b. Research Avenues: Powerful research tools and theoretical perspectives are available in the behavioral sciences for examining issues related to functioning, including interpersonal interactions, social influence, emotion, learning, self-concept, and decision making. Research in the area of functioning needs to take advantage of these resources by linking to behavioral theory and methods. Some ongoing mental health research that focuses on or includes functioning is beginning to make those links, but most research to date does not. The opportunities for research on functioning described below suggest some ways in which behavioral science theory and methods could provide new tools for identifying and improving the functional abilities of people with mental illness.
- Measuring Functioning
Assessment of functioning has lagged considerably behind assessment of clinical symptoms in mental illness. The lack of standardized assessment and classification tools has hampered the ability of researchers and policymakers to assess accurately the form and frequency of functional impairments and to project future health care needs and costs. Recent efforts by the World Health Organization (WHO) and NIMH have led to the development of the WHO-DAS II, a generic measure of functioning that includes the domains of understanding and communicating, getting around, self-care, getting along with other people, life activities, and participating in society. The WHO-DAS II is now undergoing worldwide psychometric testing. Pilot studies are currently underway to determine its ability to predict service needs, health service use, and costs.
The WHO-DAS II is an exciting use of behavioral science with great promise for providing reliable and valid data to researchers and service providers. However, since it was designed to be used across many cultures and illnesses, instruments like this may not be as useful for informing everyday treatment and rehabilitation plans for a specific person. Basic behavioral science theory and methods can be used to devise instruments that will take into account issues that are more specific to an individual and his/her context and symptoms. These instruments also could evolve into sensitive person-specific measures of the subtle but important changes over time in an illness.
- Strengthening Rehabilitation Effectiveness and Functioning
Psychosocial rehabilitation generally is regarded as important to help people coping with mental disorders function in community settings. However, many rehabilitative interventions are not now grounded in research, and there is wide variation in how well these interventions help specific people with specific deficits. Researchers have documented numerous specific cognitive and psychophysiological deficits associated with mental disorders (e.g., in attention, information processing, and psychophysiological arousal). But there is little understanding of how those deficits are related to specific functional problems or how such problems may be addressed by rehabilitation approaches. Current research is seeking to make these links. However, much more work needs to be done to spell out completely the link between the neurological-cognitive deficits and the formulation of rehabilitation strategies that are specific for particular functional deficits.
- Understanding Illness Management and Recovery
Consumers in community settings need and want to be able to take care of themselves. To do so they must improve functioning that was diminished, compensate for functioning that was lost, and learn new skills that were never developed. Teaching and reinforcing those strategies is the goal of rehabilitation programs. Behavioral research examining how people perceive and regulate their own behavior promises to shed light on many of the central rehabilitation problems of mental disorders (Metcalfe & Shimamura, 1994). For example, researchers have shown that individuals' awareness of the nature of their deficit is one of the most predictive measures of whether they will be able to benefit from rehabilitation efforts and develop compensatory skills. However, people with certain clinical conditions do not understand that they cannot remember information, even about their own illness; others are unable to use that information when needed. These are called deficits of monitoring and of control. For instance, unlike people with other kinds of amnesia, those with Korsakoff's disease lack knowledge of what they will be able to remember. This impairment in monitoring may originate specifically from the frontal cortex. Neuropsychological and computational models have clarified how basic memory processes are related to the monitoring and control processes. They also point to a whole syndrome of deficits that should be related specifically to impairments in monitoring.
Studies of individuals with impairments of control are few. People with such deficits have frontal lobe impairments and may have deficits related to the amygdala system as well. People with such deficits understand and can even fluently express what they should do, but cannot put that knowledge into practice. Clearly, this dissociation between monitoring and control processes has profound implications for daily functioning, as well as for our understanding of the basic architecture of human cognition. Much more detailed follow-up may clarify how these different components of cognition interact in different clinical and normative groups, and what intervention strategies might help people with such impairments. Deficits in monitoring and control may have important implications for functioning (in social relationships, work, at home and in school) and for the design of rehabilitation strategies.
- Enhancing Disorder Management and Functioning
Managing the symptoms of severe mental illness so that an individual can remain engaged in the activities of life can be a daily challenge. Managing the illness typically requires taking medication that can have many discomforting side effects, including dry mouth, blurred vision, sedation, restlessness, sexual dysfunction, weight gain, and tardive dyskinesia (involuntary movements of the head and limbs). Understandably, many of those experiencing such side effects want to quit taking the medication, and some do. This can lead to an acute episode of illness.
Behavioral strategies can reduce medication side effects by teaching clients to identify symptoms, to monitor their behavior and emotions, and to develop more effective communication skills, all of which help them negotiate with health care providers regarding medication changes. A series of recent studies illustrates the effectiveness of behavioral training techniques (e.g., didactic instruction, modeling, response rehearsal, coaching, and contingent social reinforcement) in teaching what are known as collaborative medication management skills to people with schizophrenia who are likely to discontinue medication. As a result, behavioral skills training has been identified as an essential ingredient in a comprehensive biobehavioral approach to schizophrenia treatment. More refined assessments are needed of the functional impact of these interventions, in combination with other behavioral approaches for strengthening the illness-management skills of clients in community settings.
- Coping with the Social Environment
In addition to coping with the symptoms of their illness, many people with severe mental disorders struggle to establish or maintain successful relationships with family members, friends, and co-workers. The primary and most intense social contacts for many of these consumers are with family members. Behavioral research has guided the development and testing of family education and support groups that assist family members in understanding the illness and coping with day-to-day stresses. Behavioral family psychoeducation programs place considerable emphasis on improving communication and problem-solving skills; the programs are designed to enhance family members' ability to work together and minimize conflict. Most studies evaluating the effects of these family interventions have found that the psychoeducational programs for families produce dramatic reductions in the number and duration of acute episodes of illness among their ill relatives as well as improved health for family members.
Recent studies also suggest there are behavioral methods for directly helping those with severe mental illnesses cope with life in the community. Two randomized controlled trials showed that over a 3-year period an individually tailored form of cognitive-behavioral therapy, in combination with antipsychotic medication, could significantly reduce relapse and improve social functioning among those consumers who were living with their families (Hogarty et al., 1997). Further research is needed to extend the breadth and duration of these effects to permit people with severe mental illness to live more productive and fulfilling lives.
C. CONTEXTUAL INFLUENCES ON MENTAL ILLNESS AND ITS CARE
PRIORITY AREA 3. Understand how social or other environmental contexts influence the etiology and prevention of mental illness and the treatment and care of those suffering from mental disorders. Context includes interactions among factors at the individual, family, sociocultural, and service-system or organizational levels.
a. Issue: To respond well to the mental health needs of Americans with mental illness — especially given our Nation's extensive cultural diversity — clinical practitioners, decisionmakers, and researchers need to understand how a variety of contextual factors affect the mental health service system and those who deliver and use (or do not use) its services. This point was made in a call to arms to psychiatry that applies equally well to the other mental health professions:
Psychiatry needs new ways of delivering culturally appropriate care to the disenfranchised and the destitute, for whom mainstream approaches are often too expensive, foreign, and centralized. As a profession, we also have much to learn from indigenous diagnosticians and therapists. Finally, psychosomatic, mind-brain, behavioral health, and psychopathologic investigations need to configure the social world in their paradigms of research if we are to understand better the sources and consequences of mental illness. Psychiatry can no more afford to be contextless than it can afford to be mindless or brainless (Emphasis added) (Lewis-Fernandez & Kleinman, 1995).
Mental disorders arise and are treated in complex biological, sociocultural, and economic settings. People with these disorders differ in their individual characteristics and in their manifestations of and responses to illness depending on the community and cultural environments in which they live. The organizations that provide mental health and rehabilitative care operate with a range of values, styles, goals, and financial restrictions. Their capacity to address the individual needs of those with mental illness may be affected by their social, economic, and legal environments. All these contextual factors — individual, sociocultural, and organizational — have main and interactive effects on risks for illness, course of illness, help seeking, and responses to interventions. These effects, individually and in combination, need to be identified and assessed to aid in designing and/or developing interventions appropriate to the needs and circumstances of specific individuals or groups suffering from mental disorders.
Contextual factors are particularly salient in research on disparities in the receipt and quality of mental health care. Excellent mental health treatment should be available to all Americans, but there are still significant socioeconomic, geographic, and ethnic disparities in the seeking, use, and provision of care, as well as treatment outcomes. A significant issue in this regard, which needs a contextual research approach, is diagnosis. Evidence shows that the diagnosis one receives can be strongly influenced by the racial group to which one belongs. Also relevant is research evidence that identification of certain mental health problems — whether defined by Western mental health professionals (e.g., anorexia) or through folk and cultural traditions (e.g., ataques de nervios, see (b) below) — are highly dependent on the sociocultural backgrounds of the clinician and the consumer. These and other findings indicate the necessity for more methodologically sophisticated and behaviorally informed research on diagnosis and the diagnostic process.
Areas within mental health services research, such as research on help seeking, treatment, and outcomes, also need a contextual perspective. Evidence shows that those who are not part of the mainstream culture are more likely to seek services and respond best if those services are provided in an environment that is geographically accessible and socially and culturally comfortable for them and respectful of them. To alleviate disparities in help seeking, treatment, and outcomes, consideration of sociocultural and other contextual factors is essential.
The basic behavioral and social sciences have extensive literatures that are gold mines for mental health research conducted from a contextual perspective. They focus on the very social, cultural, psychological, and market factors influencing behavior that are critical for a contextual perspective. Theory, methods, and empirical findings in these literatures can aid understanding of issues such as:
- Individual: How social and cultural influences at the individual level — such as developmental history, styles of expressing emotion, levels of motivation, personality, beliefs, values, preferences, needs, and goals — affect risk for mental illness and inform the development, design, and targeting of new interventions, and how such characteristics affect behavioral responses to prevention and treatment.
- Sociocultural: How ethnicity, culture, language, socioeconomic class, family and social networks, and neighborhood or community affect risk, diagnosis, prevention, and treatment of mental illness.
- Organizational: How policies, incentive structures, and cultures at all levels of health/mental health organizations and institutions affect the behavior of those providing care and of those receiving it, as well as the outcomes of care.
There has been some research collaboration among basic researchers, services researchers, and service providers. But much more intensive efforts are needed to ensure that basic behavioral theory, methods, and empirical findings relevant to contextual issues inform research on diagnosis, engagement, and care of those with mental disorders. The following research examples suggest some of the exciting findings that have emerged from beginning steps taken in this direction.
b. Research Avenues:
- Diagnosing Symptoms and Functioning Across Cultures and Subcultures
New tools and approaches are critical for understanding a variety of difficult treatment and service issues. Anthropological and cross-cultural research studies have shown that the expression of emotion can vary widely across cultures, as can mental illness symptoms, their meanings, and the categories of mental disorders. A cross-cultural research program on diagnosis should examine how these differences affect individuals' experience and reporting of symptoms; how the expression of emotion affects diagnosis; how the language of interview affects the assessment of individuals in their first and second languages; and how social distance due to ethnicity, class, and gender affects the diagnostic process.
The benefits of cross-cultural approaches to diagnosis are illustrated by research on ataques de nervios (attacks of nerves) among some Latino populations in the United States (Guarnaccia & Rogler, 1999). This research has determined that this culture-specific illness refers to distinct patterns of loss of emotional control and that the type of loss of control (fear vs. anger) is related to specific mental disorders (panic vs. mood disorder). This research has also suggested that these clusters may prove to be useful markers for detecting mood and anxiety disorders among Latinos.
- Developing Measures and Interventions through Ethnography
Some research questions regarding the etiology and course of mental disorders require an ethnographic approach. Ethnographic and other qualitative methods, which have a long history in anthropology, describe illness and suffering in relation to the sociocultural contexts in which they occur. This requires that researchers consider the nature of mental disorders, and necessarily involves issues of "meaning" and "value" that contribute to people's perceptions of themselves and their world. This approach has proved quite useful in two areas of applied research: measurement development and intervention development.
- Measurement Development
When doing research in community settings, investigators need to account for variations in how care is delivered. One concept that has been assumed to be critical is "continuity of care." However, researchers have typically approached this concept through ad hoc measurement of related constructs, such as number of visits or presence of a particular type of service. This limited conceptualization recently has been expanded. An ongoing ethnographic study has sought to identify the elements of continuity of care by documenting the interpersonal processes of giving and receiving care (Ware et al., 1999). Through careful interviews with clients and clinicians, the investigators have identified six mechanisms of continuity, which they term pinch hitting, trouble shooting, smoothing transitions, creating flexibility, speeding the system up, and contextualizing (or helping the client perceive a discouraging situation less negatively). Through this ethnographic work, a scale has been constructed that is being used currently in psychometric testing in ethnically diverse populations.
- Intervention Development
Caregivers working with people with severe mental illness in the community need to encourage health-promoting behavior in all aspects of life. This is especially important to prevent additional illness and because having co-morbid substance abuse and/or medical disorders complicates and exacerbates severe mental illness. Such efforts depend, in part, on understanding the perspective of the specific consumer population. Research built on an awareness of cultural contexts can aid in developing interventions that give consumers well-grounded, comprehensible information, respond to their personal concerns and viewpoints, and give them the skills needed to refrain from behavior that can compromise their physical or mental health.
Recent research has demonstrated the potentially life-saving power of culturally sensitive preventive interventions for individuals with severe mental illness (Susser et al., 1998). Because an elevated rate of HIV infection has been found in this population, developing an effective HIV preventive intervention for people with severe mental illness — especially those who are homeless — has been a high priority for NIMH. To encourage safer sex among homeless minority men with severe mental illness, a research team recently conducted a randomized clinical trial of an ethnographically based social-skills training curriculum built around the activities and the language of the men's daily lives in their shelter. The cultural relevance of the intervention made it meaningful and interesting to the men and held their attention despite the cognitive impairments produced by their illness.
During the initial 6-month follow-up, the experimental group's mean score on a sexual risk index was three times lower the control group's; it was two times lower during the remainder of the 18-month follow-up. This intervention successfully reduced sexual risk behaviors of homeless men with mental illness; although the effect diminished over 18 months, it did not disappear. Further behavioral research of this type, which combines ethnographic sensitivity with social-skills training, is essential to enhance other health- and mental health-promoting behavior in people with severe mental illness in a variety of living environments, communities, and cultural contexts.
- Measurement Development
- Framing Messages in Context for Health
A developing body of behavioral science research promises new insights and approaches to aid in encouraging consumers to seek, remain in, and adhere to treatment, as well as motivating providers to offer appropriate diagnoses, treatments, counseling, or referrals. The rich array of techniques used to change behavior — whether of consumers or providers — includes tailoring messages so they are understood and accepted by the intended target groups. Research on "framing" focuses on the behavioral impact of the way in which messages are presented. To "frame" a message so that it will be effective, the framer must directly address individual and sociocultural contexts of the people whose behavior he or she seeks to change.
Message framing has received considerable study in health care and public health as researchers seek the best ways to reach consumers with health messages (see box below, "Taking a Chance on Health: The Impact of Message Framing"). To date, however, there has been relatively little framing research in the mental health arena--a research gap that begs to be bridged.
Taking a Chance on Health: The Impact of Message FramingA crucial aspect of health education is knowing how to frame messages effectively to encourage behavior change. For example, in trying to encourage women to have mammograms, is it better to emphasize the benefits of doing it ("gain-framed" messages, e.g., "Obtaining a mammogram allows tumors to be detected early; this maximizes your treatment options") or the costs or risks of not doing it ("loss-framed" messages, e.g., "If you do not obtain a mammogram, tumors cannot be detected early; this minimizes your treatment options")?
One of the first examples of translational research based on basic decision science principles was an attempt to persuade women to use monthly breast self-examination (BSE). Women were asked to read one of two pamphlets describing BSE. The first emphasized its potential benefits (gain-framed message) and the second the potential costs of not doing it (loss-framed message). The loss-framed pamphlet was more effective in promoting BSE than the gain-framed one. The particular effectiveness of loss-framed messages in encouraging BSE makes sense in light of laboratory work on framing and risk-taking. BSE is perceived as an uncertain or risky behavior; it is not done to prevent cancer; rather it is performed in order to detect it. Each time a woman performs BSE, she runs the risk of finding a lump or another abnormality.
An additional decade of research revealed that the influence of message framing on health behavior depends on the type of behavior being promoted (Rothman & Salovey, 1997). Loss-framed messages were effective in promoting mammography and BSE, early-detection behaviors. But gain-framed messages were effective in promoting the use of infant car restraints, exercise, smoking cessation, and sunscreen — all prevention behaviors. The uncertainty associated with detection behaviors means that loss-framed messages should be more persuasive in promoting them. However, prevention behaviors are not perceived as uncertain or risky at all; they are performed to deter the onset or occurrence of a health problem, and gain-framed messages are more effective in encouraging them.
The correct match between a message frame (gain or loss) and the required health behavior (prevention or detection) especially motivates behavior change. A return to the laboratory allowed a more precise test of this framing by behavior-type hypothesis using hypothetical diseases, as well as taking a given health behavior — using a daily mouth rinse — and describing its function as prevention or early detection. This line of research began in the cognitive psychology laboratory then became "translational" in the sense that it was used in large-scale, field-based experiments designed to promote health behaviors in community-based interventions. Future research in this area needs to test whether much more targeted messages, which take into account contextual variables such as culture, status, and family illness history, will improve motivation to change behavior.
- Understanding the Impact of Organizational Context and Climate
Integrating the theory, methods, and knowledge base of behavioral science into services research can lead to new types of studies and new insights into critical service system issues. One such study (Glisson & Hemmelgarn, 1998) was designed to determine whether efforts to increase coordination of children's public service agencies improved service quality and children's outcomes, as many researchers, providers, and policymakers expected they would. However, based on the literature in organizational theory, the investigators also assessed how other characteristics of the organizations — which included their overall culture and climate — affected the same outcomes.
The research team collected both qualitative and quantitative data over a 3-year period describing the services provided to children in one State. They found that the tested intervention — increasing coordination between organizations — had a negative effect on service quality and no effect on children's outcomes. In contrast, a positive organizational climate (including low conflict, cooperation, role clarity, and personalization) was the primary predictor of positive service outcomes (the children's improved psychosocial functioning) and a significant predictor of service quality. These findings — if supported by other studies — have immediate policy relevance because they suggest an approach to improving children's services more promising than traditional efforts focused only on organizational coordination. The lesson from this research is to focus on creating positive climates within organizations rather than on simply increasing coordination among them.
D. CONCLUDING COMMENTS
This chapter merely hints at the wealth of opportunities for translational research embedded within the Workgroup's three priority areas. Many more are suggested in the box below, "Further Research Avenues." However, turning research promise into tangible benefits for people with mental illness and for the science of human behavior requires well-planned, well-supported, and sustained effort by NIMH over many years. A framework for that effort is presented in the next chapter.
|
Further Research Avenues
Further Research Avenues Behavior science theory and findings offer rigorous directions for exploring many other concerns raised by individuals with mental disorders, their families, and their providers. The following behavioral science research opportunities round out the examples in this chapter.
|
9Note that for this priority area, as well as the following two, the examples provided are illustrative and not exhaustive; many other lines of research are germane as well. In all of these priority areas, the examples given are drawn both from the "push" of basic research and from the "pull" of public health need. Some represent relatively well-developed areas in which potential links to specific mental illness already are evident but in need of further refinement. Others represent promising lines of research whose relevance to specific mental disorders and their diagnosis, prevention, and treatment remains to be explored. Still others — particularly in Priority Areas 2 and 3 — are largely statements of research need. But above all, the examples are intended to highlight the great promise of applying basic research to problems of mental illness. The Workgroup's intent is to encourage researchers to consider making such bridges in other domains not yet considered or explored.
