Influences upon willingness to participate in schizophrenia research: an analysis of narrative data from 63 people with schizophrenia

Schizophrenia affects more than 1% of the world's population, causing great personal suffering and socioeconomic burden. These costs associated with schizophrenia necessitate inquiry into the causes and treatment of the illness but generate ethical challenges related to the specific nature and deficits of the illness itself. In this article, we present a systematic analysis of narrative data from 63 people living with the illness of schizophrenia collected through semistructured interviews about their attitudes, beliefs, and experiences related to psychiatric research. In the comments of these individuals, half of whom had had prior personal experience in research protocols, we identified factors influencing openness toward research involvement as well as deterrents that appear to lessen interest in participation. Clear response pattern differences emerged between those with prior research experience and those without such experience. In the discussion, we explore the key findings and outline the implications for safeguards in mental illness research.     

Reminders of an agentic ingroup buffer disease uncontrollability

Chronic illness has negative impacts beyond those on physical health. In particular, because it is often experienced as uncontrollable, chronic illness might reduce people's general sense of personal control and, subsequently, personal well-being. Drawing on recent theory and research, we proposed and tested in four experiments (N_total = 1323) a potential buffer to these negative effects: thinking about an agentic social ingroup in one's life. In Study 1, patients suffering from a chronic illness that was either high or low in medical disease controllability were asked either to think about an agentic ingroup or a personal issue. Low perceived disease-related control was associated with low perceived personal control only when participants' personal self, but not when their ingroup, was salient. In three follow-up vignette studies, we asked participants to take the perspective of a person who suffered from a health problem of low medical disease controllability and attended a self-help group that was described as either high or low in agency. The findings supported the predicted buffering effect: participants who reflected on a target suffering from a low control disease thought that the target would experience more personal control when the agentic (vs. the nonagentic) self-help group was salient. These findings suggest ingroups can serve as a source of personal control in the context of health-related threats to the extent that they are perceived as agentic. Thus, focusing on agentic properties of (health-related) ingroups might be a promising novel strategy when designing effective group-based interventions to cope with chronic illness.     

Understanding the Lived Experience of Formerly Homeless Adults as They Transition to Supportive Housing

The researchers conducted in-depth interviews with formerly homeless adults who had moved to supportive housing to understand their perceived occupational needs and the factors that affected their transition. A qualitative research design with four participants who had a history of substance abuse and mental illness was used. Participant interviews that addressed categories of daily living and personal satisfaction produced data that were coded for analysis using conventional content analysis. Mega themes emerged that related to factors shaping the housing transition and maintenance experience. Occupational therapists can use these findings to create informed interventions to enhance this population's occupational performance.     

Being the Shadow: Witnessing Schizophrenia

This essay discusses Susan Smiley’s documentary film, Out of the Shadow (2004), and Tina Kotulski’s memoir, Saving Millie: A Daughter’s Story of Surviving Her Mother’s Schizophrenia, as filmic and narrative treatments of their mother’s schizophrenia. Mildred Smiley, and her diagnosis of and treatment for schizophrenia, is at the center of both her daughters’ treatments of mental illness, and in these texts, all three become witnesses to the multiple experiences of mental illness and the multiple events of psychiatric power. As I will argue, these two texts are treatments of schizophrenia that both see and don’t see Mildred Smiley’s experience of mental illness. Through these texts, we—viewer and reader—are asked to look again, or to look for the first time, at mental illness, and we are positioned as having the agency to look or look away. As we look and try to make sense of what we see (and don’t see), we too participate in the production of mental illness as a category of analysis.     

Shared Near-Death and Related Illness Experiences: Steps on an Unscheduled Journey

This paper discusses the key social features in shared journeys into near-death experiences (NDEs) and related illness experiences of other people. Of special interest in this paper is the way that those persons who are not ill or near death account for their sharing of these experiences. These are often people who are caregivers or intimates of NDErs or dying people but who claim to share part of the NDE or dying experience. We provide case examples to illustrate the essential psychological and social experiences that these people undergo during their joint experiences with NDErs and other seriously ill people. From an analysis of the recurrent themes emergent in these joint experiences we identify and discuss the major conceptual steps in the creation of their personal explanations: (1) Exit the Familiar, (2) Extraordinary Experiences, (3) Extraordinary Experiences End, (4) What Happened to Me? (5) The World Responds, and (6) The Return of the Native. In the final analysis, the processes that these people undergo in the search for explanations is similar in most respects to those at the center of near-death and other related illness experiences.     

Mothers’ Perspectives on Their Child’s Mental Illness as Compared to Other Complex Disorders in Their Family: Insights to Inform Genetic Counseling Practice

To facilitate the development of a therapeutic alliance in genetic counseling, it is important that the counselor understands how families might perceive the condition that constitutes the reason for the referral. Through training and professional practice, genetic counselors develop a thorough understanding of families' perceptions of the conditions that are common indications for genetic counseling. But, for referral indications that are less frequent, like serious mental illnesses, genetic counselors may feel less confident in their understanding of the family's experience, or in their ability to provide psychosocial support when serious mental illness is reported in a family history. This may impede the establishment of a therapeutic alliance. As research shows that most referrals for genetic counseling related to serious mental illness are for female first-degree family members of affected individuals, we sought to explore how this group perceives serious mental illness. To provide a frame of reference with which genetic counselors may be more familiar, we explored how women perceived serious mental illness compared to other common complex disorders in their family. We conducted semi-structured interviews with women who had a child with a serious mental illness (schizophrenia, schizoaffective disorder, bipolar disorder) and a first-degree relative with another common complex disorder (diabetes, heart disease, cancer). Interviews were transcribed and subjected to thematic analysis. Saturation was reached when nine women had participated. Serious mental illness was perceived as being more severe and as having a greater impact on the family than diabetes, heart disease, or cancer. Themes identified included guilt, stigma, and loss. Some of the most important issues that contribute to mothers' perceptions that serious mental illness is more severe than other common complex disorders could be effectively addressed in genetic counseling. Developing a heightened awareness of how family members experience a relative's mental illness may help genetic counselors to be better able to provide psychosocial support to this group, whether serious mental illness constitutes the primary reason for referral or appears in the family history during counseling for a different referral reason.     

Attribution and expressed emotion in the relatives of patients with schizophrenia.

Indexes of expressed emotion (EE) in 58 relatives of patients with schizophrenia were related to those relatives' spontaneously expressed causal beliefs about the illness and about related symptoms and behaviors. Relatives made attributions predominantly to factors external, universal, and uncontrollable from their own perspective, and to factors internal, universal, and uncontrollable from the patient's perspective. Low-EE relatives were similar in their attributions to emotionally overinvolved relatives. Compared with these two groups, critical and/or hostile relatives made more attributions to factors personal to and controllable by the patient. Subsequent analyses suggested that hostile relatives were further characterized by making more attributions to factors internal to the patient and by making attributions with fewer causal elements.     

Schizophrenia and postmodern philosophy

Abstract

This essay examines the postmodern idea that the schizophrenic process can be seen as a strategy of disruption, to be directed against the stability and productive forces of modern capitalism. The modern idea that schizophrenia itself is a correctable form of mental illness is also examined, and this assumption is related to issues about power and control encountered in cultural, social and psychological studies. These issues center around the different ways that modernist and postmodernist thinkers approach schizophrenic experience. Issues pertaining to social control and its connection to the nature of personal identity are examined, as are modernist and postmodernist responses to the double bind experience. Strategies of modernist control and postmodernist disruption are compared and contrasted.     

Deficits in the ability to recognize one's own affects and those of others: associations with neurocognition, symptoms and sexual trauma among persons with schizophrenia spectrum disorders

While many with schizophrenia experience deficits in metacognition it is unclear whether those deficits are related to other features of illness. To explore this issue, the current study classified participants with schizophrenia as possessing a deficit in both awareness of their own emotions and those of others (n = 30), aware of their own emotions but unaware of the emotions of others (n = 50) and aware of their own emotions and of other’s emotions (n = 17). Groups were compared on assessments of neurocognitive function, symptoms, and history of sexual trauma. ANCOVA controlling for education found that the group unaware of their own emotions and those of others demonstrated poorer verbal memory, processing speed, executive function, less emotional discomfort and higher levels of disorganization symptoms relative to the other groups. The group aware of their own emotions but not those of others had a significantly higher report of childhood sexual abuse.     

The Impact of Case Characteristics and Prior Jury Experience on Jury Verdicts1

An archival analysis of records from 206 criminal cases was used to evaluate the impact of personal and situational factors on jury verdicts. In particular, we evaluated whether repeated jury service produced bias in jurors that was sufficient to affect jury decisions. A variety of case characteristics and indices of prior jury experience was examined for their relative impact on trial outcomes. Several of the case characteristics were related to verdicts, but the personal characteristics were not. Although more than half of the juries contained experienced jurors, juror experience had little influence on verdicts in either major or subsidiary analyses. However, there was a slight tendency for small juries with large proportions of experienced jurors to convict. This result is consistent with data from Kentucky; a meta-analysis across the two data sets indicates that it is a reliable finding. The results have implications for the determination of jury size. We suggest that future research examine the possibility that increasing jury size may reduce the influence of an individual's bias by providing a balance of other jurors with no or offsetting biases.     

Individual differences in susceptibility to infection and illness following respiratory virus challenge

Abstract

The aim of the present research was to investigate whether susceptibility to experimentally-induced respiratory virus infections and illness is related to measures of personality, physiological state, performance efficiency, and subjective ratings of alertness and motivation obtained prior to virus challenge. Two studies, using different viruses, showed that volunteers who subsequently developed colds had higher temperatures prior to virus challenge than those who remained free from illness. Similarly, those who later had colds were worse than other volunteers on certain performance tests given in the pre-challenge period. The results also showed that task-related motivation was related to subsequent infection. Personality scores were poor predictors of infection and illness, the only exception being introversion, which, in one study, was related to the likelihood of developing a sub-clinical infection.     

Appraisals of control and predictability in adapting to a chronic disease

In a sample of 92 patients with rheumatoid arthritis, we examined interrelations among various control appraisals, illness predictability, psychosocial adjustment, mood, and illness status. Perceiving greater personal control over the disease and symptoms and perceiving greater health-care-provider control over symptoms were associated with greater illness predictability. Patients reported more personal control over their symptoms than over the course of the disease and thought that their health care providers had more control over disease course than they did themselves. Multiple regression analyses showed that perceiving greater personal control over one's medical care and treatment was associated with positive mood and psychosocial adjustment. Negative mood was also associated with the belief that providers have greater control over the patient's daily symptoms. Patients who had a more severe disease and expressed greater personal control over its course reported greater mood disturbance and were rated as exhibiting less positive adjustment, but those who had more severe daily symptoms and expressed greater personal control over their symptoms reported less mood disturbance. These findings are discussed in terms of the possible benefits of patients' active participation in their care and the implications of perceiving personal and others' control over more or less controllable aspects of the illness, especially when the illness is more severe.     

Emotion-cognition interaction in people at familial high risk for schizophrenia: the impact of sex differences

Cognitive deficits are fundamental to schizophrenia, and research suggests that negative emotion abnormally interferes with certain cognitive processes in those with the illness. To a lesser extent, cognitive impairment is found in persons at risk for schizophrenia, but there is limited research on the impact of emotion on cognitive processing in at-risk groups. It is unknown whether interference of negative emotion precedes illness and contributes to vulnerability for the disorder. We studied the extent to which negative emotional information interferes with working memory in 21 adolescent and young adult first-degree relatives of people with schizophrenia and 22 community controls. Groups were comparable in age, sex, education, ethnicity, and socioeconomic status. Primary measures were n-back tasks varying in cognitive load (1-back, 2-back, 3-back) with emotional faces (neutral, happy, fearful) as stimuli. The control group's response times (RTs) and the women's RTs, regardless of group, differed depending on the emotion condition. In contrast, the RTs of the relatives and of the men, regardless of group, did not differ by emotion. This study is the first to examine emotion-cognition interactions in relatives of individuals with schizophrenia. Reduced efficiency in processing emotional information may contribute to a greater vulnerability for schizophrenia that may be heightened in men. Additional research with larger samples of men and women is needed to test these preliminary findings.     

the experience of change and its impact on workers who self‐identify as doing well with change that affects their work

This study sought to understand more about the experience of workers who self‐identified as doing well within the context of volatile and changing work situations. The research results indicate that even those workers who report doing well with change experience a myriad of work‐related, personal life, attitude and approach, and professional life changes. The impacts of these changes can be categorized by theme: psychological, professional/work, emotional, personal/family life, physical, and cultural. Results are framed within the psychological thriving literature. Implications for organizations, counselors, and future research are discussed.     

Schizophrenia, dissociation, and consciousness

Current thinking suggests that dissociation could be a significant comorbid diagnosis in a proportion of schizophrenic patients with a history of trauma. This potentially may explain the term “schizophrenia” in its original definition by Bleuler, as influenced by his clinical experience and personal view. Additionally, recent findings suggest a partial overlap between dissociative symptoms and the positive symptoms of schizophrenia, which could be explained by inhibitory deficits. In this context, the process of dissociation could serve as an important conceptual framework for understanding schizophrenia, which is supported by current neuroimaging studies and research of corollary discharges. These data indicate that the original conception of “split mind” may be relevant in an updated context. Finally, recent data suggest that the phenomenal aspects of dissociation and conscious disintegration could be related to underlying disruptions of connectivity patterns and neural integration.     

Preventing clinical deterioration in the course of schizophrenia: the potential for neuroprotection

Schizophrenia, which has both genetic and environmental causes, is associated with persistent symptoms and severe functional disability. The illness lies dormant during the premorbid phase and begins to express itself during adolescence or early adulthood. Clinical progression and deterioration reaches a plateau in which the patient is said to be in the chronic phase of illness and at which point restoration of prior functioning is unlikely. The severe deficits associated with schizophrenia are often the result of progression of illness due to lack of appropriate treatment. However, recent advances in neuropsychiatry have led to very early identification of individuals at risk for psychosis, even during the prodromal stage when psychosis has not yet manifested clinically. While research has demonstrated that the efficacy of antipsychotics is limited when used during the chronic phase of illness, these medications can effectively control symptoms and prevent progression of illness when used during the early stages of illness. The evidence of neural degeneration in the pathophysiology of schizophrenic illness suggests that there may be treatment opportunities through neural protection. Neuroprotection, which refers to treatment that helps maintain central nervous system functionality in response to neurobiologic stress, may be responsible for prevention of disease progression and deterioration. In this monograph, Jeffrey L. Lieberman, MD, introduces the phases of schizophrenic illness in relation to the concepts of progression and deterioration. Next, Dolores Malaspina, MD, reviews the neurodevelopmental and neurodegenerative components of schizophrenia. Finally, L. Fredrik Jarskog, MD, focuses on the neuroprotective aspects of therapeutic interventions in schizophrenia.     

Emotion deficits in schizophrenia: timing matters

The past two decades of research on emotional response in schizophrenia has demonstrated that people with schizophrenia do not have a marked deficit in reported emotional experience in the presence of emotionally evocative stimuli. However, the extent to which people with schizophrenia maintain their emotional state to guide future behavior remains a largely unexplored area of investigation. In the present study, we tested hypotheses about whether people with schizophrenia maintained their emotional state in the absence of emotionally evocative stimuli. In addition to reported emotional experience, we measured startle response magnitude both during the viewing and after the offset of emotional pictures to assess whether people with schizophrenia (n = 31) and without schizophrenia (n = 28) differ in their patterns of immediate response to emotional pictures and in their patterns of maintenance of these responses. Our findings indicated that people with and without schizophrenia did not differ in their self-report or startle response magnitude during presentation of emotional pictures. However, healthy controls maintained these responses after the stimuli were removed from view, but people with schizophrenia did not.     

Schizotypy: An Organizing Framework for Schizophrenia Research

ABSTRACT— Schizophrenia is the most devastating form of psychopathology known to humankind, and it has been slow to yield clues to its origins. Meehl's (1962, 1990) model detailed the nature of the latent liability for schizophrenia known as schizotypy and provided a major organizing function for research on schizophrenia. The schizotypy model integrates genetic and environmental contributions to liability as well as accounting for a range of clinical outcomes, all deriving from a genuine liability for the illness. Schizotypy, as a latent personality organization that harbors the liability for schizophrenia, provides a framework for detecting fundamental features of liability to schizophrenia prior to the onset of clinical illness. The schizotypy model is reviewed, the strategic benefits of it are discussed, and methods for detecting schizotypy are presented. A focus on perceptual aberrations—a schizotypic feature—in individuals unaffected by schizophrenia has yielded valuable clues to preclinical disturbances in neurocognitive processes, risk for schizophrenia among biological relatives, and genomic substrates, all of which are of interest to schizophrenia researchers.