Nev Jones

Experiences of hearing voices: analysis of a novel phenomenological survey

Summary Background Auditory hallucinations—or voices—are a common feature of many psychiatric disorders and are also experienced by individuals with no psychiatric history. Understanding of the variation in subjective experiences of hallucination is central to psychiatry, yet systematic empirical research on the phenomenology of auditory hallucinations remains scarce. We aimed to record a detailed and diverse collection of experiences, in the words of the people who hear voices themselves. Methods We made a 13 item questionnaire available online for 3 months. To elicit phenomenologically rich data, we designed a combination of open-ended and closed-ended questions, which drew on service-user perspectives and approaches from phenomenological psychiatry, psychology, and medical humanities. We invited people aged 16–84 years with experience of voice-hearing to take part via an advertisement circulated through clinical networks, hearing voices groups, and other mental health forums. We combined qualitative and quantitative methods, and used inductive thematic analysis to code the data and χ2 tests to test additional associations of selected codes. Findings Between Sept 9 and Nov 29, 2013, 153 participants completed the study. Most participants described hearing multiple voices (124 [81%] of 153 individuals) with characterful qualities (106 [69%] individuals). Less than half of the participants reported hearing literally auditory voices—70 (46%) individuals reported either thought-like or mixed experiences. 101 (66%) participants reported bodily sensations while they heard voices, and these sensations were significantly associated with experiences of abusive or violent voices (p=0·024). Although fear, anxiety, depression, and stress were often associated with voices, 48 (31%) participants reported positive emotions and 49 (32%) reported neutral emotions. Our statistical analysis showed that mixed voices were more likely to have changed over time (p=0·030), be internally located (p=0·010), and be conversational in nature (p=0·010). Interpretation This study is, to our knowledge, the largest mixed-methods investigation of auditory hallucination phenomenology so far. Our survey was completed by a diverse sample of people who hear voices with various diagnoses and clinical histories. Our findings both overlap with past large-sample investigations of auditory hallucination and suggest potentially important new findings about the association between acoustic perception and thought, somatic and multisensorial features of auditory hallucinations, and the link between auditory hallucinations and characterological entities. Funding Wellcome Trust.

Stigma and intellectual disability: potential application of mental illness research.

PURPOSE Individuals with intellectual disabilities (ID) and individuals with mental illness are consistently found to be among the most socially excluded populations and continue to face substantial health, housing, and employment disparities due to stigma. Although this has spurred extensive research efforts and theoretical advancements in the study of stigma toward mental illness, the stigma of ID has received only limited attention. In this article we explore the application of mental illness stigma research for ID. DESIGN We carefully reviewed the existing research on mental illness stigma as a foundation for a parallel summary of the empirical literature on attitudes and stigma related to ID. RESULTS Based on our review, there has not been a systematic approach to the study of stigma toward ID. However, multilevel conceptual models of stigma have received much attention in the mental illness literature. These models have been used to inform targeted interventions and have application to the study of the stigma process for individuals with ID. Nonetheless, there are indeed key differences between-as well as substantial variability within-the ID and mental illness populations that must be considered. CONCLUSIONS Stigma is an issue of social justice impacting the lives of individuals with ID, yet there remains virtually no systematic framework applied to the understanding of the stigma process for this group. Future research can draw on the stigma models developed in the mental illness literature to guide more rigorous research efforts and ultimately the development of effective, multilevel stigma-change strategies for ID.

Better than mermaids and stray dogs? Subtyping auditory verbal hallucinations and its implications for research and practice

The phenomenological diversity of auditory verbal hallucinations (AVH) is not currently accounted for by any model based around a single mechanism. This has led to the proposal that there may be distinct AVH subtypes, which each possess unique (as well as shared) underpinning mechanisms. This could have important implications both for research design and clinical interventions because different subtypes may be responsive to different types of treatment. This article explores how AVH subtypes may be identified at the levels of phenomenology, cognition, neurology, etiology, treatment response, diagnosis, and voice hearer’s own interpretations. Five subtypes are proposed; hypervigilance, autobiographical memory (subdivided into dissociative and nondissociative), inner speech (subdivided into obsessional, own thought, and novel), epileptic and deafferentation. We suggest other facets of AVH, including negative content and form (eg, commands), may be best treated as dimensional constructs that vary across subtypes. After considering the limitations and challenges of AVH subtyping, we highlight future research directions, including the need for a subtype assessment tool.

Interdisciplinary Approaches to the Phenomenology of Auditory Verbal Hallucinations

Despite the recent proliferation of scientific, clinical, and narrative accounts of auditory verbal hallucinations (AVHs), the phenomenology of voice hearing remains opaque and undertheorized. In this article, we outline an interdisciplinary approach to understanding hallucinatory experiences which seeks to demonstrate the value of the humanities and social sciences to advancing knowledge in clinical research and practice. We argue that an interdisciplinary approach to the phenomenology of AVH utilizes rigorous and context-appropriate methodologies to analyze a wider range of first-person accounts of AVH at 3 contextual levels: (1) cultural, social, and historical; (2) experiential; and (3) biographical. We go on to show that there are significant potential benefits for voice hearers, clinicians, and researchers. These include (1) informing the development and refinement of subtypes of hallucinations within and across diagnostic categories; (2) “front-loading” research in cognitive neuroscience; and (3) suggesting new possibilities for therapeutic intervention. In conclusion, we argue that an interdisciplinary approach to the phenomenology of AVH can nourish the ethical core of scientific enquiry by challenging its interpretive paradigms, and offer voice hearers richer, potentially more empowering ways to make sense of their experiences.

What is the impact of self-stigma? Loss of self-respect and the “why try” effect

Abstract Background: The “Why Try” phenomenon, a consequence of self-stigma, is a sense of futility that occurs when people believe they are unworthy or incapable of achieving personal goals because they apply the stereotypes of mental illness to themselves. Aims: This study examines a four-stage model of self-stigma (aware, agree, apply, and self-stigma harm) and examines the “why try” effect as a result. We do that by testing a measure of “why try.” Method: Two hypothetical path models were tested. In the first, applying stereotypes to oneself leads to diminished self-respect and a sense of “why try”. In the second, the effect of applying stereotypes on “why try” is mediated by diminished self-respect. Participants completed the “why try” measure along with measures of self-stigma, public stigma, recovery, and empowerment. Results: Results show application of stereotypes to oneself predicts diminished self-respect and “why try”. “Why try” was significantly associated with agreement with public stigma, depression, and diminished sense of personal recovery. Conclusions: Findings from this study reveal the complex impact of self-stigma demonstrating its emotional and behavioral consequences. Implications for impacting self-stigma are discussed.

Mad Pride: Reflections on Sociopolitical Identity and Mental Diversity in the Context of Culturally Competent Psychiatric Care

Although the consumer/survivor/ex-patient (c/s/x) movement has influenced mental health services and human rights discourse for several decades, the broader movement’s heterogeneity, and the relevance of its deeper sociopolitical implications to the everyday practice of mental health professionals, have gone largely unexplored in the interdisciplinary psychiatric literature (for exceptions, see Coleman, 2008; Farber, 2012; Lewis, 2006; Morrison, 2005). The purpose of this commentary is to provide a brief overview of the movement to de-pathologize unusual mental states and to discuss implications for mental health nurses and other providers. The c/s/x movement has historically been best known for its trenchant criticisms of coercive mainstream psychiatric practices and reductionist models of mental illness (Chamberlin, 1978; Coleman, 2008; Morrison, 2005). Various groups and individuals within the movement, however, have moved beyond treatment-centered activism to articulate a broader culture of madness (Church & Reville, 2012; Farber, 2012; Reaume, 2006). These activists have re-claimed the language of madness to challenge the contemporary medical monopoly on the labeling and description of unusual mental states. Activists also have emphasized the connections between madness and art, theater, spirituality, and a valuable sensitivity to individual and collective pain. Mad-identified groups have organized parades and rallies that, like the LGBTQ pride events after which they have often been modeled, function as transgressive, but also productive, displays of difference (e.g., carnivalesque “bed pushes” with protesters in hospital gowns and restraints) that allow socially excluded individuals to visibly commandeer and collectively re-occupy experiences typi-

Peer Support, Self-Determination, and Treatment Engagement: A Qualitative Investigation

OBJECTIVE To address gaps in the literature concerning the relationships among participation in peer-led mental health programs, the development of self-determination in service use, and medication use and engagement with medication prescribers and other traditional providers, we conducted focus groups with individuals involved in Wellness Recovery Action Plan (WRAP) programs. METHOD We carried out five focus groups with 54 WRAP participants and/or facilitators, and analyzed transcripts using a grounded theory approach. RESULTS Emergent themes revealed differences of opinion regarding the role and value of medication adherence, broad agreement on the benefits of WRAP in increasing self-determination and self-awareness, and positive effects of participation on patient self-advocacy, medication-related decision-making and meaningful engagement with traditional providers. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE Findings emphasize the importance of examining the influence of stand-alone peer-led program involvement on relationships with traditional providers and decisions regarding medication use, as well as the heterogeneity of consumer treatment values, choices, and associated outcomes.

Beyond the sensory: Findings from an in-depth analysis of the phenomenology of “auditory hallucinations” in schizophrenia

Objective: Research concerning the subjective sensory qualities of auditory hallucinations (AH) in people diagnosed with schizophrenia is scarce. Our goal was to investigate the “auditoriness” of AH and their overlap with symptoms grounded in alterations of thought rather than perception. Method: We undertook a detailed analysis of phenomenological interviews with 80 schizophrenia-spectrum voice-hearers. Results: We coded the dominant voice patterns of our subjects and found that only a minority (17.5%) reported a dominant pattern of AH which were experienced as literally auditory. Of dominant AH patterns, 11.3% were instead described as only quasi- or partially auditory, 28.8% as involving a combination of distinctly auditory and thought-like voices, and 15% as unambiguously thought-like. In addition, 5% reported exclusively simple, short-duration AH (e.g. hearing a single word), 12.5% the misperception of actual speech or sounds, and 10% predominantly multisensory voices. We also found substantial overlap between voices and symptoms traditionally considered abnormalities of thought rather than sensation. Conclusion: We believe these findings challenge common assumptions about AH in people diagnosed with schizophrenia, draw attention to potentially important but under-recognized characteristics of voices, and suggest a need for greater recognition of the heterogeneity of voices and the potential clinical as well as theoretical risks of conceptual over-simplification.

God in the brain: Experiencing psychosis in the postsecular United States

There is a growing literature on what contemporary cultural theorists have broadly termed the “postsecular”: the abandonment of clear-cut boundaries between the secular and nonsecular in the industrialized West and an embrace of a complex understanding of what is real that neither accepts nor rejects the supernatural. These new cultural currents may affect not only philosophers and theologians, but also the ways in which individuals with psychosis make sense of their experiences. This paper reports on the key findings of an in-depth qualitative analysis of 19 interviews of individuals diagnosed with psychotic disorders. The majority of participants described ongoing and self-conscious struggles to demarcate their experiences as the products of the real world or a “crazy” mind. With equal frequency, participants weighed and debated competing secular and supernatural explanations, often juxtaposing and blending different explanatory frameworks. We found that this syncretic process affected not only the content of psychotic experiences—what delusions or hallucinations are about—but also the type of arguments or logics used to justify particular interpretations. We discuss the implications of these observations with respect to clinical practice and the broader phenomenology of psychosis, challenging often oversimplified discourse on “insight” and suggesting that polarization(s) between “biomedical” and “psychosocial” explanations may be of less relevance to patients’ real-world experiences than is often assumed.

“Did I push myself over the edge?”: Complications of agency in psychosis onset and development

Objective: To investigate the subjective experience of agency in the onset and early development of psychosis. Method: We conducted 19 in-depth interviews with a sample of individuals with self-reported diagnoses of schizophrenia and/or affective psychosis. Interviews focused on participants’ experiences of agency and control in the onset and development of positive psychotic symptoms. Interviews were coded and transcripts analyzed by service-user researchers. Results: The majority of participants reported multiple ways in which they experienced their own agency or intentionality as involved in the initial onset of psychosis, in self-conscious engagement with symptom structure and content, and in their elaboration and development. For many, the moral implications of these felt experiences were considerable, at times leading to shame or guilt. Conclusion: Clinical accounts often stress the imposed, involuntary experience of symptoms and onset. Our project suggests that at least a subset of subjects with psychosis instead experience themselves as partly or fully “responsible” for onset, and actively involved in the shaping and elaboration of positive symptoms. In both clinical practice and future research, we argue that such complications should be explored and grappled with rather than downplayed.