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Purpose – This chapter presents a case for reframing medical sociology to focus on diagnosis as a pivotal category of analysis via an extended literature review of the diagnosis as a tool of medicine.

Methodology/approach – Conceptual overview.

Practical implications – By reviewing the range of social functions served by diagnosis, and the similarly wide assortment of social forces that shape diagnostic categories, this chapter pushes social scientists and theorists to consider diagnosis as a cornerstone to the understanding of health, illness, and disease.

Originality/value of paper – Building on Brown's earlier call for a sociology of diagnosis, this chapter sets forth potential parameters for this field. It defines how the study of diagnosis is dissipated across myriad areas of scholarship, including medicalization, disease theory, ethics, classification theory, and history of medicine. Extirpating diagnosis and revealing it for specific discussion provides an opportunity to study topics such as illness experiences, health social movements, and disease recognition from a different and rich perspective.

Throughout the late 19th and early 20th centuries, one of the many techniques used by physicians and psychiatrists to diagnose patients involved external and highly public examination. Typically conducted as a lecture to other medical experts and students, the patient was placed in the center of a round room with onlookers arranged in tiered seating to guarantee an unobstructed view. As the lead physician detailed the list of symptoms, using the patient's body as an illustration, observers witnessed the behavioral signs for themselves and discussed the possible underlying conditions or pathologies. This process of consultation and naming worked to increase the relative reliability among experts and bolster the professional reputations of medicine and psychiatry alike (Conrad & Schneider, 1992; Gillis, 2006; Grob & Horwitz, 2010). As researchers have noted (Aronowitz, 2001; Foucault, 1973), this change from focusing on disparate, idiosyncratic symptoms as expressions of individual illness to a system that recognized disease states comprised of symptom clusters marks a historical turning point in the history of medicine. The shift toward a classification scheme that linked medicine with science and technology bolstered medical authority and the power of physicians. In addition to professional credentials, accumulated knowledge, and institutional legitimacy, the authority of modern medicine both rests on and is expressed by medicine's decisive power to name and categorize through diagnosis (Jutel, 2009). Even as medical prestige has eroded, ceding some of its power to other entities,¹ physicians remain the final arbiter of official medical categories (Pescosolido, 2006), judges of what is, and what is not, a “real” diagnosis. In the diagnostic process, one looks within to reveal the nature of disease from without – empirical observation becomes immutable fact. Of course, as critical perspectives on medicine have long pointed out (Conrad & Schneider, 1992; Zola, 1972), the scientific “fact” of one time and place is the mythology or ignorance of another. Diagnosis, as both category and process (Blaxter, 1978), is infused with all manner of things social, historical, and cultural. This volume explores some of these infusions. In so doing, it aims to clarify and contribute to the emerging sociology of diagnosis – an endeavor first called for by Brown (1990), but more recently revived by Jutel (2009).

The chapters PJ McGann and David J. Hutson have assembled for this volume are not only timely, coinciding with the appearance of DSM-V, but mark a defining moment in which a new subfield of medical sociology has emerged. Diagnosis, which refers both to diagnostic categories and the process of creating and applying them, is a central feature (Blaxter, 1978) – if not the central feature of medical work. Annemarie Jutel, who has done much to build the sociology of diagnosis, has described the wide array of “work” diagnosis performs in the medical world:Diagnosis is integral to medicine and the way it creates social order. It organizes illness: identifying treatment options, predicting outcomes, and providing an explanatory framework. Diagnosis also serves an administrative purpose as it enables access to services and status, from insurance reimbursement to restricted-access medication, sick leave and support group membership and so on… (Jutel, 2009, p. 278)

Purpose – To explore the ideological effects and social control potential of diagnostic biopsychiatry and encourage the sociology of diagnosis to retain key insights of early medicalization scholarship.

Methodology – As the sociology of diagnosis emerges from medicalization, it is imperative that the new sub-specialty retains the critical edge of the early scholarship. With this in mind the paper reviews key aspects of the medicalization thesis, emphasizing the links between medical definitions and social control processes (e.g. Conrad, 1992; Conrad & Schneider, 1992; Zola, 1972). Based on this review scholars are urged to be mindful of the “diagnostic imaginary” -- a way of thinking that conceals the presence of the social in diagnoses, and which closes off critical analysis of the existential-connectedness and political nature of diagnoses.

Findings – The paradigm shift from dynamic to diagnostic psychiatry in DSM-III opened the door to a new biomedical model that has enhanced American psychiatry's scientific aura and prestige. With the increased presence and ordinariness of diagnoses in everyday life, an illusory view of diagnoses as scientific entities free of cultural ties has emerged, intensifying the dangers of medical social control.

Social implications – By illustrating that diagnoses are cultural objects imbued with political meaning, the ideological effects and social control potential of diagnostic biopsychiatry may be mitigated.

Purpose – The purpose of this chapter is to theorize the relationship between diagnosis and medicalization through an examination of the medicalization of childhood gender variance and the Gender Identity Disorder of Childhood diagnosis.

Methodology/approach – The chapter examines textual data (published clinical and research literatures, and critiques of the diagnosis appearing in a range of venues) to track how childhood gender variance is medicalized over time and the role of diagnosis in that medicalization.

Findings – While diagnosis certainly plays a role in shoring up medicalization, this case study reveals the many ways in which diagnoses may also become key tools in attempts to curtail medicalization.

Research limitations/implications – As a case study, the findings are not generalizable to all diagnoses. As a study of an instance of the medicalization of deviance, these findings may be particularly applicable to analogous cases.

Social implications – These findings show the sometimes tenuous nature of medicalization processes, and the social uses of diagnoses in those processes.

Originality/value of paper – This chapter sheds light on a relationship that is often assumed to be unidirectional (e.g., that the formation of diagnosis results in increased medicalization), and answers calls for a more nuanced sociology of diagnosis, including greater attention to the relationship between diagnosis and medicalization.

Purpose – I analyze how laypersons and professionals navigate challenges to the legitimacy of Attention Deficit/Hyperactivity Disorder (AD/HD). The disorder is modeled as a cultural object manifested in the discursive practices of multiple actors forming a knowledge coalition of professionals, laypersons, governmental, and corporate actors. Coalition members faced challenges to the disorder derived from popular skepticism and from professional's contradictory knowledge claims and diagnostic practices.

Methods – I observed these processes in a two-year, ethnographic case study supplemented with a two-stage, open-ended interview with core members of an AD/HD informational and support group.

Findings – Parents and coalitional professionals managed these challenges differently depending on the status of the source (professional vs. nonprofessional) and the alignment (within the coalition vs. nonaligned) of the challenge. Nonprofessional skeptics were easily countered as ignorant moralists who lacked objective knowledge of the disorder – a tactic termed credentialism. The contradictory diagnoses and treatments of professionals were managed as instances of mal-diagnosis – a construct employed by both professionals aligned with the diagnosis and laypersons associated with the disorder. Finally, while parents actively sought a diagnosis as an objective valorization of their status, they remained skeptical of AD/HD; however, in achieving diagnosis they also worried that the methods used to establish a diagnosis were possibly unreliable.

Originality/value – This study contributes to the emergent sociology of diagnosis by describing the techniques used by laypersons and some professionals in maintaining a contentious diagnosis.

Historically, it has been common practice for doctors and parents to withhold the diagnosis from their minor intersex patients. This study seeks to integrate intersex youth experiences into the growing body of literature on diagnosis disclosure for intersex patients.

Using gender structure theory as a model, 16 intersex youth were given in-depth surveys regarding their experiences with their intersex identity in individual, interactional, and institutional contexts.

Participants more positively experience intersex than the earlier generations of intersex people. They were not deeply troubled by their diagnosis as doctors have historically feared, and they are open about their diagnosis with their non-intersex peers and teachers. They also find peer support valuable.

Data was collected from a single event and cannot represent all intersex youth. Future research must continue to engage with intersex youth experiences both inside of and beyond activist and support group networks.

These findings are strong exploratory evidence for the importance of diagnosis disclosure for intersex youth. Policies of withholding intersex diagnoses in clinical and familial contexts should be reevaluated in light of the experiences of intersex youth.

Diagnosis disclosure for intersex youth creates the potential for increased medical decision-making participation and increased capacity for activism and community building around intersex issues.

Our results encourage future studies that center the experiences of intersex youth, for we conclude that theorizing the lived experiences of intersex people is incomplete without their perspectives.

Purpose – In this chapter, I examine the ways that various trauma carriers, including social movements, self-identified survivors, professional organizations, and advocates make public claims about trauma and the PTSD diagnosis as they work to define moral and political issues.

Methodology/approach – Employing the method of social pattern analysis, I analyze a variety of narrative data pertaining to issues such as child sexual abuse, war, slavery, and genocide.

Findings – Trauma carriers engage in significant social memory work and collective identity work, define social problems, and practice social activism as they address the causes and consequences of psychological suffering. Within the context of modern diagnostic psychiatry, the PTSD diagnosis stands out as a unique narrative of social illness. The PTSD diagnosis is a powerful cultural script that various individuals and interest groups use to interpret mental health symptoms while attributing psychological consequences to social causes as opposed to problems rooted in the individual's psyche (as with psychoanalysis) or neurophysiology (as with modern diagnostic psychiatry). By implication, the social world must be “cured” for the individual to be healthy.

Originality/value of paper – I detail the unique sociocognitive implications of the PTSD diagnosis, highlighting its impact on our collective understanding of particular traumatic experiences and the shared nature of posttraumatic affect. I show the relevance of social memory studies, the more broadly conceived sociology of culture and cognition – especially as it pertains to collective identity and classification norms, the sociology of health-focused social movements, and the analysis of social problems claims-making to an emerging sociology of diagnosis.

Purpose – The aim of this study was to examine the retrospective accounts of young adults who were diagnosed with ADHD in childhood to explore how children diagnosed with ADHD learn about and experience their diagnoses.

Methodology – Ten 18–22 year-olds who were diagnosed with ADHD in childhood participated in semi-structured, in-depth interviews. The interviews were transcribed verbatim, coded, and emergent themes were identified.

Findings – Data analysis revealed that children often experience both aspects of stigma and empowerment as they learn about and make sense of their diagnoses. The data suggest that parents, who often act as mediators between the medical community and their children, delivering and explaining diagnoses to their children, can influence this process greatly. Parents can help children utilize their diagnoses to develop coping strategies for their disorder, or exacerbate stigma by withholding information about diagnoses. Participants suggested that parents should talk openly about diagnoses with children and offer coping strategies to employ.

Research limitations – Findings are based on retrospective accounts, and the participants' views are not intended to be representative of the views of all children with ADHD. A goal of future research is to expand this study to other pools of participants, including children.

Practical implications – The findings can inform the delivery and management of children's ADHD diagnoses.

Originality/value – The current study adds to research on the sociology of diagnosis and medicalization of mental health by examining the experiences of children diagnosed with ADHD.

Purpose – To assess labeling and social control of clients in contemporary mental health care organizations.

Methodology/approach – Fifteen months of observation in two multiservice mental health care organizations, interviews with workers and clients, and analysis of organizational documents.

Findings – The organizations used a variety of organizational labels, both official and informal, which served distinct purposes in organizational life and which did not always agree in their construction of the client. Official mental illness diagnosis was a bureaucratic label, while informal labels determined the types of social control to which clients were subjected. Clients who were informally labeled severely mentally ill were subject to integrative social control, while exclusionary social control was applied to those informally seen as not being severely mentally ill. Unlike in classic studies of mental health care, looping processes, in which client behaviors are viewed as symptoms, do not reliably predict the types of labels or social control applied to clients.

Implications – It is important for a sociology of diagnosis to contextualize official diagnosis in the repertoire of organizational labels applied to clients in mental health care, recognizing that it plays a limited but important role in organizational life. Informal labels, which at time conflict with official diagnosis, play a more prominent role in the management of everyday organizational life.