Article Highlight: Vol 40 Issue 4, Media Representations of Opioid Misuse

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The December 2016 issue of Culture, Medicine & Psychiatry is now available here. In this series of article highlights, we will explore publications included in the latest issue. This week, we present a highlight on Julie Netherland and Helena B. Hansen’s “The War on Drugs That Wasn’t: Wasted Whiteness, ‘Dirty Doctors,’ and Race in Media Coverage
of Prescription Opioid Misuse.” 
The article is accessible in full here.

The authors open their discussion by remarking that the media in the United States has increasingly honed in on heroin and opioid use and misuse by white individuals, particularly featuring stories like that of actor Philip Seymour Hoffman. However, throughout these articles, race is typically not mentioned in conjunction with white opioid users. At the same time, the media has historically depicted drug users as “black and brown,” and demonized these individuals as criminals whose drug use behaviors should be heavily policed.

Thus, the authors assert that there is a “narcotic apartheid” in the media, in which white drug users are insulated from the racist narratives that are attached to opioid misuse amongst non-white individuals. Coded language is typically used to delineate users by race: for instance, using “suburban” or “rural” to refer to white opioid users versus “urban” to indicate non-white users. Classist undertones also shape these narratives, as rural methamphetamine users are derided as ‘hillbillies’ who threaten the moralized order of “whiteness” as suburban and middle class. The type of drugs themselves have taken on racist and classist meanings, such that prescription drug misuse (often ascribed to wealthier, white individuals) is under-prosecuted compared to the use of methamphetamine (poorer, white individuals) and crack cocaine (people of color.)

Despite this, the authors state, it is the racist narrative that remains most prominent in media accounts. Through systematic coding and analysis, Netherland and Hansen found that middle-class white drug users are almost universally characterized in news stories as having “wasted” potential and being “victims” of a challenging climate of drug misuse. They also discovered that stories about drug misuse amongst people of color was not viewed as “newsworthy.” When it was reported, articles focused largely on arrests made or on convictions of drug-related crimes, or on the networks that linked drugs from black and Latina communities to white individuals in the suburbs. In the stories of white opioid users, the articles shifted blame away from the individuals, suggesting they did not ‘intend’ to become addicted. When discussing how to address white drug misuse, the articles most frequently turned to physicians’ prescription practices and the threat of over-prescription. Thus, the solution proposed entails greater regulation of prescription habits: again, beyond the level of the individual user.

Articles on opioid use amongst predominantly non-white, “urban” populations overwhelmingly suggested increased “criminal justice involvement” as the most appropriate response. These articles tended not to craft the stories of non-white opioid users as tragic or accidental. This centralized blame for addiction on non-white opioid users, whereas as noted before, white opioid users tended not to be blamed for their behavior. Further deepening these racist undertones was that the “dirty doctors” (those willing to prescribe opioids to predominantly white patients) reported on in the news were often themselves people of color or immigrants.

The authors conclude that characterizations of opioid news articles as “color-blind” due to the inclusion of stories on white users is misleading. While they agree that the representations of white opioid users demonstrates the impact of drug misuse across racial boundaries, there remains coded language that systematically disparages and marginalizes people of color who use these substances. Netherland and Hansen state that “in short, the problem of race and opioids cannot stop with expansion of access to treatment. Clinicians and health advocates have to address institutional racism, as reflected in media coverage of inner city heroin use versus the prescription opioid epidemic, if they want to dismantle racial exclusions in drug interventions” (page 680.)

Article Highlight: Vol 40 Issue 4, Social Withdrawal in Japan

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The December 2016 issue of Culture, Medicine & Psychiatry is now available here. In this series of article highlights, we will explore publications included in the latest issue. This week, we present a highlight on Ellen Rubinstein’s article “Emplotting Hikikomori: Japanese Parents’ Narratives of Social Withdrawal” (which you can access here.) Rubinstein observes that there has been a flurry of public attention to hikikomori, a socio-medical condition typically experienced by young people that is characterized by increasing, marked social withdrawal.

Rubinstein notes that though there is a perception of hikikomori as a condition of isolation, parents of “hikikomori children” often crafted narratives about their children’s illness that suggested it had discernible stages, signs of progress, and possibility of recovery. These narratives engaged parents in the present, facilitating connectedness between hikikomori children and their families, and thus challenging the assumption that hikikomori is a condition of perpetual or crippling isolation. For instance, some parents at a support group for hikikomori children and their families stated that their children were more mature than others, as their time away from other people encouraged them to be meditative and thoughtful.

One mother, named Kawano-san, first described her son’s hikimori as a process of productive, but not permanent, isolation in an interview with Rubinstein. Kawano-san said that her son’s withdrawal might lend him an opportunity to step away from the social world, assess his future, and prepare for college after initially failing to pass university entrance exams. She felt certain that this period would be one of reflection and reassessment, before the son eventually entered university. Kawano-san also criticized the expectation amongst many Japanese families that children should be extroverted and talkative, instead saying that her son was not pathologically isolated but simply different. Eight months after this initial interview, Kawano-san was interviewed for the second time about her son’s condition. The son had not entered college as Kawano-san expected, but the mother had readjusted her narrative such that she began to acknowledge that path might not be viable for her son. She instead noted that her son could have a disability, or that he simply needed more time to process his feelings. Kawano-san ultimately accepted that her initial expectations did not match her son’s experience, and began to try new approaches to her son’s condition: like encouraging her husband and daughter to write birthday messages to him that might make him feel more welcomed and included in their family unit.

Rubinstein examines similar cases to Kawano-san and her son, finding that many families engaged in a process of narrative emplotment and un-emplotment of their children’s hikikomori. Their narratives thereby gave order or meaning to what otherwise seemed like an ongoing and static psychological condition. Alternatively, they situated their children’s experiences in other contexts: such as expected developmental and social growth, and the efficacy of biomedical interventions or support groups for the condition. Parents of hikikomori children were not inactive bystanders, but rather active interpreters of their children’s experiences and advocates of their unique individual needs. The parents learned to read their children’s condition and support them accordingly, complicating the notion that hikikomori is solely about individual isolation or inaction.

Message from the AAA 2016 Meeting

 

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via Wikimedia Commons

The Culture, Medicine & Psychiatry editorial team sends our greetings this week from the American Anthropological Association 2016 Meeting in Minneapolis, Minnesota. This year’s meeting will be held November 16th-20th, with session listings and other helpful information available here. We hope all of our readers attending the conference have safe travels to– and many productive conversations at– this year’s meeting. As a reminder, we continue to accept guest blog submissions on topics spanning cultural medical anthropology and related disciplines in the social sciences and medical humanities.

Consider submitting an abbreviated version of your AAA conference presentation as a guest blog, or write a commentary on one of the keynote speeches at the event. We look forward to sharing the work and research of our readers with our colleagues on the blog! If you are interested in submitting a guest blog, please contact social media editor Julia Knopes at jcb193@case.edu for details.

As a reminder, there will be no new blog entry posted next Wednesday, November 23rd 2016 in light of the upcoming holiday week.

Best wishes,

The CMP Editorial Team

AAA 2016 Session Highlights: Part 2, Discoveries

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Image via AAA Website

This is the second in a two-part series spotlighting sessions in medical anthropology at the upcoming 2016 Annual Meeting of the American Anthropological Association (AAA) in Minneapolis, Minnesota. In this second installment, we present a selection of sessions on the theme of “discoveries.” For more information about this year’s meeting, click this link.


Sessions on “Discoveries”: New approaches to the anthropological study of medicine and medical systems, and studies of new and contemporary medical technologies/therapies

RETHINKING GENDER NORMATIVITY, SEXUALITY, AND MORALITY THROUGH NON-BIOMEDICAL EPISTEMOLOGIES

Thursday, November 17th 8:00 AM – 9:45 AM

Organizer(s): Venera Khalikova (University of Pittsburgh) and Kristin Bright (Carleton University, Canada)

Chair: Venera Khalikova (University of Pittsburgh)

Discussant(s): Lucinda Ramberg (Cornell University) and Kristin Bright (Carleton University, Canada)

This session will propose new ways of thinking about gender and sexuality as heterogeneous subjects. The papers will examine how gender and sex are configured and reconfigured in biomedicine and complementary or alternative medical and health systems.

DISCOVERING WAYS IN WHICH DEATH OCCURS IN A CULTURAL CONTEXT

Friday, November 18th 8:00 AM – 9:45 AM

Organizer: Erica Borgstrom (Open University, United Kingdom)

Chair: Erica Borgstrom (Open University, United Kingdom)

Discussant: James Green (University of Washington)

In this session, presenters will reveal how death occurs and is interpreted in both biomedical and local cultural contexts. Papers address death, dying, and aging in India, China, the United States, and in migrant communities in Australia.

(RE)DISCOVERING PSYCHEDELICS IN THE 21ST CENTURY

Friday, November 18th 10:15 AM – 12:00 PM

Organizer(s): Shana Harris (University of Central Florida) and Hilary Agro (University of British Columbia, Canada)

Chair(s): Shana Harris (University of Central Florida) and Hilary Agro (University of British Columbia, Canada)

Discussant: Michael Oldani (Concordia University Wisconsin)

Papers in this session will explore the (re)emergences of psychedelic drugs, particularly in the contexts of treatment and medical research, but also beyond the boundaries of biomedicine: including traditional use of ayahuasca, and the use of drugs in rave culture.
NEW DIRECTIONS IN THE INTERSECTION OF MEDICAL ANTHROPOLOGY AND BIOETHICS 

Friday, November 18th 4:00 PM – 5:45 PM

Organizer(s): Eileen Anderson-Fye (Case Western Reserve University) and Jonathan Sadowsky (Case Western Reserve University)

Chair: Paul Brodwin (University of Wisconsin, Milwaukee)

Discussant(s): Rebecca Lester (Washington University, St Louis) and Jonathan Sadowsky
(Case Western Reserve University)

In this session, presenters will offer four different anthropological cases that highlight the intersections of anthropology and bioethics: genomic research in Africa, physician-aided dying, body image and obesity, and transnational healthcare in Brazil.
“BODY-WORK”: SCIENCE AND TECHNOLOGY STUDIES IN MEDICAL ANTHROPOLOGY

Saturday, November 19th 2:30 PM – 2:45 PM

Papers in this session will explore the intersections of medical anthropology and contemporary studies in science and technology. Paper topics include the use of human tissue in continuing medical education, ‘smart machines’ and disability, new genetics sequences technologies in a cancer clinic, neuropsychiatry and resistance, and relationships between nurses and patients in HIV clinical settings.

 

AAA 2016 Session Highlights: Part 1, Evidence

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Image via AAA Website

This is the first in a two-part series spotlighting sessions in medical anthropology at the upcoming 2016 Annual Meeting of the American Anthropological Association (AAA) in Minneapolis, Minnesota. Though not intended to be exhaustive in scope, this series will highlight a selection of sessions at the AAA that may interest our readers and conference attendees. The sessions spotlighted here centered around two themes: evidence (Part 1) and discoveries (Part 2.) These two subjects are also the core themes of this year’s annual meeting. For more information, find details about this year’s conference at this link.


Sessions on “Evidence”: Paper Sessions on the Themes of Knowledges, Certainties, Uncertainties, Evaluation, and Medical Data in Practice

HEGEMONY OF EVIDENCE: THE SHAPING OF KNOWLEDGE AND UNCERTAINTY

Wednesday, November 16th / 4:00 PM – 5:45 PM

Chair: Shannon Satterwhite (University of California, San Francisco)

This session will include papers on biopolitics, medical documentation, certainty and diagnosis, maternal health data collection, and nursing and primary care practices.

AMBIGUITIES OF CERTAINTY: NEGOTIATING KNOWLEDGE AND NAVIGATING THE BOUNDARIES OF EVIDENCE

Thursday, November 17th 8:00 AM – 9:45 AM

Chair: Anna Zogas (University of Washington)

Papers in this session will address health rationalities and socialities, the nature of uncertainty and medical evidence, and the boundaries of medical knowledges.

EVIDENCE? ACCIDENT? DISCOVERY? PSYCHOSIS, MORAL SUBJECTIVITY AND CARE 

Thursday, November 17th 10:15 AM – 12:00 PM

Organizer(s): Neely Myers (Southern Methodist University) and Michael D’Arcy (University of California, Berkeley)

Chair: Lauren Cubellis (Washington University, St Louis)

Discussant: Elizabeth Bromley (University of California, Los Angeles)

In this session, the presenters will explore numerous connections between psychological experiences, illnesses, and clinical evidence.

EVIDENCE AND THE ENDS OF AIDS: SCIENCE, DISCOURSE, AND POLITICS AT THE END OF THE TREATMENT SCALE-UP ERA

Thursday, November 17th 4:00 PM – 5:45 PM

Organizer(s): Nora Kenworthy (University of Washington, Bothell) and  Matthew Thomann (Columbia University)

Chair: Richard Parker (Columbia University)

Discussant: Vinh-Kim Nguyen (Graduate Institute of International and Development Studies Geneva, Switzerland)

Papers in this session will explore global AIDS/HIV landscapes, including the reframing of risk, data, and treatments. They will also consider the ties between science and politics in HIV/AIDS research and global health initiatives.

CLINICAL IMPRESSIONS: REGIMES OF INTERPRETATION AND EVALUATION IN HEALTHCARE

Friday, November 18th 10:15 AM – 12:00 PM

Organizer(s): Adam Baim (University of Chicago), Colin Halverson (University of Chicago)

Chair(s): Talia Weiner (University of Chicago), Miao Hua (University of Chicago)

Discussant: Barry Saunders (University of North Carolina, Chapel Hill)

This session will explore how biomedical systems are evaluated, how biomedical practitioners evaluate illness, and how medical evidence and interpretation align in numerous settings.

From the Archive: Patients-as-Syndromes in Internal Medicine

In our “From the Archive” series, we highlight an article from a past issue of the journal. In this installment, we explore Robert A. Hahn’s piece “‘Treat the patient, not the lab’: Internal medicine and the concept of ‘Person,'” available in full here. This article was featured in Volume 6, Issue 3 (September 1982.)


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Throughout the history of the journal, our authors have turned the same anthropological gaze equally onto both biomedicine and other medical systems. As Hahn introduces this article, he states that the healer in all cultural contexts fashions medical and social truths together, such that the patient and patient body are reinterpreted (and potentially reordered) through medical treatment by the healer. Biomedicine, he states, also recasts illness in ways that alter the medical position of the patient. To understand how physicians of biomedicine engage with patients conceptually in this way, Hahn conducted an ethnographic study of four internists. As internal medicine is often characterized as highly rationalistic and thus emblematic of biomedical practice, Hahn argues, he states that understanding the internists’ perspectives may shed light more broadly on biomedicine as a particular method of envisioning illness and its relationship to the patient.

Hahn begins by positing that the nature of internal medicine as a profession itself is a form of interpretation of what constitutes the patient and body over which it has medical purview. Internal medicine does not focus on mental health (psychiatry) or on the internal visceral body (surgery.) Thus, the “body” it treats exists in relative isolation from the mind, yet is not a physical or functional body such as the one manipulated directly through surgery. The conditions internists treat exist apart from the person and, to a degree, from the patient’s body: instead, the internist focuses on internal diseases and pathologies that become entities of treatment divorced from the individual receiving care. These illnesses– forged into concrete ontological “things”– are countered with similarly material antidotes. Hahn adds that the prestigious status of the internist in the culture of clinical practice, both currently and historically, lends this physiologically-based view of the body and its treatment significant legitimacy in the biomedical landscape.

To demonstrate these concepts, Hahn presents the case of internist Dr. Barry Siegler. “Barry,” as he comes to be called, repeatedly instructs his residents and other clinicians to be wary of individual metrics and lab results, as these single numbers and tests cannot be incrementally fixed: rather, he contends, they must be examined and addressed in concert such that the whole patient is successfully treated. Hahn describes this as relational knowledge of pathology, rather than “singly” reading and responding to individual metrics. However, Barry does not mean to champion holistic, person-centered care: instead, he posits that the entire patient should serve as the point of focus such that no aspect of the patient’s pathology is excluded from diagnosis and subsequent treatment. For example, Barry argues that the patient interview is a tool for the extraction of cues that would lead the clinician to better understand the etiology and symptomatology at hand.

Thus the patient’s “syndrome” comes to exist as a materially and ontologically “real” entity that is distinct from the social, personal, and existential contexts of the patient’s life. This perspective is crystallized in Barry’s tendency to refer to patients as their diseases, such as “a conversion reaction.” He also refers to patients he believes to have mental illness in the same manner, such as the “neurotic,” although he admits that psychiatric pathologies are a “Pandora’s box” beyond the limits of his professional power to address. Again, the patient as a person (and even as a subject or individual mind) fades as the disease pathologies that characterize their illness are reified and made the central objects of the internist’s medical gaze. Due to the close alignment between physiology and organic sciences (chemistry and biology), Hahn notes that the internist’s ontological transformation of the patient into their pathologies– and the pathologies into discrete objects of attention– are deemed especially real, true, and justifiable. Likewise, the body itself is interpreted as a closed, contained system that becomes the object of internal medicine: the ‘whole patient’ is instead the ‘whole pathophysiology.’

Hahn concludes that this vision of the body is decidedly Western: it individualizes the body, and makes a Cartesian division between the body (physical) and the mind (psychological, social) such that it is made treatable and conceptually readable by internists who isolate it from other contexts and who distinguish diseases as concrete, material things. The article ultimately suggests that certain biomedical visions of the body and appropriate patterns for treatment may not align with the perspectives of patients, who understand their illness within the social, spiritual, cultural, and other frameworks that structure their daily lives.

 

Books for Review: Vol 40 Issue 3, Sept 2016

In our September 2016 issue, we received these books for review at the journal. The new releases span social science methods, to two ethnographies of biomedicine and human plasticity (available here and here), and finally, two texts on organ transplantation across cultural contexts. This includes Heinemann’s Transplanting Care and Crowley-Matoka’s Domesticating Organ Transplant.

Last year, we featured a book release update on Crowley-Matoka’s work on organ transplantation in Mexico. Here, we revisit the original book release (accessible here.)


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Released this March 2016 from Duke University Press is Megan Crowley-Matoka’s Domesticating Organ Transplant: Familial Sacrifice and National Aspiration in Mexico. The text explores the familial nature of kidney transplantation in Mexico, where the organs are donated between relatives rather than received by strangers. Crowley-Matoka also examines kidney transplant in Mexico beyond the family unit, assessing national pride in transplantation procedures performed at hospitals operated by the state. Through family and government, organ transplantation thus becomes an iconic procedure in Mexican society– both within the home and across the nation– that represents the curative promise of contemporary medicine. Crowley-Matoka’s ethnography highlights the relationships between embodied experience, domestic life, national identity, and clinical practice. This text will appeal widely to scholars who study biomedicine in the Americas, the connections between medicine and the state, and familial networks of caregiving.

About the author: Megan Crowley-Matoka is Assistant Professor of Medical Humanities and Bioethics at Northwestern University. You can access more details about her upcoming book here.

Issue Highlight Vol 40 Issue 3: Contradictory Notions of Violence and Trauma in the Military

This is the second post in a series of article highlights from our new September 2016 issue, available here. In this installment, we explore Tine Molendijk, Eric-Hans Kramer, and Désirée Verweij’s article “Conflicting Notions on Violence and PTSD in the Military: Institutional and Personal Narratives of Combat-Related Illness.” To read the full article, click here.


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Molendijk, Kramer, and Verweij observe that contemporary quantitative research reports that members of the military tend to underuse mental health services, most notably for PTSD. The reports note that soldiers’ beliefs about these services may be hindering utilization: however, existing studies have not specifically identified the beliefs or cultural factors that lead to under-utilization. Through a qualitative analysis of the literature, the authors argue that existing mental health interventions carry contradictory statements about violence and PTSD that may be casting particular social and moral frames onto mental illness. These interventions thus situate PTSD within a pre-figured framework, rather than presenting PTSD and trauma in a manner that individualizes and “decontextualizes” its presentation amongst members of the military: whose personal narratives also offer a distinct perspective on the experience of PTSD. The study focuses on PTSD and its treatment namely amongst the US, UK, and Dutch contexts.

To begin, the authors state that the diagnostic category of PTSD per the DSMV (and its implementation in practice) itself imposes a particular cadence on the disorder, stipulating that it emerges in response to an isolated or otherwise triggering single event, rather than to a diffuse string of violent occurrences or social disruptions. The diagnosis also pathologizes the degree of transition between military and civilian life which, to some degree, must and does occur for all soldiers. “The current mainstream PTSD-concept, with its focus on trauma exposure and individual susceptibilities,” the authors argue, “frames PTSD as the response of an individual to an event,” rather than an individual to a series of events, or many people to a range of traumas.

Beyond the diagnostic category, the “infrastructure” surrounding PTSD and its treatment in the military also impacts the way the illness is conceived and given meaning. The authors “divided the PTSD-infrastructure into five categories: pre-enlistment screening, basic training programs, counseling during deployment and pre- and post-deployment psycho-education, post-deployment screening through a survey and a meeting, and therapy.” In the earliest stages, potential military recruits are screened for existing mental illness, while those who pass screening are then subjected to psychological conditioning in their training intended to bolster soldiers’ emotional and psychological fortitude against combat scenarios. Throughout and after deployment, soldiers are also counseled and receive mental health guidance intended to ease adjustments between the “battlemind” state and the “civilian” mindset. These numerous institutional mechanisms indicate that the military infrastructure situates PTSD as a dysfunctional “deviation” from the ‘functional’ “battlemind,” rather than a natural response to trauma. Thus PTSD is cast as the failure of an individual to integrate and compartmentalize a traumatic event within the mental frameworks for coping that they have already been given, even though the military has already anticipated trauma and attempted to prepare soldiers in the event of psychological disturbance.

From the personal perspective of soldiers, however, the experience of PTSD is presented in a different but equally conflicting light. The authors note that soldiers are expected to psychologically identify and process traumatic events, but are also instructed to resist considering the emotional impact of these events: thereby cognitively preventing them from narrating, contextualizing, and giving meaning to traumatic instances. Furthermore, as violence is a routine aspect of military labor, responses to it are not necessarily “exceptional.” Entire squads may experience the same trauma, although they may not all be later diagnosed with PTSD, or share the belief that mental health care is appropriate for overcoming psychological trauma. Indeed, in military culture, many soldiers may not perceive violence as a trigger, but– as noted earlier– an expected and normal part of daily work. Additionally, acts of military violence may not be perceived as traumatic if they are viewed as necessary, just, or appropriate. Amongst soldiers themselves, PTSD therefore carries conflicting and multiple meanings. The authors summarize that “soldiers have learned that exposure to violence can harm a soldier, and that PTSD-like symptoms are not unusual. However, at the same time, they have learned that violence and stress are inherent to a soldier’s job, and that ‘good soldiers’ should be able to deal with it.” Soldiers who struggle with trauma, therefore, are given resources to address it, but may suspect that it is normal and does not (or should not) require medical intervention. Thus both the institution and the nature of the profession generate conflicting messages about the etiology and treatment of PTSD amongst soldiers.

To some degree, the authors remark, the transition from active deployment (and its related trauma or exposure to violence) to civilian life contains unavoidable contradictions, as the psychological mindset needed for combat versus the mindset for civilian life differ greatly, and the adjustments between them may be difficult. However, the contradictions within the institutional narrative of PTSD– that it is dysfunctional, yet expected, and provided with interventions–may be preventing soldiers from understanding whether or not their response to violence requires treatment, or if seeking help is a stigmatized act. Ultimately, the authors conclude, “the [existing institutional] PTSD-narrative can give soldiers the feeling that important elements of their problems are not taken into account, or that they are translated into an individual problem. If so, soldiers then hear no narrative through which they can understand and articulate their experiences and potential inner struggles about the meaning of these experiences.” The authors’ findings therefore indicate that there are significant and potentially problematic conceptual rifts in the understanding of PTSD between soldiers and institutions, and amongst soldiers acting within the military infrastructure.

 

 

Issue Highlight Vol 40 Issue 3: The Mental Health Treatment Gap Across Africa

In the coming weeks, we will be presenting special highlights of our latest installment of the journal, released September 2016 (accessible here.) This week, we explore Sara Cooper’s article “‘How I Floated on Gentle Webs of Being’: Psychiatrists’ Stories About the Mental Health Treatment Gap in Africa.” The full article is available here.


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As Cooper notes in the outset of her article, clinicians and global health workers have identified a “gap” in available mental health services in Africa, and developed programs targeted at the resolution of lacking mental health services across the continent. Despite widespread attempts to research and resolve this gap, however, there remains concern about the problems that arise when a global, top-down approach to mental health services is applied in African contexts. Responding to this concern, Cooper sought out views on the treatment gap at the local level, specifically amongst African psychiatrists. Cooper gathered and analyzed narratives from twenty-eight psychiatrists from South Africa, Uganda, Nigeria, and Ethiopia. She found that while a biomedical, rationalistic narrative about the gap was certainly present, another, more phenomenological understanding of the “gap” emerged from the narratives of three of her participants, which urged a more sensitive approach to the implementation of mental health services in Africa.

Cooper first found that some of the psychiatrists in her study repeatedly turned to a dominant (or master) biomedical narrative to explain why the mental health treatment gap existed in their respective countries. In other words, the psychiatrists relied on a rationalistic, deductive, and material explanation that accounted for the mental health treatment landscapes across Africa. For instance, many of the psychiatrists argued that the lack of physical resources– hospitals, beds, clinicians to staff treatment centers– led patients to seek out non-biomedical interventions like prayer-based or spiritual-based care. The participants agreed that if there were enough services available, patients would not turn to complementary or religious forms of treatment. In their perspective, alternative forms of care were a substitute for biomedicine, rather than a legitimate venue for patients to seek mental health assistance in the absence of (or even alongside) biomedical resources.

Indeed, the act of seeking out these alternative treatments was viewed by the psychiatrists as a rational response: one borne out of the creativity of patients who weighed available options and selected the most appropriate, present service (rather than a complex response to a pluralism of local medical systems.) Conversely, however, the psychiatrists also argued that patients underutilized health services and lacked “mental health literacy,” or the knowledge needed to preface the choice to seek out biomedical assistance. Through these examples, and others, Cooper observes that this sub-cohort of psychiatrists tended to return to a rationalistic understanding of medical treatment that may not always have been sensitive to other means of medical decision-making or to the scope of biomedical interventions.

Yet Cooper also discovered that there were notable fractures in the biomedical “master narrative,” wherein psychiatrists’ narratives reveal concerns about the role of biomedical mental health services in addressing treatment gaps. Three psychiatrists admitted that biomedicine might not necessarily address the full scope of a patient’s mental illness or health concerns in the broader context of their lives or personal needs. For example, these three participants noted that the psychiatrist might have to explain that available treatments could potentially fail to fully resolve a patient’s complaint, or that they might have to accept that a patient’s past traumas, or troubling social circumstances, were beyond that which the psychiatrist could ameliorate through medical means. Here, the treatment “gap” is conceptual: the ideological place where a patient’s hopes, experiences, and expectations about their care may not be perfectly matched to the psychiatrist’s available treatments and medical diagnoses.

In this sub-cohort, one psychiatrist remarked that the “paternalistic” method of biomedical treatment could be unproductive, as the clinician may not be able to fully mend the patient’s health due to the social, personal, and individual complexities of the patient case. Another psychiatrist recounted a patient’s case in detail, noting that while he believed this person suffered from delusions, it was his responsibility to help the patient by trying to understand his view of reality, suffering, and personal struggle. Yet another psychiatrist recounted equally challenging cases, where they recognized that patients often were not satisfied with simply a cleanly-defined diagnosis or treatment plan, but required a more robust means of reordering and improving their lives with the psychiatrist’s guidance.

Cooper states that “for these psychiatrists, in taking people’s experiences and meanings seriously, on their own terms, one comes to appreciate that their understandings and behaviours are deeply complex and varied, affected by all sorts of social, cultural and emotional realities and rationalities.” Though the master narrative of biomedical rationality remained prominent, these alternative narratives were sensitive to the lived experiences and individual realities of the patient. They also explored the treatment gap, but viewed the “gap” as the product of complex interactions between psychiatrists and their patients. For the latter three participants, the “gap” was caused not by a lack of resources or knowledge, but by the friction between practitioners’ and patients’ expectations about the treatment of mental illness, and a mismatch between practitioners’ medical skills and the self-professed needs and understandings of patients. “According to the three psychiatrists in this [part of the] study,” Cooper concludes, “increasing the availability of services necessitates first and foremost rethinking the nature of the kinds of services that are expanded, and the associated epistemologies upon which these are based.”

Blog Archive: ALS, Quality of Life, and Feeding Tubes

This week, we revisit an article highlight that originally debuted here in May 2016. The highlight explores Pols and Limburg’s qualitative research on the role and meaning of feeding tubes in the lives of people with ALS. The article was officially released in our latest September 2016 issue of the journal, and is accessible in full here.


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Pol and Limburg begin by suggesting that while “quality of life” has been transformed into a measurement used widely in health research, it is difficult to operationalize when considering the daily, lived experiences of patients. Rather than approaching quality of life as a measure of attainment or “outcome,” the authors instead choose to reframe it as a continual process: one that is negotiated by individual patients differently. To examine what quality of life entails in a qualitative sense, the authors interviewed a population of people with ALS in the Netherlands with feeding tubes, or ALS patients considering one.

The literature on feeding tubes, the authors note, present many perspectives on the relationships between quality of life and eating. Some sources argue that feeding tubes deprive individuals of the important social aspects of eating, while others note that feeding tubes can unburden patients for whom swallowing and the physical actions of eating are difficult, uncomfortable, or impossible.

Patients and their families interviewed by the researchers, on the other hand, demonstrate such ambiguity towards feeding tubes contextually, depending on the stage of their feeding tube transition. For many, the initial decision to have a feeding tube placed in their bodies was an upsetting signal of bodily deterioration. The procedure itself, though technically minimally invasive, was also viewed with trepidation by patients. They worried about the hospital stay, and whether or not their body would be strong enough to adapt to the tube quickly. Pols and Limburg found that for those who had undergone the procedure, “there was a remarkable consensus among patients in their evaluation of tube placement, with the main variations mentioning just how terrible it had been.” The authors later note that some patients continued to view the feeding tube negatively after it was placed, envisioning it as an unnatural, upsetting addition to their bodies. Others described it as a “necessity” that came with quality of life benefits, although it was not pleasant to have attached to their bodies.

However, for many patients who had feeding tubes already implanted at the time of the study, the response could be notably positive. These participants noted that the devices restored their health and function, and lessened distressing symptoms like choking and an inability to swallow. For one patient, the feeding tube ensured that she received the appropriate calories, such that any food she decided to eat normally could be at her discretion. Other patients who cared less about eating a range of foods appreciated that the feeding tube rid them of the need to worry about what could be easily consumed.

The authors conclude that “the feeding tube can best be understood not as an intervention that causes ‘impacts on quality of life’, but as a technology or prosthesis that may bring different qualities and appreciations that may shift over time.” They add that the feeding tube acts as an intervention that re-orders daily life for patients coping with the a ‘new normal’ of chronic illness: rather than serving to balance “good” and “bad” qualities, as outlined in the disability paradox. Lastly, they remind readers that instrumentalizing “quality of life” risks losing these facets of illness experience. This term is deeply contextual, and responsive to the needs, expectations, and hopes of each patient undergoing treatments or coping with chronic conditions.