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SfAA 2017 Conference Feature Part 2: “Experiences and Identity in Long-term and Chronic Illnesses”

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This week on the blog we are continuing our feature of a paper session from the 2017 Society for Applied Anthropology (SfAA) Annual Meeting which took place in Santa Fe, New Mexico from March 28th through April 1st. This session was entitled “Experiences and Identity in Long-term and Chronic Illnesses” and featured Beth Moretzsky, Karen Dyer, Marlaine Gray, and Ellen Rubinstein (full program from the SfAA meeting available here). Here, we present a summary of Karen Dyer and Marlaine Gray’s presentations. Part one of this feature is available here.

Karen Dyer (VCU) – Examining Health and Illness after Treatment for Colorectal Cancer: Long-term Healthcare Needs and Quality of Life

From her research, Dyer discusses the attachments formed between people with a history of colorectal cancer and their oncology team, which stems from both a fear of recurrence of illness and an especially strong emotional bond forged through mutual experiencing of a life-threatening disease. Dyer also discusses the consequences of the ambiguity of cancer follow-up care. Questions frequently include, who is the best doctor to see? If multiple care providers are seen by people with a history of colorectal cancer, will tests will be duplicated or even missed? Which emerging symptoms are serious enough to warrant further investigation? This continuing surveillance of a “survivor’s” body encompasses many medical repercussions from the treatment of cancer and reality of recurrence risk, often transforming people into life-long patients.

Dyer interviewed 30 participants in Virginia who had a history of colorectal cancer and were at least five years post-treatment. As this category of people with a history of colorectal cancer increases, there is a growing number of individuals using, and in need of, follow-up care. Yet this need is contrasted against a shortage of oncologists and primary care providers who are able to treat this group of people. Dyer asks, how do we treat and provide adequate long-term care to people for years, possibly for the rest of their lives, in a way that is not going to compromise or strain the oncology clinics? What are the physical, social, and emotional needs of longer-term colorectal cancer “survivors,” and how does their cancer experience impact these needs?

Dyer explains that most participants with a history of colorectal cancer did see an oncology team regularly for a follow-up care. For this group, as with other groups with specific types of cancer histories, the five-year mark is a critical period where individuals get discharged from monitoring and care because the risk of recurrence is statistically very low. Yet from Dyer’s research, a large number of her participants were planning to continue to see their oncology team after they had passed the five-year mark. Most had no formal “survivorship” care plan, and in general, there was not an understanding of what future care would entail.

Many individuals with a history of colorectal cancer continue to see their oncology team because of the intense bond and emotional connection they have developed. Going through a serious life-threatening experience created an attachment and deep sense of friendship. Dyer discusses that the oncology team fills a role of social friendship and support during the cancer experience when many other relationships may change. For Dyer’s participants, the oncology team has seen them in their “worst moments” and guided them through this demanding treatment. This type of connection and support is difficult to abandon. One woman said, “I need my security blanket, and yeah, I guess that’s what Dr. L [her oncologist] is.” This sense of being cared for and understood will be greatly missed. Any kind of care planning needs to take that strength of bond and trust into account.

Ambiguity surrounding cancer follow-up care is also an important dimension of Dyer’s work. Many participants report difficulty several years post-treatment when symptoms or health problems manifest in uncertain ways. Participants report difficulties distinguishing between normal aging processes, potential non-cancer related problems such as diabetes, or potential cancer-related, or cancer treatment-related, effects. Dyer uses fatigue as an example. Many participants spoke about being considerably more fatigued than they usually were. While this fatigue could be part of a normal aging process, it could also signal a variety of diseases or indicate the arrival of a cancer recurrence. Ambiguous symptoms such as fatigue lead to a high stakes, complex decision-making process.

People experiencing these types of indistinct symptoms often express an uncertainty about who they should contact with questions and when. Participants frequently did not want to “bother” their oncologist or be perceived as overreacting. Self-diagnosis and self-assessments of the level of seriousness of these symptoms were often the responses.

Marlaine Gray (GHC) – Shouldn’t We Be Listening?: Using Twitter for Recruitment, Patient Engagement, and Data Collection in a Study about How Young Adults with End Stage Cancer Make Medical Decisions

Gray begins by discussing research methodological complications when researching young people with metastatic cancer who are geographically spread all across the United States. It can be difficult to find and access this understudied population. Gray also discusses the sensitive nature of the topic is often compounded by time constraints; asking a patient for an hour of their time as part of an interview is difficult when that individual may not have a lot of time left.

Using an already active Twitter community, Gray investigated how young adults with metastatic cancer made medical decisions and whether or not their care matched their ultimate goals. The research was called The Clare Project, named after and featuring a personal story of metastatic cancer. The intention was to understand what these patients wanted for their remaining life and quality of life and translate those goals back into the medical discourse in order to match up treatments. Most participants wanted more quality time with their family, yet they were often being advised to get surgeries. Gray explains this disjunction can be problematic since metastatic cancer patients may never return home from the hospital after these types of surgeries, or they be unable to recover completely and be unable to fully engage with their families again.

Twitter became a way to contact people who were already publically speaking about their cancer experiences. The population of young people online is very active in seeking treatment, finding other patients to connect with, and finding out what the treatments are like. While there are also blogs, threads like Reddit, Facebook groups and pages, and other online message boards, Twitter emerged as the most successful way of communicating with this population. People are online constantly to discuss their cancer experiences.

The metastatic cancer Twitter community uses hashtags such as #mayacc (metastatic adolescent and young adult cancer community), #hpm (hospice and palliative medicine), or #metsmonday, where people with metastatic cancer post about their experiences on Monday. After launching their call for recruitment on Twitter, the Clare Project (Twitter page available here) achieved 200% of their recruitment goal within 24 hours. By using established hashtags and following prominent community members, Gray was able to reach an extensive participant audience.

Adolescent and young adult cancer patients are already actively using social media, many joining Twitter after their diagnosis. Twitter becomes a means of social connection. Gray articulates people are using Twitter to discuss decisions they have to make surrounding their metastatic cancer treatments. Even though patients talk with their doctors and family members, they are using the Twitter support groups to find out what the treatment experiences are. It is these treatment narratives from fellow metastatic cancer sufferers which holds more decision-making weight. Some of these decisions are very high stakes and are based on their peer, rather than medical, advice.

Accessing the first-hand expertise of other patients is labeled as a different kind of expertise than they can get from the medical community. Additionally, for side effects, participants express that doctors can tell them what the treatment is, but their fellow patients will express what the treatment is like and how to manage it. This social support is crucial when participants often do not know anyone else with these types of cancer.

Gray also discusses a kind of “legacy activism,” where people would know they were terminal with few options in their own treatment, but they wanted to advocate for more research funding and attention to metastatic cancer. Social media became a way to engage in social activism. Even though people could not physically go to advocacy events, they could virtually participate from their bedrooms and still spread their message. Through Twitter, people can participate in research and campaigning who would otherwise be unable to do so.

Message from the Society for Psychological Anthropology 2017 Biennial Meeting

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spa-logoThe Culture, Medicine & Psychiatry editorial team sends our greetings this week from the Society for Psychological Anthropology 2017 Biennial Meeting in New Orleans, Louisiana. This year’s meeting will be held March 9-12th, 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.

Highlights from this conference will be featured on the blog next week.

Consider submitting an abbreviated version of your SPA 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 Sonya Petrakovitz at smp152@case.edu for details.

Best wishes,

The CMP Editorial Team

In the News: Health Disparities and Water Quality in the 2016 Rio Summer Olympics

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August 2016 – The 2016 Summer Olympic games in Rio de Janeiro, Brazil has dominated news headlines in recent weeks. The athletics event, taking place from August 5 to August 21, featured 207 countries in the Parade of Nations as well as the first ever Refugee Olympic Team. It is the first time the games have been held in South America. But besides highlights on the events and spotlights on athletes’ training regimens and backgrounds, there is another stream of news stories surrounding the Olympic Games. These stories have focused on two key public health issues related to this year’s Games: health disparities and water quality issues.

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Rio’s Olympic beach volleyball venue is on Copacabana Beach. Photo from Marcio Jose Sanchez for AP.

Only two years ago the FIFA World Cup was making similar headlines in Brazil. As reported in 2014, and highlighted in this blog[1], there have been past concerns about access to quality healthcare despite the surge of funds for the World Cup event. These reports unmasked a problematic system of health disparities to a global audience. The Daily Californian[2] stated that many Brazilians were “unhappy that their government [was] funding stadium renovations instead of spending on more instrumental matters like improved health care and emergency services.” Reports relating to the current Olympics have painted a similar picture for the present health scene. As Reuters[3] reported in December 2015, the governor of Rio de Janeiro declared a state of emergency “as hospitals, emergency rooms and health clinics cut services or closed units throughout the state as money ran out for equipment, supplies and salaries.” According to CNN[4], the financial crisis has been causing difficulties in the “provision of essential public services and can even cause a total breakdown in public security, health, education, mobility and environmental management.”. While the state of emergency declaration provides a critical 45 million reais ($25.3 million) in federal aid and may facilitate the transfer of future funds, estimates state that Rio de Janeiro owes approximately $355 million to employees and suppliers in the healthcare sector alone, and the state needs over $100 million to reopen the closed hospital units and clinics.[5] While the city of Rio spent approximately $7.1 billion on improving toll roads, ports and other infrastructure projects, the Brazil Ministry of Health devoted only $5.7 million to address health concerns[6].

rio-favelas--joao-velozo-9_custom-84b1822885fc72f97f7e9084730eb4397aa48b6e-s1300-c85

The Christ the Redeemer statue is visible above the Santa Marta favela in Rio de Janeiro. Photo from Joao Velozo for NPR. 

In addition to these issues (and the high-profile Zika virus, which is causing health concerns in multiple countries[7]), concerns surrounding water quality and cleanliness in Brazil has garnered considerable attention. A recent scene involving the diving and water polo pools turning a swamp-green color because of an algae bloom left some athletes complaining of itchy eyes.[8] While the Olympic Games have brought international attention to the impact of water quality on the athletes and visitors, the residents of Rio have been dealing with theses concerns on a daily basis for much longer. With almost 13 million people living in and around Rio, the current sewage system is struggling to cope. One news report[9] notes that “about 50 percent of what Brazilians flush down the toilet ends up in the country’s waterways. Diseases related to contaminated water are the second leading cause of death for children under five in Brazil.” Tests performed in a variety of areas, including the sailing venue of Guanabara Bay, over the course of a year found high levels of “superbugs of the sort found in hospitals on the shores of the bay.” The possibility of hospital sewage entering the municipal sewage system remains a concern.[10]

An economic recession, compounded by water concerns, political unrest, and a presently faltering healthcare system all leave many Cariocas— citizens of Rio– who rely on the public health system in a challenging and hazardous situation across the social, medical, and political spheres. With hopes of local profits from the Olympic Games ranging in the billions of dollars, much is at stake for both residents and investors.[11] Despite the risks and tribulations, many residents welcome the international event and attention, and credit the Olympics for cultivating “several underutilized, often abandoned spaces have been transformed to ones that appeal and cater to local residents”. Many “beautification” projects leave residents hoping the installation of new art and the newly constructed spaces will leave a lasting impression on its residents and visitors long after the games end.[12]  Despite this optimism, the citizens of Rio are not impacted equally by the Games.[13] The improved infrastructures will likely benefit those who already have access to services. Tourism, and tourism cash, has been weak in the favelas, or shantytowns, which house at least 25% of the population in Rio. The infrastructure inequities have even bypassed some neighborhoods entirely, leaving those residents out of the celebrations.[14]

Overall, these Olympic Games promise once again to bring the world’s cultures together in competition and camaraderie, yet they do not do so without controversy. This global spectacle illuminates athletics and sportsmanship, as well as the intersections between cultural events, politics and nationalism, power and profit, and community health. These larger issues lead to questions about what will happen to the residents of Rio after the Games have drawn to a close.

 

[1] https://culturemedicinepsychiatry.com/2014/07/11/news-the-2014-world-cup-and-healthcare-in-brazil/

[2] http://www.dailycal.org/2014/07/08/uc-berkeley-faculty-graduate-students-look-world-cup-different-light/

[3] http://www.reuters.com/article/us-brazil-health-emergency-idUSKBN0U716Q20151224

[4] http://www.cnn.com/2016/06/18/americas/brazil-rio-state-emergency-funding-olympics/

[5]http://www.reuters.com/article/us-brazil-health-emergency-idUSKBN0U716Q20151224

[6] http://wuwm.com/post/let-s-do-numbers-money-spent-rio-olympics#stream/0

[7] http://www.nytimes.com/2016/01/29/world/americas/brazil-zika-rio-olympics.html?_r=0

[8] http://uk.reuters.com/article/uk-olympics-rio-diving-pool-idUKKCN10O0UW?feedType=RSS&feedName=sportsNews

[9] http://wuwm.com/post/rios-water-problems-go-far-beyond-olympics#stream/0

[10] http://edition.cnn.com/2016/08/02/sport/rio-2016-olympic-games-water-quality-sailing-rowing/index.html

[11] http://www.newsweek.com/rio-2016-who-stands-benefit-successful-olympics-453094

[12] http://www.kvia.com/news/rio-olympics-bring-beautification-projects/40884340

[13] http://www.npr.org/sections/thetorch/2016/08/11/487769536/in-rios-favelas-hoped-for-benefits-from-olympics-have-yet-to-materialize

[14] http://www.reuters.com/video/2016/08/14/olympic-infrastructure-causes-suffering?videoId=369565427

Book Release: Tomes’ “Remaking the American Patient”

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9781469622781

Images via UNC Press website

Released in January 2016 from the University of North Carolina Press is Nancy Tomes’ Remaking the American Patient: How Madison Avenue and Modern Medicine Turned Patients into Consumers. Through historical and cultural analysis, Tomes illuminates the threads between public relations and marketing in medicine, asking throughout: how have patients in the United States come to view health care as a commodity to be “shopped” for? What connections are shared between the history of medicine and the growth of consumer culture? Likewise, Tomes investigates what it means to be a “good patient” in this system of marketed care, and how “shopping” for care can both empower and disorient patients in the contemporary age. She also reviews the resistance, and ultimate yielding, of the medical profession to this model of care seeking. The book was recently reviewed in the New York Times (read the article here.)

The book will prove insightful for both historians of medicine and medical anthropologists who study the political-economic landscape of biomedicine and patienthood in the United States. It will also speak to conversations in bioethics about patient autonomy, choice, and medical decision-making.

About the Author

Nancy Tomes serves as professor of history at Stony Brook University. She is also the author of The Gospel of Germs: Men, Women, and the Microbe in American Life, published by Harvard University Press (details here.)

Have you published a recent book in medical anthropology, history of medicine, social medicine, or medical humanities? Email our blog editor (Julia Knopes) at jcb193@case.edu with a link to the book’s page at the academic publisher’s website, and we will feature it here.

Guest Blog: The Autism Spectrum, Anorexia, and Gender

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This week on the blog, we are hosting a guest post by Carolyn Smith, MA, a third-year PhD student in medical anthropology at Case Western Reserve University. Carolyn studies the intersections of mental health, eating, and the body, blending biological and cultural approaches. This blog post complements our July 2015 issue on autism, which you can read more about in the links provided at the end of the guest post.

In Autism spectrum disorders: Toward a gendered embodiment model, Cheslack-Postava and Jordan-Young[1] argue the importance of gender theory in understanding the preponderance of male cases with autism spectrum disorders (ASD) in the United States. In addition to evidence of autism as sex-linked, the authors argue that there is evidence as well for biases in diagnosing autism, and that social environment likely plays a role in male susceptibility. The literature on anorexia nervosa offers a parallel argument: anorexia nervosa, like autism, is often described in terms of biological risk factors[2] yet it remains a socially charged, deeply gendered diagnosis. In the USA and other societies with thin female beauty ideals, for instance, anorexia nervosa is most widely attributed to women.[3]

Both anorexia nervosa and ASD are recognized by the American Psychological Association (APA) and have specific criteria. While these categorizations are justifiably scrutinized by medical anthropologists, here I use the APA criteria as a cultural document that reflect what conditions that biomedical practitioners in the United States are cataloguing when they demarcate mental conditions. Anorexia nervosa is an eating disorder characterized as one of the most fatal mental illnesses in the United States.[4] Diagnostic criteria in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-V) includes restrictive eating and an intense fear of gaining weight/persistent behaviors to prevent weight gain. [5] One key criterion for anorexia is being of low body weight with the absence of any other pathology. The inclusion criteria have changed over the years, as have social ideas about the disorder and who suffers from it. Meanwhile, autism is classified as a neurodevelopmental disorder with social deficits and rigid behaviors.[6] The understandings of autism, like anorexia nervosa, have also changed over time in the United States.

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Yet gendered categories for these conditions persist. In the realm of psychiatric health, autism is assumed to be a male disorder, and anorexia nervosa, a woman’s diagnosis. This simple categorization overlooks the extent to which anorexia and autism are demonstrably comorbid in studies carried out in the USA and the UK.[7] [8] [9] One study from the UK, in fact, found that anorexics, restrictive-type were five times more likely than the general population to score as high on the Autism Questionnaire as someone with an ASD. 9 This finding offers no simple cause-and-effect explanation for how the two disorders are linked. However, this new data suggests that the body, the mind, gender roles, and dieting behaviors may be entwined in ways that resonate with cultural beliefs and categories.

There are competing theories about the etiologies of anorexia as well as autism, each with gendered overtones that do not reflect the findings of associations between the two psychiatric conditions. One theory of autism is that it is linked to a “hypermasculinized” brain.[10] Meanwhile, in a 2012 article for Psychology Today, Maestripieri argues that anorexia may be due to a “hyperfeminine” brain. The two conditions, it seems, appear to be “oppositional.”[11] However, these theories do not capture the wide diversity of cultural perspectives within the USA or UK, meaning there may be unique gendered understandings of psychiatric disorders between social groups that are not accounted for in existing research. In either case, what is clear is that cultural categories of psychiatric conditions in the US and UK may be missing how patients (of any gender, from numerous cultural backgrounds) live and seek care with either condition.

These gendered categories become even more complex for individuals diagnosed as both autistic and anorexic. The comorbidity of ASD and anorexia is complicated by the fact that restrictive dieting in anorexia may lead to cognitive impairment, which subsequently causes behaviors that might be confused with cognitive patterns on the autism spectrum. However, people with anorexia do report having autistic traits prior to the onset of their eating disorder, and people recovering from anorexia appear more often than non-anorexics to fall along the autism spectrum. 6,7 Thus, the two illnesses co-produce one another in ways that cross traditional gender lines (autism as male, anorexia as female) while also making it difficult, if not impossible, to isolate each condition from the other. Here medical anthropologists can offer valuable perspectives from the view of patients, who may describe their eating patterns and body image in terms that span and challenge existing diagnostic divisions.

Though there may be no empirical means to measure the extent to which ASD and anorexia overlap, existing theories about socialization may shed some light on how these two illnesses co-occur. There are numerous common traits between anorexia nervosa and ASD, including perfectionism, social withdrawal, and obsessive thinking.6 Girls and women with anorexia appear to have other similar traits to boys and men with autism: systematizing, a fascination with details, and resistance to change. Anorexic individuals with these autistic traits, Baron-Cohen hypothesizes, could become fixated on the systemic relationships behind body weight, shape, and food intake.[12]Of course, this would depend on whether or not the person with autism was brought up in a cultural environment where food intake and body shape are viewed as something that can and should be regulated at all. Here is where socialization may play a crucial role in the development of anorexia nervosa out of behavioral patterns attributed most often to autism.

The comorbidity of ASD and anorexia nervosa presents an anthropologically complex case where discrete classifications of mental illness may not reflect the connectedness of the two conditions. Likewise, the gendering of each illness as dualistic male-autistic and female-anorexic overlooks the extent to which the conditions share behaviors, tendencies, and thought patterns. Though national clinical studies in the USA and the UK suggest a connection between autism and anorexia, cultural readings of gender, eating, and self-regulation amongst patients with comorbid cases might better illuminate how these conditions manifest on the local scale, and between cultural groups.

Additional Reading

Publications:

Jaffa, T., Davies, S., Auyeung, B., Allison, C., & Wheelwright, S. (2013). Do girls with anorexia nervosa have elevated autistic traits. Mol Autism, 4(1), 24.

Nilsson, E. W., Gillberg, C., Gillberg, I. C., & Raastam, M. (1999). Ten-year follow-up of adolescent-onset anorexia nervosa: personality disorders. Journal of the American Academy of Child & Adolescent Psychiatry, 38(11), 1389-1395.

Oldershaw, A., Treasure, J., Hambrook, D., Tchanturia, K., & Schmidt, U. (2011). Is anorexia nervosa a version of autism spectrum disorders?. European Eating Disorders Review, 19(6), 462-474.

Websites: 

ASD and Autism

https://www.psychologytoday.com/blog/games-primates-play/201208/the-extreme-female-brain

http://www.medicalnewstoday.com/articles/264666.php

https://books.google.com/books?hl=en&lr=&id=iPGFAgAAQBAJ&oi=fnd&pg=PR10&dq=malson+the+thin+woman&ots=sQPGnzOFN1&sig=ZSv8OMyuNAFQ3UgBOWZTEX5lHAg#v=onepage&q=malson%20the%20thin%20woman&f=false

CMP Special Issue Features: July 2015 Issue on Autism

https://culturemedicinepsychiatry.com/2015/07/08/special-issue-highlight-the-anthropology-of-autism-part-1/

https://culturemedicinepsychiatry.com/2015/07/22/special-issue-highlight-the-anthropology-of-autism-part-2/

https://culturemedicinepsychiatry.com/2015/08/05/autism-in-brazil-and-italy-two-cases-from-the-june-2015-special-issue/

References Cited

[1] Cheslack-Postava, K., & Jordan-Young, R. M. (2012). Autism spectrum disorders: toward a gendered embodiment model. Social science & medicine, 74(11), 1667-1674. “Our argument is fully biosocial, and our main points in advancing it are to articulate a model for autism, specifically for explaining the male-female disparities in prevalence, that does not exclude social environmental variables, and is therefore more biologically satisfying; and to demonstrate concrete mechanisms whereby autism may become more prevalent in males as a result of social structures and processes related to gender (p. 1673).”

[2] Bulik, C. M., Slof-Op’t Landt, M. C., van Furth, E. F., & Sullivan, P. F. (2007). The genetics of anorexia nervosa. Annu. Rev. Nutr., 27, 263-275.

[3] Malson, H. (2003). The thin woman: Feminism, post-structuralism and the social psychology of anorexia nervosa. Routledge.

[4] Arcelus J, Mitchell AJ, Wales J, Nielsen S. Mortality Rates in Patients With Anorexia Nervosa and Other Eating Disorders: A Meta-analysis of 36 Studies. Arch Gen Psychiatry. 2011;68(7):724-731.

[5] IBD

[5] IBD

[6] American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders: DSM-5 (5th ed.).

[7] Zucker, N. L., Losh, M., Bulik, C. M., LaBar, K. S., Piven, J., & Pelphrey, K. A. (2007). Anorexia nervosa and autism spectrum disorders: guided investigation of social cognitive endophenotypes. Psychological bulletin, 133(6), 976.

[8] Nilsson, E. W., Gillberg, C., Gillberg, I. C., & Raastam, M. (1999). Ten-year follow-up of adolescent-onset anorexia nervosa: personality disorders. Journal of the American Academy of Child & Adolescent Psychiatry, 38(11), 1389-1395.

[9] Baron-Cohen., Jaffa, T., Davies, S., Auyeung, B., Allison, C., & Wheelwright, S. (2013). Do girls with anorexia nervosa have elevated autistic traits. Mol Autism, 4(1), 24.

[10] Baron-Cohen, S. (2002). The extreme male brain theory of autism. Trends in cognitive sciences, 6(6), 248-254.

[11] Maestripieri, D. (2012 August 23). The Extreme Female Brain: Where eating disorders really come from. Psychology Today. Retrieved from https://www.psychologytoday.com “Therefore, just like Autism Spectrum Disorders may be the product of the combination of the extremely high systemizing and low empathizing tendencies that characterize the extreme male brain, eating disorders may be a manifestation of high negative evaluation anxiety that originates from the combination of the extremely high empathizing and low systemizing characteristics of the extreme female brain.”

[12] (2013 August 10). Anorexia and autism – are they related? Medical News Today. Retrieved from http://www.medicalnewstoday.com

Book Release: Carlo Caduff’s “The Pandemic Perhaps”

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Image via UC Press site

Image via UC Press site

Released this August 2015 from University of California Press is Carlo Caduff’s The Pandemic Perhaps: Dramatic Events in a Public Culture of Danger. In the text, Caduff focuses on alerts in 2005 posted by American experts about a deadly, approaching influenza outbreak. These urgent messages warned that the outbreak would have crippling effects on the economy and potentially end the lives of millions of people. Even though this potentially-catastrophic outbreak ultimately never occurred, preparedness efforts for the slated pandemic carried on.

The text is the product of anthropological fieldwork carried out amongst public health agents, scientists, and other key players in New York City surrounding the influenza scare. Caduff demonstrates how these figures framed the potential outbreak, and how they sought to capture the public’s attention regarding the disease. The book grapples with questions about information, perceived danger, and the meaning of safety in the face of large-scale epidemics. Likewise, Caduff examines how institutions and individuals come to cope with the uncertainty of new outbreaks.

The book will be of interest to cultural medical anthropologists as well as epidemiologists and scholars in public health. Caduff’s work will no doubt shed a timely new light on the way that the threat of epidemics shapes health policy and public perceptions of disease and security.

Caduff is Lecturer in the Department of Social Science, Health, and Medicine at King’s College London. His research addresses the anthropology of science, technology, and medicine, as well as issues surrounding knowledge, expertise, safety, and disease.

For more information on the book, visit the publisher’s website here: http://www.ucpress.edu/book.php?isbn=9780520284098

Book Release: Wailoo’s “Pain: A Political History”

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Image via JHU Press

Image via JHU Press

This October 2015, Johns Hopkins University Press is slated to release Keith Wailoo’s Pain: A Political History. Wailoo’s book examines how the definition of chronic pain in the United States developed and changed alongside broader political and economic changes. The book begins with the culture of treatment following World War II, when public and political attitudes towards pain considered physical suffering real and potentially disabling. With decreasing support of disability programs throughout the 1980s, however, the validity and legitimacy of chronic pain came under question.

New conversations beginning in the 1990s about euthanasia reinvigorated the conversation surrounding pain, no doubt bolstered today by current discussions of medical marijuana laws and the burgeoning use of prescription painkillers for recreation purposes. This renewed interest in the nature and the extent of pain have enlivened the debate around who experiences pain, how we certify pain, and at what point pain requires medical intervention.

The book strives to illuminate the historical foundations of today’s contemporary pain medication and treatment market, particularly in terms of the liberal and conservative political trends between the 1950s and today. Wailoo’s account culminates with an exploration of the contemporary state of pain care: a severe imbalance between the overmedicated and the underserved who cannot access treatment for their chronic pain. Pain: A Political History will certainly prove insightful for historians of medicine as well as political-economic medical anthropologists, theorists of neoliberalism, and medical anthropologists carrying out research in the United States.

Wailoo is Professor of History and Public Affairs as well as the Vice Dean of the Woodrow Wilson School of Public and International Affairs at Princeton University.

To learn more about the book, click on JHU Press’ page here: https://jhupbooks.press.jhu.edu/content/pain

Book Release: Buchbinder’s “All in Your Head: Making Sense of Pediatric Pain”

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This May 2015, Mara Buchbinder’s book All in Your Head: Making Sense of Pediatric Pain will be released by the University of California Press. The book grapples with the difficulty of expressing internal states to others via language, as these inner subjective experiences are often considered impossible to actualize in words. Buchbinder strives to honor this private experience of pain while studying how language surrounding pain and pain management is relational in nature. She explores how pain is described, managed, and treated in medical settings.

Image via UC Press

Image via UC Press

The text is a product of ethnographic research in numerous pediatric units in California hospitals. Buchbinder considers the social lives of physicians, caregivers, clinicians, parents, and children, all with a stake in alleviating pain and interpreting troubling or perplexing symptoms. Rather than allowing pain to be read solely as an isolating, private matter, the author argues that the treatment of pain is a complex social phenomenon. By focusing on narratives, conversations, and metaphors used by participants to illustrate the nature of pain, Buchbinder’s account underscores the power of language to generate shared meanings for human suffering.

All in Your Head will prove of interest to linguistic and medical anthropologists alike, as well as to scholars in the medical humanities with an interest in textual and communicative analysis in clinical settings. To learn more about this upcoming book, visit the publication page at the University of California Press here: http://www.ucpress.edu/book.php?isbn=9780520285224

ABOUT THE AUTHOR

Mara Buchbinder is Assistant Professor of Social Medicine at UNC-Chapel Hill, where she also teaches coursework in anthropology. She has previously coauthored the book Saving Babies? The Consequences of Newborn Genetic Screening.

Guest Blog: Reflections on Antibiotic Use in American Hospitals

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This week, we are featuring a special guest blog written by Katharina Rynkiewich from Washington University in St. Louis. Today, she tells us about her experiences researching antibiotic use among infectious disease practitioners in Chicago, Illinois. If you would like to submit a guest blog entry on your research, please send a 500-700 word piece to social media editor Julia Balacko at jcb193@case.edu.

In the spring of 2013, I conducted research on hospital-based infectious disease specialists in Chicago. Although my participants had a lot to say about antibiotic resistance, I was most surprised at how they characterized and criticized fellow clinicians’ use of antibiotics in relation to resistant disease strains. In hospitals, they suggested, the regulation of antibiotics has changed drastically in the past half century. Some of the older infectious disease specialists I interviewed remembered a time when antibiotic overuse was rampant within the hospital setting. “Anyone could prescribe antibiotics,” my participants complained when describing that era. Clinicians and hospital officials at that time had little reason to expect that antibiotic resistance would become the expensive, lethal, and complicated problem that it is today.

In health care settings now, there is more regulation concerning the use of antibiotics. Clinicians are experiencing a lull in the production of antibiotics for infectious diseases, and practitioners must make do with the limited antibiotic supplies they have. Today, there are systematic hospital reviews of antibiotic use to monitor how often the drugs are used. However, most practitioners can still prescribe antibiotics with little oversight. Procedurally, the review of antibiotics in the hospital setting is an enormous task, and an adjustment of patient treatment plans may not occur until after the first few doses of an antibiotic have been given. There is room, therefore, for antibiotic-resistant diseases to generate as misuse and overuse of antibiotics still occurs.

One way to mitigate overuse employed was the notion of antibiotic stewardship: an idea that the infectious disease specialists I interviewed frequently emphasized. “Stewardship” here refers to the responsibility of certain clinicians to manage antibiotic prescription and usage. The infectious disease specialists expressed a desire to have more control over the distribution of antibiotics in hospital settings, leaving surgery to the surgeon and cancer to the oncologist. The infectious disease staff wished for this level of control over antibiotic use despite the fact that both surgeons and oncologists can prescribe antibiotics independently, meaning antibiotics are not managed by one clinical care specialty. When asked whether, in general, practitioners today realize the importance of antibiotic stewardship in light of the dangers of antibiotic resistant infections, one infectious disease practitioner joked, “Which doctors?” My data show that  many infectious disease specialists note that their management of antibiotic resistance is quite a challenge because most other physicians within and outside of hospitals may readily prescribe them.

This issue is especially pressing because illnesses themselves are rarely treated with one biomedical intervention, or by one clinician. Few patients can be treated for one disease with one corresponding treatment, meaning that patients’ cases are managed with a variety of therapies and by a number of doctors. Patients can also have multiple conditions, again meaning that multiple types of practitioners can prescribe antibiotics for these patients at different points in their hospital stay. In these complex networks of caregiving, who gets the power to give antibiotics might not always be clear, or there might be tension when deciding who gets to limit the drug’s use. Indeed, when an infectious disease specialist is added to a patient’s chart, they are often added as a consult, meaning their advice may not be adhered to by the primary physician.

Certainly, we can expect that infectious disease specialists want professional autonomy over the management of antibiotic drugs, which means limiting and surveying the drug’s accessibility to other clinicians. But to do so, this would mean that other practitioners would have to agree to the control of part of their treatment plans by an outside party. This relationship of competing interests and access to antibiotics leads to disagreements and struggles of bureaucratic power in the hospital. As it stands, the future of antibiotic resistance rests in the hands of all practitioners who must negotiate who gets to prescribe, and who gets to control, the use of antibiotics.

About the Author: Katharina Rynkiewich

I am a PhD student in Anthropology at Washington University in St. Louis. My current research involves studies of infectious disease practitioners and treatment of infectious disease in hospital settings, and will focus on hospital policy regarding infection and epistemic differences among specialty groups of physicians. In 2013, I completed a masters program (MAPSS) at the University of Chicago, and research for this post was done in partial fulfillment of this masters.

Book Release: Sharon R. Kaufman’s “Ordinary Medicine”

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Via the Duke UP website

Via the Duke UP website

In May 2015, Sharon R. Kaufman’s book Ordinary Medicine: Extraordinary Treatments, Longer Lives, and Where to Draw the Line is set to be released by Duke University Press. The text will address the contested division between what is a life-saving therapy and what proves to be over-treatment of older patients. This divide, Kaufman states, is frequently negotiated by pharmaceutical, biomedical, and insurance industries. Treatments that might seem aggressive or unnecessary to address late-life health concerns have become common procedures.

Drawing on ethnographic accounts from older patients, their families, and their physicians, Kaufman demonstrates how patients and their caregivers decide how much medical intervention is enough, or when it has gone too far. Kaufman considers what this new, medicalized meaning of the “end-of-life” means for patients and for the social world of medicine, while inviting us to consider how we might refresh the goals of medicine when caring for older patients.

Kaufman has previously published on a related topic in her book And a Time to Die: How American Hospitals Shape the End of Life. She is the Chair of the Department of Anthropology, History and Social Medicine at the University of California, San Francisco.

See more about the book from the publisher’s website here:

https://www.dukeupress.edu/Ordinary-Medicine/index.html