In the Journals

In The Journals – July Pt. II

Hello everyone! Please check out our roundup for the second half of the month. Also, the current issue of Hau has a symposium on Webb Keane’s Ethical Life: Its Natural and Social Histories (2016) that may be of interest, with contributions by Cheryl Mattingly, Rita Astuti, James Laidlaw, Nicholas Harkness, C. Jason Throop, Richard Schweder, and Webb Keane himself.

Science, Technology, and Human Values

Living with Spinal Cord Stimulation: Doing Embodiment and Incorporation

Lucie Dallbert

Seen as contributing to human enhancement, implanted technologies have recently been receiving a lot of attention. However, reflections on these technologies have taken the shape of rather speculative ethical judgments on “hyped” technological devices. On the other hand, while science and technology studies and philosophy of technology have a long tradition of analyzing how technological artifacts and tools transform and (re-)configure our lives, they tend to focus on use configurations rather than the intimate relations brought about by implanted technologies. Even the cyborg has lost some of its hermeneutic power as it has been detached from its material grounds, becoming a discursive entity. In this article, I reclaim the importance of materiality and explore how people live (and learn to live) with spinal cord stimulation (SCS), which is a type of neuromodulation technology. Implanted in bodies and seemingly out of sight, this technology does not cease to matter. Embodiment and incorporation are crucial for people to live well with SCS. Embodying the neuromodulation technology entails groping processes in which gestures are central and an increased intimacy with one’s bodily materiality. Incorporating it is highly relational and entangled with the bodies of loved and distant ones, humans and nonhumans.

Whose Body Is It? Technolegal Materialization of Victims’ Bodies and Remains after the World Trade Center Terrorist Attacks

Victor Toom

This article empirically analyzes how victims’ remains were recovered, identified, repatriated, and retained after the World Trade Center (WTC) terrorist attacks of September 11, 2001. It does so by asking the question whose body is it. This question brings to the fore issues related to personhood and ownership: how are anonymous and unrecognizable bodily remains given back an identity; and who has ownership of or custody over identified and unidentified human remains? It is in this respect that the article engages with technoscientific and legal, or “technolegal,” trajectories of human remains in the wake of the WTC tragedy. By using the metaphor of “materialization,” it becomes possible to trace how remains are forensically identified and implicated in legal regimes. “Technolegal materialization” as a concept and methodological sensitivity contributes to the current “actor-network theory” (ANT)-inspired legal scholarship, which tends to focus on legal practices in courtrooms but not those beyond them. In this article, 9/11 victims’ remains are followed from “Ground Zero” to the forensic laboratory and beyond and articulates five instances of technolegal materialization of bodily remains and their past and contemporary existences.

 

Social Science and Medicine

Embodying health identities: A study of young people with asthma

Lee F. Monaghan, Jonathan Gabe

The embodiment of health identities is a growing area of interest. Questions posed in this literature include: how important is the body in our understandings/experiences of health, how are everyday definitions of health and self embodied despite chronic illness, and how do social relations influence these interpretations? Mindful of such questions, this paper draws on a qualitative study of mild to moderate asthma among young people in Ireland. In-depth interviews were undertaken with 31 respondents aged between 5 and 17, including boys (n = 15) and girls (n = 16) from different class and ethnic backgrounds. Core themes included: the importance of play, physical activity and sport; diet/nutrition; and physical appearance. Asthma sometimes presented challenges in relation to specific domains, notably strenuous physical activity, though in many other respects its potential impact was discursively minimised. Attentive to various modalities of the lived body, we illustrate how health identities are negotiated among young people diagnosed with a chronic illness. Connections are also made with the sociology of childhood and (ill) health, which views young people as active agents.

“I just couldn’t step out of the circle. I was trapped”: Patterns of endurance and distress in Chinese-Canadian women with a history of suicidal behavior

Juveria Zaheer, Wes Shera, A. Ka Tat Tsang, Samuel Law, Wai Lun Alan Fung, Rahel Eynan, June Lam, Xiaoqian Zheng, Liu Pozi, Paul S. Links

Rationale: Recent studies have highlighted higher rates of suicidal ideation and behaviour and associated themes of gender role stress in Chinese women residing in North America. However, qualitative studies, which privilege their voices in the discourse of suicide prevention and provide insight into their experiences, are lacking.

Objective: To gain an understanding of the life histories, patterns of distress and constructions of suicide of Chinese-Canadian women with a history of suicidal behaviour.

Methods: Ten women were recruited from four mental health programs in Toronto, Canada and participated in qualitative interviewing and analysis informed by constructivist grounded theory.

Results: Chinese-Canadian women describe experiencing “stress” or “pressure” leading to the exacerbation of depressive symptoms. Stress and pressure are managed through a coping strategy of endurance, informed by the cultural conception of “ren”. Cultural influences contribute to the manifestation of stress and pressure as somatic symptoms and sleeplessness. Finally, the women describe feeling unable to endure through worsening distress, reaching a “breaking point”; suicidal behaviour is constructed as a strategy to disrupt this cycle.

Conclusion: This study challenges the binary notion that suicidal behaviour is either a consequence of mental illness or a reaction to interpersonal stress. Rather, the women describe an ingrained pattern of enduring through psychosocial problems without acknowledging worsening anxiety, depressive and physical symptoms. The pattern of endurance also prevents early treatment of these difficulties, resulting in the intensification of symptoms until a breaking point is reached. Knowledge of these patterns and coping strategies can allow for earlier identification and intervention for women at risk to prevent the worsening of distress leading to suicidal thoughts and behaviour.

First-time parents’ shared representation of postpartum depressive symptoms: A qualitative analysis

Erin J. Henshaw, Kristine M. Durkin, Rita J. Snell

Rationale: Maternal postpartum depression (PD) is a common, debilitating mental health problem. Yet despite effective treatments and widespread screening, treatment rates remain low. Previous studies suggest fathers are frequently consulted about maternal PD symptoms, but little is known about the process, content, or outcomes of these consultations.

Objective: The aim of this work was to explore how couples communicate about PD symptoms. Methods: A single purposive sample of first-time parents stratified by maternal depression screening scores (Edinburgh Postnatal Depression Scale; EPDS) and partner status was drawn from a prospective survey of 300 parents in the U.S. Midwest. Partnered mothers with an elevated (EPDS≥10) depression screening score at one of four time points in the postpartum year comprised the majority of the sample. Smaller samples of participants with low EPDS scores and single participants were included to provide contrast in the consultation and decision making process. A total of 39 participants (22 married/EPDS-high, 10 married/EPDS-low, 5 single/ EPDS-high, 2 single/EPDS-low) were interviewed at one year postpartum. Mothers and fathers were interviewed separately to promote candid responses and allow comparison of illness conceptualizations. Interviews were transcribed, analyzed, and coded through an iterative process.

Results: Couples’ conversations about mood changes centered on two overarching questions: How bad is it? and What should we do about it? Answering How bad is it? involved parents comparing maternal mood changes to uncertain depression criteria, and mothers asking partners and female relatives whether changes were normal. Answering What should we do about it? had three themes: Fathers feeling unprepared to respond to depression, mothers and fathers expressing reluctance to seek treatment, and couples working collaboratively to accommodate treatment or self-care.

Conclusion: Themes suggest partners significantly contribute to women’s conceptualization of mood changes and should be actively engaged in education, screening, and referral practices.

Living with sickle cell disease and depression in Lagos, Nigeria: A mixed methods study

Bolanle A. Ola, Scott J. Yates, Simon M. Dyson

Sickle cell disorders (SCD) and depression are both chronic illnesses of global significance. Past research on SCD and depression struggles to make sense of statistical associations, essentializes depression within the person with SCD, and treats stigma as an automatic correlate of chronic illness. A mixed methods study (March 2012–April 2014) was undertaken with people living with SCD and depression in Lagos, Nigeria, examining depression-as disease (questionnaires); depression-as-illness-experience (individual depth interviews), and depression-as-societal-sickness (focus groups). 103 people with SCD attending an outpatients clinic were administered the Patient Health Questionnaire-9, and 82 self-identified with some level of depression. Fifteen were subsequently interviewed about their illness experience. Their lives were characterized by being extensively subjected to vicious discriminatory remarks, including from significant others, negative experiences they felt contributed to their depression and even to suicidal thoughts and actions. Contrary to misconceptions of the relational nature of stigma, respondents recognized that stigma resulted not from their SCD but from assumed broken social norms and expectations, norms to do with educability, employability and parenthood. They recounted either that they successfully met such expectations in their own lives, or that they could conceivably do so with reasonable societal adjustments. Ten respondents with SCD and depression further took part in two series of three focus groups with five people in each series of groups. In groups people living with SCD were able to challenge negative assumptions about themselves; to begin to recognize collective social interests as a group, and to rehearse backstage, in discussions between themselves, social actions that they might engage in frontstage, out in wider society, to challenge discriminatory societal arrangements they held to contribute to their depression. To the extent that depression in SCD has social origins, then social interventions, such as anti-discrimination laws and policies, are key resources in improving mental health.

The social life of the dead: The role of post-mortem examinations in medical student socialization

Dawn Goodwin, Laura Machin, Adam Taylor

Dissection has held a privileged position in medical education although the professional values it inculcates have been subject to intense debate. Claims vary from it generating a dehumanising level of emotional detachment, to promotion of rational and dispassionate decision-making, even to being a positive vehicle for ethical education. Social scientists have positioned dissection as a critical experience in the emotional socialisation of medical students.

However, curricular revision has provoked debate about the style and quantity of anatomy teaching thus threatening this ‘rite of passage’ of medical students. Consequently, some UK medical schools do not employ dissection at all. In its place, observation of post-mortem examinations – a long established, if underutilised, practice – has re-emerged in an attempt to recoup aspects of anatomical knowledge that are arguably lost when dissection is omitted.

Bodies for post-mortem examinations and bodies for dissection, however, have striking differences, meaning that post-mortem examinations and dissection cannot be considered comparable opportunities to learn anatomy. In this article, we explore the distinctions between dissection and post-mortem examinations. In particular, we focus on the absence of a discourse of consent, concerns about bodily integrity, how the body’s shifting ontology, between object and person, disrupts students’ attempts to distance themselves, and how the observation of post-mortem examinations features in the emotional socialisation of medical students.

 

Sociology of Health and Illness

Stratified, precision or personalised medicine? Cancer services in the ‘real world’ of a London hospital (open access)

Sophie Day, R Charles Coombes, Louise McGrath-Lone, Claudia Schoenborn and Helen Ward

We conducted ethnographic research in collaboration with a large, research-intensive London breast cancer service in 2013–2014 so as to understand the practices and potential effects of stratified medicine. Stratified medicine is often seen as a synonym for both personalised and precision medicine but these three terms, we found, also related to distinct facets of treatment and care. Personalised medicine is the term adopted for the developing 2016 NHS England Strategy, in which breast cancer care is considered a prime example of improved biological precision and better patient outcomes. We asked how this biologically stratified medicine affected wider relations of care and treatment. We interviewed formally 33 patients and 23 of their carers, including healthcare workers; attended meetings associated with service improvements, medical decision-making, public engagement, and scientific developments as well as following patients through waiting rooms, clinical consultations and other settings. We found that the translation of new protocols based on biological research introduced further complications into an already-complex patient pathway. Combinations of new and historic forms of stratification had an impact on almost all patients, carers and staff, resulting in care that often felt less rather than more personal.

Breast-cancer-isation explored: Social experiences of gynaecological cancer in a Norwegian context

Kari Nyheim Solbrække and Geir Lorem

This article’s point of departure is recent claims that breast cancer survivorship displaying positivity and self-growth represents the gold standard for all forms of cancer survivorship in English-speaking Western cultures. An interview study of Norwegian women regarding gynaecological cancer followed by hysterectomy is used to explore whether this process is taking place beyond this setting. Results show that the women’s experiences of having to display survivorship in this manner are not as notable as found in English-speaking Western countries, neither is their experience of social othering. Reasons for this may be strong norms of social egalitarianism marking Norwegian culture and breast cancer informational campaigns that have not yet totally defined Norwegian norms for how to survive cancer. At the clinic and in the public sphere, however, the women experience gynaecological cancer as clearly having lower status than breast cancer, leading to a strong sense that the bodily site of their disease is taboo. Hence, as found in English-speaking cultures, the complex embodied nature of having gynaecological cancer and life beyond treatment seems to be silenced by the media and medical institutions. Finally, implications for future research and health care related to cancer survivorship are also discussed.

The dispositions of things: the non-human dimension of power and ethics in patient-centred medicine (open access)

John Gardner and Alan Cribb

This article explores power relations between clinicians, patients and families as clinicians engage in patient-centred ethical work. Specifically, we draw on actor-network theory to interrogate the role of non-human elements in distributing power relations in clinical settings, as clinicians attempt to manage the expectations of patients and families. Using the activities of a multidisciplinary team providing deep brain stimulation to children with severe movement disorders as an example, we illustrate how a patient-centred tool is implicated in establishing relations that constitute four modes of power: ‘power over’, ‘power to’, “power storage” and “power/discretion”. We argue that understanding the role of non-human elements in structuring power relations can guide and inform bioethical discussions on the suitability of patient-centred approaches in clinical settings.

I am just a ‘maae’ (mother): experiences of mothers injecting drugs in Thailand

Niphattra Haritavorn

Mothers who use drugs face much discriminatory action as society in general finds female drug users’ modes of caring for their children unacceptable. In this article, I explore the ways in which Thai women’s injecting practices revolve around the role of mother ‘maae’ and the ways they employ tactics to challenge the motherhood discourse. This article draws on in-depth interviews with 30 Thai mothers injecting drugs. Thai mothers injecting drugs struggled with stigma and self-blame. They internalise the values of the mother ‘maae’, that is, what the mother is supposed to be; attempting to combine their drug use with their parental responsibilities. Having a child is treated as a means for many women to manage the hostile social impacts of being an addict mother as well as anxieties about the future of their children. To maintain identity as a mother, as gender norms dictates, the mothers employ several tactics to defend that identity from the threats. In conclusion, the findings have implications for harm reduction and reproductive services for women using drugs in Thailand; health care providers need to appreciate the ramifications of the lived experiences of the women who take drugs.

 

Subjectivity

Encountering fat others, embodying the thin self: Emotional orientations to fatness and the materialization of feminine subjectivities

Moss E. Norman, Geneviève Rail

Using the cultural phenomenology of Sara Ahmed, we expand upon biopolitical analyses of obesity discourse by interrogating how the contours of normative feminine embodiment are formed through entangled relations between dominant obesity discourse and everyday sensuous encounters. We examine qualitative interviews with young women and suggest that fat encounters are situated within a “cultural politics of emotion”, where “feelings about” and “feelings for” fat others reflect emotional orientations that imbue the boundaries demarcating the normatively thin feminine subject with a sensuous materiality. We conclude by suggesting that Ahmed’s cultural phenomenological approach offers novel and nuanced insights into the materialization of embodied feminine subjectivities by centring the sensuous, felt and emotional encounters between sameness and difference.

 

 

Theory, Culture, and Society

Care, Laboratory Beagles and Affective Utopia

Eva Giraud and Gregory Hollin

A caring approach to knowledge production has been portrayed as epistemologically radical, ethically vital and as fostering continuous responsibility between researchers and research-subjects. This article examines these arguments through focusing on the ambivalent role of care within the first large-scale experimental beagle colony, a self-professed ‘beagle utopia’ at the University of California, Davis (1951–86). We argue that care was at the core of the beagle colony; the lived environment was re-shaped in response to animals ‘speaking back’ to researchers, and ‘love’ and ‘kindness’ were important considerations during staff recruitment. Ultimately, however, we show that care relations were used to manufacture compliancy, preventing the predetermined ends of the experiment from being troubled. Rather than suggesting Davis would have been less ethically troubling, or more epistemologically radical, with ‘better’ care, however, we suggest the case troubles existing care theory and argue that greater attention needs to be paid to histories, contexts, and exclusions.

Screen Trauma: Visual Media and Post-traumatic Stress Disorder

Amit Pinchevski

Recent studies in psychiatry reveal an acceptance of trauma through the media. Traditionally restricted to immediate experience, Post-traumatic Stress Disorder (PTSD) is now expanding to include mediated experience. How did this development come about? How does mediated trauma manifest itself? What are its consequences? This essay addresses these questions through three cases: (1) ‘trauma film paradigm’, an early 1960s research program that employed films to simulate traumatic effects; (2) the psychiatric study into the clinical effects of watching catastrophic events on television, culminating with the September 11 attacks; (3) reports on drone operators who exhibit PTSD symptoms after flying combat missions away from the war zone. The recognition of mediated trauma marks a qualitative change in the understanding of media effects, rendering the impact literal and the consequences clinical. What informs recent speculations about the possibility of trauma through media is a conceptual link between visual media and contemporary conceptions of trauma.

 

Transcultural Psychiatry

Traumatic pasts and the historical imagination: Symptoms of loss, postcolonial suffering, and counter-memories among African migrants

Roberto Beneduce

This work aims to rethink the relationship between anthropology and cultural psychiatry from a historical perspective, through reflections on the dynamics of forgetting and remembering in the context of migration. While migrants’ symptoms often bear cultural hallmarks of suffering, they also reveal images of a traumatic history, which resurface in moments of danger, uncertainty, and crisis. I claim these symptoms are allegories of a dispossessed past, and can be interpreted as counter-memories, as “palimpsests” of an eclipsed script. Trauma symptoms keep returning to a collective past, and thus can be considered a particular form of historical consciousness. Psychiatric diagnoses may obscure these counter-memories. In particular, the diagnostic category of posttraumatic stress disorder that is commonly attached to traumatic experiences in current clinical practice recognizes the truth of individual traumatic events, but at the same time contributes to concealing the political, racial, and historical roots of suffering.

“The sun has set even though it is morning”: Experiences and explanations of perinatal depression in an urban township, Cape Town

Thandi Davies, Marguerite Schneider, Memory Nyatsanza, and Crick Lund

This study examined experiences and explanations of depression amongst Xhosa-speaking pregnant women, mothers, and health workers in an urban township in Cape Town, South Africa. The study was conducted as part of formative research for a randomised controlled trial to develop and evaluate a task-sharing counselling intervention for maternal depression in this setting. We conducted qualitative semi-structured interviews with 12 depressed and 9 nondepressed pregnant women and mothers of young babies, and 13 health care providers. We employed an in-depth framework analysis approach to explore the idioms, descriptions, and perceived causes of depression particular to these women, and compared these with the ICD-10 and DSM-5 criteria for major depression. We found that symptoms of major depression are similar in this township to those described in international criteria (withdrawal, sadness, and poor concentration), but that local descriptions of these symptoms vary. In addition, all the symptoms described by participants were directly related to stressors occurring in the women’s lives. These stressors included poverty, unemployment, lack of support from partners, abuse, and death of loved ones, and were exacerbated by unwanted or unplanned pregnancies and the discovery of HIV positive status at antenatal appointments. The study calls attention to the need for specifically designed counselling interventions for perinatal depression that are responsive to the lived experiences of these women and grounded in the broader context of poor socioeconomic conditions and living environments in South Africa, all of which have a direct impact on mental health.

Health behavior change benefits: Perspectives of Latinos with serious mental illness

Daniel E. Jimenez, Kimberly Burrows, Kelly Aschbrenner, Laura K. Barre, Sarah I. Pratt, Margarita Alegría, and Stephen J. Bartels

The objective of this study was to explore the perceived benefits of engaging in health behavior change from the viewpoint of overweight and obese Latinos with severe mental illness (SMI) enrolled in the U.S. Qualitative, semistructured interviews were conducted with 20 obese Latinos with SMI who were enrolled in a randomized trial evaluating the effectiveness of a motivational health promotion intervention adapted for persons with SMI. Overweight and obese Latino participants believed that engaging in health behavior change would have both physical and mental health benefits, including chronic disease management, changes in weight and body composition, and increased self-esteem. Interventions that explicitly link physical activity and healthy eating to improvements in mental health and well-being may motivate Latinos with SMI to adopt health behavior change.

Maternal perception of emotional difficulties of preschool children in rural Niger

Caroline Marquer, Rebecca F. Grais, and Marie Rose Moro

Mental health care for infants and young children is often greatly limited in low-resource settings. The purpose of this study was to describe maternal perception of emotional difficulties of preschool children in a rural area of Niger (Maradi). In this context, both mental health awareness and services were scarce. This research was part of a larger cross-cultural validation study of a screening tool for psychological difficulties in children aged 3 to 6 years old. Data collection included group discussion and individual interviews. A total of 10 group interviews and 83 individual interviews were conducted. The results highlight mothers’ perceptions concerning their children’s psychological difficulties. Sleep difficulties were considered significant by the mothers and were used often as an entry point for further discussion of concerns. Peer and sibling relationships, separation anxiety, and reactions to difficult events were also described. Identification of mothers’ perceptions of children’s main difficulties through a mixed-method approach shows promise as a way to inform interventions to provide culturally appropriate care for children in need.

An exploration of the adaptation and development after persecution and trauma (ADAPT) model with resettled refugee adolescents in Australia: A qualitative study

Lucy S. McGregor, Glenn A. Melvin, and Louise K. Newman

Refugee adolescents endure high rates of traumatic exposure, as well as subsequent resettlement and adaptational stressors. Research on the effects of trauma in refugee populations has focussed on psychopathological outcomes, in particular posttraumatic stress disorder. However this approach does not address the psychosocial and adaptive dimensions of refugee experience. The ADAPT model proposes an alternate conceptualization of the refugee experience, theorizing that refugee trauma challenges five core psychosocial adaptive systems, and that the impact on these systems leads to psychological difficulties. This study investigated the application of the ADAPT model to adolescents’ accounts of their refugee and resettlement experiences. Deductive thematic analysis was used to analyse responses of 43 adolescent refugees to a semistructured interview. The ADAPT model was found to be a useful paradigm to conceptualize the impact of adolescents’ refugee and resettlement journeys in terms of individual variation in the salience of particular adaptive systems to individuals’ experiences. Findings are discussed in light of current understandings of the psychological impact of the refugee experience on adolescents.


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