Thesis (Ph. D.)--University of Oregon, 2004. / Typescript. Includes vita and abstract. Includes bibliographical references (leaves 300-341). Also available for download via the World Wide Web; free to University of Oregon users.

I conducted a mixed-methods collaborative ethnography using the lens of relational coordination theory. This included a qualitative survey using an established tool to analyze the relational dimensions of multidisciplinary teamwork, participant observation, interviews, and narrative surveys. Findings were presented to clinicians in working groups for further interpretation and to facilitate co-creation of targeted interventions designed to improve team relationships and performance. I engaged a complex multidisciplinary network of ~500 care providers dispersed across seven core interdependent clinical disciplines. Initial findings highlighted the importance of each dimension of relational coordination in trauma care. Narrative survey and ethnographic findings further highlighted the centrality of team briefings and a translational simulation program in contributing positively to team culture and relational ties. A range of 16 interventions – focusing on structural, process and relational dimensions – were co-created with participants after reflecting on findings and are now being implemented and evaluated by various trauma care providers. Relational coordination theory is a valuable way to conceptualize the coordination of trauma care. Collaborative reflection on quantitative and narrative data through this lens can be used as a community-based quality improvement tool.

Considering the changes the Lake Atitlan, Guatemala region has undergone in the last several years, ODIM (Organization for the Development of the Indigenous Maya) seeks to understand the needs of the San Juan La Laguna and San Pablo La Laguna communities, and to provide competent, culturally-aligned care that is affordable to the Indigenous Maya of this region. Using mixed-methods approaches that incorporate interviews, surveys, graphic anthropology, and evaluation methods, this study investigated (1) the formal and informal health care services (including those offered by ODIM) and how and why they are utilized by local Guatemalans, (2) Guatemalan perceptions and experiences of health, wellbeing, and illness to understand how they might influence health related behavior, and (3) community health care needs and how ODIM can fill those needs. These objectives served to inform key stakeholders of current gaps in healthcare services, provide feedback regarding the ODIM health services and programs, and provide insight into the current health needs in order to ameliorate the burden of disease and illness around Lake Atitlan, Guatemala. This study produced a comprehensive community health profile, and it discusses the current state of health care, explains the local perspectives of health care, and gives direct feedback and recommendations to ODIM's community health programs.

Whether it is social stigma or state policy, abortion seekers are facing an intense amount of obstacles when it comes to accessing their abortion in Texas during the pandemic. To better understand how COVID-19 affected the landscape of abortion access, it was necessary to listen to the experiences of abortion seekers during the pandemic. Experts in the field of abortion advocacy were also interviewed to provide perspective on the trajectory of abortion access during COVID-19. Abortion seekers were screened through a survey to ensure they met the criteria of getting an abortion, living in Texas, and being 18+ while experts in the field were contacted through my personal activist network. COVID-19 exacerbated challenges that already existed in the landscape of abortion access in Texas. Misinformation and managing the tentative scheduling of clinics are two of the most prominent exacerbated challenges abortion seekers experience. This is followed by an increase in exposure to unsupportive families as well as the expenses that come with traveling to appointments. The additional COVID-19 related restrictions created consequences that embodied themselves as delays in receiving abortion care, a much lonelier process, and tentative employment. A positive outcome of COVID-19 is the potential of abortion care being integrated into Telehealth services that would severely decrease the public harassment abortion seekers and providers experience from antis standing outside of clinics, travel expenses, and the lack of privacy some might feel when going into a clinic.

This paper examines the concept of safety as it encompasses the personal and technological spheres as imagined by a group of active duty service members, veterans, a police officer, and civilians, as well as the agency exercised by those with military or police backgrounds when it comes to safety technology. A group of seventeen individuals took part in a battlefield simulation to test a wearable junctional tourniquet created by ARMR Systems, LLC, an innovative advancement in tourniquet technology. After the simulation, participants were interviewed, surveyed, and took part in a focus group to determine not only product suitability but also to explore the underlying reasons for their recommendations for product changes. Results showed that those with military or police background performed safety rituals prior to duty and exercised agency in the desire to obtain the best possible personal safety devices and technology to be used for themselves and their comrade-in-arms. All participants expressed concerns for their safety in regards to technology in general, specifically, the hacking and use of personal data and what is perceived as lack of governmental oversight. Almost all of the changes to improve product safety, comfort, and utility were adapted. The topics discovered during the course of this research proves a need for safety product testing from an applied anthropological perspective.

Kenyan informal settlements have been thoroughly depicted by previous researchers as biophysical, epidemiological, and economic risk environments in which food insecurity is recognised as one of the most persistent everyday challenges. Although unemployment and illness are key contributors to the inability to purchase sufficient food, the reasons why households experience food insecurity are more complicated and not fully understood. Part of the problem is that few previous studies have privileged socio-political contributions (e.g. gender-based power inequalities and the impacts of social networks) to household food security risk. Whilst food security researchers commonly utilise the concept of vulnerability to address household-scale risk, this concept is rarely applied to interpersonal dynamics within households. Using data gathered through participant observation, questionnaires, and 109 in-depth interviews with 67 participants, this thesis provides an ethnographic account of household food insecurity in an informal settlement which addresses three primary questions: (1) In what ways might interpersonal relationships within households contribute social and political obstacles to achieving food security? For instance, how and why might risk for food insecurity emerge from experiences of interpersonal conflict? (2) What role do extra-household social networks play in experiences of food security within households? (3) How useful is the concept of vulnerability for addressing experiences of risk which are negotiated between household members? In the informal settlement of 'Bangladesh', Mombasa, Kenya, conflict within domestic, especially conjugal, relationships represents a potential source of risk to food security for individual members or entire households. Contributing to this conflict are gender inequality, power differentials, the failure to meet marital expectations, and how people respond when presente with risk. Resulting experiences of food insecurity are shown to contribute to further conflict in the household, thereby creating a cycle of conflict and food insecurity. Those who find that they have insufficient food at home may receive assistance (food or money) from members of their social networks. However, these relationships may also contribute to experiences of conflict, and therefore insecurity, within households. Applying concepts of vulnerabilty to account for experiences of risk and their consequences (food insecurity) requires differentiating between what represents a hazard, a response, and an outcome. Within multi-person households, it is exceedingly difficult to divide lived experiences involving interpersonal conflict among these three categories. Thus, I argue that vulnerability is less useful for research concerning intra-household dynamics than it is for studies which assume households to be undifferentiated units.

In this dissertation, I examine how biological data practices enable researchers to interact with and enact biological life in statistical ways, and how this poses challenges to the use and integration of biological knowledge with clinical practices. Instead of considering data as a pre-existing cognitive representation of the world, I combine scholarship on the anthropology of science with scholarship from science and technology studies to consider data as a form of material practice. I consider, in other words, how data is intertwined with technologies, people, and values, such that data is used to make normative and naturalized claims about biology and disease. To explore the generation, interpretation, and use of biological data, I focus on the field of “metabonomics”—the post-genomic study of metabolism—as it is carried out within the Biomolecular Medicine Laboratory (BMM) at Imperial College London. In doing so, I examine how metabonomics researchers use biochemical techniques and multivariate statistics to investigate metabolism and disease. After providing an overview of the literature, central questions, and methodology that frame this dissertation, I examine how multivariate statistical practices are central to the historical identity and epistemic culture of metabonomics research at the BMM. From there, I demonstrate how multivariate statistics require and enable metabonomics to enact metabolism as an inherently complex entity. Consequently, I examine how researchers struggle to assign the categories of “normal” and “abnormal” to dynamic notions of metabolism and health. I then explore how the translation of metabonomics knowledge into clinical practices places value on multivariate forms and large volumes of information, eclipsing the importance of human interpretation and judgment. Finally, I examine how metabonomics research is used to develop personalized medicine, but in ways that make it difficult to address the health of individual patients.

This thesis examines the experiences of people living with dystonia1 and the ways these are represented by people living with dystonia, the Dystonia Society, neurologists, quality of life (QOL) researchers and pharmaceutical companies. Drawing on ethnographic fieldwork conducted within the Dystonia Society and on projects developing a disease-specific QOL measure, and investigating the impact of dystonia on people’s QOL, the thesis explores a series of questions about the conceptual and practical problems inherent in such measures. It asks: • How dystonia is defined and represented and its impact on people’s lives • Whether people’s experiences of living with dystonia can be adequately mapped by generic or disease-specific QOL measures and how the methodology used in their creation might affect such representations • How QOL measures are used to classify and compare and why it is now deemed necessary to represent people’s experiences in this form The thesis is contextualised within a historical account of the origins of QOL measurement and the social and economic context to its rapid expansion, including the pharmaceutical industry’s use of QOL to bring together diverse groups of actors. I address traditional anthropological questions about measuring and creating universal systems of classification and valuation, but go beyond this to link QOL measurement to the classification and hierarchisation of “audit culture”. I describe how attempts to articulate “the patient’s voice” through measures of QOL can silence the voices of people with limiting conditions and suggest we approach their experiences through narratives that embed their conditions in their lives and give them a meaning that is not wholly negative. I argue that even though the phrase “quality of life” promises an empowering and holistic vision of health, there are two main reasons why QOL measurement cannot fulfil this promise. Firstly, it is primarily a tool for audit, and secondly, new measures reproduce the assumptions of existing measures or clinical models and exclude the elements that people consider most important in maintaining quality of life. Paradoxically, the discourse can reduce people’s QOL when it is used to justify rationing in the UK and redirection of resources internationally. However, despite my criticisms of QOL, I conclude that it has benefited people living with dystonia by creating a discursive space for the discussion of health in non-clinical terms and a language to make claims for resources and the acknowledgement of their experiences. 1A chronic neurological condition involving involuntary muscle spasms in one or more body parts.

This thesis examines the experiences of people living with dystonia1 and the ways these are represented by people living with dystonia, the Dystonia Society, neurologists, quality of life (QOL) researchers and pharmaceutical companies. Drawing on ethnographic fieldwork conducted within the Dystonia Society and on projects developing a disease-specific QOL measure, and investigating the impact of dystonia on people’s QOL, the thesis explores a series of questions about the conceptual and practical problems inherent in such measures. It asks: • How dystonia is defined and represented and its impact on people’s lives • Whether people’s experiences of living with dystonia can be adequately mapped by generic or disease-specific QOL measures and how the methodology used in their creation might affect such representations • How QOL measures are used to classify and compare and why it is now deemed necessary to represent people’s experiences in this form The thesis is contextualised within a historical account of the origins of QOL measurement and the social and economic context to its rapid expansion, including the pharmaceutical industry’s use of QOL to bring together diverse groups of actors. I address traditional anthropological questions about measuring and creating universal systems of classification and valuation, but go beyond this to link QOL measurement to the classification and hierarchisation of “audit culture”. I describe how attempts to articulate “the patient’s voice” through measures of QOL can silence the voices of people with limiting conditions and suggest we approach their experiences through narratives that embed their conditions in their lives and give them a meaning that is not wholly negative. I argue that even though the phrase “quality of life” promises an empowering and holistic vision of health, there are two main reasons why QOL measurement cannot fulfil this promise. Firstly, it is primarily a tool for audit, and secondly, new measures reproduce the assumptions of existing measures or clinical models and exclude the elements that people consider most important in maintaining quality of life. Paradoxically, the discourse can reduce people’s QOL when it is used to justify rationing in the UK and redirection of resources internationally. However, despite my criticisms of QOL, I conclude that it has benefited people living with dystonia by creating a discursive space for the discussion of health in non-clinical terms and a language to make claims for resources and the acknowledgement of their experiences. 1A chronic neurological condition involving involuntary muscle spasms in one or more body parts.

A wealth of research into medical and healing traditions of Maya communities has been conducted. Previous research has also explored unique conceptions of health and disorder held by Maya peoples. This study adds the voices of Q’eqchi’ Maya healers of southern Belize to this accruing research. Working from Indigenous research paradigms, a nine-month ethnographic study with six practicing members of the Q’eqchi’ Healers Association (QHA) of Belize occurred. The QHA is an endogenous grass-roots association formed in 1999 to preserve Maya medical knowledge and healing practices. In collaboration with the QHA members, this research focused on the healers’ conceptualizations and treatments of mental illness and disorders. During ethnographic research, 94 in-depth qualitative interviews with the six members of the QHA and 43 observations of healing encounters occurred. Twenty-six additional interviews were held with patients and participation in other healing ceremonies and cultural gatherings frequently took place. From the analysis of these data, there are 17 different mental illnesses and disorders recognized by the Q’eqchi’ healers that fall within one of four broad “narrative genres.” The main argument of the dissertation is that these “narrative genres” are epistemological structures that the healers use to “read” and “emplot” specific cases of illness to which they attend. Since narrative theory and research focuses largely on individual patient experiences, this study expands contemporary theory by looking at the Q’eqchi’ healers medical epistemology through a narrative lens. It is argued that a deeper understanding of Q’eqchi’ conceptions of mental illness and disorder can also aid dialogues between the “traditional” healers and biomedical practitioners working within the Belize Ministry of Health while also improving the treatment of Q’eqchi’ patients. This research adds to the areas of applied ethnography, narrative theory, Indigenous epistemology, cultural psychiatry, medical anthropology, and medical pluralism.