This thesis is based on 18 months ethnographic fieldwork in and around the National Heath Service (NHS) in Greater Manchester, UK, between 2011 and 2012. The fieldwork focused on practices and experiences of cancer care and the care of other related diseases (e.g. brain tumour, post surgical pain and cancer related mental illnesses) and primarily involved in-depth interview-based case studies with patients, carers and clinicians, as well as participant observation at hospital outpatient clinics and a local cancer centre. Over the past thirty years, the English NHS has been through numerous market- based structural reorganisation programmes broadly aimed at increasing provider competition and patient choice within the health service. At the same time, various new ways of configuring medical knowledge and reforming the ‘traditional clinical interaction’ have grown in influence in NHS care practices. This thesis seeks to record the ways in which new managerial technologies, clinical tools and medical and healthcare rationalities (e.g. risk medicine, patient pathways, diagnostic categories and the logic of patient choice) introduce new ways to experience disease and treatment. Following Das (2015), among others (see Biehl and Moran- Thomas 2009), I do not treat these abstract forms as dominating forces that over-determine experience and practice. But instead, I attend to how broad structures and rationalities become embedded in practices, experiences and biographies of illness and care. In particular, I focus on what is required for care to be accessed (or ‘activated’) in a context permeated by these competing systems of value and meaning.

This dissertation presents an ethnographic account of a socially diverse, public breast cancer clinic in Johannesburg. The findings of this qualitative research radically challenge the unproblematised and overdetermined use of the categories of race and gender in existing literature concerning this disease. The growing breast cancer epidemic in South Africa affects all demographic categories of women including young women. Yet, previous research frames this as a racialised and gendered crisis. Black women have been depicted as ignorant “problem patients” who resist biomedical treatment, and all women are described as having a particular relationship to their breasted bodies and a deep fear of mastectomy. Departing from these stereotypes, this ethnography reveals unanticipated data showing, firstly, that race, class, age and level of education did not determine women’s relationship to breast cancer and biomedicine. Secondly, socially diverse women commonly experienced breast cancer as a life-threatening disease that evoked confrontation with existential concerns regarding suffering, death, family, and faith. Due to these commonalities, an intimate and powerful sociality existed amongst women at this clinic. Thirdly, within this sociality, women accepted mastectomy as a necessity in creating a healthy body. Breastlessness was normalised and women generally were reluctant of breast reconstruction, thus destabilising the conceptual relationship between breasts and gender. This dissertation’s deconstruction of the use of hegemonic social categories is a significant intervention in a context where these categories are often viewed as absolute determinants of social and health phenomena, and therefore prompts more nuanced approaches to understanding experiences of illness in post-apartheid South Africa.

Abstract This study was inspired by the need to develop awareness about what is going on in Mozambique regarding to the issue of HIV/AIDS. The research examined how and why the organizations of PLWA ( People Living with HIV/AIDS) in Mozambique are emerging and developing, compared the particularities of the existing organizations of people living with HIV/AIDS in three province of this country (Maputo, Manica and Zambezia), and finally examined how they function, and interact with governmental and non- governmental institutions. The study made use of the ethnographic method to design and generate a rapid "picture" of the social culture around this HIV community. The focus on this method provided further in-depth qualitative insights. Behavioral surveys were designed to provide rapid key data on sexual behavior, condom use and STI1s. Together, these sources of data provided a spatial, quantitative and qualitative overview of the research. The results from this study turned that the associations of PLWA and its members face many problems such as discr imination and stigma that is attached to the scourge. But notwithstanding these problems, these associations are showing an incredible dedication to addressing the issue of HIV/AIDS. In the three provinces where this research was conducted it transpired that the associations of PLWHA are a new phenomenon, where the members are looking for their own space in order to tackle the problem that is being posed by HIV/AIDS. The research reveals, furthermore, that there are no significant differences between HIV/AIDS associations in these three provinces. There are more similarities than there are differences. The associations have in common issues such as unemployment, low level of schooling, uncontrolled urbanization, prostitution, lack of resources to support their family members, etc. Other types of similarities are shaped by patterns of formation of these associations which were similar, what invites one to think that may have been formed by the same people. As combating HIV/AIDS seems an important tool in poverty eradication, Government, civil society and the media should step up its efforts of reducing discrimination and stigmatization of PLWA through information campaigns. They should also redesign the messages in the information campaigns to ensure that they achieve the targeted audience, and add messages that promote PLWA associations and the benefits of joining them. 1 Sexual transmitted infections

While coffee culture has long since been positively associated with intellectual and working life, the health and safety of its primary stimulant, caffeine, has recently fallen under scrutiny by the FDA. This medical anthropology thesis provides a biocultural synthesis of caffeine culture, health effects, and biological variation in adverse effects related to pharmacodynamics and pharmacokinetics. Supporting evidence for variation in responses to caffeine was found through surveying 100 participants, investigating caffeine consumption levels, perceptions and health beliefs, adverse effects experienced, and medical encounters. Increased rates of adverse effects were found for students, pharmaceutical and over-the-counter drug users, and for participants reporting negative or ambivalent perceptions of caffeine, intolerance, or sensitivity to caffeine. Variation in rates of adverse effects suggests biocultural interactions account not only for patterns in pharmacological data, but are also clinically significant in constructing risk of caffeine intoxication. / Includes bibliography. / Thesis (M.A.)--Florida Atlantic University, 2014. / FAU Electronic Theses and Dissertations Collection

Dans une époque de circulations mondialisées nous sommes confrontés à des formes de souffrances complexes et inédites qui échouent dans les services socio-sanitaires. Objets muets de nombreuses recherches sur l’accès au soin, ou sur les troubles psychiatriques qui les affectent, les demandes de santé mentale des personnes migrantes ont soulevé des débats décennaux dans l’articulation entre anthropologie et psychologie. Dans diverses configurations historiques, des manières différentes de regarder l’autre ont construit des modèles spécifiques de prise en charge d’un public migrant. Aujourd’hui les souffrances des personnes migrantes semblent échapper à tout modèle de prise en charge qui risque de les figer dans des lectures préconçues et de gommer leur pluralité. Cela, souligne l’importance d’une redéfinition des modèles théoriques et des pratiques cliniques à l’étude des souffrances contemporaines. À partir d’une ethnographie du quotidien que nous offrait notre situation clinique de terrain, nous avons essayé de décrire ces souffrances dans leur complexité. À travers une démarche sociographique et narrative qui nous a permis d’intégrer le maximum d’éléments biographique des personnes, nous avons enrichi notre écoute clinique. Cette écoute attentive, ouverte et centrée sur la personne a fait apparaître un ensemble de dimensions qui souvent ne sont pas prises en compte dans la description des souffrances en situation de mondialisation. Ces dimensions mêlant des variables affectives, politiques, économiques et sociales, nous les appellerons configurations affectives. Nous avons pu mener une réflexion autour de ce qui construit aujourd’hui les difficultés singulières d’être au monde du sujet migrant contemporain. Ainsi nous avons pu nous recentrer sur l’implication du sujet comme acteur d’itinéraires thérapeutiques pluriels et variables qui s’insèrent dans les trajectoires migratoires. Dans une approche qui se situe entre une anthropologie médicale clinique et une clinique de la subjectivité, entendre les expériences de vie de ces personnes souvent rendues invisibles par des processus d’altérisation – d’autant plus dans la santé mentale – permet de les reconnaître dans leurs existences et demandes singulières. Nous essayons enfin de contribuer au développement des services compétents dans l’intervention psychosociale avec des personnes en situation de souffrances mondialisées. / In the context of global flows of people, local social and health services are confronted to different forms of complex and unprecedented suffering. Immigrants’ mental health needs have triggered numerous debates in the last decades, in particular concerning the articulation between anthropology and psychology. Their experience remained invisible and unexplored in research on healthcare access or in relation to the psychiatric disorders they cope with. Through different historical contexts, different approaches to construe the relationship to the Other have suggested different healthcare approaches for immigrants specifically. Today, these different analytical propositions seem unable to capture the plural dimension of contemporary immigrant suffering, and threaten to limit their understanding to preconceived categories. This leads to a need for redefining theoretical models and clinical strategies.This study describes the complexity of human suffering. It is grounded in an ethnography of everyday practice at a mental healthcare clinic. It relies on a sociographic and narrative approach which has allowed to take into consideration a maximum of biographic information on subjects, and which has enriched our clinical listening skills. This careful, open and person-centered form of listening unveiled a number of dimensions that are rarely taken into account in the description of globalization-related forms of suffering. Such dimensions reveal a constellation of affective, political, economic and social variables, which we have decided to conceptualize as “affective configurations”. We have carried out an in-depth analysis of new forms of being-in-the-world for contemporary subjects. We thus shifted the focus on the subject as an actor of multiple and changing therapeutic itineraries within immigration trajectories. This approach is located at the intersection between clinical medical anthropology and subject-centered clinic. It both gives access to the subjects’ experiences and acknowledges their existence and unique needs – while until then, they had remained invisible through a focus on their otherness, particularly in the context of mental health. Finally, we attempt to contribute to developing competent psychosocial services for globalization-related forms of suffering.

A doença falciforme (DF) é caracterizada pela presença de uma Hemoglobina S (HbS), a qual confere a célula um formato de foice. Esta doença é considerada uma hemoglobinopatia por ser uma alteração genética humana com alta frequência populacional que requer tratamento precoce para que os pacientes possam sobreviver. As doenças falciformes mais comuns são: HbSC, HbSD, S beta talassemia e a forma homozigota HbSS, também denominada de Anemia Falciforme (AF). Para que se possam minimizar as internações, as complicações clínicas e aumentar a qualidade de vida dos pacientes são necessários compreender suas experiências com a doença. Nesta investigação o objetivo foi analisar os sentidos da experiência com a AF atribuídos pelos adoecidos. Para alcançar este objetivo, realizou-se estudo com abordagem metodológica qualitativa, adotando o referencial teórico da Antropologia Médica e a narrativa como método. Após aprovação ética da pesquisa, foram convidadas a participar do estudo onze pessoas com AF, em acompanhamento terapêutico em um Hemocentro do interior do estado de São Paulo. As técnicas de coleta de dados foram as entrevistas semiestruturadas gravadas, a observação direta e registros nos diários de imersão, realizadas no Hemocentro e no domicílio de alguns dos participantes. A partir das entrevistas foram construídas as narrativas individuais e identificação dos códigos. Para a análise dos dados provenientes das narrativas, utilizou-se a análise temática indutiva. Integrou-se os aspectos comuns e distintos das narrativas individuais em gerais classificadas por unidades de sentidos. Os resultados foram analisados e apresentados a partir de três narrativas: Narrativa 1. Importância do conhecimento sobre a doença e os tratamentos para o controle do corpo com a doença, na qual o sentido atribuído ao conhecimento sobre a doença, medicações, efeitos e complicações é de controle do corpo; Narrativa 2. Repercussões da doença, tratamentos e complicações para a vida, e os quatro subtemas: 2.1 Limitações físicas pelas complicações foi um dos aspectos mais destacados nas narrativas individuais. O sentido atribuído à estas limitações é de desesperança, pois alteram todas as dimensões da vida. 2.2 Vida atual e futuro, os participantes discorrem sobre as dificuldades na formação educacional e no trabalho e atribuem o sentido de normalidade da vida, 2.3 Estigma pela doença e preconceito pela cor da pele, neste subtema as descrições e justificativas atribuídas ao estigma e ao preconceito definem sentidos de vulnerabilidade pessoal e social, 2.4 Importância dos suportes familiar e religioso, os sentidos atribuídos à participação da família e da religião em suas vidas é de suporte emocional, proteção e esperança e Narrativa 3. Desafios para a gestação e maternidade, pelo qual compreende-se que para estas mulheres, o sentido de ser mãe é a de concretização da identidade feminina, mas com ambiguidade entre desejo e medo. Essas narrativas expõem as questões que foram significativas pela pessoa com AF na experiência com a doença e os tratamentos, integrando o presente ao passado e futuro. Por meio de estórias, o enredo da vida com a doença e tratamentos foi sendo construído, expondo conhecimentos, crenças, valores e práticas que os ajudaram a lidar com as situações. A análise das narrativas centradas na experiência de um grupo de pessoas com AF, a partir do sistema cultural, permitiu-nos explicar como a cultura influencia a doença e os tratamentos, por meio dos sentidos. Esta análise fornece conhecimento para além do modelo biomédico e pode ser aplicado em pesquisas futuras e no processo de trabalho em saúde / Sickle cell disease (SCD) is characterized by the presence of Hemoglobin S (HbS) which gives to cell a sickle shape. This disease is considered a hemoglobinopathy because it is a human genetic alteration highly frequent in the population and it requires early treatment so patients can survive. The most common sickle cell diseases are: HbSC, HbSD, S beta-thalassemia and the homozygous form HbSS, also named Sickle Cell Anemia (SCA). To minimize hospital admissions, clinical complications and increase patients\' life quality it is necessary to understand their experiences with the disease. In this investigation, the aim was to analyze the senses of the experience with SCA attributed by sick patients. To reach this goal, we conducted a study with a qualitative methodological approach, adopting the theoretical reference of Medical Anthropology and narrative as a method. After the ethical approval of the research, eleven people with SCA were invited to participate in the study, they were receiving therapeutic follow-up in a Blood Center in the countryside of São Paulo State. The techniques for data collection were semi- structured recorded interviews, direct observation and registers in diaries and immersion, done in the Blood Center and in the house of some participants. From the interviews, individual narratives and identification of codes were built. For the analysis of data from the narratives, we used an inductive theme analysis. We integrated common and distinct aspects of individual narratives in general aspects classified by units of senses. Results were analyzed and presented based on three narratives: Narrative 1. Importance of knowledge of the disease and treatments for body control with the disease, to which the sense attributed to the knowledge of the disease, medication, effects and complications is body control; Narrative 2. Repercussions of the disease, treatments and complications for life, and the four sub-themes: 2.1 Physical limitations by complications was one of the most highlighted aspects in individual narratives. The sense attributed to these limitations was lack of hope, because they alter all life dimensions. 2.2 Life today and future, participants talk about their difficulties in education and at work and they attribute the sense of life normality, 2.3 Stigma of the disease and prejudice against skin color, in this sub-theme the descriptions and justifications attributed to stigma and prejudice define the senses of personal and social vulnerability, 2.4 Importance of family and religious support, the senses attributed to the participation of family and religion in their lives is emotional support, protection and hope and Narrative 3. Challenges for pregnancy and motherhood, by which we understand that for these women the sense of being a mother is the solidification of the feminine identity, but with the ambiguity between fear and desire. These narratives expose questions that were significant for AF patient in the experience with the disease and treatments, integrating present into past and future. Through stories, the plot of life with the disease and treatments has been built, exposing knowledge, beliefs, values and practices that helped them to deal with situations. The analysis of the narratives centered in the experience of a group of people with SCA, from a cultural system, allowed us to explain how culture influences the disease and treatments, by the senses. This analysis provides knowledge beyond the biomedical model and can be applied in future research and in the work process in health

A Fibrose Cística (FC) é uma doença genética, até o momento incurável, que junto às demais condições crônicas, exigem cuidados que transcendem a esfera biológica da doença e do cuidado e necessita de estratégias inovadoras para seu manejo. Esse estudo teve por objetivo compreender o itinerário terapêutico de crianças com Fibrose Cística, a partir da perspectiva deles próprios. Para tanto, nos apoiamos no quadro teórico e metodológico conformado pela antropologia médica, etnografia e a hermenêutica interpretativa. Participaram do estudo, 7 crianças entre 8 a 10 anos, em tratamento em um hospital escola do interior do estado de São Paulo e seus familiares. Os dados foram coletados por quatro meses com cada criança partindo-se do referencial da etnografia, mediante observação participante, entrevistas e confecções de materiais que permitiram a participação infantil. Os resultados foram compreendidos em três atos interpretativos que conformam o círculo hermenêutico: As várias facetas da Fibrose Cística; Caminhos e cuidados: avaliações sobre o tratamento e Escolhas, caminhos e cuidados: o itinerário terapêutico de crianças com Fibrose Cística. A partir dos resultados, interpretamos que os modelos explicativos existentes na FC atualmente estão circunscritos em círculos concêntricos dentro dos setores e entre os diferentes atores envolvidos gerando avaliações fragmentadas e diferentes possibilidades de tratamento. As interpretações nos levaram a refletir a respeito da hegemonia do paradigma da saúde pautado no positivismo e suas implicações para o cuidado integral. As possibilidades de mudança aparecem ao considerarmos a etnografia e a hermenêutica enquanto referenciais para a prática bem como a centralidade e a potencialidade da criança como agente da mudança. / Cystic Fibrosis (CF) is a genetic disease which, along with other chronic conditions, calls for care that transcends the biological aspects of the disease and requires innovative strategies for its management. The aim of this study was to understand the therapeutic itinerary of children with cystic fibrosis through their point of view. To achieve this, we were supported by theoretical and methodological framework composed by medical anthropology, ethnography and interpretative hermeneutic. The participants were 7 children between the ages of 8 and 10 who were in treatment for CF at a University Hospital in the state of São Paulo and their relatives. Data were obtained during 4 months with each child using the ethnography method through participant observation, interviews and handmade materials that allowed children to participate. The results were understood in 3 interpretative acts that shaped the hermeneutic circle: Plenty faces of Cystic Fibrosis; Paths and care:treatment evaluations and Choices, paths and care: the therapeutic itinerary of children with Cystic Fibrosis. After analyzing the results, we interpreted that the explanatory models currently available in Cystic Fibrosis are limited in circles in the sectors and between the different actors involved what causes fragmented evaluations and different possibilities of treatment. Those interpretations lead us to reflect the hegemony of the health paradigm that is based on positivism and its implication for integral care. The possibilities of change appear when using the ethnography and the hermeneutic theories in the clinical practice and when considering the centrality and the potentiality of the children as transition agents.

The purpose of this study was to assess African American parents’ and caregivers’ perceptions about ADHD, diagnosis, treatment, and outcomes to determine if and/or how those views may affect diagnosis and treatment rates among African American youth. ADHD prevalence is increasing overall in the US across all races/ethnicities, but ADHD diagnosis and treatment rates are still low among African American youth compared to White youth. While African American youth may be more greatly affected by the disorder than White youth, there is a gap in understanding why some parents seek help for their child’s ADHD related behaviors, while others do not. African American parents and primary caregivers of boys ages 5-14 who attended an afterschool program in Harlem, New York City, participated in a cross-sectional design interview study with 43 participants. Transcripts were audio-recorded, transcribed and analyzed using an inductive approach. Highlights of findings included parents’ and caregivers’ discomfort using medication to treat ADHD, concerns about labeling/stigma and misconceptions about ADHD, diagnosis, and treatment. Implications for practice included the need for: disseminating accurate and relevant information, improving understanding about proven and promising non-pharmacological treatment methods and addressing discriminatory practices in ADHD treatment. Recommendations for research include creating and evaluating culturally sensitive treatment approaches, exploring why certain families are misinformed about ADHD, finding effective ways to correct misconceptions, and testing alternative ways to educate healthcare and education professionals on how best to work with African American and other underserved communities.

The thesis examines the complex relationship between individual experiences of breast cancer and the wider social, political and discursive context in which they are located. It focuses on how Spanish women living with breast cancer define their own health priorities by exploring their experiences and their dissatisfactions, which appear to have been excluded from public and biomedical discourses. The data was collected in a provincial city in Western Spain and focused on the lived experiences of 32 women living and surviving breast cancer. Interviews were mainly conducted in the headquarters of the Spanish Association against Cancer of that region, but also at women's homes and in other public spaces. Based upon a framework of narratives of resistance, grounded in feminist theory, critical medical anthropology and sociology, an ethnographic approach allowed a focus on breast cancer patients and survivors as ‘experts' of their own health, addressing fundamental concerns in the production of knowledge. The thesis discusses the relationship between breast cancer and social inequality. It examines the dramatic ways that structures of power such as class, age, gender, and disability, intersect and “conspire” through a web of social beliefs, practices, norms and expectations to shape, and exacerbate, women's experiences of illness, in particular, of those women who need health care the most. The research also highlights the ways in which the experiential symptoms of breast cancer are portrayed and perceived in public and medical discourses in sexual terms or physiological terms, which ignores the wider social and embodied contexts of women's experiences. By answering the call made by feminist writers such as Wilkinson (2001) and Broom (2000) to listening to the narratives of resistance of these Spanish women, this study therefore offers both a particular cultural account of their collaboration with a range of institutions such as health professionals, charities, the family and the social care system, but also valuable lay experiences which are more generally relevant to wider healthcare practice and policy.

The purpose of this thesis is to ethnographically explore the social life of health reform policy. This thesis focuses on the Ponce Center, a safety net HIV clinic in Atlanta. The thesis engages with a fragmented healthcare world, and the inhabitants of these worlds who are charged with rectifying the fragmentation and make care possible. They are, in technical language, service providers, whether they are policy-makers, patients, or political activists. In order to make the healthcare and policy worlds functional, the AIDS community in Atlanta perceive their first task as attempting to connect aspects of the fragmented healthcare assemblage that are otherwise disparate. The core theme of this thesis is articulations, translations, and piecing together aspects of everyday life particularly with regard to various ways of contending with fragmentation. This thesis explores the relationship between the affective, ideological, physical and structural dynamics of inequality, poverty, vulnerability, identity, and a sense of community and belonging. This thesis is about the policy processes. It does not focus on policy-making, but policy interpretation, implementation, and enactment in Atlanta, Georgia. The thesis tracks the appropriation and contestation of the Affordable Care Act (ACA) as a site of interaction between the experience of HIV as a pre-existing condition, inequitable access to treatment through health insurance, and larger social policy and poverty discourses. Finally, it considers the processes by which major policy reforms draw in disparate actors, who are embedded in complex networks of power and resource relations - assemblages - and inevitably play a role in reshaping society.