<p>Even if one is confident that the staff provide the bestpossible treatment, being admitted into hospital is still astressful situation. In recent decades, architecturalresearchers have elaborated on aspects of the patient'sperspective where the design of the physical environment maypositively enhance the healing experience. The emergingunderstanding reveals that this is not an issue to be solvedsimply by decorative design, for it entails the spatialinterpretation and integration of broader and deeper facets ofhuman response, within which suffering, empathy andprofessional care are embraced.</p><p>This thesis elucidates the patients' use of space accordingto their cultural perceptions in two inpatient wards in aregional hospital in northwestern Namibia. The study appliescase study methodology with the focus on the interactionbetween patients, visitors and nursing staff in relation to thephysical environment.</p><p>The theoretical basis within medical anthropologyconceptualises sickness as a cultural event in the dual notionillness and disease, signifying two ways of understandingsickness, the individual and the professional interpretations.The Foucauldian theory on discipline and space suggests thatthe biomedical discipline is spatially represented by themodern hospital, from which aspects of illness areexcluded.</p><p>The results show that circumstances in the physicalenvironment highly influence the patients' illness experienceby possessing certain qualities or by the activities renderedpossible by spatial conditions. The two wards possess manymodern qualities adding to an enclosed and restrictingenvironment. Patients come from a culturally dynamic andchanging context where new approaches to healthcare andhospital physical space are generated. Whereas patients haveintegrated hospital-based biomedicine as a medical alternative,modern hospital space cannot accommodate certain patient needs.Patients, visitors and nursing staff negotiate space in orderto overcome spatial weaknesses. Family members' overnightaccommodation in the hospital, as well as their voluntarycontribution to patient care, are two important aspects whichare not spatially incorporated.</p><p>An alternative ward design is suggested in which patients'and family members' active participation in the healing processis encouraged, with support from the nursing staff. The higherflexibility the design offers caters for the spatialintegration of future hybrid processes.</p>

Submitted by Maria Creuza Silva (mariakreuza@yahoo.com.br) on 2014-10-03T18:02:20Z No. of bitstreams: 1 TESE YEIMI ALZATE LOPEZ. 2014.pdf: 1273705 bytes, checksum: ff739cf53b4a176758fd9e9cf081c526 (MD5) / Approved for entry into archive by Maria Creuza Silva (mariakreuza@yahoo.com.br) on 2014-10-07T13:54:41Z (GMT) No. of bitstreams: 1 TESE YEIMI ALZATE LOPEZ. 2014.pdf: 1273705 bytes, checksum: ff739cf53b4a176758fd9e9cf081c526 (MD5) / Made available in DSpace on 2014-10-07T13:54:41Z (GMT). No. of bitstreams: 1 TESE YEIMI ALZATE LOPEZ. 2014.pdf: 1273705 bytes, checksum: ff739cf53b4a176758fd9e9cf081c526 (MD5) / Estudos sócio-antropológicos que abordam experiências e repercussões das doenças crônicas têm apontado o caráter heterogêneo das contingências da vida cotidiana no enfrentamento da doença por parte dos sujeitos e os complexos processos de busca de cuidado para resolver seus problemas. No caso do câncer, a sua construção sociocultural envolve o status de doença maligna, assim como uma doença que ameaça a vida, o que se coloca nas experiências dos pacientes como fonte de incerteza, medo e estigmas. No caso específico da Leucemia Mieloide Crônica (LMC), o conhecimento da sua patogênese (mas não da sua etiologia) e os desenvolvimentos tecnológicos recentes em tratamentos têm levado a uma reconstrução do discurso científico biomédico, mudando a forma de conotá-la, denotá-la, explicá-la e tratá-la como uma forma diferenciada de outros tipos de leucemia e de câncer. A fase crônica da LMC, há pouco mais de uma década, tinha uma duração estimada de três a seis anos, seguida pela transformação para as fases acelerada e blástica de curta duração, estimadas entre 3 a 6 meses (Kantarjian, et.al. 1993, 2002), colocando um panorama de mortalidade alcançada em pouco tempo. Devido ao desenvolvimento de medicamentos conhecidos como Inibidores de Tirosino Quinase (ITK), substância importante na progressão da célula leucêmica, a LMC é reconhecida na atualidade como uma “mudança de paradigma” no tratamento da Leucemia e do câncer (Goldman & Melo, 2003; Stephen et.al., 2003, Souza e Pagnano, 2004, Rüdiger, et.al, 2007). Estes medicamentos têm alcançado o controle e remissões duradouras da doença na fase crônica, que só tinham sido alcançados através do Transplante de Medula Óssea (TMO) (Schiffer et.al. 2007, Jabbour, et.al. 2007, Lopes et.al. 2009). Este panorama tem redefinido os protocolos de tratamento, colocando o TMO (e observando suas taxas de mortalidade) como tratamento de segunda ou terceira linha em caso de resistência aos ITK, mas continua sendo considerada a única terapia de cura da LMC (Rüdiger, et.al, 2007, Aranha, 2008). Alguns estudos recentes apontam para a possibilidade de “cura” a partir do tratamento continuado com os ITK, porém a suspensão do tratamento só é recomendado sob certa condições e com um monitoramento e controle citogenético e molecular constante (Branford, 2012; Jabbour, et.al, 2013). Esse contexto permite evidenciar uma reconstrução constante do discurso (e práticas) biomédico da doença, a partir de novas descobertas científicas e tecnológicas, gerando velhas e novas incertezas, ambiguidades e significados da “cronicidade da LMC”, assim como coloca as diferentes práticas de cuidado, nas quais se ressaltam, especialmente, as “trilhas” e barreiras de acesso dos pacientes a atenção e medicamentos. O objetivo geral dessa pesquisa foi o de analisar e interpretar as experiências de enfermidade e os itinerários terapêuticos de dez (10) portadores de Leucemia Mieloide Crônica (LMC), nas cidades de Medellín, Colômbia e Salvador – BA, Brasil. Para compreender o fenômeno estudado, foi realizado um metaestudo da literatura qualitativa nacional e internacional sobre a categoria Itinerários Terapêuticos (IT) e sua articulação com a categoria experiência de enfermidade (Artigo 1). Ao realizar essa meta-análise e síntese das teorias, métodos e dados produzidos pelas pesquisas, foi possível discutir sobre as correntes teórico-metodológicas, limites, alcances e dimensões que esta categoria permite para a abordagem e compreensão dos diferentes e complexos processos de escolha, avaliação e aderência a certos tipos de cuidados e tratamentos por parte dos sujeitos. Na sequência, foi realizada a interpretação das experiências de enfermidade de sujeitos da Colômbia e do Brasil (Artigo 2) assim como a análise da construção dos itinerários terapêuticos dos sujeitos na busca de cuidados (Artigo 3). Em ambos os artigos empíricos utilizou-se a estratégia metodológica do estudo de casos coletivos. O interesse num grupo (limitado) de casos, mais do que um caso individual, coloca a ênfase menos em “generalizações” a partir dos casos (Stake 2007) e mais na compreensão da unicidade de cada caso, sem perder a riqueza das suas particularidades e diferenças, mas também das semelhanças que com certeza aparecem para os leitores durante a análise. No total, foram incluídos dez (10) casos (5 de Medellín e 5 de Salvador), seguindo os seguintes critérios: mulheres e homens de idades entre 30 e 80 anos, com um tempo de diagnóstico da doença de no mínimo um ano, em fase crônica; ser usuários dos sistemas de saúde público ou privado e receber atendimento em diferentes instituições. Os critérios escolhidos não pretendiam incluir casos típicos ou atípicos (Yin, 2013), mas sim, casos “representativos” que, de alguma forma, informavam dimensões trazidas por outros pacientes. Como resultados, no artigo 2 se apresentam as diferentes dimensões das experiências de enfermidade dos casos analisados, apresentando fenômenos como a ruptura biográfica causada pela doença, os complexos processos de “incorporação” do social nas suas experiências. A análise de cada caso permitiu evidenciar um processo no qual as mudanças nas experiências podem avançar de uma fase, na qual prevalece os sentidos de morte, sofrimento, desconstrução e rupturas (das relações sociais, do cotidiano etc.), para outra, quando vai se apresentando um processo de normalização (Bury, 1982), onde se coloca, em alguns casos, sentidos positivos, ambiguidades e incertezas sobre as mudanças e o aprendizado que a LMC traz para suas vidas. As narrativas apontaram para um desconhecimento geral” sobre a LMC e a leucemia como tal, colocando a questão levantada por Comaroff e Maguire (1981) sobre as implicações sociais dos avanços tecnológicos para o tratamento da leucemia que ficam no terreno do conhecimento científico e médico. Isto leva os pacientes e seus familiares a se confrontarem com as ambiguidades e incertezas apontados nos sentidos do “controle” e de “risco”. Ao seguir a construção do IT dos sujeitos, no artigo 3, se apresenta a análise dos casos em cada contexto evidenciando sua influência no percurso que se inicia desde a “descoberta” de uma alteração até depois de conseguir o “controle” da doença. Assim, o processo de diagnóstico permite discutir como uma condição “grave” às vezes não é percebida pelos pacientes, mas sim pela sua rede social, que é quem os leva à procura da consulta especializada. O acesso à atenção no nível terciário (alta complexidade) permite, em ambos os contextos, discutir os modelos de atenção, as falhas nos serviços de saúde, as diversas fragmentações dos sistemas que levam os pacientes e suas famílias por diversas peregrinações, barreiras, burocracias, colocando processos que foram concebidos como “causas estruturais do sofrimento”. / Socio-anthropological studies that discuss experiences and the impact of chronic diseases have shown the heterogeneous character of the everyday life’s contingencies in the coping with the illness by the subjects and the complex processes of searching for care to solve their problems. In the case of cancer, its sociocultural construction involves the status of malignant disease, as well as a life-threatening disease, which is placed on the experiences of patients as a source of uncertainty, fear and stigma. In the specific case of Chronic Myeloid Leukemia (CML), the knowledge of its pathogenesis (but not its etiology) and recent technological developments in treatment have led to a reconstruction of the biomedical scientific discourse, changing the way it connotes, denote it, explain it and treat it as a different way from other types of leukemia and cancer. The chronic phase of CML, a little over a decade, had an estimated duration of three to six years, followed by transformation to the phases accelerated and blastic of short duration, estimated between 3 to 6 months (Kantarjian, et.al. 1993 , 2002), placing a panorama of mortality achieved in a short time. Due to the drugs’ development known as Tyrosine Kinase Inhibitors (ITK), an important substance in the progression of leukemic cells, CML is recognized today as a “paradigm shift” in the treatment of leukemia and cancer (Goldman & Melo, 2003; Stephen et.al., 2003 and Souza Pagnano, 2004 Rüdiger, et.al, 2007). These medications have gained control and durable remissions in the chronic phase of the disease, which had only been achieved through Bone Marrow Transplantation (BMT) (Schiffer et.al. 2007 Jabbour, et.al., 2007, Lopes et.al. 2009). This overview has redefined the treatment protocols, putting BMT (and watching their mortality rates) as treatment for second or third line in case of resistance to ITK, but still considered the only healing therapy of CML (Rüdiger et. Al, 2007 Spider, 2008). Some recent studies point to the possibility of “cure” from continuing with ITK treatment, but treatment discontinuation is recommended only under certain conditions and with a monitoring and constant control cytogenetic and molecular (Branford, 2012; Jabbour, et. Al, 2013). This context will show a constant discourse’s reconstruction (and practice) of biomedical disease, from new scientific and technological findings, generating old and new uncertainties, ambiguities and meanings of “chronic CML”, and puts the different care practices, in which they point out, especially the “trails” and barriers to patient access to care and medications. The overall objective of this research was to analyze and interpret the experiences of illness and therapeutic itineraries of ten (10) patients with Chronic Myeloid Leukemia (CML) in the cities of Medellín, Colombia, and Salvador – BA, Brazil. To understand the phenomenon studied, a national and international qualitative literature’s meta-analisys on Therapeutic Itineraries (IT) category and its articulation with the experience of illness category (Article 1) was performed. In performing this meta-analysis and synthesis of theories, methods and data produced by researches, it was possible to discuss the theoretical and methodological perspectives, limits, scope and dimensions that this category allows for this approach and understanding of different and complex processes of choice, evaluation and adherence to certain types of care and treatment by subjects. Following on, the interpretation of the subjects’s illness experiences from Colombia and Brazil (Article 2) as well as the analysis of the construction of subjects’s therapeutic itineraries in seeking care (Article 3) was performed. In both empirical articles, it was used the methodological approach of the collective cases’s study. The interest in a group (limited) cases, more than one individual case, the emphasis is less on “generalizations” from the cases (Stake 2007) and more on understanding the uniqueness of each case, without losing the richness of its particularities and differences, but also the similarities that certainly appear to readers during analysis. Were included in the total ten (10) cases (5 of 5 Medellin and Salvador), using the following criteria: women and men aged 30 to 80, with disease time of diagnosis, at least, one year in chronic phase; be users of public or private health systems and receive care in different institutions. The criteria chosen did not intend to include typical or atypical cases (Yin, 2013), but “representative” cases that, somehow, informed dimensions brought by other patients. As a result, Article 2 present the different dimensions of the illness experience of the cases analyzed, presenting the phenomena such as biographical disruption caused by the disease, the complex processes of “incorporation” of the social in their experiences. The analysis of each case has highlighted a process where changes in the experiences can move from one phase, in which prevails senses of death, suffering, and deconstruction and ruptures (social relations, everyday etc..), to another, when it is being presented a standardization process (Bury, 1982), which arises, in some cases, positive way, ambiguities and uncertainties about changes and learning that the LMC brings to their lives. The narratives indicated a “general unknown” of CML leukemia, putting the issue raised by Comaroff and Maguire (1981) on the social implications of technological advances for the treatment of leukemia that are in the field of scientific and medical knowledge. This faces to patients and their families to the ambiguities and uncertainties indicated in the directions of the “control” and “risk”. By following the construction of IT’s subjects, in Article 3, presents the analysis of cases in each context highlighting its influence on the path that begins from the “discovery” of a change until after getting the “control” of the disease. Thus, the diagnosis’s process allows discuss how a “serious” condition is sometimes not perceived by patients, but by their social network, which is who leads them to search for specialized consultation. The access to care at the tertiary level (high complexity) enables, in both contexts, discuss the models of care, the failures in the health services, the various systems’s fragmentations that lead patients and their families for several pilgrimages, barriers, bureaucracies, putting processes that were designed as “structural causes of suffering”.

The overall aim of this thesis was to increase our understanding and knowledge of patients’ experiences of living with multiple sclerosis (MS). A mixed-method design was used, including both qualitative and quantitative methods. Thirty-one immunologically treated MS patients were randomly selected and matched with patients without immunological treatment. Matching criteria were gender, impairment, time since diagnosis and age. One patient dropped out and therefore the final sample consisted of 61 patients. All 61 were interviewed (Studies I, III and IV) and completed the 36-item Short Form health survey questionnaire (SF-36), the Subjective estimation of Quality of Life questionnaire (SQoL), the Self-reported Impairment Check-list (SIC) (Study II) and the Montgomery–Asberg Depression Rating Scale questionnaire (MADRS) (Study III). The interviews were subjected to content analysis. Initial symptoms and being diagnosed with MS were described in terms of becoming vulnerable and remaining in that vulnerability long after the diagnosis. Eventually the patients were able to manage this emotional distress and acquired strength in their illness situation (Study I). In the matched analysis, 29 pairs of patients were included after internal drop-out. There were no statistically significant differences between the treatment and control groups. Concerning the total group of 61 patients, the self-reported impairment check-list showed that they had various problems of impairment, most evident in balance and walking. The score on health-related quality of life (SF-36) was reduced, disclosing a negative influence on vitality, physical role and function. However, subjective quality of life (SQoL) was not reduced, showing that the patients estimated their well-being to be quite unaffected (Study II). Thirty-eight of the 61 patients (62%) experienced chronic sorrow (Study III). The group were not depressed in general, only four having mild symptoms of depression, revealing that chronic sorrow is a particular form of emotional distress in MS. Chronic sorrow was experienced in terms of loss of hope, loss of control over the body and loss of integrity and dignity. When the patients could not adequately manage their sorrow and lacked support, they were struggling with their vulnerability. In the successful management of MS, losses and emotional distress are managed in such a way as to enhance personal growth, appreciation and trust in life. The theoretical model of chronic sorrow facilitated the sorting of the empirical data and the linking of these data to theory, showing the usefulness of the model (Study IV).

Abstract This study explores women’s conceptions and experiences of heart disease in Kainuu, Finland through illness narratives. Conventionally, coronary heart disease has been considered a male disease. However, many women suffer from heart disease, but their illness experiences have called relatively little attention. This PhD study, which falls under the field of medical anthropology, looks at experiences and illness conceptions women attach to heart disease. The research material consists of 15 women’s narrative interviews collected during 2004–2005. The theoretical–methodological framework in this study employed cognitive anthropology and narrative research, and the two main concepts of the study are biographical disruption and cultural model. The analysis was performed by applying two reading methods: a holistically-oriented and a content-oriented method. The holistic exploration focused on biographical disruption and its effects. The disruption experienced due to illness varied between interviewees depending on the stage of their illness and their life situation. The content-oriented reading method was utilized to explore the conceptions and explanations of heart disease and to identify cultural explanatory models present in the research material. Four main cultural explanatory models were identified, which were titled “the inheritance model”, “the mental model”, “the food model” and “the character model”. The inheritance model presented genetic and hereditary explanations, while the mental model introduced different mental factors, such as pressure and stress. The food model emphasized factors related to food and eating and finally, the character model introduced characterizations of heart disease. The present study increases our understanding of heart disease experience from women’s point of view. / Tiivistelmä Tässä tutkimuksessa tarkasteltiin kainuulaisnaisten sepelvaltimotautikokemuksia ja -käsityksiä heidän kertomuksistaan käsin. Sepelvaltimotauti on pitkään mielletty miesten sairaudeksi. Useat naiset kuitenkin sairastavat sepelvaltimotautia, mutta heidän sairauskokemuksensa ovat saaneet vain vähän huomiota. Lääketieteellisen antropologian erityisalaan kuuluvan tutkimuksen pääasiallinen aineisto koostuu 15 kainuulaisnaisen kerronnallisesta haastattelusta, jotka tehtiin vuosina 2004–2005. Haastatteluaineiston avulla selvitettiin sepelvaltimotautiin liittyviä sairauskokemuksia ja -käsityksiä. Tutkimuksen teoreettismetodologisessa viitekehyksessä hyödynnettiin kognitiivista antropologiaa ja narratiivitutkimusta. Tutkimuksen kaksi keskeisintä käsitettä ovat kulttuurimalli ja elämäkerrallinen katkos. Aineiston käsittelyssä ja analysoinnissa sovellettiin kahta lukutapaa, joista toisessa keskityttiin kertomuksiin kokonaisuuksina ja toisessa tarkemmin haastattelukertomusten sisältöön. Kertomusten holistisessa tarkastelussa keskityttiin sairastumiseen ja sen vaikutuksiin elämäkerrallisen katkoksen käsitettä käyttäen. Sairauden aikaansaama katkos ilmeni eri tavoin tutkimukseen osallistuneen sairauden vaiheesta ja elämäntilanteesta riippuen. Sepelvaltimotautikäsitysten ja -selitysten tarkastelussa käytettiin sisältöön keskittyvää lukutapaa, jonka avulla hahmoteltiin sepelvaltimotaudin kulttuurisia selitysmalleja. Sepelvaltimotaudin pääasiallisia kulttuurisia selitysmalleja nousi esiin neljä, jotka nimettiin periytyvyysmalliksi, henkiseksi malliksi, ravitsemusmalliksi ja luonnemalliksi. Periytyvyysmallissa sepelvaltimotautia ja siihen sairastumista selitettiin taudin periytyvyydellä ja geneettisillä tekijöillä. Henkisen mallin yhteydessä korostuivat erilaiset mentaaliset tautiin vaikuttaneet tekijät, kuten henkiset paineet ja stressi. Ravitsemusmallin yhteydessä korostuivat erilaiset ruokaan ja syömiseen liittyvät tekijät. Luonnemallin yhteydessä esille nousivat erilaiset sepelvaltimotautia luonnehtivat selitykset. Tutkimuksessa tuotetaan naisnäkökulmaista tietoa ja ymmärrystä sepelvaltimotaudin sairauskokemuksista.

Eleven participants living with non-insulin-requiring Type 2 Diabetes (T2DM) discussed their self-monitoring blood glucose (SMBG) experience. All had been recently diagnosed (< 2 years) and treated for diabetes with a self-regulating SMBG guideline for primary care practice. Their digitally-recorded interviews and photographed logbooks were analyzed thematically and interpreted through the lens of numeracy literature to answer 2 questions: 1. What is the meaning of SMBG among people with non-insulinrequiring T2DM? 2. How do people with non-insulin-requiring T2DM perceive the function of SMBG in diabetes self-management? The meanings of SMBG were patient competence, "It is easy, just a little pin prick"; patient control, "I can control it. It doesn't control me"; and patient security, "It is not that way anymore." Three periods of lived time were observed: Diagnosis "The numbers say I have diabetes"; "I just can't figure out why it does that"; and Routine "I make my numbers." Prominent numeracy functions emerged by time period. During Diagnosis primary numeracy functions included comparing SMBG results to target values. Participants expressed this experience as, "I am some kind of O.K." During applied numeracy functions included taking medication correctly. SMBG readings were experienced as a clue to the diabetes mystery, sometimes confusing the participants, "I just don't know why it does what it does," or answering questions, "Now there is no question marks." Numbers motivated some people for action "The numbers get me out a walking" or restraint "If I didn't have the numbers, I would be tempted to cheat." During Routine interpretive numeracy functioned to aid the evaluation of the efficacy of participant's health behavior change. Numbers had taken on meaning helping a person to "know where I am at." Clinical implications are suggested including adjustments to the selfregulating SMBG guideline for primary care practice. Findings are discussed in relation to personal knowledge processes (Sweeny, 1994) and related SMBG research. Participants concluded that routine SMBG is essential to maintaining and restraining health behavior. This study provides a model for use of SMBG in diabetes selfmanagement and patient perspectives on SMBG during the 2 years following T2DM diagnosis.

Diagnosis of Alzheimer’s disease is encouraged as a first step towards people planning for their future with the condition. Despite the proposed benefits of diagnosis, it is also widely recognised that Alzheimer’s disease can expose people to stigma. Therefore, this thesis explores the relationship between stigma and future outlook, from the perspective of people affected by early and late-onset Alzheimer’s disease. In order to recognise the physicality of the condition and how psychological and social factors influence experiences, a biopsychosocial perspective is employed throughout. People with Alzheimer’s disease (n=15 people with late-onset, 7 people with early-onset) and their supporters (n=22) completed questionnaires about perceived stigma. This was followed by 14 interviews with a subsample of participants, which explored stigma and future outlook in more depth. Perceived stigma reporting across participants was low in the questionnaires; whereas interviews revealed higher levels of stigma with people discussing mixed, unpredictable reactions from a range of sources. Participants expressed awareness of the unpredictable nature of their futures with the condition. The subsequent lack of control was managed through focusing on ‘one day at a time’ and avoiding looking too far ahead. Across reflections on stigma and future outlook there was a deliberate focus on positive experiences for people affected by early and late-onset Alzheimer’s disease. The similar management of experiences across participants minimised possible age-based differences. These findings are supported by socioemotional selectivity theory, which suggests people are motivated to maintain positive emotional states when facing ‘time-limiting’ conditions irrespective of age. The research suggests people’s experiences of stigma and future outlook interact, with stigma-driven assumptions about the future affecting how people manage their daily lives. The avoidance of looking ahead suggests that policy which encourages future planning should consider its utility and explore ways of helping people to manage both exposure to stigma, and planning for the future, whilst focusing on daily living.

No description available.