Chronicity and the patient's decision-making work. The case of an advanced cancer patient.

This paper focuses on the particular situation of an advanced cancer patient whose condition has taken a chronic turn. We argue that chronicity of this kind sometimes falls at the frontier of Evidence Based Medicine because the uncertainty about the patient's condition can lead physicians to resort to clinical trials or non-licensed drugs to prevent the disease from progressing. This situation leaves plenty of scope for individual adjustments between patients and their doctors. Advanced cancer is regarded here not just as a biological event but as a chronic illness and a 'negotiated reality'. We argue that the chronicity of advanced cancer patients' situation broadens the patients' scope for 'work', and we have called this specific type of patient's work 'decision-making work'. This paper is based on a case study focusing on Patrick, a middle-aged Frenchman with metastatic lung cancer who underwent oncological treatment for seven years and was strongly determined to find new therapeutic options even if this meant having to go abroad. He actively orchestrated his therapeutic itinerary by reorganising his relationships with the medical world and coordinating the physicians' work. His particular social position enabled Patrick to bypass some of the current medical rules and to reorganise the usual pattern of distribution of medical responsibilities. The chronicity of his condition placed him at the very frontier of the health care system.

A Qualitative Study of Transitions Between Health Care Settings After Injury in Cameroon.

BACKGROUND: Populations in Cameroon, a lower middle-income country in Central Africa, have a higher than average burden of traumatic injury, suffer from more severe injuries, and face substantial barriers to accessing formal health care services after injury. The aim of this study was to identify and describe how recently injured Cameroonians use and adapt the formal and informal medical systems and what motivates these transitions. MATERIALS AND METHODS: Recently injured people or their surrogates residing in Southwest Region, Cameroon, were recruited from a larger community-based survey on injury. Semistructured interviews were conducted with 39 recently injured persons or their adult family members. Interviews were recorded, transcribed, and iteratively coded to identify major themes. RESULTS: Most injured persons had complex therapeutic itineraries involving one or more transitions, and nine of 35 injured persons used formal care exclusively. Transitions away from formal care were driven by (1) anticipated costs beyond means, (2) unacceptable length of proposed treatment, (3) poorly supported referrals, (4) dissatisfaction with treatment progress or outcome, and (5) belief that traditional methods work additively with formal care. Factors motivating people to engage with formal care included (1) perceived high value of care for cost, (2) desire for reliable diagnostic tests, (3) social support during hospitalization, and (4) financial support from family or a stranger responsible for the injury. CONCLUSIONS: These results highlight specific opportunities to improve engagement in formal care after injury and better support injured Cameroonians through the strengthening of the formal care referral process and health financing organization.

Therapeutic itinerary of children living with epilepsy in Kinshasa: Features, determinants, and relationships with behavioral problems and cognitive impairment.

BACKGROUND: Epilepsy mostly affects children in sub-Saharan Africa. However, little is known about the therapeutic itinerary of these children living with epilepsy (CWE). This study aimed to describe the therapeutic itinerary of CWE in Kinshasa and to analyze its relationships with clinical features, behavioral problems, and cognitive impairment. METHODS: This hospital-based study has included 104 CWE aged 6 to 17  years. The features of their therapeutic itinerary and their relationship with clinical features, behavioral problems, and cognitive impairment were analyzed. RESULTS: The vast majority of CWE (87%) has started their therapeutic itinerary by the Western medicine. The first source of information about epilepsy as well as the type of antiepileptic treatment varied with the socioeconomic status of families of CWE. The total duration of the therapeutic itinerary was shorter for the CWE who were living with both their parents (P = .038), who had generalized seizures (P = .0073) or who had no family history of epileptic seizures (P = .019). The CWE who had total behavioral problem, compared with the others, were putting more time (P = .021) to reach the Centre de Santé Mentale Telema (CSMT) after the suspicion or the diagnostic of epilepsy. The total duration of CWE who had cognitive impairment (P = .021) was longer than that of CWE who had not cognitive impairment. CONCLUSION: The therapeutic itinerary of CWE in Kinshasa began with Western medicine. The remainder of this therapeutic itinerary looks like what is described in sub-Saharan literature with the majority of CWE seeking the healing based on beliefs. This study also shows that the therapeutic itinerary of CWE was associated with socioeconomic conditions, clinical features, behavioral problems, and cognitive impairment.

Patients pathways to tuberculosis diagnosis and treatment in a fragmented health system: a qualitative study from a south Indian district.

BACKGROUND: India's Revised National Tuberculosis (TB) Control Programme (RNTCP) offers free TB diagnosis and treatment. But more than 50% of TB patients seek care from private practitioners (PPs), where TB is managed sub-optimally. In India, there is dearth of studies capturing experiences of TB patients when they navigate through health facilities to seek care. Also, there is less information available on how PPs make decisions to refer TB cases to RNTCP. We conducted this study to understand the factors influencing TB patient's therapeutic itineraries to RNTCP and PP's cross referral practices linked to RNTCP. METHODS: We conducted in-depth interviews on a purposive sample of 33 TB patients and 38 PPs. Patients were categorised into three groups: those who reached RNTCP directly, those who were referred by PPs to RNTCP and patients who took DOT from PPs. We assessed patient's experiences in each category and documented their journey from initial symptoms until they reached RNTCP, where they were diagnosed and started on treatment. PPs were categorised into three groups based on their TB case referrals to RNTCP: actively-referring, minimally-referring and non-referring. RESULTS: Patients had limited awareness about TB. Patients switched from one provider to the other, since their symptoms were not relieved. A first group of patients, self-medicated by purchasing get rid drugs from private chemists over the counter, before seeking care. A second group sought care from government facilities and had simple itineraries. A third group who sought care from PPs, switched concurrently and/or iteratively from public and private providers in search for relief of symptoms causing important diagnostic delays. Eventually all patients reached RNTCP, diagnosed and started on treatment. PP's cross-referral practices were influenced by patient's paying capacity, familiarity with RNTCP, kickbacks from private labs and chemists, and even to get rid of TB patients. These trade-offs by PPs complicated patient's itineraries to RNTCP. CONCLUSIONS: India aims to achieve universal health care for TB. Our study findings help RNTCP to develop initiatives to promote early detection of TB, by involving PPs and private chemists and establish effective referral systems from private sectors to RNTCP.

Trajectories of Cancer Care in Latin America: A Scope Review: Trayectorias de atención al cáncer en América Latina. Una revisión de alcance.

OBJECTIVES: In recent decades there has been a development of research on cancer care trajectories in Latin America; however, the diversity of theoretical-methodological uses of this approach can be confusing and difficult for the academic and professional community to use. To analyze studies that have been carried out in Latin America on cancer care trajectories to propose a typology of the approaches developed and synthesize key findings. METHODS: A scope review of studies published in journals indexed in PubMed, LILACS, and SciELO databases in the period 2006-2021 was conducted. RESULTS: 22 articles were analyzed. A typology of descriptive, evaluative, and interpretative approaches was proposed. From the key findings, the following were identified: the importance of pleasure and the feeling of power in the development of risky practices; the role of popular explanatory models for the identification of abnormality and the search for attention; the interaction of various personal, interpersonal, organizational, and structural barriers that limited timely diagnosis and continuity of treatment; the sequential or parallel use of different forms of care, public and private; and the importance of social support networks. CONCLUSIONS: The proposed typology clarifies the different uses of the approach. The informative synthesis evidences problematic knots regarding multiple barriers to access and allows us to propose as priorities in future research the study of types of cancer, stages, and populations that have been scarcely addressed, as well as the diversification of methodological approaches.

Therapeutic Itineraries during the Ebola Epidemic in the Democratic Republic of Congo.

While treating a disease, patients or their relatives make decisions to pursue different therapeutic options, and various stages are involved in searching for a cure. This paper explored the pattern of health-seeking in the Democratic Republic of Congo (DRC) during the 10th Ebola virus disease (EVD) outbreak. Eight hundred randomly selected adults were surveyed using a questionnaire. Qualitative data were also collected through in-depth interviews with 17 community leaders and 20 focus group discussions with community members. The results showed that modern healthcare facilities are not usually considered the first option for treatment. The therapeutic journey generally begins with the patients, who treat themselves based on the what they know about the disease and the resources they have at their disposal. However, if the disease is not cured through self-medication, then patients or their relatives will visit a pharmacy. Patients request medication they know to be effective in treating the disease, and relatives can also assist in obtaining medication in the case of immobile patients. Pharmacies commonly sell the medication to patients or their relatives without a medical prescription.

Itinerários terapêuticos de pessoas hospitalizadas por covid-19 no SUS: um estudo quantiqualitativo no Distrito Federal / Therapeutic itineraries of people hospitalized for COVID-19 in the SUS: quantitative and qualitative study in the Federal District

RESUMO Os estudos sobre itinerários terapêuticos revelam modelos de cuidado e decisões tomadas pelas pessoas em situações de adoecimento e podem contribuir para o planejamento de políticas e serviços de saúde mais efetivos, especialmente em emergências como a pandemia de covid-19. O objetivo desta pesquisa foi descrever os itinerários terapêuticos de pacientes hospitalizados por covid-19 em um hospital público do Distrito Federal e explorar associações com determinantes sociais da saúde. Trata-se de um estudo de caso integrado, com triangulação de evidências quantitativas e qualitativas obtidas a partir da análise do banco de dados de um estudo observacional transversal com 233 adultos internados entre maio/2020 e dezembro/2021. A maioria homens, idosos, pretos ou pardos, com baixo nível de renda e escolaridade e múltiplas comorbidades, que procuraram atendimento na atenção especializada e conseguiram acesso rápido ao sistema de saúde. Os fatores que influenciaram a escolha do primeiro serviço foram: ocupação, região de moradia, classe econômica e escolaridade. Já os determinantes da facilidade de acesso foram: tipo de serviço buscado primeiro, gravidade do caso e contexto socioeconômico. Os resultados confirmam a influência de determinantes sociais nas experiências de adoecimento e podem subsidiar reflexões relacionadas à organização do acesso ao SUS em emergências sanitárias.

ABSTRACT Studies on therapeutic itineraries reveal models of care and decisions taken by people in situations of illness and can contribute to the planning of effective health policies and services, especially in emergencies such as the COVID-19 pandemic. The aim of this research was to describe the itineraries of patients hospitalized for COVID-19 in a public hospital in the Federal District and explore associations with social determinants of health. This is an integrated case study, with triangulation of quantitative and qualitative evidence obtained from the analysis of raw data from a cross-sectional observational study with 233 adults hospitalized between May/2020 and December/2021. The majority were men, elderly, black or brown, with low income and education levels and multiple comorbidities, who sought care in specialized care and obtained quick access to the health system. The factors that influenced the choice of the first service sought were: occupation, region of residence, economic class and education. The determinants of ease of access were: type of service first sought, severity of the case and socioeconomic context. The results confirm the influence of social determinants on illness experiences and can support reflections related to the organization of access to the SUS in health emergencies.

Hegemonía en el pluralismo médico: articulaciones y relaciones en la atención, un estudio de caso / Hegemony in medical pluralism: articulations and relationships in care, a case study / Hegemonia no pluralismo médico: articulações e relações no atendimento, um estudo de caso

Este estudio tiene como objetivo describir y analizar el pluralismo médico y el tipo de relaciones de hegemonía-subalternidad entre diversas formas o saberes de atención, que se desarrollaron en el itinerario terapéutico de una padeciente de glaucoma, para mostrar el proceso articulatorio y transaccional entre distintos recursos terapéuticos, así como comprender qué elementos estructurales configuraron el itinerario y la elección terapéutica. La investigación es cualitativa, un estudio de caso en el cual se utilizó el enfoque narrativo. Para la reconstrucción de la narrativa se realizó una entrevista semiestructurada, dirigida por una guía temática previamente determinada por un conjunto de categorías apriorísticas, para posteriormente transcribir la entrevista y realizar un proceso de triangulación hermenéutica. Los resultados mostraron, en este caso, que la hegemonía en el pluralismo médico se constituyó mediante relaciones de equivalencia, así, la padeciente sustituyó el uso de medicamentos farmacológicos por terapias de medicina alternativa, no obstante, el proceso relacional de equivalencia se desarrolló en un contexto de significación biomédica, en el cual tratar o controlar la presión intraocular fue la premisa del remplazo. Asimismo, los procesos que desencadenaron la presencia de relaciones hegemónicas se constituyeron por diversos factores sociales, culturales y económicos como el desempleo, la seguridad social y el género, que desempeñaron un papel fundamental durante la búsqueda de la atención y del cuidado.

This study aims to describe and analyze the medical pluralism and the type of hegemony-subordination relation between forms of care or knowledge in the treatment of a patient with glaucoma to show the articulatory and transactional process between several therapeutic resources and understand which structural elements shaped the treatment itinerary and option. This is a qualitative research that used a narrative case study. To reconstruct the narrative, a semi-structured interview was conducted based on a thematic script previously established by a set of a priori categories to later transcribe the data and perform hermeneutic triangulation. Results showed that the hegemony in medical pluralism was based on equivalence relations, so that the patient replaced the use of pharmacological drugs with alternative medicine treatments. However, the relational process of equivalence developed itself in a context of biomedical significance, in which the treatment or control of intraocular pressure configured the substitution premise. Thus, the processes that triggered the hegemonic relations were constituted by various social, cultural, and economic factors such as unemployment, social security, and gender, which played a fundamental role during the search for care.

Este estudo visa descrever e analisar o pluralismo médico e o tipo de relação de hegemonia-subalternidade entre diversas formas de atendimento ou conhecimentos, que ocorreram no tratamento de um paciente com glaucoma, com a finalidade de mostrar o processo articulatório e transacional entre diferentes recursos terapêuticos, bem como entender quais elementos estruturais moldaram o itinerário e a opção de tratamento. Trata-se de uma pesquisa qualitativa, que utilizou um estudo de caso com abordagem narrativa. Para a reconstrução da narrativa, foi realizada uma entrevista semiestruturada, com base em um roteiro temático previamente estabelecido por um conjunto de categorias a priori, para posteriormente transcrever os dados e realizar a triangulação hermenêutica. Os resultados mostraram que a hegemonia no pluralismo médico esteve baseada em relações de equivalência, de modo que o paciente substituiu o uso de medicamentos farmacológicos por tratamentos da medicina alternativa; no entanto, o processo relacional de equivalência desenvolveu-se em um contexto de significância biomédica, na qual o tratamento ou controle da pressão intraocular foi a premissa para a substituição. Desse modo, os processos que desencadearam a presença de relações hegemônicas foram constituídos por fatores sociais, culturais e econômicos diversos como desemprego, previdência social e gênero, os quais tiveram papel fundamental durante a busca por atendimento e cuidado.

No caminho da Estratégia da Saúde da Família: itinerário terapêutico das trabalhadoras rurais durante a pandemia de covid-19 / On the way to the Family Health Strategic: therapeutic program for rural workers during the COVID-19 pandemic

Resumo Este artigo teve como objetivo descrever o itinerário terapêutico das trabalhadoras rurais durante a pandemia de covid-19. Realizou-se um estudo qualitativo por meio da metodologia da história oral temática. Foram realizadas 15 entrevistas com trabalhadoras rurais pertencentes ao território da Estratégia da Saúde da Família (ESF) de um distrito municipal do interior de Minas Gerais. As narrativas foram submetidas à análise de conteúdo proposta por Bardin. Os resultados apontaram duas categorias: "Um caminho a percorrer: desvelando o contexto e a organização da ESF no território"; e "Entre medo e (des)atenção à saúde: visibilidade para as trajetórias das trabalhadoras rurais durante a pandemia de covid-19". Na primeira categoria, revelou-se o itinerário terapêutico das trabalhadoras rurais para a busca de cuidados na ESF do território, bem como a organização do serviço de saúde local. A segunda retratou a intensificação da desatenção à saúde para com as trabalhadoras rurais. Conclui-se que, no itinerário terapêutico das trabalhadoras rurais, a utilização da ESF do território se apresentou como rede preferencial, evidenciando a premência de fortalecimento da APS rural. A pandemia de covid-19 acentuou os dilemas para a busca de cuidados de saúde, revelando a urgência de ações de saúde para esse território.

Abstract This study aimed to describe the therapeutic itinerary of rural female workers during the COVID-19 pandemic. It is a qualitative study using oral history methodology. A total of 15 interviews were carried out with rural female workers belonging to the field of the Family Health Strategy (ESF in Portuguese) of a municipal district in the state of Minas Gerais. The narratives were subjected to content analysis following Bardin. The results pointed to two categories: "A way to go: revealing the context and the organization of ESF in the area;" and "Between fear and (lack of) health assistance: visibility for the trajectories of rural female workers during the COVID-19 pandemic." The first category demonstrated the therapeutic itinerary of rural female workers aiming to access health care in the ESF of their area besides the organization of local health service. The second category illustrated the intensified lack of assistance experienced by rural workers. In conclusion, the use of ESF represented the preferred network in the therapeutic itinerary of rural workers demonstrating the urgent action to strengthen Primary Health Care in rural areas. The COVID-19 pandemic stressed the challenges concerning the search of health assistance showing the urgency of health actions for this territory.

A experiência da enfermidade da mulher com câncer de mama: singularidades de um itinerário terapêutico / The illness experience of woman with breast cancer: singularities of a therapeutic itinerary / La experiencia de enfermedad de la mujer con cáncer de mama: singularidades de un itinerario terapêutico

OBJETIVO: Analisar a experiência da enfermidade da mulher com câncer de mama e os caminhos percorridos em busca da saúde. MÉTODO: A abordagem qualitativa e exploratória foi utilizada com a escolha do Estudo de Caso. As informações apreendidas foram analisadas, ordenadas e classificadas em categorias empíricas e articuladas aos referenciais teóricos. RESULTADOS: Observou-se que os caminhos em busca da saúde podem ser antagônicos a uma rede de atenção hierarquizada e sistematizada. Barreiras funcionais se mostraram presentes, ao desnudar as dificuldades encontradas pela usuária na resolutividade. Evidenciou-se que o cuidado interprofissional e o uso das tecnologias leves podem ser ferramentas potentes para o cuidado integral. CONCLUSÃO: O estudo aponta que o caminho em busca do cuidado integral pode ser arraigado por teias, que envolvem os sujeitos e suas escolhas dentro ou fora do sistema e das redes de atenção à saúde.

OBJECTIVE: To analyze the illness experience of a woman with breast cancer and the paths taken in search of health. METHOD: A qualitative and exploratory approach was used with the choice of the Case Study. The information gathered was analyzed, sorted, and classified into empirical categories, which were later linked to theoretical frameworks. RESULTS: It was observed that the paths in search of health could be antagonistic to a hierarchical and systematized care network. There were functional barriers, as the difficulties encountered by the user were exposed. It was shown that interprofessional care and the use of light technologies could be powerful tools for integral care. CONCLUSION: The study points out that the path in search of comprehensive care can be rooted in webs, which involve the subjects and their choices within or outside the health care system and networks.

OBJETIVO: Analizar la experiencia de enfermedad de una mujer con cáncer de mama y los caminos recorridos en la búsqueda de la salud. MÉTODO: Se utilizó un enfoque cualitativo y exploratorio con la elección del Estudio de Caso. La información recopilada fue analizada, ordenada y clasificada en categorías empíricas, que luego fueron vinculadas a marcos teóricos. RESULTADOS: Los caminos en busca de la salud pueden ser antagónicos a una red de atención jerarquizada y sistematizada. Existían barreras funcionales, pues se exponían las dificultades encontradas por el usuario. Se demostró que el cuidado interprofesional y el uso de tecnologías livianas pueden ser herramientas poderosas para el cuidado integral. CONCLUSIÓN: La busca de la integralidad de la atención puede radicar en redes, que involucran a los sujetos y sus elecciones dentro o fuera del sistema y de las redes de salud.

O desbravar de novos caminhos: itinerário terapêutico de famílias de crianças e adolescentes com câncer / Abriendo nuevos caminos: el itinerario terapéutico de las familias de niños y adolescentes con cáncer / Breaking new paths: therapeutic itinerary of families of children and adolescents with cancer

Objetivos: descrever o itinerário terapêutico de crianças/adolescentes com câncer e suas famílias. Método: estudo descritivo qualitativo realizado com 11 mães e uma avó de crianças/adolescentes em tratamento de câncer, guiado pelo referencial teórico do Modelo de Sistemas de Cuidados à Saúde. Os dados foram coletados no período de março a setembro de 2019, por meio de entrevistas semiestruturadas e audiogravadas, submetidas à análise de conteúdo de Morse e Field. Resultados: para a família, o caminho percorrido durante todo o processo de busca pelo diagnóstico e pela cura se configurou em sofrimento e sentimentos ambíguos. Ao longo do itinerário terapêutico, cada família estabeleceu seu modo de agir, perceber, se comunicar, de se relacionar e tomar decisões. Considerações finais: conhecer o itinerário terapêutico de famílias de crianças/adolescentes com câncer pode nortear intervenções de enfermagem assertivas e subsidiar a elaboração de estratégias que aprimorem o diagnóstico precoce da doença, favorecendo o melhor prognóstico.

Objetivos: describir el itinerario terapéutico de niños/adolescentes con cáncer y sus familias. Método: se trata de un estudio descriptivo cualitativo realizado entre 11 madres y una abuela de niños/adolescentes bajo tratamiento de cáncer, guiado por el referencial teórico del Modelo de Sistemas de Cuidados de la Salud. Los datos se recopilaron durante el período comprendido entre marzo y septiembre de 2019, mediante entrevistas semiestructuradas y audio-grabadas, sometidas al análisis de contenido de Morse y Field. Resultados: para la familia, el camino recorrido a lo largo del proceso de búsqueda de un diagnóstico y una cura se caracterizó por el sufrimiento y los sentimientos ambiguos. A lo largo del itinerario terapéutico, cada familia estableció su propia forma de actuar, percibir, comunicarse, relacionarse y tomar decisiones. Conclusión: conocer el itinerario terapéutico de las familias de niños/adolescentes con cáncer puede orientar las intervenciones asertivas de la enfermería y subsidiar el desarrollo de estrategias que mejoren el diagnóstico precoz de la enfermedad de una manera más precisa.

Objective: to describe the therapeutic itinerary of children/adolescents with cancer and their families. Method: qualitative descriptive study carried out with 11 mothers and one grandmother of children/adolescents undergoing cancer treatment, guided by the theoretical framework of the Health Care Systems Model. Data were collected from March to September 2019, through semi-structured and audio-recorded interviews, submitted to Morse and Field content analysis. Results: for the family, the path taken throughout the process of searching for diagnosis and cure was characterized by suffering and ambiguous feelings. Throughout the therapeutic itinerary, each family established their way of acting, perceiving, communicating, relating and making decisions. Final considerations: knowing the therapeutic itinerary of families of children/adolescents with cancer can guide assertive nursing interventions and support the development of strategies that improve the early diagnosis of the disease, favoring a better prognosis

[Therapeutic itinerary and radiological features of positive microscopy tuberculosis patients at Centre Hospitalier National Universitaire de Fann (CHNUF), Dakar]. / Itinéraire thérapeutique et caractéristiques radiologiques des patients tuberculeux bacillifères dépistés au centre hospitalier national universitaire de Fann (CHNUF), Dakar.

INTRODUCTION: The long diagnostic delay is responsible for the extension of radiological lesions and spread of TB in the community. These radiological lesions can leave significant scars responsible for respiratory disability. OBJECTIVE: The aim of the study is to characterize radiologic features according to tuberculosis diagnostic delay. METHODS: We conducted a prospective cross-sectional study, about 66 patients with positive sputum. RESULTS: The average diagnostic delay was 16 (±15) weeks; whether 22 (±14.1) weeks in the female gender versus 14.6 (±14.3) weeks in the male gender (P=0.10). The first care use was respectively health centers (62.1%), drugstores (51.9%), and traditional medicine (28.7%). Only 27.2% of patients used the marabouts care. Bilateral radiographic abnormalities in bivariate analysis were associated with consultation at the health center (66.7% versus 33.3%; P<0.031), as is the extension of the lesions (70.2% versus 29.8% RP=1.66 [1.05 to 2.91]; P<0.03). Lake of knowledge of the symptoms of TB was associated with the use of marabouts care (12.5% versus 87.5; PR=0.35 [0.11 to 1.08], P<0.04). CONCLUSION: These results should prompt consideration in an emergency, appropriate control interventions, advocacy, patient information and medical personnel on the reality of tuberculosis to prevent its spread often causing respiratory disability with radological effects.

Redes sociais de apoio às pessoas trans: ampliando a produção de cuidado / Social support networks for trans people: expanding the production of care

RESUMO O direito à saúde de transexuais e travestis vem sendo conquistado por meio de intensa mobilização social, resultando em políticas específicas para essa população. Apesar disso, observa-se desassistência a esse grupo, levando-o a desenhar itinerários terapêuticos fora da rede formal de atenção à saúde. Objetivouse apresentar e discutir os itinerários terapêuticos construídos por pessoas trans em Niterói por meio de suas redes sociais. Para tanto, foi realizada uma pesquisa qualitativa, de caráter exploratório, cujo cenário foi o Ambulatório de Atenção à Saúde da População Travesti e Transexual João W. Nery em Niterói/RJ. Participaram da pesquisa 20 transexuais usuários/as do ambulatório, moradores/as do município, que responderam à entrevista semiestruturada. Foram feitas também observações participantes. O tratamento dos dados foi efetuado por meio da análise de conteúdo temático-categorial. Evidenciou-se que as redes sociais ampliaram a capacidade de produção de saúde, mobilizando e articulando relações familiares, de amizade, religiosidades, movimento estudantil e grupos universitários, além do movimento LGBTQIA+ no empoderamento e ressignificação dos projetos de vida e da própria expressão da identidade trans. Sugere-se que os serviços de saúde precisam conhecer e se articular às redes sociais para produzir um cuidado em saúde pautado pelos paradigmas da integralidade e dos direitos humanos.

ABSTRACT The rights of transgender people to health care has been achieved through intense social mobilization, resulting in specific policies for that population. But despite those policies, in general, there is a lack of assistance to this group regarding their health care, leading them to design different therapeutic itineraries in the search for health care assistance. In this article, we present the therapeutic itineraries built by the trans population in Niterói through their Social Networks. For that, a qualitative exploratory research was carried out at Ambulatório de Atenção à Saúde João W. Nery, in Niterói. Twenty transgender people who are cared for at the clinic and who live in the city participated. They answered a semi-structured interview script. Data treatment was carried out using the thematic-categorical content analysis. The research shows that Social Networks have expanded the capacity of health production, mobilizing family relationships, friendship, religiosity, student movement, and study groups at the university, in addition to the LGBTQIA+ social movement on the empowerment and resignification of life projects and the very expression of transgender identity. We suggest that health services need to know and articulate social networks to produce health care guided by the paradigms of integrality and human rights.

Verbal autopsy and therapeutic itinerary of children who die before arrival in a paediatric centre in Yaoundé, Cameroon.

BACKGROUND: In Cameroon the rate of infant-juvenile mortality remains high and most death occur in the community. Mortality statistics is usually based on hospital data which are generally insufficient and less reliable. In a context where legislation on death registration is not applied, and where conventional autopsy is not often done, verbal autopsy (VA) provides information on mortality. This study tried to experiment this method and also analyses the therapeutic pathway of a group of children who died before arrival at the emergency department of a pediatric hospital. METHODS: A cross sectional descriptive study was carried out on children who died before arrival, at the Mother and Child Centre of the Chantal Biya Foundation in Yaounde, between October 2013 and April 2014. The addresses of parents or relatives of the deceased children were registered at the start of the study. Each respondent was interviewed 5 to 6 weeks later at the residence of the deceased child, with the aid of a VA questionnaire. Information obtained was on the socio-demographic characteristics of the families, past history of deceased, clinical presentation and the different health care services sought before the death. RESULTS: In all, 40 children who died were included in the study. The majority of the deceased children were less than 5 years (82.5%) with 50.0% being less than 1 year of age. Almost half of them (47.5%) had been ill for more than 24 hours, 40% for more than 3 days. Up to 50.0% had not been taken to a health facility. Most of them had visited 2 or 3 other health facilities before dying on the way to our hospital. Auto medication was frequent (42.5%); parents initially recourse to drugs which were either bought or obtained from home. Some parents (25.0%) brought their children only after they had been to a private dispensary, or a traditional healer (15.0%). Only 7.5% benefited from consultation in a public health facility and 2.5% resorted to prayers and incantations. Whatever the kind of care sought, the choice was mostly guided by its proximity (32.5%), advice from a relative (27.5%) or its affordability. CONCLUSIONS: It is of crucial importance that the government reinforces the measures to avoid the existence of clandestine health centres and check the competence of health care professionals. Improving referral/counter referral system will permit the limitation of fatal medical errors.

Itinerário terapêutico de crianças com microcefalia pelo vírus Zika / Therapeutic itinerary of children with microcephaly due to the Zika virus

Resumo Em 2015, no Brasil, houve uma epidemia de microcefalia que foi associada à infecção pelo vírus Zika. A condição destas crianças impulsionou os pais a percorrerem um caminho em busca por tratamento. O objetivo deste estudo foi conhecer o itinerário terapêutico percorrido por pais e/ou cuidadores de crianças com microcefalia pelo vírus Zika nos setores de atenção à saúde. Pesquisa de abordagem qualitativa, realizada em um Centro de Referência em Neurodesenvolvimento, no período de abril de 2017 a fevereiro de 2018, com pais e/ou cuidadores de crianças com microcefalia pelo vírus Zika. A amostra obedeceu aos critérios de saturação de sentidos. Foram feitas 20 entrevistas semiestruturadas, gravadas e transcritas. Realizou-se análise de conteúdo, na modalidade temática. Os resultados demostraram desorientação e incertezas na busca pelo cuidado nos setores de saúde. O setor mais procurado foi o profissional, seguido pelo informal e popular. As informações veiculadas na mídia e redes sociais, que fazem parte do setor informal, contribuíram para esclarecer o significado da microcefalia e vírus Zika e auxiliou na busca por tratamento. O cuidado na rede de Atenção à Saúde foi marcado pela peregrinação. Diante de uma situação nova e emergencial, o caminho percorrido, entre o diagnóstico e o tratamento, foi árduo.

Abstract In 2015, there was an epidemic of microcephaly in Brazil that was associated with infection by the Zika virus. The condition of these children obliged the parents to embark on a quest in search of treatment. The scope of this study was to establish the therapeutic itinerary pursued in healthcare sectors by parents and/or caregivers of children with microcephaly due to the Zika virus. It involved qualitative research, conducted at a Center of Reference on Neurodevelopment between April 2017 and February 2018, with parents and/or caregivers of children with microcephaly caused by the Zika virus. The sample complied with the criteria of saturation. Twenty semi-structured interviews were conducted, recorded, and transcribed, and content analysis was applied. The results revealed disorientation and uncertainties in the search for care in the health sector. The most sought-after sector was the professional sector, followed by the informal sector. The information conveyed in the media and social networks, which constitute part of the informal sector, helped to clarify the significance of microcephaly and the Zika virus and assisted in the search for treatment. Care in the healthcare network was marked by difficulties and, faced with a new and emergency situation, the route between diagnosis and treatment was arduous.

Um resgate de si: itinerário terapêutico de um caso de adoecimento mental relacionado ao trabalho / Rescuing yourself: therapeutic itinerary of a case of work-related mental illness

Este artigo apresenta uma reflexão sobre o processo de reabilitação de adoecimento mental relacionado ao trabalho por meio da reconstituição do Itinerário Terapêutico de uma trabalhadora, evidenciando a importância dos serviços públicos de saúde. Mesmo diante do expressivo aumento dos casos de adoecimento mental e das evidências de relação com as condições e formas de organização do trabalho, raramente as situações laborais são consideradas nas avaliações dos serviços de saúde. Mesmo com o atual contexto de desmonte da saúde pública, existem exemplos de atuações exitosas, como a que discutimos aqui. Por meio de entrevista semidirigida com uma trabalhadora e construção do Itinerário Terapêutico, buscou-se compreender seu processo de adoecimento mental, a relação com o trabalho e o percurso de reabilitação. Os resultados demonstram a importância do entendimento do trabalho como determinante de saúde, da elaboração de projetos terapêuticos singulares e da atenção integral, revelando que a articulação em rede, o estabelecimento de vínculo e a busca pelo protagonismo do usuário são essenciais na atenção à saúde mental relacionada ao trabalho.

This article presents a reflection on the process of rehabilitation of work-related mental illness through the reconstitution of a worker's Therapeutic Itinerary, highlighting the importance of public health services. Even in the face of significant increase in cases of mental illness and evidence of a relationship with the conditions and forms of work organization, work situations are rarely considered in the assessments of health services. However, despite the current context of dismantling the public health system, there are examples of successful actions, such as the one we discussed here. Through a semi-directed interview with a worker and construction of the Therapeutic Itinerary, we sought to understand her mental illness process, the relationship with work and the path of rehabilitation. The results demonstrate the importance of understanding work as determinant of health, the development of unique therapeutic projects and comprehensive care, revealing that networking, establishing a bond and seeking the protagonism of the user are essential in work-related mental health care.

Exploração qualitativa do itinerário terapêutico de crianças com deficiência física na Nigéria usando análise de conteúdo temática / Exploración cualitativa del itinerario terapéutico de niños con discapacidades físicas en Nigeria utilizando análisis de contenido temático / Qualitative exploration into therapeutic itinerary of children with physical disabilities in Nigeria using thematic content analysis

Resumo Objetivo Explorar o itinerário terapêutico na busca de cuidados para crianças com deficiências físicas pelos cuidadores. Métodos Um plano qualitativo descritivo que recrutou nove cuidadores de crianças com deficiência física, com consentimento, que frequentavam um Hospital Universitário Nigeriano. Foi utilizado um guia de entrevista semi-estruturado para coletar dados sobre o itinerário terapêutico, que foi definido como os caminhos percorridos pelos indivíduos para resolver o seu problema de saúde. As entrevistas foram gravadas em áudio e transcritas literalmente. Os dados foram analisados utilizando a análise do conteúdo temático. Resultados os temas emergentes revelaram que os cuidadores iniciaram o itinerário terapêutico para os respetivos filhos após a observação de quaisquer deficiências que vão para além de doenças casuais. A falta de capacidade dos hospitais privados, que servem como ponto inicial de entrada na busca de cuidados, encorajou a procura por cuidados nos hospitais públicos, lares espirituais, e clínicas tradicionais. A entrada na fisioterapia dependia de auto-referências, referências por parentes e médicos. Cuidar de crianças com deficiência física prejudicou de modo significativo a vida social, as finanças, o trabalho do cuidador; e expectativas não alcançadas de que a criança melhorasse o mais cedo possível encorajaram um pluralismo contínuo. Conclusão e implicações para a prática O fato de ter crianças com deficiências e de ter havido atraso nos progressos levou os cuidadores a práticas múltiplas e complexas na busca de cuidados de saúde.

Resumen Objetivo Explorar el itinerario terapéutico para la búsqueda de cuidado de niños con discapacidad física por parte de los cuidadores. Métodos Un diseño cualitativo descriptivo que recluta a nueve cuidadores de niños con discapacidades físicas que asisten a un hospital universitario de Nigeria. Se utilizó una guía de entrevista semiestructurada para recopilar datos sobre el itinerario terapéutico que se definió como los caminos que recorren los individuos para abordar su problema de salud. Las entrevistas fueron grabadas en audio y transcritas textualmente. Los datos se analizaron mediante análisis de contenido temático. Resultados Los temas emergentes revelaron que los cuidadores iniciaron un itinerario terapéutico para sus hijos al observar cualquier impedimento que vaya más allá de las enfermedades casuales. La falta de capacidad en los hospitales privados, que sirve como punto inicial de entrada en la búsqueda de atención, fomenta la vacilación en los hospitales públicos, hogares espirituales y clínicas tradicionales. La entrada en fisioterapia dependía de las autorremisiones, las derivaciones de familiares y médicos. El cuidado de niños con discapacidad física afectó significativamente la vida social, las finanzas y el trabajo del cuidador; y las expectativas no satisfechas de que un niño se recupere lo antes posible fomentaron el pluralismo continuo. Conclusión e implicaciones para la práctica El hecho de que los niños presentaran discapacidades e hitos retrasados condujo a múltiples prácticas complejas de búsqueda de atención médica entre los cuidadores. Por lo tanto, estos cuidadores se vuelven médicos pluralistas y encubiertamente no se adhieren a las prescripciones de tratamiento hospitalario.

Abstract Objective To explore the therapeutic itinerary for seeking care for children with physical disabilities by caregivers. Methods A descriptive qualitative design recruiting nine consenting caregivers of children with physical disabilities attending a Nigerian Teaching Hospital. A semi-structured interview guide was used to collect data on therapeutic itinerary which was defined as the paths taken by individuals to address their health problem. Interviews were audio-recorded and transcribed verbatim. Data was analyzed using thematic content analysis. Results Emerging themes revealed that caregivers commenced therapeutic itinerary for their children upon observation of any impairments that go beyond casual illnesses. Lack of capacity in private hospitals, which serves as initial point of entry into care seeking, encourage vacillation into public hospitals, spiritual homes, and traditional clinics. Entry into physiotherapy was dependent on self-referrals, referrals by relatives, and physicians. Caring for children with physical disability significantly affected caregiver's social life, finances, work; and unmet expectations for a child to get well as soon as possible encouraged continuous pluralism. Conclusion and implications for the practice Having children presenting with impairments and delayed milestones led to complex multiple health care seeking practices among caregivers. Thus, these caregivers become medical pluralists and covertly non-adherent to hospital treatment prescriptions.

O diagnóstico tardio na perspectiva do itinerário terapêutico: grau 2 de incapacidade física na hanseníase / El diagnóstico tardío desde la perspectiva del itinerario terapéutico: grado 2 de discapacidad física en la enfermedad de Hansen / Late diagnosis under the perspective of therapeutic itineraries: level 2 physical disabilities in Hansen's disease

Destacam-se casos novos de hanseníase com grau de incapacidade física 2 (GIF 2) que demonstram a ineficiente detecção oportuna. O artigo é um relato de casos e propõe analisar o diagnóstico tardio sob a perspectiva do itinerário terapêutico (IT), com base em um estudo qualitativo. O cenário foram dois municípios da Região Metropolitana da Baixada Santista: Praia Grande e São Vicente. Realizou-se análise documental e entrevista em profundidade com quatro participantes. O material foi submetido à análise de conteúdo e definiram-se as categorias temáticas: cuidado em saúde; corpo na hanseníase; incapacidades na hanseníase; e diagnóstico tardio. Revelaram-se intrincados itinerários terapêuticos, marcados pela fragilidade do cuidado com erro e atraso no diagnóstico, que potencializaram os riscos individuais e coletivos e impactaram negativamente o cotidiano dos sujeitos. (AU)

Se subrayan casos nuevos de enfermedad de Hansen (lepra) con grado de discapacidad física 2 (GIF 2), que demuestran la ineficiente detección oportuna. El artículo es un relato de casos y propone analizar el diagnóstico tardío bajo la perspectiva del itinerario terapéutico (IT), con base en un estudio cualitativo. El escenario fueron dos municipios de la Región Metropolitana de la Baixada Santista: Praia Grande y São Vicente. Se realizó el análisis documental y entrevista en profundidad con cuatro participantes. El material se sometió a análisis de contenido y se definieron las categorías temáticas: cuidado de salud, cuerpo en la enfermedad de Hansen; discapacidades en la enfermedad de Hansen y diagnóstico tardío. Se revelaron intricados itinerarios terapéuticos, señalados por la fragilidad del cuidado, con error y atraso en el diagnóstico, que potencializaron los riesgos individuales y colectivos e impactaron negativamente el cotidiano de los sujetos. (AU)

There are remarkable numbers of new leprosy cases with 2 (GIF 2) degree of physical disability, demonstrating the inefficient timely detection. This article presents case reports, based on a qualitative study, regarding four patients with Hansen's disease and a GIF 2 level at the time of diagnosis, analyzing the late diagnosis from the perspective of therapeutic itineraries (TI). The cases came from two municipalities in the Metropolitan Region of Baixada Santista: Praia Grande and São Vicente. Three men and one woman participated, between 45 and 61 years old. The researcher performed documentary analysis and in-depth interviews. Resulting data was submitted to content analysis and four thematic categories were identified: health care; body in leprosy; disabilities in leprosy; late diagnosis. The results reveal intricate therapeutic itineraries with obstacles for reaching a diagnosis. Lack of information about Hansen's disease and professional inability to diagnose increased both individual and collective risks, in addition to the negative impact on the subjects' daily lives. Thus, a late diagnosis due to the frailty of care strongly concurs to keep Hansen's disease as a stigmatizing and disabling disease. (AU)

As Tecnologias Relacionais e a Produção de Itinerários Terapêuticos em Saúde Mental / Relational Technologies and the Production of Therapeutic Itineraries in Mental Health / Tecnologías Relacionales y la Producción de Itinerarios Terapéuticos en Salud Mental

No campo da saúde existe uma disputa paradigmática, na qual modelos teórico-práticos coexistem, ora possibilitando um cuidado psicossocial, ora reproduzindo um tratamento enclausurante. O objetivo desse estudo foi cartografar os itinerários terapêuticos de pessoas com sofrimento psíquico, analisando as capturas e potencialidades da rede de saúde. Foi realizada uma pesquisa sob a perspectiva cartográfica. Teve como participantes quatro pessoas com sofrimento psíquico, com histórico de internação psiquiátrica, usuárias de uma Unidade Básica de Saúde de um município de médio porte da região sudeste do Paraná. Os resultados e a discussão são apresentados em três linhas de análise, nas quais são apresentados os itinerários terapêuticos dos participantes, discutindo-se aspectos relativos à conformação de territórios existenciais e a função das tecnologias relacionais no acionamento das redes de saúde. Enquanto analisador, o itinerário evidencia tensões entre distintos modelos de atenção em saúde, assim como tensões entre a proposição de políticas públicas e seus modos de operacionalização cotidiana. Concluímos que, para que ocorra a transição paradigmática de um modelo hospitalocêntrico para outro, que tenha como foco a Atenção Básica e o território, necessita-se investimento na operacionalização de tecnologias relacionais. (AU)

There is a paradigmatic dispute in the healthcare field, with the coexistence of different theoretical-practical models, sometimes enabling psychosocial care, other times reproducing a cloistering treatment. The objective of this study was to map therapeutic itineraries of people with psychological distress, analyzing catches and potentialities in mental health care of the health network of a medium-sized city. A survey was conducted from the cartographic perspective. Survey participants were four people with psychological distress and psychiatric hospitalization history, users of a Primary Health Care Unit in the southeast region of Paraná. Results and discussion are presented in three lines of analysis, in which participants' care itineraries are presented, discussing aspects related to the formation of existential territories as the role of relational technologies in the activation of health networks. In order to analyse events, we use therapeutic itineraries to highlight the tensions between health care models, as well as tensions between the proposition of public policies and their daily operation modes. We conclude that paradigmatic transition from one hospital-centered model to another, focused on Primary Care and territory, requires investment in the operationalization of relational technologies. (AU)

En el campo de la salud existe una disputa paradigmática, donde conviven modelos teórico-prácticos, a veces permitiendo la atención psicosocial, otras veces reproduciendo tratamientos de clausura. El objetivo de este estudio fue mapear los itinerarios terapéuticos de personas con sufrimiento psíquico, analizando capturas y potencialidades de la red de salud. Se realizó una encuesta desde la perspectiva cartográfica. Los participantes fueron cuatro personas con sufrimiento psicológico y antecedentes de hospitalización psiquiátrica, usuarios de una Unidad Básica de Salud en un municipio de tamaño mediano de la región sureste de Paraná. Los resultados y la discusión se presentan en tres líneas de análisis, donde se presentan los itinerarios terapéuticos de los participantes, discutiendo aspectos acerca de la formación de territorios existenciales y el rol de las tecnologías relacionales en la activación de las redes de salud. Como analizador, el itinerario resalta las tensiones entre distintos modelos de atención, así como entre la propuesta de políticas públicas y su funcionamiento. Concluimos que, para la transición paradigmática de un modelo hospitalocéntrico a otro, que se centra en la Atención Primaria y el territorio, se requiere una inversión en la operacionalización de las tecnologías relacionales. (AU)

Entre uma consulta e outra: itinerário terapêutico de pessoas com câncer de cabeça e pescoço / The back and forth of consultations: therapeutic itinerary of people bearing head and neck cancer

Objetivo: Conhecer o itinerário terapêutico de pessoas com câncer de cabeça e pescoço em tratamento radioterápico. Metodologia: Estudo descritivo de caráter qualitativo, realizado em um hospital-escola do Rio Grande do Sul, com 18 pessoas, por meio de entrevista aberta. Para tratamento dos dados utilizou-se a análise de conteúdo temática. Resultados: O itinerário percorrido pelos pacientes deu-se nos serviços de saúde do sistema público e privado, sendo marcado pela demora para o diagnóstico e o tratamento. A busca por alternativas para resolver o problema de saúde ocorreu também no meio sociocultural. Conclusão: Para a Enfermagem torna-se relevante compreender o contexto em que a experiência de adoecimento é vivenciada e o tempo em que as etapas do processo de diagnóstico e tratamento foram desenvolvidas, a fim de oferecer uma melhor assistência

Objective: To know the therapeutic itinerary of people with head and neck cancer who are undergoing radiotherapy treatment. Methodology: Study descriptive and qualitative realized in the school Hospital of the Rio Grande do Sul, with 18 people, through open interviews. Data analysis used the thematic content analysis. Results: It was found that the route was traveled by the patients in both the public and private system in the health services. The delay in getting the diagnosis and treatment marked the path of respondents so, too, looked for alternatives in the socio-cultural environment through relationships with friends, family and neighbors in order to solve their health problems. Conclusion: For nursing, it is important to understand the context in which the experience of illness was experienced and the time step of the diagnostic process and treatment have been developed and provide better care

Objetivo: Conocer el itinerario terapéutico de personas con cáncer de cabeza y cuello que se someten a tratamiento de radioterapia. Metodología: Investigación descriptivo y cualitativo, realizada en un hospital universitario de Rio Grande do Sul, con 18 personas, a través de entrevistas abiertas. Análisis de datos utilizó el análisis de contenido temático. Resultados: Se encontró que la ruta fue recorrida por los pacientes, tanto en el sistema público y privado en los servicios de salud. El retraso en el diagnóstico y tratamiento marcó el camino de los encuestados así, también, buscó alternativas en el entorno socio-cultural a través de relaciones con amigos, familiares y vecinos con el fin de resolver sus problemas de salud. Conclusión: En la enfermería, es importante entender el contexto en el que se vivió la experiencia de la enfermedad y el paso de tiempo del tratamiento e diagnóstico se han desarrollado y proporcionar una mejor atención