Les progrès thérapeutiques réguliers ont transformé le pronostic des enfants atteints de leucémie aiguë, posant avec une grande acuité le problème des effets secondaires tardifs, de l'insertion sociale mais aussi de la qualité de vie des patients et de leur entourage, ainsi que des déterminants mis en jeu. L'ensemble des acteurs du système de soins ont la responsabilité de l'étude de ces effets secondaires tardifs et de leur prise en compte. En 2004, le projet LEA (Leucémie de l'Enfant et de l'Adolescent) a débuté avec pour objectif d'évaluer l'état de santé et la qualité de vie à moyen et long terme de patients traités pour une leucémie aiguë de l'enfance après 1980. La volonté était de mettre en oeuvre un système pouvant produire de la connaissance dans une démarche de recherche traditionnelle, mais aussi de s'inscrire rapidement dans une démarche pragmatique de production d'informations susceptibles de modifier les pratiques de prise en charge et de suivi. L'objectif général de ce travail cherche à démontrer l'utilité de dispositifs lourds comme la mise en oeuvre d'une cohorte, dans la double logique de fournir une information d'une part directement utile à la décision clinique, et d'autre part susceptible d'éclairer la décision publique. Les travaux scientifiques s'articulent autour de : 1. La visibilité de la cohorte LEA au regard des autres dispositifs existants au niveau international ; 2. Les conséquences à distance des traitements lourds reçus par les patients ; 3. La qualité de vie de l'entourage à distance de l'épisode aigu de la maladie ; 4. L'utilité d'un suivi systématisé dans la diminution des inégalités d'accès au système de santé entre les classes sociales. / Regular advances in cancer treatment have dramatically improved the prognosis of children with acute leukemia, raising with a great acuity the problem of the late physical side effects, social integration, quality of life of the patients and their family as well as identification of the determinants of these outcomes. It is the responsibility of all the care system actors to consider these objective and subjective late effects. The LEA project (Leucémie de l'Enfant et de l'Adolescent - childhood and adolescent leukemia) was initiated in 2004 with the aim of studying the long-term health status and quality of life of children treated for leukemia after January 1980. As soon as the project began, the aim was to implement a system that can produce knowledge in a traditional research approach, but also to rapidly become a pragmatic approach of producing information that could affect both care and monitoring practices. The general objective of this manuscript seeks to demonstrate the utility of heavy plan such as the implementation of a cohort, in the double approach of providing information on the one hand directly relevant to clinical decision, and on the other hand likely to enlighten public decision. The present scientific works are based on: 1. The visibility of LEA in relation to other cohorts of childhood cancer survivors existing internationally; 2. The long-term impact of the heavy modalities of treatment, as the hematopoietic stem cell transplantation or irradiation; 3. The quality of life of the family long after the completion of cancer therapy; 4. The usefulness of a systematic follow-up in reducing inequalities in access to health care among social classes.

Submitted by priscila santos amorim (priscilaamorimufba@gmail.com) on 2015-06-19T01:03:09Z No. of bitstreams: 1 DISSERTAÇÃO Priscila Santos amorim - para impressão.pdf: 3946797 bytes, checksum: 6810f7401c9c1dc5868bce4fc507de4c (MD5) / Approved for entry into archive by Maria Auxiliadora da Silva Lopes (silopes@ufba.br) on 2015-08-27T14:53:52Z (GMT) No. of bitstreams: 1 DISSERTAÇÃO Priscila Santos amorim - para impressão.pdf: 3946797 bytes, checksum: 6810f7401c9c1dc5868bce4fc507de4c (MD5) / Made available in DSpace on 2015-08-27T14:53:53Z (GMT). No. of bitstreams: 1 DISSERTAÇÃO Priscila Santos amorim - para impressão.pdf: 3946797 bytes, checksum: 6810f7401c9c1dc5868bce4fc507de4c (MD5) / Esta pesquisa trata da escolarização de crianças/adolescentes em hemodiálise e que por sua vez, vivem a maior parte do seu tempo em função dos cuidados à saúde e à manutenção da vida. A hemodiálise consiste em uma terapia substitutiva da função renal, após o diagnóstico da insuficiência renal crônica (IRC) em estágio mais avançado. O objetivo da pesquisa foi investigar os significados do processo de escolarização de crianças/adolescentes com Insuficiência Renal Crônica, que realizam tratamento de Hemodiálise, em um hospital público da cidade de Salvador-BA. O referencial teórico-metodológico que a orienta, situa-se no campo da fenomenologia, a partir de uma abordagem socioantropológica para a realização de leituras possíveis do fenômeno em estudo. Desenvolveu-se um trabalho de campo, utilizando-se observações e entrevistas com quatorze participantes, sendo sete pacientes (três meninos e quatro meninas) do serviço de nefrologia pediátrica de um hospital público de Salvador-BA e suas respectivas mães acompanhantes. A partir daí, foi possível organizar o material empírico para realizar a análise e assim, descrever e problematizar as questões relativas à escolarização destas crianças/adolescentes na vivência com a doença e a hemodiálise. Tal estudo possibilitou visualizar em meio às experiências apreendidas, as consequências da doença e sua terapêutica nas questões que envolvem as rupturas na vida destas pessoas, a adoção de novos estilos de vida, os cuidados, as alterações no próprio corpo, o medo da morte, o sofrimento, as esperanças e expectativas que implicam nos seus percursos e no que significam para estas pessoas o processo de escolarização. Como resultados, identificou-se que para estas pessoas a escolarização no contexto da IRC e da hemodiálise pressupõe a adaptação à realidade da forma como esta se apresenta, quer seja na escola comum ou na classe hospitalar, não sendo possível falar da educação escolar destas pessoas, sem antes perceber o peso marcado pela doença em suas vidas e as dificuldades e possibilidades encontradas em seus percursos carregados de emoções em seus cuidados, privações e rearranjos que, por vezes, são necessários nos inesperados de suas trajetórias existenciais. Entender as necessidades de crianças e adolescentes com doença crônica renal para a partir daí, garantir a assistência plena em saúde, educação e seu processo de inclusão, se faz importante no caminhar de todas as ações que os envolvem. / ABSTRACT This research deals with the children's and adolescents' education on hemodialysis which in turn, live most of their time in terms of health care and the maintenance of life, being deprived of their full cognitive, socio-affective and emotional development. Hemodialysis is a renal replacement therapy after diagnosis of chronic renal failure (CRF) in a more advanced stage. The objective was to investigate the meanings of the children's and adolescents' educational process with Chronic Renal Failure who perform Hemodialysis treatment at a public hospital in the city of Salvador-BA. The theoretical and methodological framework that guides this research lies in the field of phenomenology from a socio-anthropological approach to the realization of possible readings of the phenomenon under study. It was developed using fieldwork observations and interviews with fourteen participants, seven of them were patients (three boys and four girls) of pediatric nephrology service of a public hospital in Salvador - BA and their seven accompanying mothers. From there, it was possible to organize the empirical material to perform the analysis and so, describe and discuss issues related to these children's and adolescents' education in living with the disease and hemodialysis. This study enabled to view the experiences learned, the consequences of the disease and its treatment on issues involving disruptions in the lives of these people, the adoption of new life-styles, care, changes in the body itself , the fear of death , suffering , hopes and expectations involving in their journeys and what these people mean to the educational process. As a result, it was found that for these people, the education in the context of CRF and hemodialysis requires adaptation to the reality of how it presents itself, either in regular schools or in the hospital class, it is not possible to speak of these people's education without prior noticing the weight marked by illness in their lives and the difficulties and opportunities found in their paths carried with emotions in their care, deprivation and rearrangements which are sometimes necessary in unexpected of its existential trajectories. Understanding the children's and adolescents' needs with chronic kidney disease to thereafter ensure full assistance in health and education and the process of inclusion, it becomes important in the journey of all actions involving them.