The aim of this diploma thesis is to present psychosocial aspects of acute phase treatment of childhood cancer. The literary briefing section is divided into four chapters. The first chapter presents the general medical characteristics of childhood malignancies and the principles of treating pediatric oncology diseases. The second chapter captures key findings of developmental psychology to ontogenesis in childhood and adolescence. The third chapter focuses on the psychosocial aspects of oncological treatment and psychological interventions applied during this treatment. The fourth chapter deals with palliative care in pediatric oncology and the psychological context of the child's death and family bereavement. Qualitative research consists of a set of four descriptive case reports of patients and their parents who are in the acute phase of cancer treatment or are shortly after its completion. The case reports present the experience of these patients and parents. Keywords Pediatric oncology, pediatric hematooncology, pediatric oncopsychology, pediatric patient, adolescent patient.

The diploma thesis deals with the design of the building of the Center for Children's Oncology Endowment Fund Krtek (Mole) at the crossing of Milady Horákové and Francouzské streets in Brno. Emphasis is placed on a detailed solution of operational, functional and capacity needs, which are individual requirements of a particular endowment fund.

Les survivants du cancer pédiatrique présenteront, au cours de leur vie, des séquelles cardiométaboliques liées à leur maladie et aux traitements qu’ils ont reçus. Nous pensons qu’il est possible d’améliorer la qualité de leur alimentation et leur profil de santé cardiométabolique en intervenant dès le début de leur parcours en oncologie. Ce projet d’inscrit dans l’initiative VIE (Valorisation-Implication-Éducation) dont l’objectif est d’offrir un support aux patients et leur famille afin de prévenir les effets secondaires aigus et tardifs des traitements antinéoplasiques. Objectifs. Évaluer l’impact d’une intervention nutritionnelle précoce en oncologie pédiatrique sur la qualité alimentaire des patients. Évaluer l’évolution des indicateurs de santé cardiométabolique après un an d’intervention nutritionnelle. Méthodologie. Soixante-deux enfants traités en oncologie au CHU Ste-Justine ont été recrutés dans l’étude moins de 12 semaines après leur diagnostic et ont été suivis tous les deux mois par une nutritionniste de recherche. Les données ont été collectées à l’évaluation initiale et après un an d'interventions nutritionnelles auprès de 36 patients. L’intervention nutritionnelle consistait en accompagnement individualisé ayant pour but d’encourager une alimentation équilibrée durant le traitement du cancer chez l’enfant. La collecte de données comprenait des journaux alimentaires, des informations cliniques, dont la pression artérielle, des prélèvements sanguins et des prises de mesures anthropométriques. La qualité alimentaire était déterminée à l’aide des scores de qualité alimentaire : Diet Quality Index (DQI) et Healthy Diet Indicator (HDI) calculés à partir des données provenant des journaux alimentaires. Les paramètres anthropométriques et biochimiques ont été comparés aux normes pour les enfants en bonne santé du même sexe et du même âge afin de déterminer l’évolution de leur profil cardiométabolique. Résultats. Lors de l'évaluation initiale, l'âge moyen était de 7,9 ans, 52,8% étaient des garçons et 50% souffraient de leucémie aiguë lymphoblastique. Le nombre moyen de suivis était de 4,72  1,06. Par rapport à l’évaluation initiale, dont la moyenne et l’écart-type sont de 48.53 ± 10.45 sur une possibilité maximale de 100 points, la différence avec l’évaluation initiale était de 5,22 ± 9,95 points (P= 0,003) et de 4,75 ± 12,98 points (P= 0,04) pour l’évaluation de 6 mois. De même, la proportion de participants ayant une adhésion modérée et forte (par rapport à une faible adhésion) au score HDI était plus importante après six mois (n= 12 ; 35,29% ; P= 0,027) et un an d’intervention (n=14 ; 39% ; P= 0,012) que lors de l’évaluation initiale (n=5 ; 13,89%). Entre l’évaluation initiale et l’évaluation effectuée après un an d’intervention, une augmentation du score Z moyen du poids et de l’IMC et des concentrations moyennes de HDL-C et du 25-hydroxy vitamine D ont été observés. Conclusion. Dans l'ensemble, cette étude confirme qu'une intervention nutritionnelle d'un an, déployée tôt après le diagnostic de cancer pédiatrique, permet d'améliorer la qualité de l’alimentation des enfants. / Pediatric cancer survivors will have lifelong cardiometabolic sequelae related to their disease and their treatments. We believe that improving their dietary quality and cardiometabolic health profile is possible by intervening early in their oncology journey. This project is part of the VIE (Valorisation-Implication-Éducation) initiative, which aims to support patients and their families to prevent antineoplastic treatments' acute and late side effects. Objectives. Evaluate the impact of an early nutritional intervention in pediatric oncology on the nutritional quality of patients. To assess changes in cardiometabolic health indicators after one year of nutritional intervention. Methodology. Sixty-two children treated in oncology at CHU Ste-Justine were recruited less than 12 weeks after their cancer diagnosis and were followed every two months by a registered dietitian. The nutritional intervention consisted of individualized support to encourage a balanced diet during childhood cancer treatment. Data was collected at baseline and after one year of nutritional intervention for 36 participants. Data collection included food diaries, clinical information including blood pressure, blood sampling and anthropometric measurements. Dietary quality was determined using the Diet Quality Index (DQI) and Healthy Diet Indicator (HDI) scores calculated from data obtained from food journals. Anthropometric and biochemical parameters were compared with sex and age norms for healthy children to determine their cardiometabolic profile evolution. Results. At initial assessment, the mean age was 7.9 years, 52.8% were male, and 50% had leukemia. The mean number of dietitian follow-up visits during the intervention was 4.72  1.06. Compared with the initial assessment, which had a mean and standard deviation of 48.53 ± 10.45 out of a maximum possibility of 100 points, the difference with the initial assessment was 5.22 ± 9.95 points (P = 0.003) and 4.75 ± 12.98 points (P = 0.04) for the 6-month assessment. Similarly, the proportion of participants with moderate and strong adherence (vs. low adherence) to the HDI score was greater at six months (n= 12; 35.29%; P=0.027) and one year evaluation (n=14; 39%; P= 0.012) than at the initial assessment (n=5; 13.89%). Between the initial and 1-year assessments, an increase in mean Z-score weight and BMI and mean HDL-C and 25-hydroxy vitamin D concentrations were observed. Conclusion. Overall, this study confirms that a 1-year nutrition intervention deployed early after diagnosis of pediatric cancer improves children's diet.

Made available in DSpace on 2014-12-17T15:38:51Z (GMT). No. of bitstreams: 1 DanielleFG_DISSERT.pdf: 5162066 bytes, checksum: d43c54235f8f5b351fac7f8338c0b332 (MD5) Previous issue date: 2011-04-01 / Conselho Nacional de Desenvolvimento Cient?fico e Tecnol?gico / Central Nervous System are the most common pediatric solid tumors. 60% of these tumors arise in posterior fossa, mainly in cerebellum. The first therapeutic approach is surgical resection. Malignant tumors require additional strategies - chemotherapy and radiotherapy. The increasing survival evidences that childhood brain tumors result in academic and social difficulties that compromise the quality of life of the patients. This study investigated the intellectual functioning of children between 7 to 15 years diagnosed with posterior fossa tumors and treated at CEHOPE - Recife / PE. 21 children were eligible - including 13 children with pilocytic astrocytoma (G1) who underwent only surgery resection, and eight children with medulloblastoma (G2) - submitted to surgical resection, chemotherapy and craniospinal radiotherapy. Participants were evaluated by the Wechsler Intelligence Scale for Children - WISC-III. Children of G1 scored better than children of G2. Inferential tools (Mann-Whitney ? Test) identified significant diferences (p ≤ 0.05) between the Performance IQ (PIQ) and Processing Speed Index (PSI) as a function of treatment modality; Full Scale IQ (FSIQ), PIQ and PSI as a function of parental educational level; PIQ, FSIQ, IVP and Freedom from Distractibility (FDI) as a function of time between diagnosis and evaluation. These results showed the late and progressive impact of radiotherapy on white matter and information processing speed. Furthermore, children whose parents have higher educational level showed better intellectual performance, indicating the influence of xxii socio-cultural variables on cognitive development. The impact of cancer and its treatment on cognitive development and learning should not be underestimated. These results support the need to increase the understanding of such effects in order to propose therapeutic strategies which ensure that, in addition to the cure, the full development of children with this pathology / Os tumores de Sistema Nervoso Central s?o as neoplasias s?lidas mais frequentes na inf?ncia. 60% desses tumores ocorrem na fossa posterior, cujo principal componente ? o cerebelo. A primeira interven??o ? a ressec??o cir?rgica; tumores malignos requerem estrat?gias terap?uticas complementares quimioterapia e radioterapia. O aumento da sobrevida evidenciou que crian?as com tumores cerebrais apresentam dificuldades acad?mico-sociais que comprometem sua qualidade de vida. O objetivo deste estudo foi investigar a capacidade intelectiva de crian?as de 6 a 16 anos com tumores de fossa posterior. Participaram 21 crian?as atendidas pelo CEHOPE Recife/PE sendo 13 crian?as com astrocitoma piloc?tico (G1) - submetidas ? cirurgia de ressec??o e; oito crian?as com meduloblastoma (G2) submetidas a cirurgia de ressec??o, quimioterapia e radioterapia de cr?nio e neuro-eixo. Os participantes foram avaliados pelas Escalas Wechsler de Intelig?ncia para Crian?as WISC-III. Crian?as de G1 obtiveram desempenho superior ao de crian?as de G2. An?lises estat?sticas inferenciais (Teste ? de Mann-Whitney) identificaram contrastes estatisticamente significativos (p≤0,05), entre o QI de Execu??o (QIE) e ?ndice Fatorial Velocidade de Processamento (IVP) em fun??o da modalidade de tratamento; QI Total, QIE e IVP em fun??o do n?vel de escolaridade dos pais; QIE, QIT, IVP e ?ndice Fatorial Resist?ncia ? Distra??o (IRD) em fun??o do tempo entre o diagn?stico e a avalia??o. Sugere-se o impacto tardio e progressivo da radioterapia sobre a subst?ncia branca e sobre a velocidade de processamento; crian?as cujos pais possuem maior n?vel de instru??o formal apresentam melhor capacidade intelectiva, sugerindo a influ?ncia de vari?veis s?cio-culturais sobre o desenvolvimento cognitivo. O impacto do c?ncer e seu tratamento sobre o desenvolvimento e a aprendizagem n?o deve ser subestimado. Tais resultados refor?am a necessidade de aprofundar a compreens?o sobre tais efeitos, visando propor estrat?gias terap?uticas que garantam, al?m da reabilita??o cl?nica, o pleno desenvolvimento das crian?as com esta patologia.

Made available in DSpace on 2014-12-17T15:38:52Z (GMT). No. of bitstreams: 1 EdianaROG_DISSERT.pdf: 2182777 bytes, checksum: a6c802e96d340606dfb3cbb335b79787 (MD5) Previous issue date: 2011-04-01 / The present work investigated the cognitive operation of children diagnosed with acute lymphoblastic leukaemia (ALL), accompanied at pediatric oncologic institutions at the city of Natal/RN. Had participated in this study twenty children, of both sexes, between six and twelve years old, with the ALL diagnostic, who were in treatment (n=10) and out of treatment for at least one year (n=10) and were submitted exclusively to chemotherapy as CNS prophylaxis. The utilized protocol of neuropsychological evaluation covered the following cognitive abilities: intellective capability, attentional and memory systems, and executive functions. Data was analyzed through descriptive and inferential measures, with the support of the Mann-Whitney U Test and T-test, considering the influence of the variables sex, age at diagnostic and the past time since the beginning of the treatment over children s performance. The intellective capability evaluation showed low score to the out-of-treatment groups, female and children under five years old to the diagnostic. In concern of attentional systems, groups showed the expected performance. In a relevant way, in the evaluation of executive functions, were found reduced scores within all groups, especially inside the in-treatment group. Memory evaluation pointed to reduced performance in items concerning to learning evolution and spontaneous evocation after interference to the several groups. It can be concluded, reffer to the occurrence of transitory and permanent impact associated to the intrusion of chemotherapic components during the maturational course of the CNS. It s expected that the present investigation and the development of similar studies enable major comprehension about the mode, extension and repercussion of these damages subsidizing the development of strategies which may minimize them and provide better xxiii life quality to this clinical subgroup / O presente trabalho investigou o funcionamento cognitivo de crian?as diagnosticadas com Leucemia Linf?ide Aguda (LLA) acompanhadas por institui??es oncol?gicas pedi?tricas no munic?pio de Natal/RN. Participaram deste estudo 20 crian?as diagnosticadas com LLA, de ambos os sexos, com idades entre seis e doze anos, que estavam em tratamento (n=10) e fora de tratamento h? pelo menos 1 ano (n=10), submetidas exclusivamente ? quimioterapia como profilaxia do SNC. O protocolo de avalia??o neuropsicol?gica utilizado contemplou as seguintes habilidades cognitivas: capacidade intelectiva, sistemas atencionais e de mem?ria e fun??es executivas. Os dados foram analisados atrav?s de medidas descritivas e inferenciais com o aux?lio do Teste U de Mann-Whitney e do Teste t, considerando-se a influ?ncia das vari?veis sexo, idade ao diagn?stico e tempo decorrido desde o in?cio do tratamento sobre o desempenho das crian?as. A avalia??o da capacidade intelectiva revelou baixas pontua??es para os grupos fora de tratamento, sexo feminino e crian?as menores de cinco anos ao diagn?stico. Quanto aos sistemas atencionais os grupos apresentaram desempenho dentro do esperado. De forma relevante, na avalia??o das fun??es executivas foram encontradas pontua??es reduzidas em todos os grupos, com destaque para o grupo em tratamento. A avalia??o da mem?ria indicou desempenho rebaixado em itens concernentes ? evolu??o da aprendizagem e evoca??o espont?nea ap?s interfer?ncia para os diversos grupos. Conclui-se que estas informa??es aludem ? ocorr?ncia de impactos transit?rios e permanentes associados ? intrus?o de componentes quimioter?picos no curso maturacional do SNC. Espera-se que a presente investiga??o e o desenvolvimento de estudos semelhantes possibilitem maior compreens?o acerca da modalidade, extens?o e repercuss?o de tais preju?zos, subsidiando o desenvolvimento de xxi estrat?gias que possam minimiz?-los e proporcionar maior qualidade de vida para este subgrupo cl?nico

Wenn das eigene Kind an Krebs erkrankt, werden die Eltern mit massiven organisatorischen und psychosozialen Belastungen konfrontiert. Die Frage nach der Situation der Väter wurde in wissenschaftlichen Untersuchungen dabei bisher vernachlässigt, in aktuellen Fachdiskussionen zeigt sie aber mehr und mehr Präsenz. Ziel dieser Studie ist deshalb, zu erforschen, wie Väter die Krebserkrankung und die damit verbundenen – oft stark veränderten – Lebensumstände erleben. Gleichzeitig liegt der Fokus auf dem (männlichen) Bewältigungsverhalten, woraus schließlich auf mögliche psychosoziale Unterstützungsleistungen geschlossen werden soll. Die Studie stützt sich dabei auf theoretische Grundlagen aus den Themenfeldern „Krebs im Kindes- und Jugendalter“, „Lebenssituation betroffener Familien“, „Väterforschung“ sowie „Bewältigung kritischer Lebensereignisse“. Die Forschungsarbeit umfasst vier Interviews, welche mit der Methode des Problemzentrierten Interviews nach Witzel erhoben wurden. Darunter befinden sich ein Vater, dessen Kind erfolgreich therapiert wurde, zwei Väter, deren Kinder sich seit über zwei Jahren in Behandlung befinden, sowie ein Vater, dessen Kind an der Krebserkrankung verstorben ist. Die Interviews wurden nach der Methode des zirkulären Dekonstruierens von Jaeggi, Faas und Mruck einer Auswertung unterzogen. Die Ergebnisse eröffnen einen vielseitigen Einblick in das Erleben und das Bewältigungsverhalten der interviewten Väter. Neben dem „Kampf“ als zentraler Umgangsform werden verschiedenste Lebensbereiche der Väter deutlich, welche durch die Krebserkrankung des Kindes negativen, aber auch positiven Änderungen unterliegen. Zudem konnten vielfältige Formen (männlicher) Bewältigung erarbeitet werden. Auch Aspekte, die den Bewältigungsprozess fördern bzw. hindern, wurden ersichtlich. Aus den Ergebnissen lässt sich schließen, dass Väter oftmals einer Vielzahl organisatorischer und psychosozialer Belastungen ausgesetzt sind. Spezifische psychosoziale Angebote für Väter eröffnen dabei die Möglichkeit einer gezielten Unterstützung im Bewältigungsprozess. / When their child becomes ill with cancer, parents suddenly have to deal with great organizational and psychosocial burdens. The question of the situation of fathers has been neglected in scientific research for a long time, but present technical discussions give this specific issue more and more weight. The aim of this qualitative study is to research how fathers experience their child‟s cancer and the personal circumstances which are associated with the illness. In addition the focus of the study is on how fathers deal with this critical life event. As a result of the analysis possible methods of psychosocial support shall be worked out. The study is based on theoretical foundations of the topic areas “cancer at the age of childhood and youth”, “life situation of affected families”, “research on fathers” and “theories on how to overcome with critical life events”. The study comprises four interviews with fathers. These interviews were conducted based on the method of problem focused interview from Witzel. The sampling includes one father, whose child was successfully cured, two fathers, whose children are in therapy since more than two years and one father, whose child died of cancer. The interviews were analyzed with the method of circular deconstruction from Jaeggi, Faas and Mruck. The results give a complex insight into how the interviewed fathers experienced the cancer of their child and how they cope with this illness and the resulting personal circumstances. The different areas of life which were changed negatively as well as positively are shown. Furthermore it becomes clear that besides other (male) coping strategies the father`s central way of mastering their fate is by “fighting”. Moreover the results show aspects which promote or stop the coping process. According to the results of this study there are a lot of organizational and psychosocial burdens on fathers who have a child with cancer. Specific psychosocial offers for fathers open up possibilities of a targeted support in the coping process.

Submitted by Erika Demachki (erikademachki@gmail.com) on 2015-11-13T19:23:03Z No. of bitstreams: 2 Dissertação - Lara Teixeira Karst - 2015.pdf: 5787814 bytes, checksum: 36f689efd5661110272211b3436617fa (MD5) license_rdf: 23148 bytes, checksum: 9da0b6dfac957114c6a7714714b86306 (MD5) / Approved for entry into archive by Erika Demachki (erikademachki@gmail.com) on 2015-11-13T19:29:28Z (GMT) No. of bitstreams: 2 Dissertação - Lara Teixeira Karst - 2015.pdf: 5787814 bytes, checksum: 36f689efd5661110272211b3436617fa (MD5) license_rdf: 23148 bytes, checksum: 9da0b6dfac957114c6a7714714b86306 (MD5) / Made available in DSpace on 2015-11-13T19:29:28Z (GMT). No. of bitstreams: 2 Dissertação - Lara Teixeira Karst - 2015.pdf: 5787814 bytes, checksum: 36f689efd5661110272211b3436617fa (MD5) license_rdf: 23148 bytes, checksum: 9da0b6dfac957114c6a7714714b86306 (MD5) Previous issue date: 2015-03-27 / Fundação de Amparo à Pesquisa do Estado de Goiás - FAPEG / This study concerns a Master’s research developed in the Post-Graduation Program of Music at the Universidade Federal de Goiás, following the research line of Music, Education, and Health. Considering the need for a multiprofissional action during palliative care, in the present study we seeked broader knowledge of home care music therapy for family caregivers of children under oncology palliative care in the late stages of the disease. The main goal was to know and analyze the sound and musical expressions of caregivers as well as understand the effects of music therapy on these subjects while caring for critically ill children. This is a qualitative research, presented as a study case. Data were collected by the researcher, who is a music therapist, through recordings and transcriptions of the music therapy sessions, which took place in the houses of caregivers of two children undergoing treatment in an oncology hospital in the municipality of Goiânia, GO. In data analysis, the expressions of the subjects were taken into consideration. To accomplish this, the theoretical reference and the analysis of the music therapy were crossed. Based on this study, we observed that music therapy alleviated caregivers’ anguish because it enabled the expression, through musical re-creation, of songs brought by them, and allowed the experience of playful situations together with their children. / Este trabalho refere-se a uma pesquisa de Mestrado desenvolvida no Programa de Pós- Graduação em Música da Universidade Federal de Goiás, na linha de pesquisa Música, Educação e Saúde. Considerando-se a necessidade de uma atuação multiprofissional nos cuidados paliativos, no presente estudo buscou-se ampliar os conhecimentos sobre a musicoterapia na assistência domiciliar aos cuidadores familiares de crianças em cuidados paliativos oncológicos em estágio avançado da doença. Teve-se por objetivo principal conhecer e analisar as expressões sonoro-musicais dos cuidadores e compreender os efeitos da musicoterapia sobre estes sujeitos durante a vivência dos cuidados com crianças gravemente enfermas. Trata-se de uma pesquisa qualitativa, na forma de estudo de caso. A coleta de dados foi realizada pela pesquisadora, que é musicoterapeuta, por meio de gravações e transcrições dos atendimentos musicoterapêuticos ocorridos na casa dos cuidadores de duas crianças em tratamento em um hospital oncológico da cidade de Goiânia, GO. Na análise dos dados, consideraram- se as expressões dos sujeitos. Para tanto, fez-se um cruzamento com o referencial teórico e a análise musicoterapêutica. Com base neste estudo, observou-se que a musicoterapia atuou no alívio das angústias dos cuidadores ao possibilitar a expressão, por meio da recriação musical, de canções trazidas por eles e ao proporcionar a vivência conjunta de situações lúdicas com suas crianças.

Wenn das eigene Kind an Krebs erkrankt, werden die Eltern mit massiven organisatorischen und psychosozialen Belastungen konfrontiert. Die Frage nach der Situation der Väter wurde in wissenschaftlichen Untersuchungen dabei bisher vernachlässigt, in aktuellen Fachdiskussionen zeigt sie aber mehr und mehr Präsenz. Ziel dieser Studie ist deshalb, zu erforschen, wie Väter die Krebserkrankung und die damit verbundenen – oft stark veränderten – Lebensumstände erleben. Gleichzeitig liegt der Fokus auf dem (männlichen) Bewältigungsverhalten, woraus schließlich auf mögliche psychosoziale Unterstützungsleistungen geschlossen werden soll. Die Studie stützt sich dabei auf theoretische Grundlagen aus den Themenfeldern „Krebs im Kindes- und Jugendalter“, „Lebenssituation betroffener Familien“, „Väterforschung“ sowie „Bewältigung kritischer Lebensereignisse“. Die Forschungsarbeit umfasst vier Interviews, welche mit der Methode des Problemzentrierten Interviews nach Witzel erhoben wurden. Darunter befinden sich ein Vater, dessen Kind erfolgreich therapiert wurde, zwei Väter, deren Kinder sich seit über zwei Jahren in Behandlung befinden, sowie ein Vater, dessen Kind an der Krebserkrankung verstorben ist. Die Interviews wurden nach der Methode des zirkulären Dekonstruierens von Jaeggi, Faas und Mruck einer Auswertung unterzogen. Die Ergebnisse eröffnen einen vielseitigen Einblick in das Erleben und das Bewältigungsverhalten der interviewten Väter. Neben dem „Kampf“ als zentraler Umgangsform werden verschiedenste Lebensbereiche der Väter deutlich, welche durch die Krebserkrankung des Kindes negativen, aber auch positiven Änderungen unterliegen. Zudem konnten vielfältige Formen (männlicher) Bewältigung erarbeitet werden. Auch Aspekte, die den Bewältigungsprozess fördern bzw. hindern, wurden ersichtlich. Aus den Ergebnissen lässt sich schließen, dass Väter oftmals einer Vielzahl organisatorischer und psychosozialer Belastungen ausgesetzt sind. Spezifische psychosoziale Angebote für Väter eröffnen dabei die Möglichkeit einer gezielten Unterstützung im Bewältigungsprozess. / When their child becomes ill with cancer, parents suddenly have to deal with great organizational and psychosocial burdens. The question of the situation of fathers has been neglected in scientific research for a long time, but present technical discussions give this specific issue more and more weight. The aim of this qualitative study is to research how fathers experience their child‟s cancer and the personal circumstances which are associated with the illness. In addition the focus of the study is on how fathers deal with this critical life event. As a result of the analysis possible methods of psychosocial support shall be worked out. The study is based on theoretical foundations of the topic areas “cancer at the age of childhood and youth”, “life situation of affected families”, “research on fathers” and “theories on how to overcome with critical life events”. The study comprises four interviews with fathers. These interviews were conducted based on the method of problem focused interview from Witzel. The sampling includes one father, whose child was successfully cured, two fathers, whose children are in therapy since more than two years and one father, whose child died of cancer. The interviews were analyzed with the method of circular deconstruction from Jaeggi, Faas and Mruck. The results give a complex insight into how the interviewed fathers experienced the cancer of their child and how they cope with this illness and the resulting personal circumstances. The different areas of life which were changed negatively as well as positively are shown. Furthermore it becomes clear that besides other (male) coping strategies the father`s central way of mastering their fate is by “fighting”. Moreover the results show aspects which promote or stop the coping process. According to the results of this study there are a lot of organizational and psychosocial burdens on fathers who have a child with cancer. Specific psychosocial offers for fathers open up possibilities of a targeted support in the coping process.

Contexte : De nos jours, la survie à 5 ans des enfants atteints d’un cancer dépasse les 80% en France, ce qui correspond à plus de 50 000 adultes guéris d’un cancer pédiatrique, mais la prévalence des complications à long terme dépasse 60% après un suivi de 30 ans. Dans cette thèse, nous nous sommes intéressés à deux problème de santé distincts : l’un grave et mortel, qui est le risque de cancer secondaire du sein – l’autre, morbide, altérant la qualité de vie et multifactoriel, qui est le risque d’une petite taille à l’âge adulte. Méthodes : L’approche fut différente, essentiellement descriptive avec une analyse de terrain, puis interventionnelle avec la mise en place d’un programme national de dépistage dans une population ciblée pour le cancer du sein secondaire – et analytique avec élaboration d’un modèle de prédiction du risque pour le risque d’une petite taille à l’âge adulte. La population étudiée fut en majeure partie celle de la cohorte française FCCSS, qui sont des adultes guéris d’un cancer pédiatrique solide et traités avant 2000, à laquelle se sont associés quelques centres pour la partie sur le cancer du sein.Résultats : Peu de femmes guéries d’un cancer dans l’enfance et dont le traitement comportait entre autres de la radiothérapie bénéficiaient d’un dépistage (21,2% et 15,4% avec des examens radiologiques). Une proportion importante de carcinomes infiltrants étaient agressifs avec 29% de tumeurs triple négatives. Sur un plan interventionnel, le programme DeNaCaPST a débuté il y a 18 mois et a été confronté au problème du suivi, et de la transition de ces adultes guéris. Concernant le risque de petite taille adulte, nous avons pu préciser que de faibles doses de radiothérapie reçues par l’hypophyse étaient un facteur de risque significatif, que ce risque augmentait avec la dose, qu’un grand champ sur la colonne était également un paramètre important. Etre petit et être jeune au diagnostic du cancer pédiatrique étaient deux facteurs de risque supplémentaires. Par ailleurs, nous avons découvert l’impact de deux molécules de chimiothérapie de la famille des alkylants : le busulfan et la lomustine. Conclusion : Les cancers du sein secondaires rappellent ceux survenant chez les femmes ayant une mutation constitutionnelle BRCA (âge de survenue, incidence cumulée à 50 ans, agressivité des cancers, taux de bilatéralité), ce qui a justifié l’élaboration d’un programme national, inspiré de celui pour les femmes à haut risque du fait d’une mutation génétique pour que « à risque égale, un dépistage égal ». Le réseau de prise en charge nécessaire se met progressivement en place, nécessitant plusieurs amendements au programme. Concernant le risque de petite taille à l’âge adulte, d’autres études sont nécessaires pour confirmer nos découvertes. / Background: Today, the five-year survival rate of children with cancer in France is over 80%, which corresponds to more than 50,000 adults cured of pediatric cancer, but the prevalence of long-term complications exceeds 60% after a 30-year follow-up. In this thesis, we focused on two distinct health problems: one serious and fatal, which is the risk of secondary breast cancer - the other morbid, affecting quality of life and multifactorial, which is the risk of a small height in adulthood. Methods: The approach was different, essentially descriptive with field analysis, followed by intervention with the implementation of a national screening program in a targeted population for secondary breast cancer - and analytical with the development of a risk prediction model for small height risk in adulthood. The population studied was mainly that of the French FCCSS cohort, which are adults cured of childhood solid cancer and treated before 2000, with which some centres have joined for the breast cancer part. Results: Few women cured of childhood cancer and whose treatment included radiotherapy were screened (21.2% and 15.4% with radiological examinations). A significant proportion of infiltrating carcinomas were aggressive with 29% of triple negative tumors. On an intervention level, the DeNaCaPST program began 18 months ago and faced the problem of follow-up and transition of these survivors.Concerning the risk of small adult size, we were able to specify that low doses of radiotherapy received by the pituitary gland were a significant risk factor that this risk increased with the dose, that a large field on the spine was also an important parameter. Being small and being young at diagnostic of childhood cancer were two additional risk factors. In addition, we discovered the impact of two chemotherapy molecules from the alkylant family: busulfan and lomustine. Conclusion: Secondary breast cancers are reminiscent of those occurring in women with a BRCA constitutional mutation (age of onset, cumulative incidence at 50 years, aggressiveness of cancers, bilaterality rate), which justified the development of a national program, inspired by that for women at high risk due to a genetic mutation so that "equal risk, equal screening". The necessary care network is gradually being set up, requiring several amendments to the program. Regarding the risk of small height in adulthood, further studies are needed to confirm our findings.

Das Neuroblastom ist ein vom sympathischen Nervensystem ausgehender neuroektodermaler maligner Tumor des Kleinkindesalters. Bei über 50% der Neuroblastom-Ersterkrankungen liegt bereits das disseminierte Stadium 4 vor, das eine infauste Prognose hat. Eine wirksame Behandlung des Stadium 4 Neuroblastoms stellt deshalb nach wie vor eine der größten Herausforderungen der pädiatrischen Onkologie dar: Die Gesamtüberlebensrate von 20-25% der Kinder, die an dieser bösartigen Krankheit leiden, konnte während der letzten zwei Jahrzehnte trotz neuer Chemotherapie-Protokolle nicht wesentlich verbessert werden. Aus diesem Grund gibt es zunehmend Bestrebungen sich um Therapiealternativen zu bemühen. In dieser Arbeit werden die derzeit möglichen immunologischen Strategien zur Behandlung des Neuroblastoms abgehandelt. / Neuroblastoma is a neuroectodermal malignancy of early childhood derived from sympathetic nervous tissue. At initial diagnosis over 50% of patients present with disseminated stage 4 disease which has a dismal prognosis. Effective treatment of patients with stage 4 neuroblastoma remains a major challenge in pediatric oncology. Despite novel therapeutic approaches including chemotherapy and autologous stem cell transplantation the overall survival rate of only 20-25% did not improve over the last two decades. Therefore, a lot of effort has been made to develop novel alternative therapies. This thesis summarizes possible immunotherapeutic strategies for the treatment of neuroblastoma.