Thesis (Ph. D.)--Ohio State University, 2008. / Title from first page of PDF file. Includes bibliographical references (p. 168-178).

Youth disaffection is associated with huge personal and social costs, with future trajectories typically marked by school exclusion, poverty, unemployment, youth offending, and substance abuse. Core theoretical frameworks including perspectives concerning self-determination, self-discrepancy, and achievement motivation provide explanations for the role of social-environment factors, self-concepts and cognitions in human motivation. However, there has been little work to integrate these theories into a nuanced account of the socio-motivational processes underpinning school disaffection, and our understanding of how interventions may work to re-direct the negative trajectories remains weak. This thesis includes four papers reporting on a programme of theoretical and empirical research conducted in order to address this gap in knowledge. The first, a theoretical paper, presents an integrated model of the development of school disaffection in which multiple self-construals play a key role in bridging the gap between need fulfilment and cognitive and behavioural indicators of school disaffection. The second paper reports on a thematic analysis of extensive semi-structured individual interviews with school-excluded young people and practitioners working with them. In accordance with our theoretical model, the accounts of the young people‟s emotional and behavioural profiles in achievement contexts were connected to need-thwarting social experiences, with maladaptive constructions of multiple selves appearing to mediate the relationship between these factors. The third paper presents an analysis of quantitative survey data with school-excluded and mainstream secondary school pupils that investigated the direct and mediated pathways between key processes identified by our model. Results showed that pathways between key variables were moderated by the experience of exclusion such that distinct pathways emerged for excluded and non-excluded pupils. The final paper reports on an in-depth, longitudinal, idiographic study exploring the impact of theatre involvement on marginalised young people. Results from an interpretative phenomenological analysis of interview transcripts suggested that the nurturing, creative environment of the theatre project provided optimal conditions for promoting resilience and self-development in youth at risk. Together, the findings from this programme of research highlight the crucial role played by social experiences in the development of school disaffection via the impact on self-construals, motivation and achievement goals, as well as the role they can play in supporting young people to create more positive life trajectories. This body of work has implications for further research and also carries practical implications for interventions and school-based practices seeking to both support school-disaffected children, and increase engagement in those at risk of school disaffection.

En investissant des dispositifs dédiés à la prise en charge des adolescents et jeunes adultes atteints de cancer en France (« AJA », 15-25 ans), cette thèse étudie les pratiques de personnalisation des soins. Les programmes personnalisés prévoient d’accompagner le processus d’autonomisation de ces jeunes malades, lors de cette période de la vie perçue comme située entre l’enfance et l’âge adulte. Comment cette considération structure-t-elle l’expérience que les jeunes font de la maladie et des soins ? Quelles formes particulières les injonctions d’autonomie prennent-elles ? L’enquête de terrain s’appuie sur quinze entretiens semi-directifs menés avec des professionnels dédiés aux « AJA » en France et en Angleterre, ainsi que sur une trentaine d’entretiens conduits avec des jeunes, leurs proches et leurs soignants au cours de deux observations participantes : l’une de cinq mois effectuée en tant qu’animateur dans la première unité française dédiée à cette population clinique à l’hôpital Saint-Louis, la seconde de deux mois en tant que socio-anthropologue au sein du programme « AJA » de Gustave Roussy. L’analyse du matériel recueilli démontre en premier lieu que la catégorie « AJA » est tributaire d’un processus de biomédicalisation. Elle met ensuite en évidence la présence de normes organisationnelles et psychosociales qui encadrent l’accompagnement de l’autonomie des « AJA ». En mobilisant le modèle de la reconnaissance, la thèse développe alors le concept d’idéologie de la personnalisation des soins pour proposer une interprétation renouvelée des situations observées, et interroger la production de vulnérabilités identitaires pour les sujets du soin. / This thesis examines the practices of care personalization through the study of units dedicated to the care of teenagers and young adults with cancer in France (“TYA”, 15-25 years). The personalized programs are designed to support the process of autonomy of these young patients, during this period of life perceived as being between childhood and adulthood. How can this consideration structure these young people’s experience of the disease and care ? Which forms do the injunctions to autonomy take ? The ethnographic survey is based on fifteen semi-structured interviews carried out by professionals dedicated to «TYA» in France and England, and on thirty interviews conducted with young people, their families and their caregivers during two participant observations : the first over five months, carried out as an activity-coordinator in the first French unit dedicated to this population at the Saint-Louis hospital, and the second over two months, as a socio-anthropologist within the Gustave Roussy «TYA» program. The analysis of the information collected demonstrates first of all that the «TYA» category is dependent on a biomedicalization process. It then highlights the existence of organizational and psychosocial norms which formalize support of the «TYA» autonomy. By mobilizing the recognition theory, the thesis finally develops the concept of ideology of the personalization of care to propose a reinterpretation of observed situations, and to question the production of identity vulnerabilities for the subjects of care.

Introduction: Little is known about the aetiology of cancer in teenagers and young adults (TYA) aged 15-24 years, although in England, cancer is the most common cause of disease-related mortality in this age group. The most common cancers at this age are lymphomas, central nervous system (CNS) tumours and germ cell tumours (GCT). The commonest carcinomas seen at older ages including lung, breast, large bowel and prostate account for only 3-4% of TYA cancers. In this thesis I describe the incidence patterns of selected cancers in TYA and the variation seen with geography, time and in population subgroups. The focus is on CNS tumours, GCT and bone tumours as they either peak in incidence in TYA and/or contribute disproportionately to cancer related mortality in TYA. This will allow formulation of hypotheses regarding aetiology of cancer in this age group which can then be tested by further research. Methods: For the majority of the analysis, anonymised national cancer registration data from England on individual patients of all ages with newly diagnosed cancer between 1979 and 2003 were used. To contrast the incidence patterns in England with that of India, data from five Indian urban population based cancer registries were used for part of the analysis. Age, sex, site and histology specific incidence rates were calculated and expressed per million person years. All rates, where appropriate, were adjusted to the world standard population using direct methods. To explore the link of growth with development of osteosarcoma and Ewing sarcoma, a random-effects meta-analysis was undertaken on studies which investigated an association of these tumours with height at diagnosis. Results: The incidence of cancer in TYA overall in England exceeded that of India. This was also true for most individual sites including epithelial cancers of lung, colon/rectum, breast, ovary and cervix, and non-epithelial cancers including melanoma, Hodgkin lymphoma and testicular cancer. Notable exceptions to this pattern were cancers of the mouth, gall bladder and stomach (females only) where incidence was higher in India. In England, CNS tumours in TYA were a composite of pilocytic astrocytomas and embryonal tumours (representing tail end of childhood CNS tumours), pituitary tumours, nerve sheath tumours, high grade astrocytomas and meningiomas (representing early-onset of CNS tumours that peak in incidence in the 6th and 7th decade of life), and of CNS GCTs, pleomorphic xanthoastrocytomas and neurocytomas which show a peak incidence in TYA. Irrespective of site or histology, GCT in England showed a peak in incidence between ages of 10 to 39 years which was more marked in males. This however varied by site and the peak incidence was seen at 10 to 14 years in the CNS, 15 to 19 years in ovary, 25 to 29 in mediastinum & thorax and abdomen & pelvis, and 30 to 34 years in testicular tumours. Osteosarcoma and Ewing sarcoma were the predominant bone tumours in TYA in England and showed a distinct peak of incidence at 10 to 14 years age in females and a larger peak at 15 to 19 years age in males. The peak incidence of osteosarcoma of long bones of the lower limb was six times more than that at any other site while the peak incidence of Ewing sarcomas located in the bones of the central axis exceeded those in long bones of the lower limb. The average height of patients with osteosarcoma at diagnosis was found to be significantly above the average height of the reference population, at the 95% level. The association of greater height at diagnosis with Ewing sarcoma was also significant at the 95% level but much weaker. Conclusion: In this thesis I have explored the epidemiology of cancer in TYA using some of the established methodologies which have previously been used in advancing our knowledge of childhood and older adult cancers. These studies provide some clues to aetiology. Variation in environmental exposures and lifestyle factors between England and India can explain the majority of the differences in incidence patterns observed. Genetic predisposition to cancer along with carcinogen exposure could lead to early onset of some cancers generally seen in older adults. Regardless of site, the similarity in age-incidence patterns of GCT, suggests a common initiation of these tumours in embryonic/foetal life with variable rates of tumour progression as a result of local factors or events during postnatal and pubertal period. The incidence patterns of osteosarcoma along with the strong and consistent association with a greater height at diagnosis indicate that bone growth is important in the development of this tumour while different biological pathways which may be unrelated to growth could also be relevant for Ewing sarcoma.