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Résumé
Introduction : L’adolescence est une période d’entre-deux, ce qui demande une prise en charge adaptée à ce stade de développement spécifique [1,2]. C’est pourquoi, en termes de maladies chroniques, il émerge depuis quelques années le concept de transition, c’est-à-dire un processus de passage du service de pédiatrie au service de soins adultes [3]. Néanmoins, en Belgique, il subsiste des services prenant en charge des maladies rares, dans lesquels il n’y a pas de passage en service de soins adultes. C’est le cas du service Pinocchio. Beaucoup d’acteurs sont essentiels à une transition optimale dont les parents [4,5]. Cette situation particulière nous a amenés à nous interroger sur le rôle des parents dans le processus d’autonomisation du jeune, lorsqu’il restera pris en charge, dans le même service et par la même équipe, à l’âge adulte. L’objectif de cette étude est d’explorer comment est perçu le rôle du parent dans le processus empowerment des adolescents, par les parents eux-mêmes et les soignants du centre dans lequel ils sont pris en charge, afin d’adapter la prise en charge des parents grâce à l’éducation thérapeutique du patient.
Matériel et méthodes : Cette recherche adopte une approche qualitative. Le design sélectionné est la théorisation ancrée. Les données ont été collectées sous forme d’entretiens semi-structurés sur base d’un guide d’entretien auprès de 15 parents d’adolescents atteints d’une maladie chronique métabolique rare et auprès des 6 soignants du centre dans lequel ils étaient pris en charge. L’exploration porte sur le rôle perçu des parents dans le processus d’empowerment des adolescents.
Résultats : Les résultats appuient l’importance du rôle de soutien des parents mais mettent également en évidence l’importance de promouvoir l’équilibre de la relation adolescents-parents. Le régime inhérent aux maladies métaboliques rares impacte cette relation adolescents-parents en raison des représentations propres à chacun et constitue un véritable terrain de mise en place de l’éducation thérapeutique. Conclusion : Les parents sont des acteurs essentiels à l’adhésion au traitement mais ils semblent aveuglés par leurs représentations. Il apparait élémentaire de s’attarder à ces dernières avec leurs sources afin d’adapter la prise en charge.
Mots-clés: Maladie chronique, Empowerment en santé, Prise en charge des adolescents, Prise en charge des parents, Éducation thérapeutique du patient. Abstract 
Introduction: Adolescence is an in-between period which requires a management adapted to this specific development stage [1,2]. This is the reason why, in terms of chronic diseases, the concept of transition has emerged in recent years, i.e. a process of moving from the pediatric department to the adult care department [3]. Nevertheless, in Belgium, there are still departments for rare diseases where there is no transition to adult care. This is the case of Pinocchio department. Many actors are essential for an optimal transition, including the parents [4,5]. This particular situation led us to wonder about the role of parents in the process of empowerment of the young person when he/she remains in charge of the same department and of the same team in adulthood. The aim of this study is to explore how the role of the parents in the empowerment process of adolescents is felt by the parents themselves and the caregivers of the center in which they are cared for, in order to adapt parental care through a therapeutic patient education.
Material and methods: This research adopts a qualitative approach and the selected design is Grounded Theory. Data were collected in the form of semi-structured interviews based on an interview guide with 15 parents of adolescents with a rare chronic metabolic disease and with 6 caregivers of the center where they were cared for. The exploration is focused on the perceived role of the parents in the adolescent empowerment process.
Results: The results focus on the importance of the supportive role of parents but also highlight the importance of promoting balance in the adolescent-parent relationship. The way of life inherent to rare metabolic diseases impacts this adolescent-parent relationship because of the representations specific to everyone and constitutes a real ground for the implementation of therapeutic education.
Conclusion: Parents are key players in adherence to treatment but they seem blinded by their representations. It looks elementary to focus on these representations with their sources in order to adapt the management.

Empowerment en santé --- Prise en charge des parents --- Prise en charge des adolescents --- Éducation thérapeutique du Patient --- Chronic Disease --- Health empowerment --- Adolescents Care --- Parental care --- Therapeutic Patient Education --- Sciences de la santé humaine > Endocrinologie, métabolisme & nutrition

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Advances in the Study of Behavior was initiated over 40 years ago to serve the increasing number of scientists engaged in the study of animal behavior. That number is still expanding. This thematic volume makes another important ""contribution to the development of the field"" by bringing together material that aggregates studies conducted on the behavior of tropical animals. Advances in the Study of Behavior is now available online at ScienceDirect--full-text online from volume 30 onward.

Parental behavior in animals --- Care of the young (Animal behavior) --- Maternal behavior in animals --- Parental care in animals --- Parenting in animals --- Paternal behavior in animals --- Paternalism in animals --- Animal behavior --- Cooperative breeding in animals --- Animal behavior. --- Human behavior. --- Psychology, Comparative. --- Behavior. --- Animaux --- Comportement humain --- Psychologie comparée --- Mœurs et comportement --- Maternal Behavior --- Paternal Behavior --- Animals

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In this natural history of primate parenting, Smith compares parenting by nonhuman and human primates. In a narrative rich with vivid anecdotes derived from interviews with primatologists, from her own experience breeding cottontop tamarin monkeys for over thirty years, and from her clinical psychology practice, Smith describes the ways that primates care for their offspring, from infancy through young adulthood.

Parenting. --- Primates --- Parental behavior in animals. --- Care of the young (Animal behavior) --- Maternal behavior in animals --- Parental care in animals --- Parenting in animals --- Paternal behavior in animals --- Paternalism in animals --- Animal behavior --- Cooperative breeding in animals --- Parent behavior --- Parental behavior in humans --- Child rearing --- Parent and child --- Parenthood --- Behavior.

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Cooperative breeders are species in which individuals beyond a pair assist in the production of young in a single brood or litter. Although relatively rare, cooperative breeding is widespread taxonomically and continues to pose challenges to our understanding of the evolution of cooperation and altruistic behavior. Bringing together long-term studies of cooperatively breeding birds, mammals, and fishes, this volume provides a synthesis of current studies in the field. The chapters are organised by individual studies of particular species or (in the case of mole-rats) two closely related cooperatively breeding species. Each focuses not only on describing behavior and ecology but also on testing evolutionary hypotheses for the form and function of the diverse and extraordinary cooperative breeding lifestyles that have been discovered. This unique and comprehensive text will be of interest to graduate students and researchers of behavioral ecology and the evolution of cooperation.

Parental behavior in animals. --- Animal societies. --- Social behavior in animals --- Care of the young (Animal behavior) --- Maternal behavior in animals --- Parental care in animals --- Parenting in animals --- Paternal behavior in animals --- Paternalism in animals --- Animal behavior --- Cooperative breeding in animals --- Parental behavior in animals --- Animal societies --- Comportement parental chez les animaux --- Sociétés animales

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Birds --- Animal ethology and ecology. Sociobiology --- Parental behavior in animals --- 598.2 --- 591.56 --- Care of the young (Animal behavior) --- Maternal behavior in animals --- Parental care in animals --- Parenting in animals --- Paternal behavior in animals --- Paternalism in animals --- Animal behavior --- Cooperative breeding in animals --- Behavior --- Aves. Birds in general. Ornithology --- Provision for posterity. Care of young. Brood care --- Animal behavior. --- Parental behavior in animals. --- Behavior. --- 591.56 Provision for posterity. Care of young. Brood care --- 598.2 Aves. Birds in general. Ornithology