70 research outputs found
Naturschutz und Schutzgebiete auf Kuba
Seit der Teilnahme Kubas an der Konferenz von RĂo 1992 und mitbestimmt durch die weltpolitischen VerĂ€nderungen ist in der aktuellen kubanischen Umweltpolitik eine Umorientierung unter BerĂŒcksichtigung des Nachhaltigkeitsprinzips in allen Dimensionen zu beobachten. Die Dissertation gibt einleitend einen Ăberblick ĂŒber die aktuellen Entwicklungen in der kubanischen Umweltpolitik. Weiter wird das im Rahmen des genannten Reformkurses im Jahre 1999 eingerichtete landesweite System von Schutzgebieten (Sistema Nacional de Ăreas Protegidas â SNAP) eingehend analysiert. Das Hauptaugenmerk liegt dabei auf den 14 Nationalparks des Landes.
Diese dienen nach dem Gesetz zum SNAP zwei Hauptzielen, dem Naturschutz und der öffentlichen Nutzung. Bei der öffentlichen Nutzung werden Umweltbildung, dabei vorrangig die der eigenen Bevölkerung, Ăffentlichkeitsarbeit und, entsprechend der Entwicklungspolitik des Landes, internationaler Tourismus unterschieden.
In einzelnen Fallstudien werden zwei ausgewĂ€hlte Nationalparks auf Kuba, der Alexander von Humboldt-Nationalpark (Ostkuba) und der Nationalpark Viñales (Westkuba), zunĂ€chst naturrĂ€umlich und sozioökonomisch charakterisiert. In einem komparativen Ansatz werden die beiden HauptaktivitĂ€ten des Nationalparkmanagements in den Untersuchungsgebieten, Tourismus und Umweltbildung, gegenĂŒbergestellt. Die politischen und ökonomischen Rahmenbedingungen, welche in dieser Arbeit den Fallstudien vorangestellt erörtert werden, sind dabei fĂŒr jede der beiden Schutzgebietsverwaltung gleich. Die SpielrĂ€ume des Managements bei der Realisierung ihrer AktivitĂ€ten werden jedoch unterschiedlich genutzt. Die dabei auftretenden Probleme stehen im Zusammenhang mit der finanziellen Situation der Schutzgebiete aber auch mit inhaltlichen bzw. organisatorischen MĂ€ngeln. Die im Rahmen der Dissertation formulierten handlungsorientierten Empfehlungen tragen zur Problemlösung in den untersuchten Nationalparks bei.
Durch das Management des Nationalparks sollen ErtrĂ€ge aus dem Schutzgebiet auch den Gemeinden des direkten Umlandes bzw. der Region zu Gute kommen. Um dies zu erreichen, ist ein effektives Nationalparkmanagement unbedingt notwendig. Die Basis fĂŒr ein modernes professionelles Schutzgebietsmanagement bilden Monitoringsysteme fĂŒr die ManagementeffektivitĂ€t. Die World Commission on Protected Areas (WCPA) verfĂŒgt ĂŒber ein entsprechendes Rahmenwerk zur EffektivitĂ€tsbewertung, welches in der vorliegenden Arbeit auf die beiden kubanischen Untersuchungsgebiete angewendet wurde, deren Administrationen bislang nicht mit solchen Bewertungssystemen arbeiten. FĂŒr beide untersuchten Nationalparks sind darauf basierend Handlungsempfehlungen fĂŒr das allgemeine Schutzgebietsmanagement erarbeitet worden. Die Demonstration der NĂŒtzlichkeit von Monitoringsystemen fĂŒr die ManagementeffektivitĂ€t im Rahmen der vorliegenden Arbeit leistet hierbei einen Beitrag zur Professionalisierung des handlungsorientierten Nationalparkmanagements in den Untersuchungsgebieten
Front Psychol
BackgroundCancer diagnosis and treatment represent a real upheaval both for the patient and for his or her life partner. Adjustment to cancer has been widely studied at the individual level, however, there is little in the literature about the experiences of the couple as an entity. This is especially true with regard to a population facing advanced cancer. This systematic review aimed to make an inventory of 1) the current knowledge relating to the experience of the patient-partner dyad when confronted with advanced cancer, and 2) the psychosocial interventions specifically centered on this dyad.MethodThis review was conducted using the Cochrane methodology. The eligibility criteria for the literature review were: one of the members of the dyad being treated for advanced cancer, dyad composed of the patient and his/her life partner. Databases from PubMed, PsycArticle, PsycInfo, Psychology and Behavioral Sciences Collection and Scopus were investigated. A thematic content analysis on the basis of admitted articles made it possible to respond to each of our research objectives.ResultsThree hundred eighty-nine citations were found. Twenty were admitted to the systematic review of the literature. It highlighted the following experiences of the advanced cancer patient-life partner dyad: uncertainty about the future, disjointed time, intrusion into the couple's intimacy, attachment style and caregiving within the couple, couple's adjustment to cancer symptomatology, the couple's supportive care needs, role changes, nature of communication within the couple, anticipation of the coming death, and the meanings and beliefs around death. This review also describes the range of couple therapies used in the context of advanced cancer: emotionally focused-couple therapy, existential therapy, art therapy, support therapy and couple communication and intimacy promotion. These therapies seem to have individual beneficial effects for both the patient and his or her life partner as well as improving marital functioning.ConclusionsThese results clearly highlight that consideration of the couple and communication within the couple during care are fundamental to dyadic adjustment to advanced cancer. Further studies (qualitative and quantitative) are needed to better understand the couple's experience in order to adapt the management of the couple facing advanced cancer
Lâempereur au-delĂ du fleuve
AprĂšs la prise de Constantinople par la quatriĂšme croisade le 13 avril 1204, Robert de Clari, humble chevalier picard et tĂ©moin des Ă©vĂ©nements, raconte comment les croisĂ©s, sous la conduite du nouvel empereur latin Baudouin Ier de Constantinople, auraient « conquis grant partie de le tere et bien soisante chitĂ©s, estre lez castiaus et les viles hors ». Cependant, quelques mois plus tard, Geoffroy de Villehardouin, lâun des barons de la croisade devenu marĂ©chal de Romanie, livre un tableau bi..
Structure-activity relationships in drug allergy
Les relations structure-activitĂ© (RSA) dĂ©signent la relation entre structure chimique et activitĂ© pharmacologique pour une sĂ©rie de composĂ©s (IUPAC, 1998). Elles ont Ă©tĂ© utilisĂ©es dans les industries pharmaceutique, chimique et cosmĂ©tique, tout particuliĂšrement pour la conception de nouvelles entitĂ©s chimiques et mĂ©dicamenteuses. AprĂšs une revue de la littĂ©rature, nous avons Ă©tudiĂ© les RSA en allergie mĂ©dicamenteuse immĂ©diate pour 4 classes thĂ©rapeutiques (antibiotiques bĂȘta-lactames, produits de contraste IRM, curares, insuline) ainsi qu'en allergie mĂ©dicamenteuse retardĂ©e (iodixanol, produit de contraste iodĂ©) en nous basant sur les rĂ©sultats des tests cutanĂ©s et biologiques. Les rĂ©sultats obtenus dĂ©montrent qu'il existe un lien entre structure chimique et potentiel allergĂ©nique des molĂ©cules. Les RSA permettent : (1) l'identification des dĂ©terminants allergĂ©niques sur la base de l'Ă©tude des rĂ©activitĂ©s croisĂ©es, (2) la prĂ©diction de la probabilitĂ© de rĂ©actions d'hypersensibilitĂ© aux molĂ©cules apparentĂ©es et la sĂ©lection d'alternatives thĂ©rapeutiques de maniĂšre non-empiriqueStructure-Activity Relationships (SAR) refer to the relation between chemical structure and pharmacological activity for a series of compounds (IUPAC, 1998). They have been used in the pharmaceutical, chemical and cosmetic industries, especially for drug and chemical design purposes. After reviewing literature data, we describe SAR-based approaches based on skin and laboratory tests in immediate drug hypersensitivity (beta-lactam antibiotics, MRI contrast agents, neuromuscular blocking agents, insulin) as well as in delayed drug hypersensitivity (iodixanol, iodinated contrast media). Our findings demonstrate a link between chemical structure and allergenic potential of a molecule. Structure-activity relationships can prove useful to: (i) identify allergenic determinants on the basis of cross-reactivity studies, (ii) predict the likelihood of hypersensitivity reactions to related molecules and select safe alternatives on a non-empirical basi
Etude des relations structure-activité en allergie médicamenteuse
Structure-Activity Relationships (SAR) refer to the relation between chemical structure and pharmacological activity for a series of compounds (IUPAC, 1998). They have been used in the pharmaceutical, chemical and cosmetic industries, especially for drug and chemical design purposes. After reviewing literature data, we describe SAR-based approaches based on skin and laboratory tests in immediate drug hypersensitivity (beta-lactam antibiotics, MRI contrast agents, neuromuscular blocking agents, insulin) as well as in delayed drug hypersensitivity (iodixanol, iodinated contrast media). Our findings demonstrate a link between chemical structure and allergenic potential of a molecule. Structure-activity relationships can prove useful to: (i) identify allergenic determinants on the basis of cross-reactivity studies, (ii) predict the likelihood of hypersensitivity reactions to related molecules and select safe alternatives on a non-empirical basisLes relations structure-activitĂ© (RSA) dĂ©signent la relation entre structure chimique et activitĂ© pharmacologique pour une sĂ©rie de composĂ©s (IUPAC, 1998). Elles ont Ă©tĂ© utilisĂ©es dans les industries pharmaceutique, chimique et cosmĂ©tique, tout particuliĂšrement pour la conception de nouvelles entitĂ©s chimiques et mĂ©dicamenteuses. AprĂšs une revue de la littĂ©rature, nous avons Ă©tudiĂ© les RSA en allergie mĂ©dicamenteuse immĂ©diate pour 4 classes thĂ©rapeutiques (antibiotiques bĂȘta-lactames, produits de contraste IRM, curares, insuline) ainsi qu'en allergie mĂ©dicamenteuse retardĂ©e (iodixanol, produit de contraste iodĂ©) en nous basant sur les rĂ©sultats des tests cutanĂ©s et biologiques. Les rĂ©sultats obtenus dĂ©montrent qu'il existe un lien entre structure chimique et potentiel allergĂ©nique des molĂ©cules. Les RSA permettent : (1) l'identification des dĂ©terminants allergĂ©niques sur la base de l'Ă©tude des rĂ©activitĂ©s croisĂ©es, (2) la prĂ©diction de la probabilitĂ© de rĂ©actions d'hypersensibilitĂ© aux molĂ©cules apparentĂ©es et la sĂ©lection d'alternatives thĂ©rapeutiques de maniĂšre non-empiriqu
Powerâs metamorphoses. Aristocracy's political practices, languages, and conceptions in Latin Romania (1204-1316)
Ce travail vise Ă analyser la maniĂšre dont les seigneurs latins installĂ©s dans les territoires byzantins Ă lâissue de la QuatriĂšme croisade ont adaptĂ© leurs maniĂšres de gouverner Ă un nouvel environnement politique et culturel. Il porte sur un groupe de 422 individus, allant des empereurs de Constantinople jusquâaux modestes chevaliers nâayant que leur Ă©quipement militaire ainsi que les ressources dĂ©mographiques et Ă©conomiques nĂ©cessaires Ă leur entretien. Le point commun de ces individus est de se revendiquer dâun mĂȘme groupe social, Ă savoir lâaristocratie, qui se dĂ©finit avant tout par sa prĂ©tention et sa capacitĂ© Ă dominer le reste de la sociĂ©tĂ©. Ce groupe social fonde sa cohĂ©rence et sa cohĂ©sion sur un ensemble de maniĂšres dâĂȘtre, de faire et de penser visant Ă lĂ©gitimer sa domination. Ceci Ă©tant, il est structurĂ© par une forte hiĂ©rarchie interne au sommet de laquelle est promu un petit nombre de familles tirant les fruits de la croisade. Ces seigneurs implantĂ©s en Romanie entendent reprendre le flambeau du gouvernement de lâempire byzantin dans une perspective universaliste. Aussi est-il question dans cette Ă©tude de la majeure partie de cet espace, Ă savoir le domaine impĂ©rial â autour de Constantinople, en Thrace et au nord-ouest de lâAsie mineure â, le royaume de Thessalonique, les seigneuries dâAthĂšnes et de NĂ©grepont, ainsi que la principautĂ© de MorĂ©e. LâĂ©tude de cette domination aristocratique dĂ©bute en 1204, avec la conquĂȘte de Constantinople, et se poursuit jusquâen 1316, alors que les possessions latines ont pour la plupart Ă©tĂ© reconquises et que la MorĂ©e nâest dĂ©sormais plus gouvernĂ©e par un prince prĂ©sent sur place mais passe entiĂšrement sous administration indirecte de la cour angevine de Naples. Au fil de ce long XIIIe siĂšcle, lâaristocratie latine dĂ©ploie des pratiques de gouvernement venues dâOccident et transforme en consĂ©quence les structures politiques ainsi que lâorganisation territoriale des anciens territoires byzantins. En effet, Ă partir de 1204, le groupe dominant en Romanie est imprĂ©gnĂ© des codes et imaginaires de la chevalerie en vertu desquels ses membres imposent leur domination par divers usages de la violence, par un nouvel exercice de la justice et par un subtil jeu de postures et de reprĂ©sentations de soi. En outre, cette aristocratie chevaleresque fait valoir son autoritĂ© dans lâespace au moyen de chevauchĂ©es et de la multiplication des constructions castrales qui refaçonnent les terres dâempire. Pour autant, les seigneurs latins rĂ©cupĂšrent aussi une partie de lâhĂ©ritage byzantin et sâadaptent aux sociĂ©tĂ©s quâils prĂ©tendent dominer quand cela peut servir leur hĂ©gĂ©monie. Ă Constantinople, ils se montrent particuliĂšrement soucieux de perpĂ©tuer une tradition impĂ©riale qui ne leur est pas Ă©trangĂšre mais qui rĂ©pond Ă leurs idĂ©aux de « res publica », au service du salut de tous les chrĂ©tiens. Dans cette optique, ils mettent Ă©galement en place des dispositifs pour gouverner de maniĂšre collective dans lesquels sont impliquĂ©s des individus pouvant se revendiquer barons. Ces dispositifs, dĂ©jĂ existants en Occident â comme la tenue de conseils ou les procĂ©dures Ă©lectorales â, connaissent un nouvel Ă©panouissement en Romanie. Ils contribuent Ă Ă©quilibrer les rapports de pouvoir entre les souverains â empereurs, rois et princes â et le groupe baronnial qui les entoure. Enfin, dans la mesure oĂč les seigneurs latins de Romanie sont au dĂ©part des croisĂ©s, ces derniers remobilisent activement par la suite les gestes et imaginaires de la croisade, entretenant tout particuliĂšrement le souvenir des premiers croisĂ©s et des rois de JĂ©rusalem comme des modĂšles politiques Ă imiter. Lâimplantation de pratiques venues tout Ă la fois de lâOccident et de lâOrient latin dans un environnement impĂ©rial et grec en MĂ©diterranĂ©e centrale a ainsi produit une nouvelle culture dominante. De la sorte, ces transferts culturels ont durablement transformĂ© une partie des structures et reprĂ©sentations du pouvoir dans cette rĂ©gion.This work deals with the Latin lords who took power in Byzantium after the Fourth Crusade. It investigates how these lords adapted their governing style to a new political and cultural environment. Our study will follow a group of 422 individuals, ranging from the Constantinopolitan emperors to the humblest knights having only the economic means to maintain their military equipment. All these people considered themselves as belonging to the same social group â the aristocracy with the aim and ability to dominate the rest of the society. This social groupâs coherence was based on various ways of being, behaving and thinking as aristocrats, in order to legitimate its domination. However, the aristocracy also had a strong sense of internal hierarchy. Indeed, only a few families had risen to the top of this hierarchy, mainly due to the benefits of the crusade. These Latin lords based in Romania considered themselves as the successors of the Byzantine Empire and took over the government of the Byzantium territories, and even beyond. Thus, in this study we focus on the imperial domain around Constantinople (in Thrace and in northwest Asia Minor), on the Kingdom of Thessalonica, on the lordships of Athens and Negroponte and on the Principality of Morea. Our analysis begins in 1204 with the conquest of Constantinople and ends in 1316. At that time, most of the Latin possessions had been reconquered by the Byzantines and the Morea was no longer ruled by a prince in situ, but from afar by the Angevine court of Naples. Throughout this long 13th century, the Latin aristocrats imported new ways of governing from the West, which altered the political structures in Byzantium and the territorial organization of former Byzantine territories. Indeed, the new dominant group was imbued with the values and the representations of the western chivalry. The knights had to rule using different forms of violence and a new sort of justice to solve conflicts. Similarly, their social superiority was subtly reflected through various kinds of self-representation. Moreover, this aristocratic chivalry showed its authority by horse-riding and building castles so that Byzantine territories changed from a geographical point of view. Conversely, the Latin lords appropriated some elements of the Byzantine political legacy. Furthermore, they pragmatically adapted to the societies they ruled when it was useful for their political hegemony. In Constantinople, they perpetuated an imperial tradition which was not unknown to them but which, on the contrary, matched with their ideals of âres publicaâ with the perspective of common good for all the Christians under their control. In this respect, Latin lords also established collective political measures, allowing each lord to partake in the government, especially the Latin barons. These measures already existed in the West: for example, the councils between lords or the elections of a new ruler. They arose anew in Romania, bringing political balance in the relationships between the barons and the sovereigns (princes, kings, and emperor) for the governing of Romania. Lastly, as the Latin lords settled in Byzantium as victorious crusaders, they actively revitalised crusading gestures and representations which began during the First Crusade. They especially drew their inspiration from the first crusaders and the Kings of Jerusalem whom they considered as political references. The implementation of various political practices and representations originating from the West and from Latin East in Romania thus created a new way of thinking and exercising power in the dominant group. These cultural transfers transformed lastingly the political structures in this region
The experience of family caregivers of individuals in the palliative phase of cancer : psychosocial challenges and determinants of adjustment to (pre)bereavement
Contexte : La clinique des soins palliatifs nous a amenĂ©e au questionnement suivant : comment accompagner le proche aidant lorsquâil est confrontĂ© Ă la fin de vie du patient et quels sont les enjeux de cet accompagnement au regard du deuil Ă venir ? Dans ce contexte particulier, trois trajectoires de fin de vie ont pu ĂȘtre identifiĂ©es en fonction du type de pathologies (neurodĂ©gĂ©nĂ©ratives ; dĂ©faillance dâorganes ; cancĂ©reuses) (Murray et al., 2005). La trajectoire de fin de vie inhĂ©rente aux pathologies cancĂ©reuses reprĂ©sente la premiĂšre cause de dĂ©cĂšs en France (Inserm CĂ©piDc, 2020) et constitue un facteur de risque pour lâexpĂ©rience de deuil (Sauteraud, 2017). Lâobjectif de cette recherche doctorale consistait alors, dâune part, Ă mieux comprendre quel est le vĂ©cu du proche aidant dâun patient en phase palliative de cancer ; dâautre part, Ă identifier les principaux dĂ©terminants psychosociaux (relatifs Ă la pĂ©riode de fin de vie) qui influent sur lâexpĂ©rience de deuil de lâaidant. MĂ©thode : Une revue systĂ©matique de la littĂ©rature a Ă©tĂ© menĂ©e (Hasdenteufel & Quintard, 2022). Elle visait Ă identifier les dĂ©terminants propres Ă la phase palliative du cancer qui influençent lâexpĂ©rience de deuil de lâaidant. Elle a Ă©tĂ© lâun des points dâancrage de la mĂ©thodologie utilisĂ©e pour les recherches empiriques et sâest vue complĂ©tĂ©e par des perspectives cliniques. Deux protocoles ont ainsi Ă©mergĂ© : le premier, de design qualitatif et longitudinal, dont lâobjectif Ă©tait de dĂ©crire et dâanalyser le vĂ©cu de lâaidant confrontĂ© Ă la fin de vie du patient et Ă la perte de celui-ci ; le second, de design quantitatif, qui avait pour but dâidentifier lâinfluence de certains dĂ©terminants relatifs Ă la pĂ©riode de fin de vie sur lâexpĂ©rience de deuil de lâaidant. A cet effet, de nombreux concepts ont Ă©tĂ© explorĂ©s Ă lâaide dâoutils valides (e.g. Ă©motions, qualitĂ© de vie, stratĂ©gies de coping, deuil, trouble de stress post-traumatique, croissance post-traumatique, etc.) dont les rĂ©sultats ont Ă©tĂ© soumis Ă 3 diverses mĂ©thodes dâanalyse (e.g. corrĂ©lations, rĂ©gressions multiples, classification hiĂ©rarchique, analyses thĂ©matiques, thĂ©orie ancrĂ©e, etc.). NĂ©anmoins, aucun outil valide nâexistait Ă ce jour pour Ă©valuer les reprĂ©sentations de la mort ; il a donc Ă©tĂ© nĂ©cessaire dâen crĂ©er un et de le valider (Q-ReM, Hasdenteufel et al. soumis). RĂ©sultats : Il ressort de ces Ă©tudes que, lors de la pĂ©riode de fin de vie, lâaidant Ă©prouve un sentiment dâabsence et prend conscience de la perte Ă venir en consĂ©quence de lâaltĂ©ration de lâĂ©tat gĂ©nĂ©ral du patient. Lâaidant sâabime ; sâĂ©vader devient alors pour lui une nĂ©cessitĂ©. Sa qualitĂ© de vie, ses Ă©motions, ses stratĂ©gies de coping, ses reprĂ©sentations de la mort et bien dâautres dĂ©terminants influencent son expĂ©rience de deuil (e.g. deuil pathologique, trouble de stress post-traumatique, croissance post-traumatique). AprĂšs le dĂ©cĂšs du patient, lâaidant Ă©prouve son absence au regard de ce quâil reprĂ©sentait pour lui. Sâil traverse un vĂ©ritable sĂ©isme Ă©motionnel, il se force Ă aller de lâavant ; et maintenir un lien symbolique avec le patient devient alors fondamental. Enfin, dâautres rĂ©sultats tendent Ă montrer que les aidants peuvent, selon leur vĂ©cu avant la perte, ĂȘtre regroupĂ©s selon certains profils qui dĂ©termineront en partie leur deuil Ă venir. Discussion : Les rĂ©sultats sont discutĂ©s et questionnĂ©s au regard de la littĂ©rature et des pratiques existantes autour de cette problĂ©matique. Des perspectives de recherche sont proposĂ©es, visant Ă amĂ©liorer la mĂ©thodologie dâinvestigation auprĂšs de proches aidants confrontĂ©s Ă la fin de vie des patients. Enfin, des perspectives cliniques, qui nĂ©cessiteront dâĂȘtre Ă©prouvĂ©es, ont Ă©tĂ© Ă©laborĂ©es afin de penser autrement leur accompagnement.Context: The palliative care clinic led us to the following question: how to support the close caregiver when confronted with the patient's end-of-life, and what are the challenges of this support in the context of the impending grief? In this particular context, three end-of-life trajectories were identified based on the type of pathologies (neurodegenerative, organ failure, cancer) (Murray et al., 2005). The end-of-life trajectory associated with cancer is the leading cause of death in France (Inserm CĂ©piDc, 2020) and constitutes a risk factor for the grief experience (Sauteraud, 2017). The objective of this doctoral research was, on one hand, to better understand the experience of a caregiver of a cancer patient in palliative phase; on the other hand, to identify the main psychosocial determinants (related to the end-of-life period) that influence the caregiver's grieving experience. Method: A systematic literature review was conducted (Hasdenteufel & Quintard, 2022). It aimed to identify factors specific to the palliative phase of cancer that influenced the caregiver's grief experience. It served as one of the methodological anchors for empirical research and was complemented by the clinical perspective. Two research protocols emerged: the first one, of qualitative and longitudinal design, aimed to describe and analyze the caregiver's experience when faced with the end of life of the patient and their loss; the second, of quantitative design, aimed to identify the influence of certain determinants related to the end-of-life period on the caregiver's grief experience. For this purpose, numerous concepts were explored using valid tools (e.g. emotions, quality of life, coping strategies, grief, posttraumatic stress disorder, post-traumatic growth, etc.), and the results were subjected to various analytical methods (e.g. correlations, multiple regressions, hierarchical clustering, thematic analysis, grounded theory, etc.). However, no valid tool existed to assess Representations of Death; thus, it was necessary to create and validate one (Q-ReM, Hasdenteufel et al., submitted). Results: These studies revealed that during the end-of-life period, the caregiver experiences a sense of absence and becomes aware of the impending loss due to the patient's deteriorating general health. The caregiver becomes emotionally affected, and seeking refuge becomes a necessity. Their quality of life, emotions, coping strategies, representations of death, and many other determinants influence their grief experience (e.g. pathological grief, posttraumatic stress disorder, post-traumatic growth). After the patient's death, the caregiver feels their absence in relation to what the patient represented to them. If they go through a genuine emotional upheaval, they push themselves to move forward, and maintaining a symbolic connection with the patient becomes fundamental. Furthermore, other results suggest that caregivers can be grouped based on their pre-loss experiences, which will partly determine their future grief. Discussion: The results are discussed and examined in light of existing literature and practices related to this issue. Research perspectives are proposed to improve the investigation methodology for close caregivers confronted with patients' end-of-life. Finally, clinical perspectives, which will need to be tested, have been developed to rethink their support in innovative ways
Le vĂ©cu des proches aidants de personnes en phase palliative d'un cancer : enjeux et dĂ©terminants psychosociaux de lâajustement au (prĂ©)deuil
Context: The palliative care clinic led us to the following question: how to support the close caregiver when confronted with the patient's end-of-life, and what are the challenges of this support in the context of the impending grief? In this particular context, three end-of-life trajectories were identified based on the type of pathologies (neurodegenerative, organ failure, cancer) (Murray et al., 2005). The end-of-life trajectory associated with cancer is the leading cause of death in France (Inserm CĂ©piDc, 2020) and constitutes a risk factor for the grief experience (Sauteraud, 2017). The objective of this doctoral research was, on one hand, to better understand the experience of a caregiver of a cancer patient in palliative phase; on the other hand, to identify the main psychosocial determinants (related to the end-of-life period) that influence the caregiver's grieving experience. Method: A systematic literature review was conducted (Hasdenteufel & Quintard, 2022). It aimed to identify factors specific to the palliative phase of cancer that influenced the caregiver's grief experience. It served as one of the methodological anchors for empirical research and was complemented by the clinical perspective. Two research protocols emerged: the first one, of qualitative and longitudinal design, aimed to describe and analyze the caregiver's experience when faced with the end of life of the patient and their loss; the second, of quantitative design, aimed to identify the influence of certain determinants related to the end-of-life period on the caregiver's grief experience. For this purpose, numerous concepts were explored using valid tools (e.g. emotions, quality of life, coping strategies, grief, posttraumatic stress disorder, post-traumatic growth, etc.), and the results were subjected to various analytical methods (e.g. correlations, multiple regressions, hierarchical clustering, thematic analysis, grounded theory, etc.). However, no valid tool existed to assess Representations of Death; thus, it was necessary to create and validate one (Q-ReM, Hasdenteufel et al., submitted). Results: These studies revealed that during the end-of-life period, the caregiver experiences a sense of absence and becomes aware of the impending loss due to the patient's deteriorating general health. The caregiver becomes emotionally affected, and seeking refuge becomes a necessity. Their quality of life, emotions, coping strategies, representations of death, and many other determinants influence their grief experience (e.g. pathological grief, posttraumatic stress disorder, post-traumatic growth). After the patient's death, the caregiver feels their absence in relation to what the patient represented to them. If they go through a genuine emotional upheaval, they push themselves to move forward, and maintaining a symbolic connection with the patient becomes fundamental. Furthermore, other results suggest that caregivers can be grouped based on their pre-loss experiences, which will partly determine their future grief. Discussion: The results are discussed and examined in light of existing literature and practices related to this issue. Research perspectives are proposed to improve the investigation methodology for close caregivers confronted with patients' end-of-life. Finally, clinical perspectives, which will need to be tested, have been developed to rethink their support in innovative ways.Contexte : La clinique des soins palliatifs nous a amenĂ©e au questionnement suivant : comment accompagner le proche aidant lorsquâil est confrontĂ© Ă la fin de vie du patient et quels sont les enjeux de cet accompagnement au regard du deuil Ă venir ? Dans ce contexte particulier, trois trajectoires de fin de vie ont pu ĂȘtre identifiĂ©es en fonction du type de pathologies (neurodĂ©gĂ©nĂ©ratives ; dĂ©faillance dâorganes ; cancĂ©reuses) (Murray et al., 2005). La trajectoire de fin de vie inhĂ©rente aux pathologies cancĂ©reuses reprĂ©sente la premiĂšre cause de dĂ©cĂšs en France (Inserm CĂ©piDc, 2020) et constitue un facteur de risque pour lâexpĂ©rience de deuil (Sauteraud, 2017). Lâobjectif de cette recherche doctorale consistait alors, dâune part, Ă mieux comprendre quel est le vĂ©cu du proche aidant dâun patient en phase palliative de cancer ; dâautre part, Ă identifier les principaux dĂ©terminants psychosociaux (relatifs Ă la pĂ©riode de fin de vie) qui influent sur lâexpĂ©rience de deuil de lâaidant. MĂ©thode : Une revue systĂ©matique de la littĂ©rature a Ă©tĂ© menĂ©e (Hasdenteufel & Quintard, 2022). Elle visait Ă identifier les dĂ©terminants propres Ă la phase palliative du cancer qui influençent lâexpĂ©rience de deuil de lâaidant. Elle a Ă©tĂ© lâun des points dâancrage de la mĂ©thodologie utilisĂ©e pour les recherches empiriques et sâest vue complĂ©tĂ©e par des perspectives cliniques. Deux protocoles ont ainsi Ă©mergĂ© : le premier, de design qualitatif et longitudinal, dont lâobjectif Ă©tait de dĂ©crire et dâanalyser le vĂ©cu de lâaidant confrontĂ© Ă la fin de vie du patient et Ă la perte de celui-ci ; le second, de design quantitatif, qui avait pour but dâidentifier lâinfluence de certains dĂ©terminants relatifs Ă la pĂ©riode de fin de vie sur lâexpĂ©rience de deuil de lâaidant. A cet effet, de nombreux concepts ont Ă©tĂ© explorĂ©s Ă lâaide dâoutils valides (e.g. Ă©motions, qualitĂ© de vie, stratĂ©gies de coping, deuil, trouble de stress post-traumatique, croissance post-traumatique, etc.) dont les rĂ©sultats ont Ă©tĂ© soumis Ă 3 diverses mĂ©thodes dâanalyse (e.g. corrĂ©lations, rĂ©gressions multiples, classification hiĂ©rarchique, analyses thĂ©matiques, thĂ©orie ancrĂ©e, etc.). NĂ©anmoins, aucun outil valide nâexistait Ă ce jour pour Ă©valuer les reprĂ©sentations de la mort ; il a donc Ă©tĂ© nĂ©cessaire dâen crĂ©er un et de le valider (Q-ReM, Hasdenteufel et al. soumis). RĂ©sultats : Il ressort de ces Ă©tudes que, lors de la pĂ©riode de fin de vie, lâaidant Ă©prouve un sentiment dâabsence et prend conscience de la perte Ă venir en consĂ©quence de lâaltĂ©ration de lâĂ©tat gĂ©nĂ©ral du patient. Lâaidant sâabime ; sâĂ©vader devient alors pour lui une nĂ©cessitĂ©. Sa qualitĂ© de vie, ses Ă©motions, ses stratĂ©gies de coping, ses reprĂ©sentations de la mort et bien dâautres dĂ©terminants influencent son expĂ©rience de deuil (e.g. deuil pathologique, trouble de stress post-traumatique, croissance post-traumatique). AprĂšs le dĂ©cĂšs du patient, lâaidant Ă©prouve son absence au regard de ce quâil reprĂ©sentait pour lui. Sâil traverse un vĂ©ritable sĂ©isme Ă©motionnel, il se force Ă aller de lâavant ; et maintenir un lien symbolique avec le patient devient alors fondamental. Enfin, dâautres rĂ©sultats tendent Ă montrer que les aidants peuvent, selon leur vĂ©cu avant la perte, ĂȘtre regroupĂ©s selon certains profils qui dĂ©termineront en partie leur deuil Ă venir. Discussion : Les rĂ©sultats sont discutĂ©s et questionnĂ©s au regard de la littĂ©rature et des pratiques existantes autour de cette problĂ©matique. Des perspectives de recherche sont proposĂ©es, visant Ă amĂ©liorer la mĂ©thodologie dâinvestigation auprĂšs de proches aidants confrontĂ©s Ă la fin de vie des patients. Enfin, des perspectives cliniques, qui nĂ©cessiteront dâĂȘtre Ă©prouvĂ©es, ont Ă©tĂ© Ă©laborĂ©es afin de penser autrement leur accompagnement
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