À partir de la distinction opérée par G. Canguilhem (1966) entre la maladie du malade et celle du médecin, nous avons considéré les récits, constructions personnelles et représentations des patients relatifs à leur maladie cancéreuse et coexistants avec les théories scientifiques médicales. Ces éléments représentent un travail psychique d’élaboration qui peut donner naissance à un « roman de la maladie » (Gori, Del Volgo & Poinso, 1994). Cette quête de sens, que nous considérons comme un fondamental de l'existence, peut être mise à mal lorsque l’événement-maladie fait trauma pour le psychisme du patient, entravant alors l'historicisation de son vécu. Mais quid de cette quête à l'approche de la fin de vie ? Comment envisager et donner un sens à l'innommable, l'irreprésentable de sa propre mort (Freud, 1915)? Notre recherche vise à explorer l’évolution des processus d’élaboration en lien avec une mise en sens de l’événement-maladie, des représentations du cancer et de la mort et des processus défensifs mis à l’œuvre pour faire face à ce vécu effractant, entre deux groupes de patients, respectivement en phases curative et palliative de leurs traitements. Une première partie quantitative de notre travail a pour but d’objectiver sur le plan statistique, à l’aide d’outils psychométriques (IPQ-R et DSQ-40), des différences entre les deux groupes (composés de quarante-cinq patients chacun). La seconde partie, qualitative, consiste en une étude clinique et projective (Rorschach et T.A.T.), à partir de la rencontre avec dix patients (cinq de chaque groupe), des processus psychiques à l’œuvre face à la maladie somatique grave et à sa potentielle évolution létale. Notre questionnement touche ainsi à l'étude du « roman de la maladie » après le diagnostic et éventuellement au moment de l'approche de la fin de vie. La maladie grave peut sidérer l'appareil psychique et faire trauma dans certains cas, laissant dans certains autres des possibilités d'élaboration, malgré les représentations de cette pathologie associées socialement à la mort. Mais qu'en est-il lorsque la mort n'est plus affaire de représentation et prend valeur de réalité inéluctable (au sens d'une impossibilité de maintenir cette réalité inconsciente) ? / Starting with the distinction made by G. Canguilhem (1966) between the illness of the patient and the illness of the medical doctor, we have considered the narratives, patients’ personal constructions and representations regarding their cancer, co-existing with the medical and scientific theory. These elements are a psychical work of elaboration that can give birth to “a novel of the illness” (Gori, Del Volgo & Poinso, 1994). This quest for meaning, which we consider fundamental to any existence, can be tested when the illness-event creates a trauma in the psyche of the patient, hindering the elaboration of its history. What about this quest as the end of life approaches? The inconceivable of one’s own death (Freud, 1915) ?Our research explores the evolution of the elaborative processes linked to the quest of meaning of the illness-event, of the representations of cancer, of death and the defenses in place to deal with this frightening experience, comparing two groups of patients, respectively in curative and palliative phases of their treatment. Firstly, a quantitative part of our work is objectified statistically with psychometric tools (IPQ-R and DSQ-40), showing differences between the two groups (each group containing 45 patients). The second part is qualitative with clinical and projective data (Rorschach and T.A.T.) issued from 10 patients (5 of each group), showing the psychical processes of patients facing severe somatic illness and its potential lethal evolution. Our research investigates the “novel of the illness” after diagnosis and at the eventual approach of the end of life. Severe illness can freeze the psyche and be traumatic at times, leaving in certain cases elaborative capabilities, despite the social representation of the pathology associated with death. But what when death is no longer a matter of representation and becomes an undeniable fact (when it is impossible of maintaining this reality unconscious) ?

A escassez de sistemas consolidados de reciclagem de veículos no Brasil e o grande volume de veículos em final de vida (VFVs) junto aos pátios do Departamento Estadual de Trânsito do Rio Grande do Sul - DETRAN/RS serviram de base para o desenvolvimento desta dissertação. Em face disso, o objetivo deste trabalho foi desenvolver um sistema de reciclagem de VFVs ambientalmente mais sustentável, a partir de exemplos globais de melhores práticas adotadas, atendendo à legislação vigente do país. Para tanto, a presente dissertação é composta por dois estudos fundamentados em revisões sistemáticas e em estudos de caso. Inicialmente, como resultado da primeira revisão sistemática, foi realizada a comparação de sistemas de gestão de reciclagem de veículos, identificados em 25 países. Essa comparação possibilitou ampliar o conhecimento de tecnologias e de procedimentos adotados em diferentes realidades, permitindo a proposição de oito políticas a serem adotadas em âmbito nacional, bem como três ações de melhoria ao atual sistema do DETRAN/RS. Em seguida, a segunda revisão sistemática permitiu a proposição de um sistema ambientalmente adequado para reciclagem de VFVs, que sirva de base para a futura padronização de processos de reciclagem, visando a potencial criação de centros especializados em reciclagem de veículos (CERVs). Diante do exposto, os resultados da pesquisa demonstraram que o tema da reciclagem de veículos está inserido num cenário mais amplo, necessitando da participação de todos os stakeholders envolvidos no processo, a exemplo: (i) das montadoras e fabricantes de peças, no desenvolvimento de tecnologias automotivas; (ii) dos entes federados, na criação de legislações mais rígidas e específicas, com foco na economia circular; e (iii) da sociedade na busca de produtos eco-amigáveis. Por fim, conclui-se que, associado às políticas e ações de melhoria sugeridas, a adoção do sistema ambientalmente adequado para reciclagem de VFVs proposto, poderá acelerar a criação de um ambiente favorável para o desenvolvimento e a consolidação da reciclagem no país. / The scarcity of consolidated vehicle recycling systems in Brazil and the huge amounts of endof- life vehicles (ELVs) at the Transit State Department of Rio Grande do Sul - DETRAN/RS courtyards served as the basis for the development of this Masters dissertation. Therefore, the objective of the work was to develop an environmentally more sustainable ELVs recycling system, based on global adopted best practices, without disregarding the country's current legislation. So, this dissertation is composed of two studies based on systematic reviews and on case studies. Initially, as a result of the first systematic review, a comparison of vehicle recycling management systems was carried out, identified in 25 countries. This comparison allowed the increasing of the knowledge about technologies and procedures adopted in different realities, making possible a proposal of educational policies to be adopted at national level, as well as three improvement actions for the current system of the DETRAN/RS. Subsequently, a second systematic review allowed a proposal for a suitable environmentally recycling system for the ELVs, which serves as the basis for a standardization of recycling processes, aiming the potential creation of specialized centers for such processes (CERVs). Considering this, the research results showed that the theme of product recycling is inserted in a broader scenario, requiring participation of all stakeholders involved in the process, such as: (i) the automakers and parts manufacturers, in the automotive technologies development; (ii) the federal entities, in the creation of more rigid and specific legislation, focusing on the circular economy; and (iii) the society in the search for eco-friendly products. Finally, it is concluded that, associated with the suggested policies and improvement actions, the adoption of the proposed environmentally appropriate system for the recycling of the ELVs, may accelerate the creation of a favorable way to the develop and consolidate the recycling in our country.

abstract: This study aimed to understand the factors that influence Chinese American older adults’ advance care planning (ACP) on end-of-life care. The Theory of Planned Behavior (TPB) and Health Belief Model (HBM) were primarily applied to explain Chinese American older adults’ intentions toward two behaviors: 1) discussion of end-of-life care plans with family members and 2) completion of an advance directive (AD). Additionally, acculturation and family cohesion were considered to examine their impacts on the TPB and HBM. A cross-sectional survey was conducted through face-to-face interviews on a sample of 298 community-dwelling Chinese-American adults aged 55 and older living in the metropolitan Phoenix area of Arizona. Based upon random assignment, 161 participants answered questions regarding discussing end-of-life care plans with family members, while 137 participants answered questions related to the completion of an AD. Hierarchical multiple regression analysis was used to focus on the influence of TPB and HBM measures on behavioral intentions toward the two behaviors. Results indicated that both the TPB and HBM had predictive power to explain the target population’s intentions. However, the predictability of TPB and HBM measures varied across the two behaviors. Acculturation moderated the relationship between attitudes and intentions to complete an AD negatively. Family cohesion moderated the relationship between perceived benefits and intentions to discuss end-of-life care plans with family members negatively. These findings would help inform future interventions for improving the target population’s ACP awareness and engagement. / Dissertation/Thesis / Doctoral Dissertation Communication 2018

A escassez de sistemas consolidados de reciclagem de veículos no Brasil e o grande volume de veículos em final de vida (VFVs) junto aos pátios do Departamento Estadual de Trânsito do Rio Grande do Sul - DETRAN/RS serviram de base para o desenvolvimento desta dissertação. Em face disso, o objetivo deste trabalho foi desenvolver um sistema de reciclagem de VFVs ambientalmente mais sustentável, a partir de exemplos globais de melhores práticas adotadas, atendendo à legislação vigente do país. Para tanto, a presente dissertação é composta por dois estudos fundamentados em revisões sistemáticas e em estudos de caso. Inicialmente, como resultado da primeira revisão sistemática, foi realizada a comparação de sistemas de gestão de reciclagem de veículos, identificados em 25 países. Essa comparação possibilitou ampliar o conhecimento de tecnologias e de procedimentos adotados em diferentes realidades, permitindo a proposição de oito políticas a serem adotadas em âmbito nacional, bem como três ações de melhoria ao atual sistema do DETRAN/RS. Em seguida, a segunda revisão sistemática permitiu a proposição de um sistema ambientalmente adequado para reciclagem de VFVs, que sirva de base para a futura padronização de processos de reciclagem, visando a potencial criação de centros especializados em reciclagem de veículos (CERVs). Diante do exposto, os resultados da pesquisa demonstraram que o tema da reciclagem de veículos está inserido num cenário mais amplo, necessitando da participação de todos os stakeholders envolvidos no processo, a exemplo: (i) das montadoras e fabricantes de peças, no desenvolvimento de tecnologias automotivas; (ii) dos entes federados, na criação de legislações mais rígidas e específicas, com foco na economia circular; e (iii) da sociedade na busca de produtos eco-amigáveis. Por fim, conclui-se que, associado às políticas e ações de melhoria sugeridas, a adoção do sistema ambientalmente adequado para reciclagem de VFVs proposto, poderá acelerar a criação de um ambiente favorável para o desenvolvimento e a consolidação da reciclagem no país. / The scarcity of consolidated vehicle recycling systems in Brazil and the huge amounts of endof- life vehicles (ELVs) at the Transit State Department of Rio Grande do Sul - DETRAN/RS courtyards served as the basis for the development of this Masters dissertation. Therefore, the objective of the work was to develop an environmentally more sustainable ELVs recycling system, based on global adopted best practices, without disregarding the country's current legislation. So, this dissertation is composed of two studies based on systematic reviews and on case studies. Initially, as a result of the first systematic review, a comparison of vehicle recycling management systems was carried out, identified in 25 countries. This comparison allowed the increasing of the knowledge about technologies and procedures adopted in different realities, making possible a proposal of educational policies to be adopted at national level, as well as three improvement actions for the current system of the DETRAN/RS. Subsequently, a second systematic review allowed a proposal for a suitable environmentally recycling system for the ELVs, which serves as the basis for a standardization of recycling processes, aiming the potential creation of specialized centers for such processes (CERVs). Considering this, the research results showed that the theme of product recycling is inserted in a broader scenario, requiring participation of all stakeholders involved in the process, such as: (i) the automakers and parts manufacturers, in the automotive technologies development; (ii) the federal entities, in the creation of more rigid and specific legislation, focusing on the circular economy; and (iii) the society in the search for eco-friendly products. Finally, it is concluded that, associated with the suggested policies and improvement actions, the adoption of the proposed environmentally appropriate system for the recycling of the ELVs, may accelerate the creation of a favorable way to the develop and consolidate the recycling in our country.

Syfte : Syfte med denna litteraturstudie var att beskriva anhörigas upplevelser av vården i livets slutskede på särskilt boende. Metod: Litteraturstudien bygger på femton stycken vetenskapliga artiklar som har analyserats och granskats med hjälp av analysmetod enligt Evans (2002). Litteraturstudien genomfördes under våren 2018. Resultat : Dataanalysen av de vetenskapliga artiklarna resulterade i fyra stycken kategorier; Känsla av börda, Önskan att bli sedd, Behov av delaktighet och Behov av stöd. Majoriteten av resultatet baserades på artiklar från Europa. Slutsatser : Mer kunskap krävs när det gäller anhörigas upplevelser av vård i livet slutskede och hur sjuksköterskan kan bemöta anhöriga i detta. De 6 S:n kan vara ett verktyg som kan bidra till planeringen och på så sätt få anhöriga mer delaktiga vilket kan förbättra vården för patienten. / Purpose: The purpose of this literature study was to describe the relatives experience of care in the final stages of life in nursing homes. Method : A literature study that included fifteen scientific articles. Method of analysis according to Evans (2002) were used. The study was conducted during the spring of 2018. Results: Data analysis resulted in 4 categories; Feeling of burden, Desire to be seen, Need for participation and Need for support. The majority of the results were based on articles from Europe. Conclusions: More knowledge is required regarding relatives' perceptions of care in the final stages of life. The 6 S can be a tool that can contribute to planning, thus increasing the number of relatives who can participate and it that way improve the care of the patient.

Background: Each year about 480 children in Sweden receive palliative care and a child’s death has a great impact on everyone involved with the child. Nurses have a responsibility to ensure that the child remains comfortable and experiences dignity until end of life. Caring for children in a palliative stage has shown to be overwhelming for nurses and there is of great importance to determine the nurses own experiences. Aim: The aim of this study was to describe nurses’ experiences of caring for children in a palliative stage. Method: The method used was a literature study with the aim to contribute to evidence based care with an analysis based on qualitative research. Twelve scientific articles were analyzed and three themes and nine subthemes emerged. Results: Relationships were created between the nurses, the children and their families. These relationships made it difficult for the nurses to maintain professional boundaries, which resulted in an emotional impact both during the care and after the child’s death. There were occasions when differences of opinion arose between the nurses and the guardians about the best interests of the child and during these circumstances the nurses needed to advocate for the child. Lack of resources and difficulties in symptom management was also challenging for the nurses during the end-of-life care. Support and additional knowledge was significant to enable further work within the area. Conclusions: Caring for children in a palliative stage is emotionally demanding which makes it difficult for nurses to remain professional. Since nurses have a responsibility to advocate for the children, differences in opinions will occur. Guardians need to be fully informed to make decisions based on the best interests of the child. There is also a need of resources, knowledge and support.

Bakgrund: Palliativ vård består av vård av hela personen när en sjukdom inte längre behandlas. Vården ges med patientens behov och önskemål i fokus. Behovet av palliativ vård kommer att fortsätta växa i förhållande till befolkningens ökade livslängd. Genom att få en djupare kunskap om patienternas erfarenheter skapas en större förståelse för denna patientgrupp. Syfte: Att beskriva patienters upplevelse av palliativ vård. Metod: En litteraturöversikt baserad på 10 vetenskapliga artiklar med kvalitativ design. Resultat: Resultatet presenteras i tre kategorier: Förlorad självbild, Det sociala samspelet samt Transitionen till livets slutskede. Resultatet visar att upplevelsen av palliativ vård är individuell. För många patienter tog det mycket tid och ansträngning att acceptera kroppsliga och sociala förändringar. Slutsats: Resultatet visar att palliativa patienter ofta känner att de förlorat kontroll över sina liv och känner rädsla över att vara en börda för andra. Att tillåta och ta emot hjälp från andra tog tid och ansträngning. Vårdpersonal sågs ofta som en del av familjen, att ha en relation baserad på förtroende och omsorg gav patienterna en positiv upplevelse av palliativ vård. / Background: Palliative care consists of the care of the whole person when a disease is no longer curable. The care is given with the patients’ needs and wishes in focus. The need of palliative care will continue to grow in relation to the increased life span of the population. Through deeper knowledge about patients’ experiences, a greater understanding for this patient group is created. Aim: To describe patient’s experiences with palliative care. Method: A literature-review based on 10 qualitative research articles. Results: The result is presented in three main categories: Lost self-image, Social interaction and The transition to the end-of-life. Results show that the experience of palliative care is individual. For many patients, it took a lot of time and effort to accept bodily and social changes. Conclusion: The result show that many patients experience lost control over their lives and fear that they are a burden to others. To allow and accept help from others took time and effort. Healthcare professionals were often seen as a part of the family, and to have a relationship based on trust and care gave patients' a positive experience of palliative care.

Bakgrund: I Sverige avlider varje år cirka 90.000-100.000 personer. Trettiofem till fyrtio procent av svårt sjuka avlider inne på sjukhus och 40–50% på någon form av hospice. Att vara närstående till någon som är svårt sjuk medför många emotionella svårigheter såsom oro, stress och ovisshet. Sjuksköterskan har en viktig roll då hen genom emotionellt stöd kan lindra onödigt lidande hos närstående.Syfte: Syftet var att beskriva närståendes erfarenheter av emotionellt stöd från sjuksköterskan vid den sena palliativa fasen inom slutenvård samt beskriva skillnader mellan palliativ vård på sjukhus och specialiserad palliativ vård.Metod: Designen var en allmän litteraturstudie med systematisk sökning efter empiriska vetenskapliga artiklar.Resultat: Närståendes erfarenheter delades upp i sex olika kategorier: tydlig och ärlig information gav känsla av lättnad och trygghet, tillgängligheten till sjuksköterska gav känsla av närhet och minskad ensamhet, samtalet gav känsla av att vara sedd och betydelsefull, praktiskt stöd gav känsla av tacksamhet och att bli omhändertagen, egentid och tillgång till privat utrymme gav känsla av ro och bevarad integritet, skillnader mellan palliativ vård på sjukhus och specialiserad palliativ vård.Slutsats: Närståendes erfarenheter visade att sjuksköterskan gav emotionellt stöd då hen gav tydlig och ärlig information, fanns tillgänglig, samtalade med närstående, gav praktiskt stöd samt möjliggjorde egentid och privat utrymme för närstående. Det visade sig att på hospice och liknande palliativa vårdenheter var erfarenheterna övervägande positiva medan erfarenheterna från sjukhus var både positiva och negativa.

This study seeks to investigate fear of death in first-year student nurses. It considers how this might be ameliorated through teaching and learning interventions that involve addressing emotional and spiritual intelligence within the affective domain. Fear of death, for this study, is defined as fear of death and of caring for dying people and their families. A pragmatic paradigm and a mixed method approach were used to explore the feelings and experiences of newly recruited student nurses in relation to fear of death and the care of the dying person and their families. Quantitative and qualitative methods were used to examine the impact of two different interventions intended to reduce the fear of death. A questionnaire was used to measure aspects of fear of death. The students were then randomly allocated to three groups. The members of two of the groups experienced an intervention, either a psychological self-help programme called 'Do Something Different', (Fletcher and Pine, 2009) or a weekly group meeting that explored relationships and the use of spiritual strategies based on Family Constellation theory (Hellinger, 2006). The third group acted as a control. After a period of time in clinical practice, the questionnaire was administered again and the results analysed and interpreted. The relationship between the students' fear of death and their age, previous experiences, ethnicity and spiritual beliefs was explored. Findings indicate that the interventions had a positive influence on reducing the students' fear of death. The qualitative part of the study involved semi-structured interviews with fifteen of the students who had completed both questionnaires. Their experiences of preparation for caring for dying people and of being in an intervention group were discussed. The interviews were analysed using interpretive phenomenological analysis (IPE). Influencing factors from home, such as cultural issues, and from within the clinical context, such as mentorship, were identified. The thesis contributes to nursing education and practice by showing that early preparation for caring for dying people can be effective in reducing fear of death. Results demonstrate that there is value in using strategies to help the student to develop emotional and spiritual intelligence in order to prepare for aspects of dying, before they experience the death of a patient. This preparation enhances the quality of the therapeutic relationship between student and patient. Another outcome is that students need a particular quality of support, at home and in clinical practice and that there are particular implications for Black, Asian and Minority Ethnic (BAME) students. Mentors of students need to be trained to be sensitive to the students' needs when caring for people who are dying. Greater attention to preparation for death and care of the dying is likely to enhance the provision of end of life care and may also reduce attrition in first-year student nurses.

In later life, the death of a family member occurs most often after a challenging time of family caring. It denotes a dramatic event in families’ lives, and involves intense feelings for all. To date, bereavement has mainly been investigated as an intrapersonal process from the perspective of family carers or widow/ers. Little is known about families’ experience when an adult member has died. A review of pertinent literature located only six adult family bereavement studies, which exposed the importance of family cohesion, communication and emotion, and found that family characteristics denote the background from which families make sense of the death. Despite these insights, a dearth of research exists about families’ lived relational world after a death late in life. Such knowledge is needed to better grasp bereaved families’ life-world and to discern their capacities and adversities, which shape their support needs. The purpose of this hermeneutic-phenomenological inquiry was to disclose meaning patterns and practices of families living with the loss of a close other. It included ten bereaved community-dwelling families, represented by widow/ers (mean age 80y), adult children, in-laws and grandchildren (n=30). Family was defined as a situated, relational involvement by those who feel close, and living with loss was seen as a process of changing relationships. A combination of in-depth family group (n=21) and solo interviews (n=16) were held six to 23 months after the death, and field-notes were written. The thematic and narrative analysis, embedded in a hermeneutic movement, involved reading, reflecting, and writing about gleaned data, fore-understandings, and emerging insights. Findings revealed that families’ life with loss is a world shared, and a world apart. Families collectively looked back to weave the death into their family narrative, and in so doing, constructed a story of a good death, compared-contrasted it with other deaths and events, and situated it within their multi-generational family context. Families lived with their loss by sharing-not sharing interpretations and daily lives. They connected via remembering, talking, spend-ing time, and enacting presence, but they disconnected for a variety of reasons. Families moved forward by continuing or reconstructing their family being and doing. While some families faced upheaval, others continued with little change. These findings need to be seen as situated, temporal constructs of prolonged researcher-participant engagements. They yield insights into families’ world based on the accounts of ten traditional families. Even so, this study adds a much needed empirical family perspective on bereavement. Family relations arose as interplay of different, contradicting forces at play, which moved members together and apart in their daily lives with loss. As such, it supports family models that emphasize the multivocal, relational, contextual, and continuously shifting nature of family health. It revealed that families hold an inherent capacity to make meaning of the death and enact family thereafter, and understand their relationships as resource. Thus, families may not need professional therapeutic interventions to redress their “functioning” or to avert “adverse” outcomes, but health promoting and relationship-strengthening care and services. Nurses can be helpful to families by facilitating meaning-making, strengthening family relations in a way that values multiple voices at play, and by supporting family transition and caring in light of present concerns.