Background: Alzheimer´s disease is the most common dementia illness. In Sweden, about 20 000 – 25 000 people are annually diagnosed with Alzheimer´s disease. Accordingly, this number of diagnosed patients is growing each year and so does the cost of care. The symptoms of dementia are often discovered by family members that eventually takes measures as to support and care for their relatives, when they are no longer in condition to take care of themselves. Aim: The purpose was to describe relatives' experiences of caring for their relatives with Alzheimer's disease at home. Method: This study is based on a general literature review consisting of twelve reliable articles that were identified from the databases CINAHL and PubMed and through a qualitative approach. The selection of articles included in the review were quality checked and analyzed with a qualitative content analysis. Results: Three themes emerged: The need for support and information, impact in daily life and coping with adversity in everyday life. Conclusion: Relatives feel a need for increased understanding and they need support in taking care of their relative. Daily life is adversely affected and the relatives need to develop strategies to cope with adversity in everyday life. / Bakgrund: Alzheimers sjukdom är den vanligaste demenssjukdomen och varje år insjuknar 20 000 till 25 000 personer i Sverige. Antalet insjuknande förväntas öka varje år tillsammans med vårdkostnaderna för sjukdomen. Det är oftast anhöriga som upptäcker symtomen och börjar stödja deras närstående med Alzheimers sjukdom när de inte längre klarar av att ta hand om sig själva. Syfte: Syftet var att beskriva anhörigas upplevelser av att vårda närstående med Alzheimers sjukdom i hemmet. Metod: En allmän litteraturöversikt med en kvalitativ ansats. Tolv originalartiklar identifierades från CINAHL och PubMed. Valda artiklar som inkluderades kvalitetsgranskades och analyserades med en kvalitativ innehållsanalys. Resultat: Det framkom tre teman: behov av stöd och information, påverkan i det dagliga livet samt hantering av motgångar i vardagen. Slutsats: Anhöriga känner ett behov av ökad förståelse och behöver stöd i omvårdnaden. Det dagliga livet påverkas negativt och gör att de anhöriga behöver utveckla strategier för att klara av motgångar i vardagen.

Bakgrund De flesta sjuksköterskor kommer under sitt yrkesliv komma i kontakt med döende patienter, varav flertalet önskar att dö hemma. Därför är kunskap om palliativ vård viktigt. Den palliativa vården bör bedrivas med ett holistiskt synsätt där patient, närstående och vårdpersonal ses som en enhet. Likt Martinsens omvårdnadsteori är den palliativa vårdens kärna att lindra lidande och öka patientens välbefinnande. Syfte Syftet var att beskriva patienters upplevelser vid palliativ omvårdnad i hemmet. Metod Designen var en litteraturöversikt där både kvalitativa och kvantitativa originalartiklar användes. Artikelsökningarna genomfördes i databaserna PubMed och CINAHL i april 2020. Totalt 18 artiklar publicerade mellan år 2010–2020 inkluderades i litteraturöversiktens resultat. Samtliga artiklar har kvalitetsgranskats med Sophiahemmet Högskolas bedömningsunderlag och analyserats med integrerad analysmetod. Resultat Majoriteten av studierna visade att patienterna värdesätter kontinuitet, kompetens och tillgänglighet. Även patienternas egen och närståendes delaktighet i vården omnämns i flertalet studier som både positiva och negativa upplevelser. Huvudfynden i litteraturöversikten presenterades som fyra teman med utgångspunkt i patienternas upplevelser av hemsjukvårdsteamet och insatsernas påverkan på vardagslivet, känslomässiga upplevelser och betydelsefulla faktorers inverkan, det sociala samspelet och att leva med närvaro av sjukdom och död. Slutsats I denna litteraturöversikt presenterades patienters upplevelser vid palliativ vård i hemmet. Gemensamt för flertalet studier var att patienterna uppskattade kompetens, kontinuitet, engagemang och tillgänglighet. Resultatet visar att alla deltagande patienters upplevelser är subjektiva och individuella upplevelser, men har utgångspunkt i samma teman. Det är viktigt att inte bara utföra palliativ hemsjukvård efter arbetsplatsens dagliga rutiner och riktlinjer, utan se till patienten och framförallt individen som vårdas.

Bakgrund  Som sjuksköterska är det i princip oundvikligt att inte komma i kontakt med döende patienter någon gång under sitt yrkesliv. Flertalet patienter önskar i dagsläget att få spendera sin sista tid i livet i sitt eget hem. Kunskap om den palliativa vården är därför viktigt, inte minst för patientens närstående som ofta har en stor roll vid palliativ hemsjukvård. Palliativ vård skall bedrivas i samråd med patient och om möjligt även dess närstående. Att vara vårdande närstående kan vara mycket påfrestande och det är därför viktigt att hälso- och sjukvård erbjuder gott stöd till de närstående. Rehnsfeldts omvårdnadsbegrepp ömsesidighet är ett viktigt begrepp inom den palliativa vården och sjuksköterskan har en stor roll i främjandet av ömsesidighet i relationen med de närstående samt patienten.   Syfte Syftet var att beskriva närståendes upplevelser av palliativ vård i hemmet. Metod Designen var en litteraturöversikt där både kvalitativa och kvantitativa originalartiklar inkluderades. Artikelsökningarna skedde i databaserna CINAHL och PubMed i september 2020. Totalt inkluderades sexton vetenskapliga artiklar i litteraturöversiktens resultat, tio kvalitativa respektive sex kvantitativa, som var publicerade mellan år 2010–2020. De sexton inkluderade artiklarna kvalitetsgranskades utifrån Sophiahemmet högskolas bedömningsunderlag för vetenskapliga artiklar och analyserades utifrån integrerad analysmetod. Resultat Litteraturöversiktens huvudfynd presenterades utifrån tre kategorier med utgångspunkt i Närståendes upplevelser av att leva i närhet till sjukdom och död, Närståendes upplevelser av stöd och Närståendes upplevelser av den sena palliativa fasen. Majoriteten av studierna visade på att närstående upplevde en stor känsla av ansvar och att de var i behov av stöd från personer i sin närhet, antingen sjukvårdspersonal eller andra närstående. Studierna i resultatet belyste även vikten av god information under hela palliativa vårdtiden. Slutsats Gemensamt för flertalet studier var att det var viktigt med gott stöd. Stödet kom inte alltid från sjukvården utan kunde komma från andra närstående men gemensamt var att de närstående då kunde uppleva en känsla av ömsesidighet. Det är viktigt att involvera närstående i den palliativa hemsjukvården men det är samtidigt viktigt att inte lägga ett för stort ansvar på den närstående så det inte blir till en börda. / Background As a nurse, it is basically inevitable to not encounter dying or death at some point throughout the professional career. Many patients express a wish to die in their own home. Therefore, knowledge of palliative care is important, not least for the patient's close/extended family, who often play a major role in palliative home care. Palliative care must be provided in consultation with the patient and, if possible, also with their family. Being a family caregiver can be very stressful and it is therefore with utmost important that health care providers offer support to the family caregiver. Rehnsfeldt's concept of mutuality is an important concept in palliative care and the nurse has a major role in promoting mutuality in the relationship with the family caregiver and the patient. Aim The aim was to describe relatives’ experiences of palliative homecare. Method The study design was a literature review, where both qualitative and quantitative original articles were included. The databases CINAHL and PubMed were in September 2020, used for finding articles. A total of sixteen scientific articles were included in this literature review’s results. Ten of the articles were qualitative studies and six where quantitative studies, all of which were published sometime between 2010–2020. The sixteen included articles were reviewed using Sophiahemmet University's quality control guidelines for scientific articles and then an integrated analysis method was performed. Results The literature review's main findings were presented in three categories which were; Relatives' perceptions of living close to illness and death, Relatives' perceptions of support and Relatives' perceptions of the late palliative phase. Most of the studies showed that the close/extended family member felt a great sense of responsibility and that they were in need of support from people in their vicinity, either from professional carers or from close/extended family. The studies in the results also highlighted the importance of good information throughout the palliative care period. Conclusions Common to most of the studies was the importance of adequate support to the relatives. The support did not always origin from healthcare professionals but could just as well origin from their relatives or friends. The common denominator was that the relatives through that the feeling of adequate support could lead to a sense of mutuality and belonging. It is important to involve the relatives in the palliative home care, but it is also important not to place too much responsibility on them so that the palliative home care does not become a burden.

Spinal cord injury is one of the most catastrophic events that may befall a human being. As greater numbers of disabled young adults survive for longer periods, the need for long-term care at home increases. However, self-satisfaction and perceived quality of their care at home are thus important of study. The study had two purposes which included: (1) to describe what factors influence self-satisfaction and perceived quality of care provided for individuals who have had spinal cord injury, and (2) to generate the Learned Response Model that describes the relationships among factors essential for self-satisfaction and perceived quality of care provided for persons with spinal cord injury in the home. A correlation design with a causal modeling methodology was used. Eighty spinal cord injured persons were obtained from six rehabilitation sites in Arizona. Six instruments were utilized to collect data: (1) Knowledge of Disability Questionnaire (KDQ), (2) Stressful Life Events Questionnaire (SLEQ), (3) Activities of Daily Living Scale (ADLS), (4) Involvement of Significant Others Questionnaire (ISOQ), (5) Self-Satisfaction Questionnaire (SSQ), and (6) Perceived Quality of Care Scale (PQCS). Data analysis included use of descriptive statistics to summarize the sample in terms of demographic variables and theoretical and empirical model testing using multiple regression techniques and residual analysis. The study findings indicated that stressful life events was found to have direct negative impact upon perceived quality of care. Activities of daily living and involvement of significant others were found to be moderators relative to self-satisfaction. These variables also interacted together relative to self-satisfaction and perceived quality of care. Involvement of significant others was found to have a significant, but weak, moderation effect relative to the relationship of stressful life events with perceived quality of care.

O objetivo desta pesquisa foi investigar as percepções dos cuidadores informais de pacientes de um serviço de assistência domiciliar sobre o cuidar e seu impacto, estudando aspectos positivos e negativos associados a este papel e a influência da assistência domiciliar para o seu desempenho. Participaram 50 cuidadores de pacientes inscritos no NADI Hospital das Clínicas da FMUSP, que responderam uma entrevista semi-dirigida e a Caregiver Burden Scale. Os cuidadores referem aspectos positivos dos cuidados, associados ao aprendizado e ao ganho narcísico, bem como aspectos negativos, como a perda de liberdade. Conclui-se que cuidar traz perdas e ganhos ao cuidador, relacionados ao seu envolvimento com a atividade e que as orientações da equipe são importantes para o sentimento de segurança do mesmo / The objective of this research was to investigate the perception of informal caregivers of patients attended by a home care program, about the care and its impact, studying positive and negative aspects associated with this role and the influence of home care and its development. Fifty caregivers of patients registered at NADI Hospital das Clínicas of FMUSP, participated in the study, answering the questions of a semi-structured interview and the Caregiver Burden Scale. Caregivers refer to positive aspects of caring related to learning and narcisistic gains, as well as to negative ones, such as the loss of freedom. It includes that caring brings losses and gains to the caregiver which are related to his involvment with the activity and that the staff´s orientation is very important for their feeling of security

Les soins palliatifs ont pour objectif le soulagement de la souffrance et le confort des personnes atteintes de maladies sans possibilités de guérison. Dans les unités de soins palliatifs les équipes s’occupent de la prise en charge des symptômes et de l’accompagnement jusqu’à la mort, une approche globale avec les patients et leurs familles. Le retour à domicile se constitue comme défi pour les professionnels des unités de soins palliatifs, car ce processus est influencé par des aspects sociaux, économiques et culturels. Les hospitalisations représentent une partie importante des budgets des systèmes de santé du monde entier. Ainsi, les Gouvernements de différents pays élaborent des stratégies pour accélérer la sortie de l’hôpital. Après avoir contextualisé le sujet, les objectifs poursuivis par cette étude ont été : décrire et analyser les stratégies pour le retour à domicile en Soins Palliatifs, dans deux hôpitaux, un Brésilien et un Français. Il s’agit d’une étude ethnographique dont nous avons privilégié l’observation participante, le cahier de terrain et l’entretien individuel semi-dirigé comme outil pour produire les données. Les participants de l’étude ont été des personnes en soins palliatifs, ses aidants et des professionnels de santé. Les donnés ont été analysées sous la perspective culturelle et avec quelques outils théoriques proposés par Michel Foucault : biopouvoir, médicalisation et gouvernementalité. Par rapport aux aspects éthiques, le projet a été approuvé par Comité d’Éthique en Recherche, par protocole CAAE: 43747015.5.0000.5327. Nous avons respecté les normes de recherche impliquant des sujets humains, notamment la disposition de la Résolution 466/2012 du Conseil National de Santé du Brésil. Les résultats sont présentés par le biais de trois catégories d’analyse : 1) « Vous avez besoin du lit, c’est pour ça que vous me faites sortir » : le retour à domicile en soins palliatifs, où nous discutons des stratégies politiques et institutionnelles pour réaliser la sortie des unités de Soins Palliatifs ; 2) « Cela change...comme tout change » : les relations de soins en fin de vie, où nous analysons les relations familiales au Brésil et en France, en indiquant la manière pour lesquels ces relations rendent possibles ou pas les soins en fin de vie à la maison ; 3) Le domicile ou le « lieu de vie » : quel lieu de vie ? Dans cette dernière catégorie, nous discutons comme l’espace de la maison est transformée pour accueillir les mourants. En plus, nous présentons le fonctionnement des établissements médico-sociaux qui sont des alternatives au domicile et à l’hôpital pour les malades en soins palliatifs. Pour conclure, nous avons pu constater que même si le Brésil et la France sont des pays différents, il y a des problèmes en commun par rapport à la gestion de la mort. Au Brésil, des supports aux malades en fin de vie et leurs familles sont presque inexistants, bien que le retour à domicile soit réalisé. En France, il existe des ressources humaines et matérielles, mais les configurations des familles parfois ne rendent pas possibles le retour à la maison, même si celle-là c’est une politique gouvernementale. Finalement, autant au Brésil qu’en France, l’hôpital est considéré toujours plus sécurisant pour les soins en fin de vie où les professionnels de santé continuent les responsables par des décisions relatives à la vie et à la mort dans le monde contemporain. / Os Cuidados Paliativos buscam o alívio do sofrimento e o conforto de pessoas com doença sem possibilidade de cura. Em unidades de Cuidados Paliativos visa-se o controle de sintomas e a elaboração da morte, uma abordagem que envolve o paciente e sua família. Nos últimos anos, o retorno ao domicílio tem sido um desafio no trabalho das equipes que atuam nestas unidades, devido os aspectos sociais, econômicos e culturais que interferem em tal processo. Como hospitalizações representam parte importante do orçamento dos sistemas de saúde, Governos de diferentes países têm criado estratégias para acelerar a saída de doentes dos hospitais. Nesse contexto, este estudo tem como objetivos descrever e analisar o modo como se articula o retorno ao domicílio em Cuidados Paliativos, em hospitais brasileiro e francês. Trata-se de um estudo etnográfico, no qual utilizou-se como técnicas de investigação social a observação participante, o diário de campo e a entrevista semiestruturada. Os participantes do estudo foram pessoas em Cuidados Paliativos, seus familiares e profissionais de saúde. Os dados foram analisados sob a perspectiva cultural com algumas ferramentas teóricas propostas por Michel Foucault, a citar: biopoder, medicalização e governamentalidade. Em relação aos aspectos éticos, o projeto foi aprovado por Comitê de Ética em Pesquisa, sob CAAE: 43747015.5.0000.5327 e seguiu as normas da Resolução 466/2012 do Conselho Nacional de Saúde. Os resultados estão apresentados em três unidades de análise: 1) “Vocês estão precisando do leito, por isso estão me mandando embora”: o retorno ao domicílio em cuidados paliativos, onde são discutidas as estratégias políticas e institucionais para efetuar a alta nas unidades de Cuidados Paliativos; 2) “Tá mudando...como tudo tá mudando”: relações de cuidado no final da vida, na qual são analisadas as relações familiares no Brasil e na França, apontando de que modo elas (in)viabilizam os cuidados domiciliares no final da vida; 3) O domicílio ou o “lugar de vida”: que lugar de vida? Nessa última unidade, discutese como o espaço da casa é transformado para o cuidado no processo de morrer. Ainda, apresenta-se o funcionamento dos estabelecimentos médico-sociais, os quais tornam-se alternativa ao domicílio e ao hospital para receber pessoas em Cuidados Paliativos. Conclui-se que mesmo sendo países diferentes, França e Brasil enfrentam problemas semelhantes relacionados ao governo da morte. No Brasil, não é ofertado suporte para os cuidados de final de vida, embora se efetive o retorno ao domicílio. Na França, existem recursos humanos e materiais, mas as configurações familiares tendem a inviabilizar o acolhimento de doentes em casa, mesmo sendo essa uma política governamental. Finalmente, o hospital é a instituição considerada mais segura para os cuidados em final de vida, onde os profissionais de saúde continuam responsáveis pelas decisões relativas ao fazer viver e ao modo como é possível morrer no contemporâneo. / Palliative Care is intended to relieve suffering and comfort people with illnesses beyond cure. At Palliative Care services, the goal is to control the symptoms and elaborate death, an approach that involves patients and their families. In recent years, the return home has been a challenge in the work of the teams at these services, due to the social, economic and cultural aspects interfering in this process. As hospitalizations represent an important part of health systems’ budget, governments in different countries have created strategies to accelerate the patients’ departure from the hospitals. In that context, the objectives of this study are to describe and analyze the way the return home is articulated in Palliative Care at Brazilian and French hospitals. This study is an ethnographic research, where we used the participant observation, the field diary, and the semistructured interview to produce the data. The research participants were patients in Palliative Care, their relatives and health professionals. The data were analyzed from the cultural perspective, using some theoretical tools proposed by Michel Foucault: biopower, medicalization, and governmentality. Concerning the ethical aspects, approval for the project was obtained from a Research Ethics Committee, under CAAE: 43747015.5.0000.5327, in compliance with the standards of National Health Council Resolution 466/2012. The results are presented in three analysis units: 1) “You need the bed, that is why you are sending me away”: the return home in palliative care, in which the political and institutional strategies are discussed to discharge patients from the Palliative Care services; 2) “It’s changing… like everything it’s changing”: care relations at the end of life, in which the family relations in Brazil and France are analyzed, appointing how they permit/preclude home care at the end of life; 3) Home or the “place of life”: what place of life? In this unit, the way the home space is transformed for care in the dying process is discussed. In addition, the functioning of the medical-social establishments is discussed, which turn into an alternative for the home and the hospital to receive people in Palliative Care. In conclusion, despite being different countries, France and Brazil face similar problems related to the government of death. In Brazil, no support is offered for end-of-life care, although the return home takes place. In France, human and material resources exist, but the family configurations tend to preclude the welcoming of patients at home, although this is a public policy. Hence, the hospital is considered the safest institution for end-of-life care, where the health professionals remain responsible for the decisions regarding how to make patients live and how they can die in the contemporary world.

The overall aim of this thesis is to illuminate meanings of the relation between human beings, technology and care, as narrated by critical care nurses and people in need of home mechanical ventilation (HMV). The data are based on narrative research interviews with six intensive care nurses (I), 13 people who were about to start HMV (II), these 13 people were interviewed for a second time six to eight months after HMV had started (III), and nine persons with more than two years HMV experience (IV). The text was analysed using a phenomenological-hermeneutic research method as described by Lindseth and Norberg. The method is developed from the writings of the French philosopher Paul Ricoeur. The findings illuminate meanings of nursing care in an intensive care unit (I) as undertaking the role of advocacy as a caring response to another human being. The basic condition for this caring response depends on the nurses' openness and sensitivity to the needs of patients or patients' next of kin. The nurses were aware of the influence of technology and tried to modify its negative effects. Meanings of becoming dependent on HMV (II) are interpreted and metaphorically expressed as "to get one's breath" and "to hold one's breath" respectively. On the one hand, breathing ensures the cellular oxidation process within the body, but on the other hand there can be "shortness of breath" in "spiritual breathing", and starting HMV will influence patients' whole life situation, body and spirit. After using a ventilator six to eight months, meanings of a life dependent on a ventilator was interpretd as either a closure or an opening of the lived body to oneself, other people and the world. This interpretation is illustrated by two images. A life on a ventilator at home is not to be seen as static being. On the contrary, it is a being which moves and changes over time. Being dependent on a ventilator and living at home, as narrated by adults with more than two years of HMV experience (IV), was interpreted as being able to rise above yourself and your personal boundaries in order to live a good life. These meanings are bound up with experiencing a vital force and interdependency, and despite fragility being able to reach others and the outside world. Design and function of technology had an impact on the lived body. The comprehensive understanding of the four articles (I-IV) unfolded meanings of the relation between human beings, technology and care, as an interchange and a creation of physical and spiritual energy among humans and between human and technology. It could be an experience of the lived body being filled with as well as emptied of energy. This interpretation points at a call for the caring personnel to be attentive and to listen to the voices of the lived body in health and illness, and to bear witness to those who suffer. Technology acts between the person and the world and in order to be embodied, technology must be "transparent", i.e. beautiful and fit to its use.

In the midst of hope and suffering due to the challenges posed by HIV and AIDS in South Africa, communities have literally witnessed a glimmer of hope in women volunteers who have readily and willingly provided care and support to people living with HIV and AIDS (PLWHA) and their families. Policy-makers have maintained that if the care of sick people is to be both comprehensive and cost-effective, it must be conducted as much as possible in the community, with hospitalization only when it is necessary. However, the strains on those caring for people with HIV and AIDS are enormous. This paper argues that neo-liberal policies are reinforcing the divide between the 'haves' and the 'have-nots', by placing strain on women volunteers in the field of community home-based care. The study was conducted in the area of Mpophomeni Township, in KwaZulu-Natal province. The research participants consisted of 10 community home-based care (CHBC) volunteers and their supervisor, 3 CHBC trainers, and 1 counselling trainer. Using a qualitative design, this study examines a specific CHBC training course and how effectively it prepares voluntary caregivers for the challenges experienced in individual homes. Ascertaining how the training helped caregivers to confront their own fears and problems before dealing with those of others, and exploring how community caregivers coped with the stress inherent in their jobs was the primary focus of this study. For these purposes, a qualitative methodology was deemed most appropriate for it allowed me to gain in-depth information through observations, semistructured interviews, a review of relevant documents, and training materials. Inspired by feminist perspectives, the findings revealed that already overburdened and poor people provide the bulk of voluntary services in the area of CHBC. Consequently, they are unable to provide quality care for people living with HIV and AIDS without external support from the government. The findings further established a mismatch between the training content and the reality of work of caregivers. The training puts more emphasis on practical aspects, by providing basic nursing care, often only relevant in helping a bedridden patient. However, many voluntary caregivers reported that the demands placed on them do not end with the death of the patient. This poses a challenge for those in the CHBC training environment as they need to offer relevant and well-researched information linked to the reality of voluntary caregivers' work. The study also highlighted a need to consider the personal long-term goals of volunteer caregivers and begin to realize the importance of using the training to put them on a career path. I therefore argue that the burden of care for people living with HIV and dying from AIDS in resource-poor settings cannot be shifted entirely to communities with the false assumption that they are able to cope. As we continue to grapple with moral and ethical issues in the context of HIV and AIDS, we also need to be concerned about moving women volunteers' efforts from invisibility to visibility through a social transformation agenda. / Thesis (M.Ed.)-University of KwaZulu-Natal, Pietermaritzburg, 2006.

Source: Masters Abstracts International, Volume: 46-05, page: 2670. Adviser: Palmer Beasley. Includes bibliographical references.

Les soins palliatifs ont pour objectif le soulagement de la souffrance et le confort des personnes atteintes de maladies sans possibilités de guérison. Dans les unités de soins palliatifs les équipes s’occupent de la prise en charge des symptômes et de l’accompagnement jusqu’à la mort, une approche globale avec les patients et leurs familles. Le retour à domicile se constitue comme défi pour les professionnels des unités de soins palliatifs, car ce processus est influencé par des aspects sociaux, économiques et culturels. Les hospitalisations représentent une partie importante des budgets des systèmes de santé du monde entier. Ainsi, les Gouvernements de différents pays élaborent des stratégies pour accélérer la sortie de l’hôpital. Après avoir contextualisé le sujet, les objectifs poursuivis par cette étude ont été : décrire et analyser les stratégies pour le retour à domicile en Soins Palliatifs, dans deux hôpitaux, un Brésilien et un Français. Il s’agit d’une étude ethnographique dont nous avons privilégié l’observation participante, le cahier de terrain et l’entretien individuel semi-dirigé comme outil pour produire les données. Les participants de l’étude ont été des personnes en soins palliatifs, ses aidants et des professionnels de santé. Les donnés ont été analysées sous la perspective culturelle et avec quelques outils théoriques proposés par Michel Foucault : biopouvoir, médicalisation et gouvernementalité. Par rapport aux aspects éthiques, le projet a été approuvé par Comité d’Éthique en Recherche, par protocole CAAE: 43747015.5.0000.5327. Nous avons respecté les normes de recherche impliquant des sujets humains, notamment la disposition de la Résolution 466/2012 du Conseil National de Santé du Brésil. Les résultats sont présentés par le biais de trois catégories d’analyse : 1) « Vous avez besoin du lit, c’est pour ça que vous me faites sortir » : le retour à domicile en soins palliatifs, où nous discutons des stratégies politiques et institutionnelles pour réaliser la sortie des unités de Soins Palliatifs ; 2) « Cela change...comme tout change » : les relations de soins en fin de vie, où nous analysons les relations familiales au Brésil et en France, en indiquant la manière pour lesquels ces relations rendent possibles ou pas les soins en fin de vie à la maison ; 3) Le domicile ou le « lieu de vie » : quel lieu de vie ? Dans cette dernière catégorie, nous discutons comme l’espace de la maison est transformée pour accueillir les mourants. En plus, nous présentons le fonctionnement des établissements médico-sociaux qui sont des alternatives au domicile et à l’hôpital pour les malades en soins palliatifs. Pour conclure, nous avons pu constater que même si le Brésil et la France sont des pays différents, il y a des problèmes en commun par rapport à la gestion de la mort. Au Brésil, des supports aux malades en fin de vie et leurs familles sont presque inexistants, bien que le retour à domicile soit réalisé. En France, il existe des ressources humaines et matérielles, mais les configurations des familles parfois ne rendent pas possibles le retour à la maison, même si celle-là c’est une politique gouvernementale. Finalement, autant au Brésil qu’en France, l’hôpital est considéré toujours plus sécurisant pour les soins en fin de vie où les professionnels de santé continuent les responsables par des décisions relatives à la vie et à la mort dans le monde contemporain. / Os Cuidados Paliativos buscam o alívio do sofrimento e o conforto de pessoas com doença sem possibilidade de cura. Em unidades de Cuidados Paliativos visa-se o controle de sintomas e a elaboração da morte, uma abordagem que envolve o paciente e sua família. Nos últimos anos, o retorno ao domicílio tem sido um desafio no trabalho das equipes que atuam nestas unidades, devido os aspectos sociais, econômicos e culturais que interferem em tal processo. Como hospitalizações representam parte importante do orçamento dos sistemas de saúde, Governos de diferentes países têm criado estratégias para acelerar a saída de doentes dos hospitais. Nesse contexto, este estudo tem como objetivos descrever e analisar o modo como se articula o retorno ao domicílio em Cuidados Paliativos, em hospitais brasileiro e francês. Trata-se de um estudo etnográfico, no qual utilizou-se como técnicas de investigação social a observação participante, o diário de campo e a entrevista semiestruturada. Os participantes do estudo foram pessoas em Cuidados Paliativos, seus familiares e profissionais de saúde. Os dados foram analisados sob a perspectiva cultural com algumas ferramentas teóricas propostas por Michel Foucault, a citar: biopoder, medicalização e governamentalidade. Em relação aos aspectos éticos, o projeto foi aprovado por Comitê de Ética em Pesquisa, sob CAAE: 43747015.5.0000.5327 e seguiu as normas da Resolução 466/2012 do Conselho Nacional de Saúde. Os resultados estão apresentados em três unidades de análise: 1) “Vocês estão precisando do leito, por isso estão me mandando embora”: o retorno ao domicílio em cuidados paliativos, onde são discutidas as estratégias políticas e institucionais para efetuar a alta nas unidades de Cuidados Paliativos; 2) “Tá mudando...como tudo tá mudando”: relações de cuidado no final da vida, na qual são analisadas as relações familiares no Brasil e na França, apontando de que modo elas (in)viabilizam os cuidados domiciliares no final da vida; 3) O domicílio ou o “lugar de vida”: que lugar de vida? Nessa última unidade, discutese como o espaço da casa é transformado para o cuidado no processo de morrer. Ainda, apresenta-se o funcionamento dos estabelecimentos médico-sociais, os quais tornam-se alternativa ao domicílio e ao hospital para receber pessoas em Cuidados Paliativos. Conclui-se que mesmo sendo países diferentes, França e Brasil enfrentam problemas semelhantes relacionados ao governo da morte. No Brasil, não é ofertado suporte para os cuidados de final de vida, embora se efetive o retorno ao domicílio. Na França, existem recursos humanos e materiais, mas as configurações familiares tendem a inviabilizar o acolhimento de doentes em casa, mesmo sendo essa uma política governamental. Finalmente, o hospital é a instituição considerada mais segura para os cuidados em final de vida, onde os profissionais de saúde continuam responsáveis pelas decisões relativas ao fazer viver e ao modo como é possível morrer no contemporâneo. / Palliative Care is intended to relieve suffering and comfort people with illnesses beyond cure. At Palliative Care services, the goal is to control the symptoms and elaborate death, an approach that involves patients and their families. In recent years, the return home has been a challenge in the work of the teams at these services, due to the social, economic and cultural aspects interfering in this process. As hospitalizations represent an important part of health systems’ budget, governments in different countries have created strategies to accelerate the patients’ departure from the hospitals. In that context, the objectives of this study are to describe and analyze the way the return home is articulated in Palliative Care at Brazilian and French hospitals. This study is an ethnographic research, where we used the participant observation, the field diary, and the semistructured interview to produce the data. The research participants were patients in Palliative Care, their relatives and health professionals. The data were analyzed from the cultural perspective, using some theoretical tools proposed by Michel Foucault: biopower, medicalization, and governmentality. Concerning the ethical aspects, approval for the project was obtained from a Research Ethics Committee, under CAAE: 43747015.5.0000.5327, in compliance with the standards of National Health Council Resolution 466/2012. The results are presented in three analysis units: 1) “You need the bed, that is why you are sending me away”: the return home in palliative care, in which the political and institutional strategies are discussed to discharge patients from the Palliative Care services; 2) “It’s changing… like everything it’s changing”: care relations at the end of life, in which the family relations in Brazil and France are analyzed, appointing how they permit/preclude home care at the end of life; 3) Home or the “place of life”: what place of life? In this unit, the way the home space is transformed for care in the dying process is discussed. In addition, the functioning of the medical-social establishments is discussed, which turn into an alternative for the home and the hospital to receive people in Palliative Care. In conclusion, despite being different countries, France and Brazil face similar problems related to the government of death. In Brazil, no support is offered for end-of-life care, although the return home takes place. In France, human and material resources exist, but the family configurations tend to preclude the welcoming of patients at home, although this is a public policy. Hence, the hospital is considered the safest institution for end-of-life care, where the health professionals remain responsible for the decisions regarding how to make patients live and how they can die in the contemporary world.