The thesis is a part of the project called Coordinated rehabilitation of the patients with the brain injury (reg. n. GAJU 138/20146/S). The objective of this work is to find out what needs the families of patients with the brain injury have. This thesis has a theoretical and a practical part. According to research set consisting of 14 caregivers of patients after cerebrovascular accident and only one that cares about a patient after cranial trauma, the theoretical part describes a CMP characteristic, coordinated rehabilitation, the basic terms about family and the chosen concepts of needs. Based on the objective of the thesis, the research question was stated: What are the needs of family members who care about the patients with the brain injury in the home environment? The research was made by the qualitative strategy and the semi-structured interviews with the family members in South Bohemia region who cares about the people with the brain injury in the home environment. It was important that people with the brain injury have already been joined to the project. The interviews were done in the application called Atlas.ti. According to the analysis of the collected data, there are 9 main needs that are connected to each other. Concretely, it is a need of a care about the patient, about the house, the need of a family help, the need of professional and social services, economic security and quicker help by the social service, furthermore the need of free time, psychological well-being and being in touch with the society. The results of this thesis are a part of the complex results of the project GAJU called Coordinated rehabilitation of patients with the brain injury (ref. n. GAJU 138/20146/S). The analysis of the needs of family members was used to propose the solutions/saturation of the needs in order to influence the real life of interviewers.

Bakgrund: Anhöriga utgör en viktig och betydande del av vården som ges till personer med demenssjukdom. När man vårdar en närstående kan det leda till att man åsidosätter den egna hälsan. Att stödja personer som ger omsorg eller vård till en närstående är viktigt för både den anhöriga och samhället. Anhörigstöd är en sjuksköterskeuppgift.Syfte: Att belysa anhörigas upplevelse av stöd från vårdpersonal på särskilt boende för personer med demenssjukdom.Metod: Studien genomfördes som en deskriptiv kvalitativ intervjustudie. Data från sju semistrukturerade intervjuer analyserades med kvalitativ innehållsanalys.Resultat: Anhöriga upplever stöd från vårdpersonal när de blir bemötta på ett bra sätt, när de känner trygghet, när de vet att den närstående får bra vård och när de får information. Stöd från vårdpersonal upplevs inte av alla anhöriga och ses inte som en självklar arbetsuppgift för personalen.Slutsats: Sjuksköterskor kan ge stöd till anhöriga genom att bygga stöttande relationer, främja transparens och involvera anhöriga i planerandet och genomförandet av vården. Anhörigstöd på särskilda boenden behöver utvecklas. / Background: Close family and friends play a significant role in the care provided to people with dementia. When a person cares for a close relative or friend, it can be at the expense of their own health. Support for those who provide care and assistance to a close relative or friend is important for both the carer concerned and for society as a whole. Support for patients’ close family and friends is part of the nursing remit.Purpose: To examine the support provided by the care staff at residential homes for people with dementia as experienced by the family and friends of residents.Method: This research was carried out as a qualitative descriptive study based on interview surveys. Data from seven semi-structured interviews was analysed using a qualitative content analysis technique.Results: Close relatives and friends feel supported by care staff when they are treated appropriately and kindly, when they have a sense of trust and confidence in the environment, when they know that their family member or friend is being well cared for and when they are provided with information. Not all caring relatives and friends perceive that they get support from care staff, nor do they see it as a self-evident part of the job of the care staff.Conclusion: Nursing staff are able to provide support to patients’ close family and friends by forming supportive relationships, promoting transparency and involving patients’ close family and friends in planning and executing the provision of care. Support for close family and friends in the context of residential care needs improvement.

Coordenação de Aperfeiçoamento de Pessoal de Nível Superior / Psychic suffering and the body language of family members result from symbolic meanings, whose significations are apprehended through human relationships, and that are given to the interpretation of the situation which is influenced by the interaction of the family members with each other and with the society. This study aimed to understand the meanings of care to the family of the individual experiencing psychic suffering. This research is a qualitative study with a phenomenological approach based on Maurice Merleau-Ponty s theoretical and philosophical framework of reference and on the hermeneutic phenomenology of Paul Ricoeur. Following the approval by the Human Research Ethics Committee of the institution under the Protocol Nº 0214.0.243.000-09, phenomenological interviews were conducted between October 2009 and June 2010 with 14 family caregivers of individuals presented with psychic suffering who were admitted at Paulo Guedes Unit of Psychiatric Admission of the University Hospital of Santa Maria/RS/Brazil. The following guided question was made in the interview: what is it like to take care of (patient s name)? From the comprehension and interpretation of the speeches, three themes emerged: the world of the family that provides healthcare; his or her own perception as a caregiver, and perceiving the other in the world of care. This research made it possible to understand that the family members showed that the care given to the other is on the intertwinement of the being with the world. There are several difficulties regarding the caregiving of an individual experiencing psychic suffering when he or she is not hospitalized, and the main are as follows: the fact that the family member had practically to abdicate of his or her own life to take care of the other revealing that caregiving is related to a historicity of a customary body situated in a space and time. These considerations can serve as subsidies for nurses formation and education so as to keep searching for strategies of sensibilization and mobilization in the academic field as well as providing opportunities to new learning spaces which are in line with the Psychiatric Reform. Also, professionals of the nursing staff should reflect on the caregiving beyond the hospital scenario supporting the family caregiver in home care environment. / O sofrimento psíquico e a expressão corporal dos familiares resultam de significados simbólicos, cujas significações são apreendidas por meio das relações humanas, que são dados à interpretação da situação, a qual é influenciada pela interação da família entre si e com a sociedade. O estudo teve como objetivo compreender os significados de cuidar para a família do indivíduo em sofrimento psíquico. Trata-se de um estudo qualitativo de natureza Fenomenológica pautado no referencial teórico-filosófico de Maurice Merleau-Ponty e fenomenologia-hermenêutica de Paul Ricoeur. Após a aprovação pelo Comitê de Ética com Seres Humanos da instituição, sob o protocolo Nº 0214.0.243.000-09, iniciou-se em outubro de 2009 a junho de 2010 a entrevista fenomenológica com 14 familiares cuidadores de indivíduos em sofrimento psíquico internados na Unidade de Internação Psiquiátrica Paulo Guedes do Hospital Universitário de Santa Maria/RS/Brasil. Na entrevista foi realizada a seguinte questão norteadora: como é para você cuidar do (nome do paciente)? Da compreensão e interpretação dos discursos emergiram três temas: o mundo da família que cuida; a percepção de si como cuidador e percebendo o outro no mundo do cuidado. Com essa pesquisa pôde-se compreender que os familiares mostraram que o cuidado com o outro está no entrelaçamento do ser com o mundo. Existem várias dificuldades referentes ao cuidar de um indivíduo em sofrimento psíquico quando este não está internado, das quais as principais são o fato de o familiar ter que praticamente abdicar de sua vida para cuidar o outro revelando que o cuidado está ligado à historicidade de um corpo habitual situado em um espaço e tempo. Estas considerações podem servir de subsídios para a formação dos enfermeiros para continuar buscando estratégias de sensibilização e mobilização do meio acadêmico, bem como oportunizar novos espaços de aprendizagens condizentes com a Reforma Psiquiátrica. Também, aos profissionais da equipe de enfermagem para refletirem sobre o cuidado além do cenário hospitalar apoiando o familiar cuidador em âmbito domiciliar.

O cuidador familiar é aquela pessoa da família com ou sem experiência na área da saúde, que assume os cuidados ao familiar no domicílio, ajudando-o a suprir suas necessidades proporcionando conforto, lazer e garantindo o bem-estar a pessoa necessitada. Neste sentido este estudo caracteriza o cuidador familiar de pacientes submetidos à cirurgia gastro-intestinal de grande porte quanto a idade, sexo, religião, parentesco, estado marital, ocupação, grau de instrução e também quanto a pessoa que ajuda, experiências anteriores e tempo de dedicação aos cuidados. Outro objetivo proposto foi identificar os cuidados realizados no domicílio pelos cuidadores familiares quanto a higiene e conforto, sono e repouso, cuidados com a pele, cuidados com sondas e/ou drenos e/ou catéteres e/ou bolsas coletoras, alimentação e hidratação, eliminações intestinal e urinária, administração de medicamentos, atividade física e de lazer. Identifica, ainda, a utilização de materiais e equipamentos, bem como de adaptações feitas no ambiente físico no domicílio do doente e o uso de terapias complementares desenvolvidas para a realização do cuidado. Por fim, identifica as vias de contato utilizadas pelos cuidadores familiares voltadas para esclarecimento de dúvidas. É um estudo do tipo descritivo, exploratório, correlacional, de campo, longitudinal com abordagem quantitativa, constando de uma amostra de 15 cuidadores que residiam no município de São Paulo, tinham como cuidador principal alguém da família e concordavam em participar do estudo. Os dados foram coletados pela pesquisadora no período de janeiro a abril de 2001 no domicílio dos doentes em dois momentos, sendo o primeiro entre o 2o e 4o dia após a alta hospitalar e o segundo entre o 10o e 12o dias. O estudo mostrou que os cuidadores familiares deixaram de lado suas atividades profissionais ou não, para estarem disponíveis ao familiar durante o dia e a noite, realizando atividades até então só observadas durante a internação hospitalar. Durante as entrevistas constatou-se estarem inseguros, com dúvidas no cuidar, sozinhos, indecisos, inseguros, com dúvidas no cuidado, mas permaneciam firmes superando todos os obstáculos. / The familiar caregivers is the person from the family with or without experience in the health area that assumes the cares to the family in the home, helping her/him to provide their needs giving comfort, spare time and assuring the person well being. In this course this study characterizes the family caregiver of patients underwent to a large gastrointestinal surgery related to age, sex, religion, relationship, marital status, occupation, education level and about the person that care, her/his previous experiences and period of dedication to the cares. Another proposed aim was to identify the achieved cares in the home by family caregivers regarding to the hygiene and comfort, sleep and rest, skin cares, probe and/or drain and/or catheter and/or collect bag, nutrition and hydration, urinary and intestinal elimination, medicine administration, physical and spare time activities This study identifies yet the use of material and equipments as well as adaptation realized in the physical environment. In the patient home and the use of complementary therapies developed for the care realization. At last it identifies the contact ways used by family caregivers turned to the doubts explanation. It is a descriptive, exploratory, co-relational and longitudinal study, of field, with quantitative approach, consisting of a sample of 15 caregivers that lived in São Paulo City and that have as a main caregiver the family member and they agreed with participate of this study. Researcher collected the data in the period from January to April 2001, on patients home in two moments, being the first between the 2th and 4th day after the discharge from hospital. The second moment occurs between the 10th and 12th days. The study showed that the family caregivers have laid aside their professional activities or not aiming to be available to the family during the day and the night, realizing activities up until then only observed during the nosocomial admission. During the interviews it was verified that the caregivers were alone, hesitant, insecure, with doubts about the care, they have no one to help them, but they stay resolute to overcome difficulties.

Made available in DSpace on 2016-08-18T17:27:39Z (GMT). No. of bitstreams: 1 Dissertacao CYNTHIA GRISELDA CASTRO VIEGAS.pdf: 1758065 bytes, checksum: 5ac92b08e81744b76a86fffec1986f2f (MD5) Previous issue date: 2013-08-29 / The demands arising from the care of children and adolescents with the chronical condition of Diabetes can alter de dynamics of a family, especially of the family caregiver. From this process of care emerge needs related to the disease, as well as to the different aspects of Diabetes therapeutic and the human behavior. Thus, the Professional care must be embracing and multidimensional to identify needs and minimize worries, fears and anxiety of the caregiver and the affected child and / or adolescent. Delimited by such assertions are the following research problems: What needs are experienced by family caregivers from the demands of caring for a child or adolescent with diabetes? The investigated objective can take the nurse to understand many situations of care such as physical, psychic, affective and emotional aspects as well as the difficulties and worries that are presented to the family and to caregivers of children and adolescents with diabetes, in a dimension that reach the social practice of the nurse. The research had as an objective to understand the needs of the family caregiver of children and adolescents with diabetes. For that a descriptive exploratory research with qualitative approach with eleven family caregivers of children and adolescents was made, in the Program of Education for Diabetes in the Health center of Liberdade, in the city of São Luís, State of Maranhão. To collect the data it was used an open interview with data analysis from Theme Analysis. After the analytical-reflexive process concerning the data, the needs were grouped from a great simension of support to caregiving, and for the raw data analysis were grouped into three theme characteristics: Needs of Instrumental Support, Needs of Informative Support and Needs of Emotional Support. Among the needs of instrumental support, it is highlighted the difficulty of access for diagnose and treatment, financial support and the unpreparedness and lack of professional skills in managing diabetes; as need of informative support emerged the theme information for caregiving; among the needs of emotional support is it highlighted the changes in the family routine and support and the caregiving inside the familiar and school context. From the comprehension of the needs of the nurse, it is perceived the importance of the proximity of the nurse with the specificities of this caregiver, expanding the action focus to care and establishing actions that support the integrity and integrality of the family and the health-disease-care process. / As demandas advindas do cuidado de crianças e adolescentes com condição crônica do Diabetes podem alterar a dinâmica da família, em especial, do cuidador familiar. Desse processo de cuidado emergem necessidades relativas à doença, assim como aos diferentes aspectos da terapêutica do diabetes e do comportamento humano. Portanto, o cuidado profissional deve ser abrangente e multidimensional, no sentido de identificar necessidades e minimizar preocupações, angústias e ansiedade do cuidador e da criança e/ou adolescente afetado. Mediante tais assertivas delimitou-se o seguinte problema de pesquisa Que necessidades são vivenciadas pelo cuidador familiar a partir das demandas de cuidado à criança ou adolescente com diabetes? O objeto investigado poderá levar o enfermeiro a compreender diversas situações de cuidado tais como aspectos físicos, psíquicos, afetivos e emocionais assim como as dificuldades e as preocupações que se apresentam às famílias e aos cuidadores de crianças e adolescentes com diabetes, numa dimensão que alcance a prática social do enfermeiro. A pesquisa teve como objetivo compreender as necessidades do cuidador familiar de crianças e adolescentes com diabetes. Para tanto foi realizado estudo exploratório descritivo com abordagem qualitativa com onze cuidadores familiares de crianças e adolescentes com diabetes atendidas no Programa de Educação em Diabetes no Centro de Saúde da Liberdade, São Luís-MA. Para apreensão dos dados utilizou-se entrevista aberta com análise dos dados a partir da Análise Temática. Após processo analítico-reflexivo acerca dos dados, as necessidades foram agrupadas a partir de uma grande dimensão de suporte para o cuidado que para a análise dos dados brutos foram agrupadas em três categorias temáticas: Necessidades de Suporte Instrumental, Necessidades de Suporte Informativo e Necessidades de Suporte Emocional. Dentre as necessidades de suporte instrumental, destacaram-se a dificuldade de acesso para o diagnóstico e tratamento, suporte financeiro e o despreparo e a falta de habilidades dos profissionais no manejo do diabetes; como necessidades de suporte informativo emergiu o subtema informação para o cuidado; entre as necessidades de suporte emocional apontam-se as mudanças na rotina familiar e o suporte a partir do compartilhamento de experiências. Conclui-se que cuidar do(a) filho(a) com diabetes requer suporte permanente, seja sob uma dimensão técnico-instrumental ou de informação e cognição que permita autonomia para viver o dia a dia de modo seguro. A partir da compreensão das necessidades do cuidador familiar de crianças e adolescentes enfatiza-se a importância da aproximação do enfermeiro com as especificidades do cuidador, ampliando o foco de ação para o cuidado e estabelecendo ações que apoiam a integridade e a integralidade da família e do processo saúde-doença-cuidado.

Made available in DSpace on 2014-08-20T13:49:43Z (GMT). No. of bitstreams: 1 Dissertacao_LENICE.pdf: 600422 bytes, checksum: f234dc900847523fdd9aca8f1f62990a (MD5) Previous issue date: 2010-11-09 / The current Mental Health Policy in Brazil is based on the Law 10.216/02 and seeks the consolidation of a model of an open mental health care, community-based. By encouraging the creation of alternative services to asylum model, it is clear the inclusion of the user's mental health services family in the treatment, to provide user support and to receive specific care. It is worth noting that care for patients with mental disorder can lead to family burden which can lead to greater frequency of problems related to mental health. It is estimated that disorders related to mental health represent 12% of the global burden of disease (WHO, 2001). This study is a substudy of the CAPSUL project . Data collection osf the quantitative subproject was performed in 30 municipalities in the southern region (Rio Grande do Sul, Santa Catarina and Parana) for 14 pairs of interviewers, in the period from May to June 2006. This is a transversal design study aiming to determine the overall prevalence of minor psychiatric disorders and its association with sociodemographic variables and burden in family caregivers of CAPS users in southern Brazil. The outcome is the minor psychiatric disorders, assessed by the Brazilian version of the Self Report Questionnaire (SRQ-20) and the independent variables included sociodemographic characteristics, stressors and self-reported burden. We interviewed 936 caregivers. The prevalence of minor psychiatric disorders was associated with low education, having some health problems, presence of stressful events, being the sole caregiver and self-reported burden. The study helps to assess the mental health of caregivers for CAPS users, identifying patterns of occurrence, associated factors and vulnerable groups. It is also useful in designing policies aimed at carers of users of health services who have chronic diseases, including interventions for mental health promotion, risk prevention and control of diseases. Finally there is the potential for comprehensive epidemiological studies in assessing the health of family caregivers of patients with some pathology and also users of the Unified Health System. / A atual Política de Saúde Mental no Brasil apóia-se na lei 10.216/02 e busca a consolidação de um modelo de atenção à saúde mental aberto, de base comunitária. Ao incentivar a criação de serviços alternativos ao modelo asilar, torna-se evidente a inclusão da família do usuário dos serviços de saúde mental no tratamento, para proporcionar suporte ao usuário bem como para receber cuidados específicos. Cabe destacar que o cuidado ao portador de transtorno mental pode gerar sobrecarga ao familiar o que pode levar a maior freqüência de problemas relacionados à saúde mental. Estima-se que transtornos relacionados à saúde mental representem 12% da carga global de doenças (OMS, 2001). Este estudo é um subestudo do Projeto CAPSUL. A coleta de dados do subprojeto quantitativo foi realizada em 30 municípios da região sul (Rio Grande do Sul, Santa Catarina e Parana) por 14 duplas de entrevistadores, no período de maio e junho de 2006. Trata-se de um estudo com delineamento transversal com objetivo geral de determinar a prevalência de transtornos psiquiátricos menores e sua associação com variáveis sociodemográficas e sobrecarga em familiares cuidadores de usuários de CAPS no sul do Brasil. O desfecho em estudo são os Transtornos Psiquiátricos Menores, aferidos através da versão brasileira do Self Report Questionnaire (SRQ-20) e as variáveis independentes incluíram características sóciodemográficas, eventos estressores e sobrecarga auto-referida. Entrevistou-se 936 cuidadores. A prevalência de Transtornos Psiquiátricos Menores associou-se com baixa escolaridade, possuir algum problema de saúde, presença de eventos estressores, ser o único cuidador e sobrecarga auto-referida. O estudo contribui para a avaliação da saúde mental dos cuidadores de usuários de CAPS, identificando padrões de ocorrência, fatores associados e grupos mais vulneráveis. Também é útil no delineamento de políticas voltadas aos cuidadores de usuários dos serviços de saúde que apresentam doenças crônicas, incluindo intervenções para promoção da saúde mental, prevenção de riscos e controle dos agravos. Finalmente destaca-se a potencialidade de estudos epidemiológicos abrangentes na avaliação das condições de saúde dos cuidadores familiares de portadores de alguma patologia e também usuários do Sistema Único de Saúde.

The present study aimed to identify social representations of home health care in the context of terminality on the perspective of the family caregiver. It is a qualitative research, and its participants were the family caregivers of the terminal oncologic patients who participated on the Home Health Care Service of University Hospital of Santa Maria (SIDHUSM) . The number of participants was determined by saturation criteria, totalizing 11 interviewed caregivers. Data collection was carried out through narrative interviews and simple observation. Data analysis was carried out through content analysis, considering the perspective of social representations theory. Ethical principles were respected, so that the participants rights were protected, as their participation was formalized through signing Informed Consent. Among the results, the family caregiver seemed to represent home health care as a way to easily access human and material resources, which are necessary concerning health care to be attained at home. Such way of health care also represents a health care team as reference, which, in a certain way, favors assistance throughout the urgent moments of terminality. It was evident that the caregivers understand home health care as beneficial for the patient, since it allows freedom and autonomy as regards meal times, hygiene, sleep, entertainment and visits. However, on the perspective of the family caregiver, home health care represents an overload, deprivation, greater responsibility, among other feelings, such as anguish and anxiety. Hospital, on the other hand, represents isolation for the patient, since it means restricted visiting hours, as well as lack of autonomy due to caregiving routines. Concerning the caregiver, hospital care represents freedom, since he can maintain his personal activities, concomitant with the feeling of being less responsible. It was possible to identify the importance of the nursing team, as regards the verification of the experience and readiness of the family caregiver to take this role, since many of them reported to feel anguish, not only caused by the diagnostic information of the patient, but also concerning the lack of preparation to take care of another person. Lack of autonomy is observed in some situations. The occultation of the diagnosis of terminality to the patient is something which happens quite often. Facing home health care of the terminal patient implies in seeing the human being degradation, enabling the emergence of several feelings as regards the family caregiver. In conclusion, it is relevant for the nursing team and the health care team, to understand and to know the social representations of home health care produced by family caregivers, since it may help on the approach and receptiveness towards them, who are suffering when receiving the diagnosis of terminality of their family member. Moreover, considering this study has demonstrated that home health care is represented by the family caregiver in its limitations, deprivation and challenges, it is urgent and emergent to come up with new ways to assist the family caregiver. Thus, the health care team may become a social support entity. Through listening, communication and enabling autonomy of the patient and his family it will be possible to accomplish a more holistic health care. / O presente estudo objetivou identificar as representações sociais da internação domiciliar na terminalidade sob o olhar do cuidador familiar. Tratou-se de uma pesquisa qualitativa, sendo considerado participante da pesquisa o cuidador familiar do paciente terminal oncológico vinculado ao Serviço de Internação Domiciliar do Hospital Universitário de Santa Maria (SIDHUSM). Foi utilizado o critério de saturação dos dados, para delimitação do número de participantes, totalizando em 11 cuidadores entrevistados. A coleta de dados foi por meio de entrevista narrativa e observação simples. A análise dos dados foi por meio da análise de conteúdo, com o olhar da teoria das representações sociais. Os princípios éticos foram respeitados, de forma a proteger todos os direitos dos participantes, com formalização da participação por meio de Termo de Consentimento Livre e Esclarecido. Dentre os resultados encontrados, percebeu-se que, no olhar do cuidador familiar, a internação domiciliar representa acesso fácil a recursos materiais e humanos, os quais são necessários no cuidado a ser realizado no domicílio. Essa modalidade de cuidado, representa também uma equipe de saúde como referência, a qual de certo modo, favorece o atendimento nas urgências da terminalidade. Ficou bem evidente, que os cuidadores, entendem a internação domiciliar, como benéfica para o paciente, pela liberdade e autonomia nos horários de refeições, higiene, sono, lazer e recebimento de visitas. Todavia, para o cuidador, o cuidado no domicílio, propicia sobrecarga, privação, maior responsabilização, dentre outros sentimentos como angústias e ansiedades. O hospital, pelo contrário, representa para o paciente, um isolamento, pelos horários de visitas restritos, e também pela falta de autonomia devido a rotinização das ações de cuidado. Já para o cuidador, a internação do paciente no hospital, representa liberdade, pois este consegue manter, de certa forma suas atividades pessoais, ao mesmo tempo que se sente menos responsável. Identificou-se também, a importância da enfermagem verificar a experiência e o preparo do cuidador para assumir este papel, pois muitos se sentiram angustiados, não somente com a informação do diagnóstico do paciente, mas também, pela falta de preparo para cuidar de outra pessoa. A falta de autonomia em algumas situações são observadas. A ocultação do diagnóstico de terminalidade ao paciente é algo bem freqüente. Enfrentar o cuidado do paciente terminal no domiciliar implica em ver a degradação do ser humano, o que faz emergir inúmeros sentimentos no cuidado familiar. Conclui-se, que, faz-se relevante para a enfermagem, e equipe de saúde, entender e conhecer as representações sociais da internação domiciliar, produzidas pelos cuidadores familiares, pois isso pode facilitar na abordagem e no acolhimento, a estes, que estão em certo sofrimento pelo fato de estarem recebendo o diagnóstico de terminalidade do familiar doente. Ainda, pelo estudo ter demonstrado que para o cuidador familiar, a internação domiciliar, apresenta-se com muitas limitações, privações, e desafios, pensar em como atender as demandas desse cuidador familiar torna-se urgente e emergente. Assim, a equipe, tornar-se-á uma forma de apoio social, e que, por meio da escuta, da comunicação, pela efetivação da autonomia do paciente e família, será possível a realização de uma atenção mais integral.

Si la littérature fait état des réticences des aidants familiaux, à demander de l'aide, leurs ressortspsychiques restent mal connus. Pourtant le sentiment de culpabilité a déjà été repéré, comme un obstacle à lademande d'aide de l'aidant, mais ce facteur a été peu exploré dans un axe de recherche. Cette rechercherepose sur l'hypothèse que le sentiment de culpabilité de l'aidant familial, représenterait le principal frein,susceptible d'empêcher sa demande d'aide et de soutien, face à la maladie d'Alzheimer ou à la maladieapparentée de son proche, lorsque le patient vit à domicile. Une sous-hypothèse vise à situer différemment lesentiment de culpabilité de l'aidant familial, selon sa position de conjoint, ou plus largement de descendant(enfant, belle-fille, gendre...), dans la relation d'aide. Pour tester cette hypothèse trente huit entretiens semidirectifsont été réalisés, et complétés par la passation des échelles d'attachement (RSQ), du caregiver(CRA), et de dépression (Beck).Cette recherche vise à expliciter les fondements, et les mécanismes du sentiment de culpabilité des aidantsfamiliaux, en l'articulant à la problématique de perte, qui est coeur de la maladie d'Alzheimer ou desmaladies apparentées. Elle apporte donc un éclairage nouveau sur le travail psychique de l'aidant familial,qui s'écarte de son seul abord sous l'angle du fardeau et de l'épuisement, pour l'envisager à la lumière dutravail du pré-deuil, qui apparaît comme la clé de voûte de la relation d'aide. Par conséquent, la recherchesuivra le cycle de la dépendance du patient, pour dégager à chacun de ses stades, les incidences de la pertedans l'espace psychique et intersubjectif chez l'aidant familial, selon la nature des liens d'attachementdéveloppés avec le patient, mais aussi avec le groupe familial. A partir de là, nous tenterons de relier leregistre principal d'élaboration de la perte, à un profil d'aidant singulier dans la relation d'aide, afin d'éclairerles liens entre ses manifestations de culpabilité, et sa demande d'aide. / If the litterature states reservations of the family caregivers, to ask for help, their psychic springsremain badly known. Nevertheless the sense of guilt was already located, as an obstacle at the request ofhelp, of the caregiver, but this factor was little explored in a research theme. This research bases on thehypothesis that the sense of guilt of the family caregiver, would represent the main brake, susceptible toprevent his request of help and support, in front of the Alzheimer's disease or the related disease, when thepatient lives at home. A sub-hypothesis aims at placing differently the sense of guilt of the familiy caregiver,according to its spouse's position, or more widely of descendant (child, son-in-law, daughter-in-law) in therelation of help. To test this hypothesis, thirty eight semi-directive conversations were realized andcompleted by the signing of the scales of attachment (RSQ), the caregiver (CRA), and depression (Beck).This research aims at clarifying foudations, and mechanisms of the sense of guilt of the family caregivers, byarticulating it in the problem of loss, which is heart of Alzheimer's disease or the related diseases. It thusgives a new perspective on the psychic work of the family caregiver, which deviates from its only accessunder the angle of the burden and the exhaustion, to envisage it in the light of the work of the pre-mourning,which appears at the keystone of the relation of help. Consequently, the research will follow the cycle of thedependence of the patient, to release in each of its stages, the incidences of the loss in the psychic andintersubjective space at the family caregiver, according to the nature of the links of attachment developpedwith the patient, but also with the family group. From there, we shall try to connect the main register ofelaboration of the loss, in a profile of singular caregiver in the relation of help, to light the links between hisdemonstrations of guilt and his demand of help.

Bakground:  When someone is suffering from incurable disease, life changes both for the person, but also for the relatives. More and more get cared for in the home and relatives becomes more involved in care today. Knowledge of the relatives' experiences of palliative care at home is therefore of importance to the district nurse in the home healthcare system to get further aspects of how care can be improved, hence the present thesis work is important. Aims: The purpose of this meta-synthesis was to get a better understanding of the family caregiver’s experiences of palliative care at home, by integrating qualitative international research.  Method: The method used was Noblit and Hares meta-ethnography and 16 qualitative articles were analyzed and synthesized.  Resultat: The family caregiver’s experiences of palliative care at home represented three themes: living with the dying, caring for the dying and interacting with the professional care. The result shows that the experience of caring for a dying relative at home can feel rewarding but at the same time be very stressful both mentally and physically. Caring for a dying relative at home changes life and relationships. The family caregivers’ role as caregiver was a major responsibility and limited their own lives. This responsibility required help from professional caregivers through support and information.  Conclusions: The present master thesis provides a better understanding of the needs of family caregivers, which may facilitate for healthcare professionals in the encounter with these persons and may also motivate to apply a family-focused approach. / Bakgrund: När någon drabbas av obotlig sjukdom förändras livet både för den drabbade, men också för de anhöriga. Allt fler vårdas i hemmet och anhöriga blir mer involverade i vården idag. Kunskap om anhörigas upplevelser av palliativ vård i hemmet är därför av vikt för att distriktssköterskan i hemsjukvården ska få ytterligare aspekter på hur vården kan förbättras, därmed är föreliggande examensarbete angeläget.  Syfte: Syftet med denna metasyntes var att genom att integrera kvalitativ internationell forskning skapa förståelse av anhörigvårdares upplevelser av palliativ vård i hemmet.  Metod: Metoden som tillämpades var Noblit och Hares metaetnografi där 16 kvalitativa artiklar analyserades och syntetiserades.  Resultat: Anhörigvårdares upplevelser av palliativ vård i hemmet kunde beskrivas i följande tre teman: att leva med den döende, att vårda den döende samt att samverka med den professionella vården. Resultatet visar att upplevelsen av att vårda en döende närstående i hemmet kan kännas givande men samtidigt vara mycket påfrestande både psykiskt och fysiskt. Att vårda en döende närstående i hemmet förändrar livet och relationerna. Vårdarrollen innebar ett stort ansvar som begränsade anhörigvårdarnas egna liv. Ett ansvar som krävde stöttning från hälso- och sjukvård i form av stöd och information.    Slutsats: Föreliggande examensarbete ger en ökad förståelse för anhörigvårdares behov vilket kan underlätta för sjukvårdspersonal som ska möta dem och kan även motivera till att tillämpa ett familjefokuserat förhållningssätt

Bakgrund: Då fler patienter önskar att få avsluta sitt liv i hemmet ställs även större krav på anhöriga att kunna vårda i hemmet. För att kunna ge den bästa möjliga vården behöver anhörigas behov och förutsättningar belysas. Syfte: Syftet med litteraturöversikten är att belysa anhörigas upplevelse av att vårda en närstående med cancersjukdom tillsammans med ett palliativt hemsjukvårdsteam. Metod: Studien genomfördes som en litteraturöversikt. Vetenskapliga artiklar söktes fram via databaserna Cinahl, Summon och PubMed. Sökningarna resulterade i tjugo stycken kvalitativa artiklar vilka svarade mot syftet och som sedan granskades och sammanställdes. Resultat: Sammanställningen av artiklarna gav tre huvudteman: Information inför vårdandet, Emotionella påfrestningar och Att vårda tillsammans med palliativa hemsjukvården. De tre huvudtemana gav sedan åtta subteman. En känsla av utanförskap och isolering uppstod hos anhörigvårdaren till följd av att behöva anpassa sig efter patientens dygnsrytm och tillstånd. Kravkänslan och ansvarstyngd lättade hos vårdarna då de kände att även deras behov blev hörsammade och togs i beaktande. Att ha tillgång till palliativt hemsjukvårdsteam dygnet runt ökade trygghet hos anhöriga. Konklusion: För att öka välbefinnandet hos de anhöriga som vårdar en närstående med cancersjukdom i hemmet, behöver sjuksköterskan uppmärksamma och tillmötesgå deras behov av stöd och hjälp. / Background: As more patients wish to end their lives at home, greater demands are also placed on family members to be able to care for their loved ones. In order to provide the best possible care, the relatives needs and prerequisites have to be elucidated. Aim: The aim of the literature review is to explore family caregivers experience of palliative home care when caring for a loved one with cancer.  Method: The study was conducted as a literature review. Scientific articles were searched through the databases Cinahl, Summon and PubMed. The searches resulted in 20 qualitative articles that corresponded to the aim and were then reviewed and compiled.  Result: The compliation of the articles provided three main themes: Information about the care, Emotional stress and Caring together with palliative home care team. The three main themes further provided eight subthemes. A feeling of alination and isolation arose from the caregivers as a result of having to adapt to the patient´s daily rhythm and condition. The feeling of liability and the weight of responsibility eased for the caregivers as they felt that their needs were also listen to and taken into consideration. Having access to palliative home care teams 24-hour a day increased the feeling of security for the caregivers.  Conclusion: In order to increase the well-being of the family members who is caring for a loved one with cancer in the home, the nurse needs to pay attention and meet their need for support and help.