Esta pesquisa teve como objetivo utilizar uma técnica de solução de problemas baseada na Terapia cognitivo-comportamental, através de um instrumento: manual de instrução para familiares adaptado para saúde mental. Trata-se de um estudo descritivo. Do qual participaram 20 familiares-cuidadores divididos em 4. Para cada grupo realizaram-se 3 reuniões onde foram trabalhados temas como: alterações do comportamento; esgotamento de quem cuida; a busca de ajuda e por fim a avaliação do curso. Desses encontros emergiram sentimentos que a situação alterações do comportamento mobiliza e a importância do tratamento; autocuidado do cuidadoratravés do compartilhamento das responsabilidades com familiares e outros; internação como forma de solução; e crítica aos serviços de saúde. Os participantes do estudo consideraram positiva a intervenção proposta, pois possibilitou a reflexão acerca de suas vivências e o seu potencial para manejar dificuldades. O instrumento mostrou-se de fácil aplicação permitindo o desenvolvimento de uma intervenção em curto prazo. / In this research it has been used the problem solving techniques on the assistance to the families of the mentally ill person, taking as a guide the instruction manual content that was adapted to the mental health. It is concerned with a descriptive study. Having the participation of twenty family caregivers shared in four groups. Through a case study it has been worked the behavior changes, the caregiver exhaustion, the search for help and then an evaluation of the course has been made by the participants. From these meetings major topics have emerged as the patient behavior change and the feelings that this situation mobilizes, the importance of the treatment continuity; the familiar member necessity of keeping the self-care through the responsibility division among other family members and heath services. Further it has appeared the hospital internment as a solution and the criticism to the health services. The participants have considered positive this brief intervention, because it promoted a reflection about their experiences.

Introdução: Frente à dependência funcional de idosos após um acidente vascular cerebral (AVC), os cuidadores familiares enfrentam a falta de conhecimento e de habilidades para realizarem os cuidados necessários no domicílio, o que tende a influenciar sua sobrecarga. Objetivos: Comparar o efeito de intervenção educativa no domicílio na sobrecarga de cuidadores familiares de idosos após AVC, com orientações usuais de cuidado no período de um mês. Métodos: Ensaio clínico randomizado (ECR), denominado Nursing Home Care Intervention Post Stroke (SHARE). O grupo intervenção (GI) recebeu o acompanhamento sistemático de enfermeiras por meio de três visitas domiciliares (VDs) no período de um mês, para preparo dos cuidadores na realização das atividades de vida diária (AVD) do idoso, suporte emocional e orientações para utilização dos serviços de saúde. O grupo controle (GC) contou com as orientações usuais de cuidado dos serviços de saúde. O desfecho primário foi a sobrecarga do cuidador, e os desfechos secundários foram a capacidade funcional e as reinternações hospitalares dos idosos, avaliados em sete dias e 60 dias após a alta. As análises foram realizadas por intenção de tratar e foi utilizado o programa SPSS 21.0. Para análise do efeito da intervenção nos desfechos foram utilizados os testes t-student pareado, com intervalo de confiança de 95% e t independente. Para verificação do efeito de interação foi realizada análise de variância (ANOVA) para medidas repetidas. / Introduction: Faced with the functional dependence of the elderly after a stroke, family caregivers face the lack of knowledge and skills to perform the necessary health care at home, which tends to negatively influence their overload. Objectives: Compare the effect of home educational intervention (SHARE), on the overload of family caregivers of the elderly with stroke when compared to usual care in one month. Methods: Randomized clinical trial denominated Nursing Home Care Intervention Post Stroke (SHARE). The intervention group (GI) receive a systematic follow-up of nurses through three home visits (VDs) during one month, to prepare the family caregivers in performing daily life activities of the elderly, emotional support and orientations for the use of health services. The control group (CG) did not receive the VDs and had the usual care of the health services. The primary outcome was a caregiver burden, and the secondary outcomes were functional capacity and hospital readmissions of the elderly, evaluete at 7 days and 60 days after discharge. The analyzes were performed by intention to treat and the SPSS 21.0 program was used. For the analysis of the effect of the intervention on the results we used the t-student paired tests, with 95% confidence interval and independent t. For analysis of the interaction effect, analysis of variance (ANOVA) was performed for repeated measures. A significant value was considered p <0.05. For the control of confounding factors, multivariate analyzes were used. The study was approved by the Research Committee of the Hospital de Clínicas of Porto Alegre (nº 160181). Results: From May 2016 to September 2017, 48 elderly and their family caregivers were randomized, 24 for the intervention group (GI) and 24 for the CG. Among the elderly, 54.1% were female, and 95.8% had ischemic stroke. Of the caregivers, 87.5% were women, mean of 53.3 ± 12.9 years. There was no statistically significant difference between the groups regarding burden (0.43 GI vs 0.78 GC, p = 0.717), functional capacity (16 GI vs 18.7 GC, p = 0.999) and hospital readmissions (17% GI vs. 8.3% GC, p = 0.854). Conclusion: The SHARE intervention seems to have not influenced in the outcomes. Other intervention compositions are suggested and evaluation of other outcomes. Clinical Trial Registration: NCT02807012.

O envelhecimento populacional e o aumento das doenças crônicas não transmissíveis geram uma demanda crescente por Programas de Cuidados Domiciliares em Atenção Primaria à Saúde, de capacitação de familiares cuidadores e de profissionais da saúde para lidar com a doença avançada e a terminalidade. Esta pesquisa subscreve essa realidade e objetiva compreender a visão de quem cuida de um familiar com doença avançada e os possíveis aprendizados dos cuidadores durante esse processo de cuidar de quem está morrendo. Trata-se de uma pesquisa qualitativa, de caráter etnográfico, realizada na vila Fátima-Bom Jesus, comunidade de baixa renda e baixo nível educacional. Comunidade que enfrenta cotidianamente dificuldades socioeconômicas e culturais, convivendo constantemente com o narcotráfico e a intensa violência urbana. Este estudo entrevistou 11 cuidadores familiares com mais de 18 anos, que cuidam/cuidaram de pacientes com doença avançada nos últimos 12 meses; coletou dados dos prontuários dos pacientes do Programa de Cuidados Domiciliares do Centro de Extensão Universitária Vila Fátima, da Pontifícia Universidade Católica do Rio Grande do Sul – CEUVF-PUCRS, e do diário de campo do trabalho com o Grupo de Cuidadores. A análise comportou três alicerces: o cuidador familiar, o paciente com doença avançada e a morte. A convivência diária dos cuidadores com seus familiares em fase final de vida aproximou-os de sua própria consciência em relação à morte; essa consciência pessoal da maioria não facilitou um diálogo com o paciente sobre a morte; os cuidadores, em sua maioria mulheres, idade avançada, baixa renda e nível educacional, evidenciam alto risco para o desenvolvimento de estresse. Manifestam com intensidade a sensação de dever cumprido pelo ato de cuidar; cuidar como atitude de preocupação, de responsabilização, de envolvimento emocional e afetivo. Cuidado que possibilitou a muitos pacientes viverem mais tempo com qualidade de vida no domicílio. A opção da maioria dos cuidadores foi cuidar do familiar até a morte no domicílio, devido à solidão do paciente no hospital. A opção por morrer no hospital acontece devido à solidão do cuidador na assistência domiciliar. Os cuidadores apresentam uma trajetória de cuidados ao longo de seu ciclo de vida: na infância cuidaram de crianças, seguiram cuidando de familiares, amigos e vizinhos. Os laços afetivos existentes foram essenciais para o estabelecimento de uma relação afetuosa de cuidado. Alguns cuidadores apresentaram dificuldades em assumir seu papel, cumprir tarefas, evidenciando traços de negligência e a necessidade de intervenção da equipe. Os cuidadores demonstram aprendizados ligados aos cuidados do corpo, administração de medicações; aprendizados vinculados aos cuidados psicossociais e espirituais, empatia, compreensão, silêncio, limites, carinho. O universo do cuidar mostra-se como um mundo construído com o outro, onde não existe realidade como verdade e sim versões da realidade, uma construção de reflexão e aprendizado na interface das biografias pessoais e do meio sociocultural onde a vida ocorre. / The population's aging and the increase in non-transmissible chronic diseases have created a growing demand for Basic Home Healthcare Programs and training for family caregivers and health professionals to deal with advanced-stage diseases and terminality. This paper is aimed at understanding how people caring for a family member suffering from an advanced-stage disease see the situation and what caregivers could potentially learn during this process of taking care of someone who is dying. It is a qualitative, ethnographic study carried out in Vila Fátima-Bom Jesus, a low-income, lowschooling community. The community grapples with socioeconomic and cultural hardships on a daily basis as they are constantly surrounded by drug trafficking and intense urban violence. This study interviewed 11 family caregivers over the age of 18 who are taking/have taken care of patients suffering from advanced-stage diseases in the past 12 months. We gathered data from medical records of patients overseen by the Home Care Program run by the Vila Fátima University Extension Center of Pontifícia Universidade Católica do Rio Grande do Sul (CEUVF-PUCRS) and the field log of the work with the Caregivers' Group. Our analysis was grounded on three pillars: family caregivers, advanced-disease patients, and death. The caregivers' daily interactions with their family members nearing the end of their lives have made the former more aware of their own mortality. Such personal awareness by the majority of them has not made it easier for them to talk about death with their patients. The caregivers, most of them senior, low-income, low-schooling females, show high risk towards developing stress. They speak pointedly about their sense of accomplishment for having provided the care. Care-giving as an attitude of concern, accountability, emotional and affective involvement. Care-giving which has allowed many patients to live a longer, higher quality life at home. Most caregivers have chosen to take care of their family members until their demise at home, because of how lonely patients are in hospitals. Patients have chosen to die in the hospital because of how lonesome home caregivers become. Caregivers have had a history of caregiving throughout their lives. As children, they used to take care of other kids. Later on, they proceeded to take care of family members, friends, and neighbors. The existing emotional bonds were essential to set up a loving care-giving relationship. Some caregivers have had trouble taking on their roles and doing chores. Additionally, some betrayed signs of being neglectful and the team was required to step in. Caregivers show to have learned about taking care of the body and administering medication. They have learned about psycho-social and spiritual care, empathy, understanding, silence, limits, affection. The universe of care has proved to be a world built along with another person, where reality does not exist as truth but as versions of reality. A construction of reflection and learning in the interface of personal biographies and the socio-cultural environment where life takes place.

O envelhecimento populacional e o aumento das doenças crônicas não transmissíveis geram uma demanda crescente por Programas de Cuidados Domiciliares em Atenção Primaria à Saúde, de capacitação de familiares cuidadores e de profissionais da saúde para lidar com a doença avançada e a terminalidade. Esta pesquisa subscreve essa realidade e objetiva compreender a visão de quem cuida de um familiar com doença avançada e os possíveis aprendizados dos cuidadores durante esse processo de cuidar de quem está morrendo. Trata-se de uma pesquisa qualitativa, de caráter etnográfico, realizada na vila Fátima-Bom Jesus, comunidade de baixa renda e baixo nível educacional. Comunidade que enfrenta cotidianamente dificuldades socioeconômicas e culturais, convivendo constantemente com o narcotráfico e a intensa violência urbana. Este estudo entrevistou 11 cuidadores familiares com mais de 18 anos, que cuidam/cuidaram de pacientes com doença avançada nos últimos 12 meses; coletou dados dos prontuários dos pacientes do Programa de Cuidados Domiciliares do Centro de Extensão Universitária Vila Fátima, da Pontifícia Universidade Católica do Rio Grande do Sul – CEUVF-PUCRS, e do diário de campo do trabalho com o Grupo de Cuidadores. A análise comportou três alicerces: o cuidador familiar, o paciente com doença avançada e a morte. A convivência diária dos cuidadores com seus familiares em fase final de vida aproximou-os de sua própria consciência em relação à morte; essa consciência pessoal da maioria não facilitou um diálogo com o paciente sobre a morte; os cuidadores, em sua maioria mulheres, idade avançada, baixa renda e nível educacional, evidenciam alto risco para o desenvolvimento de estresse. Manifestam com intensidade a sensação de dever cumprido pelo ato de cuidar; cuidar como atitude de preocupação, de responsabilização, de envolvimento emocional e afetivo. Cuidado que possibilitou a muitos pacientes viverem mais tempo com qualidade de vida no domicílio. A opção da maioria dos cuidadores foi cuidar do familiar até a morte no domicílio, devido à solidão do paciente no hospital. A opção por morrer no hospital acontece devido à solidão do cuidador na assistência domiciliar. Os cuidadores apresentam uma trajetória de cuidados ao longo de seu ciclo de vida: na infância cuidaram de crianças, seguiram cuidando de familiares, amigos e vizinhos. Os laços afetivos existentes foram essenciais para o estabelecimento de uma relação afetuosa de cuidado. Alguns cuidadores apresentaram dificuldades em assumir seu papel, cumprir tarefas, evidenciando traços de negligência e a necessidade de intervenção da equipe. Os cuidadores demonstram aprendizados ligados aos cuidados do corpo, administração de medicações; aprendizados vinculados aos cuidados psicossociais e espirituais, empatia, compreensão, silêncio, limites, carinho. O universo do cuidar mostra-se como um mundo construído com o outro, onde não existe realidade como verdade e sim versões da realidade, uma construção de reflexão e aprendizado na interface das biografias pessoais e do meio sociocultural onde a vida ocorre. / The population's aging and the increase in non-transmissible chronic diseases have created a growing demand for Basic Home Healthcare Programs and training for family caregivers and health professionals to deal with advanced-stage diseases and terminality. This paper is aimed at understanding how people caring for a family member suffering from an advanced-stage disease see the situation and what caregivers could potentially learn during this process of taking care of someone who is dying. It is a qualitative, ethnographic study carried out in Vila Fátima-Bom Jesus, a low-income, lowschooling community. The community grapples with socioeconomic and cultural hardships on a daily basis as they are constantly surrounded by drug trafficking and intense urban violence. This study interviewed 11 family caregivers over the age of 18 who are taking/have taken care of patients suffering from advanced-stage diseases in the past 12 months. We gathered data from medical records of patients overseen by the Home Care Program run by the Vila Fátima University Extension Center of Pontifícia Universidade Católica do Rio Grande do Sul (CEUVF-PUCRS) and the field log of the work with the Caregivers' Group. Our analysis was grounded on three pillars: family caregivers, advanced-disease patients, and death. The caregivers' daily interactions with their family members nearing the end of their lives have made the former more aware of their own mortality. Such personal awareness by the majority of them has not made it easier for them to talk about death with their patients. The caregivers, most of them senior, low-income, low-schooling females, show high risk towards developing stress. They speak pointedly about their sense of accomplishment for having provided the care. Care-giving as an attitude of concern, accountability, emotional and affective involvement. Care-giving which has allowed many patients to live a longer, higher quality life at home. Most caregivers have chosen to take care of their family members until their demise at home, because of how lonely patients are in hospitals. Patients have chosen to die in the hospital because of how lonesome home caregivers become. Caregivers have had a history of caregiving throughout their lives. As children, they used to take care of other kids. Later on, they proceeded to take care of family members, friends, and neighbors. The existing emotional bonds were essential to set up a loving care-giving relationship. Some caregivers have had trouble taking on their roles and doing chores. Additionally, some betrayed signs of being neglectful and the team was required to step in. Caregivers show to have learned about taking care of the body and administering medication. They have learned about psycho-social and spiritual care, empathy, understanding, silence, limits, affection. The universe of care has proved to be a world built along with another person, where reality does not exist as truth but as versions of reality. A construction of reflection and learning in the interface of personal biographies and the socio-cultural environment where life takes place.

Background: Today, approximately 160,000 people live with dementia in Sweden and globally, the number of affected people is approximately 50 million. Dementia is a collective name for a variety of brain diseases that occur from brain damage. As dementia often materializes gradually overtime, it tends to lead to a family member becoming the caregiver of the person who is sick. Aim: The aim of this literature study was to illustrate the experience of those caring for a relative with dementia as well as to describe the study groups in the included studies. Method: This study is a literature review with descriptive design consisting of twelve scientific articles with a qualitative approach. Main results: Becoming a caregiver to a relative with dementia was rarely a choice but it was a role in which the family member grows into. Many people experienced the role as a caregiver as complex and it was common to experience feelings of insecurity, isolation, fatigue and frustration. The approach and method for managing the disease differed significantly for each caregiver analyzed during this study, however humor, acceptance and religion were often employed as coping mechanisms. The result was compiled with seven subheadings: From family to family caregiver, Support in care, Insecurity, ignorance and difficult situations, More than a full time job, Loss and fear of the future, Coping strategies, and Methodological aspect – study groups. Conclusion: Being a family caregiver was a challenge to most people. Many have expressed the gravity of receiving both societal support and help from other family members to obtain relief within their role, but in spite of this, the caregiver often took the greater responsibility. Therefore, a critical change in the support is necessary to enable them to want, and be able, to continue to fulfill the important work they do. / Bakgrund: Idag lever omkring 160 000 personer med demenssjukdom i Sverige och globalt sett är antalet drabbade människor cirka 50 miljoner. Demenssjukdom är ett samlingsnamn för en rad olika typer av hjärnsjukdomar som uppkommer vid skador i hjärnan. Sjukdomen kommer ofta i ett smygande förlopp vilket leder till att det många gånger är den närstående som börjar ta hand om personen som drabbats.

Bakgrund: Konfusion är en vanlig företeelse hos äldre personer inneliggande på sjukhus. Så många som hälften kan vara drabbade, men det upptäcks sällan och kunskapen hos sjuksköterskor behöver öka. Eftersom patienterna ofta har svårt att kommunicera, så kan närståendes kunskap om patienten hjälpa vårdpersonalen samt förmedla lugn till patienten. Familjefokuserad omvårdnadsteori valdes därför som teoretisk utgångspunkt. Syfte: Den här studien syftade till att undersöka, äldre patienters, närståendes och sjuksköterskors upplevelse av konfusion på sjukhus, samt huruvida familjefokuserad omvårdnad kunde verka främjande vid konfusion. Metod: Litteraturöversikt med systematisk ansats baserad på femton artiklar från åren 2010–2019, från databasen PubMed. Åtta av artiklarna hade en kvalitativ metod, fyra hade en kvantitativ ansats medan tre artiklar använde mixad metod. Resultat: Litteraturöversikten resulterade i fyra teman: Upplevelsen av konfusion, kunskapsbrist, interaktion samt familjefokuserad omvårdnad. Dessa återspeglades utifrån patienten, de närstående samt sjuksköterskan. Utifrån temat Upplevelse av konfusion sågs att patienten ofta hade en skrämmande upplevelse under konfusionen. Temat Kunskapsbrist visade att närstående var frustrerade över att de inte fick någon bra förklaring till patientens tillstånd. I temat Interaktion sågs att hallucinationer och aggressivt beteende hos patienterna ledde till att sjuksköterskor ibland var tvungna att ta till tvångsåtgärder. Temat Familjefokuserad omvårdnad visade att genom att lyfta fram närståendes kunskap om patienten, kunde tidiga tecken på konfusion upptäckas och patienterna kände sig också i regel lugnare. Slutsats: Konfusion är en komplex åkomma som upplevs svår för både patienten, närstående och sjuksköterskan. Genom en ökad kunskap om konfusion både för sjuksköterskor och närstående kan samarbete förbättra omvårdnaden för patienten. / Background: Delirium is a common phenomenon for elderly people during hospitalization. As many as 50% might be affected by this severe condition. Due to poor knowledge among nurses in general, many patients neither get the proper diagnosis nor care. By enhancing the understanding of the lived experience of delirium by patients, their families and the caregiving nurses, it is possible to create a good foundation for cooperation among all parts. Since the patients often have trouble with communication, the family’s knowledge of the patient can help health professionals and calm the patient. Family-centered care theory was therefore chosen as nursing theory. Aim: To examine the lived experience of delirium at a hospital from the perspective of the elderly patient, the significant other and the nurse. It is also to explore if family-centered care can serve as prevention or positive impact on the patient with delirium. Method: A literature review with systematic approach based on fifteen articles from the years 2010–2019, from the PubMed database. Of the articles, eight had a qualitative method, four had a quantitative approach while three articles used the mixed method. Result: The literature review resulted in four themes: Experience of the confusion, Lack of knowledge, Interaction and Family-centered nursing. These were reflected according to the patient, the significant other and the nurse. The theme Experience of the confusion showed that the patients often had a terrifying experience during the delirium episode. The theme Lack of knowledge showed that significant others were frustrated that they did not receive a clear explanation for the patient’s condition. In the theme of Interaction, hallucinations and an aggressive behaviour in patients led to nurses sometimes having to use coercive methods. The theme of family-centered nursing showed that by highlighting significant others knowledge of the patient, early signs of confusion could be detected, and patients also felt calmer. Conclusion: Delirium is a complex state that is difficult for the patient as well as the family and the nurse. If the knowledge of delirium increases for the nurse and the significant other, the cooperation can improve the care of the patient.

Bakgrund: Anhörigvårdares upplevelser av att vårda en person med en demenssjukdom bör belysas, eftersom sjukdomen förändrar hela vardagen både för den drabbade och den anhöriga. Syfte: Syftet med litteraturstudien var att beskriva anhörigas upplevelser av att vårda en närstående med en demenssjukdom. Metod: Studien är en allmän litteraturstudie med åtta artiklar med kvalitativ design. Data sammanställdes genom en innehållsanalys. Resultat: Tre kategorier identifierades i resultatet: anhörigas motiverande upplevelser av att vårda sin närstående, anhörigas upplevelser av känslomässiga påfrestningar av att vårda sin närstående samt anhörigvårdares upplevelse av att behöva stöd och information. I resultatet framkom positiva och negativa upplevelser av att vårda en anhörig, behovet av stöd och information samt bristerna som fanns. Anhörigvårdare upplevde att vårdandet gav värdefulla stunder och en tillfredsställelse av att få hjälpa. De upplevde däremot att relationen påverkades och att det var påfrestande att ingå i en ny roll som vårdare. De upplevde även att stödet från den formella vården var otillräcklig och inte personcentrerad. Konklusion: När en närstående drabbas av en demenssjukdom förändras livssituationen och anhörigvårdare kan uppleva psykisk såväl fysisk ohälsa. Stöd och information i ett tidigt skede kan ha betydande inverkan på anhörigvårdare och deras förmåga att bibehålla sin egen och den demensdrabbades livskvalité. / Background: Family caregivers experience of caring for a person with dementia should be highlighted, since the disease changes the everyday life both for the affected and the relative. Aim: The Aim with the literature study was to describe relatives’ experiences of caring for a relative with dementia. Method: The study is a general literature study with eight articles using qualitative design. Data was conducted through a content analysis. Results: Three categories were identified in the result: relatives’ motivating experiences of caregiving for their relatives, relatives’ experiences of emotional stress from caregiving for their relatives and family caregivers experience of needing support and information. The result showed positive and negative experiences of caring for a relative, the need of support and information and the shortage that existed. Family caregivers experienced that the caring provided valuable moments and the satisfaction of being able to help. However, felt though that the relationship was affected and that it was stressful to enter a new role as a caregiver. They also experienced that the support from the formal care was insufficient and not person-centered. Conclusion: When a relative gets diagnosed with dementia the life situation changes, and family caregivers experience psychological and physical illness. Support and information at an early stage can have a significant impact on family caregivers and their ability to maintain their own and the dementia sufferer’s quality of life.

Bakgrund: Var tredje sekund drabbas en person av en demenssjukdom i världen. De flesta av dessa bor kvar hemma i flera år och blir vårdade av en anhörig. Enligt svensk lag ska anhöriga erbjudas anhörigstöd av sin hemkommun. Syfte: Syftet var att belysa anhörigas upplevelse av stöd för att vårda närstående med demenssjukdom i hemmet. Metod: En litteraturöversikt baserad på kvalitativa vetenskapliga artiklar. Resultat: I sammanställningen av 10 kvalitativa vetenskapliga artiklar framkom tre kategorier: upplevelse av personlig information, upplevelse av vardagligt stöd samt upplevelse av reflektion. Anhöriga upplevde informationsbrist om att det fanns stöd att tillgå i vårdandet av sin närstående med demenssjukdom i hemmet, och hur de får tillgång till dessa stöd. De anhöriga som däremot fått information om stöd uppskattade också stöden då det bidrog till avlastning i vardagen och bättre livskvalitet. Dessutom upplevde anhöriga att stödet hade bidragande faktorer till att klara av vardagen. Många anhöriga hade en positiv upplevelse av att få stöd i skriftlig, muntlig och gruppvis form, ett stöd som också gav upphov till reflektion. Slutsats: Att vårda sin närstående med demenssjukdom kan vara både fysiskt och psykiskt påfrestande, vilket gör att behovet av stöd är viktigt för den anhöriga. Stöd till anhöriga behöver komma in i ett tidigt skede, men eftersom behovet av stöd ändras över tid krävs också kontinuerlig uppföljning för att en tillräcklig omvårdnad ska upprätthållas. / Background: Every three seconds, a person in the world suffers from dementia. Most of these stay at home for several years and are cared for by a relative. According to Swedish law, relatives must be offered relative support by their home municipality. Aim: The aim was to shed light on relatives' experience of support for caring for relatives with dementia at home. Method: A literature review based on qualitative scientific articles. Results: In the compilation of 10 qualitative scientific articles, three categories emerged: experience of personal information, experience of everyday support and experience of reflection. Relatives experienced a lack of information that there was support available in the care of a close relative with dementia at home, and how they get access to this support. The relatives who, on the other hand, received information about support also appreciated the support as it contributed to relief in everyday life and a better quality of life. In addition, relatives felt that the support had contributing factors to coping with everyday life. Many relatives had a positive experience of receiving support in written, oral and group form, a support that also gave rise to reflection. Conclusion: Caring for a close relative with dementia can be both physically and mentally stressful, which means that the need for support is important for the relative. Support for relatives needs to come in at an early stage, but since the need for support changes over time, continuous follow-up is also required in order maintain adequate care.

Bakgrund: Kronisk sjukdom är ett permanent sjukdomstillstånd. Hälsa ur holistiskt perspektiv ses som en helhet, därav bör vården utformasutifrån den enskilda individens behov. Idag vårdas många personer hemifrån av en närstående. Den informella vårdaren har enbetydande roll i den hälsofrämjande processen. Sjuksköterskans ansvar innefattar att bidra till hälsa, minska lidande och förebygga skador, och att kunna inkludera närstående vid personcentrerad vård. Syfte: Syftet var att belysa närståendes upplevelser av att vårda en anhörig med kronisk sjukdom. Metod: En allmän litteraturöversikt utfördes i enlighet med Fribergs metodbeskrivning. Databaserna Cinahl Complete och PubMed användes vid sökning av sökorden extended family, family, caregivers, chronic disease och middle aged. Resultatet bygger på nio kvalitativa artiklar samt två artiklar med mixad metod. Resultat: Deltagarnas upplevelser kunde skilja sig åt. Vardagen blev påverkad, vården för anhöriga innebar känslomässiga implikationer vilket påverkade familjedynamiken. Resultatet tydde också på att deltagarnas behov av interaktioner med sjukvården ansågs vara en viktig del av upplevelsen. Sammanfattning: Deltagarna upplevde den vårdande rollen som begränsade samt att den försvårade anpassningen till vardagen. Detta kunde vara komplicerat för relationen mellan vårdaren och den anhörige. Upplevelserna var främst negativa men kunde även uppvisa positiva inverkan. / Background: Chronic disease is a permanent state of illness. Health from a holistic perspective is perceived as a entirety and therefore caregiving should be designed in relation to each individual's needs. Many people get homecare from a relative today. The informal caregivers have a meaningful role in the promotion of health. Nurses are responsible for contributingto good health, reduced suffering, and injury prevention and to also include relatives with person centered care. Aim: The aim of this study was to shed light on experiences of caregiving for a relative with a chronic illness. Method: A literature review was made according to Friberg’s method description. The databases Cinahl Complete and PubMed were used for the search with the keywords extended family, family, caregivers, chronic disease and middle aged. The result of the study was based on nine qualitative articles, and two using mixed methods. Results: The participants' experiences could differ from one another. These described how caring for a relative impacts everyday life, impeared health, impact upon relations and significance of interaction with healthcare. Summary: Participants experienced the caring role as limiting, and complicated to combine with everyday life. This could complicate the relationship between the caregiver and the relative. The experiences of caring for their relatives were mostly negative but the result could also show some positive outcomes.

Objective This study explores how caregiver relationship quality with family, patient, and patient's health care provider (HCP) is associated with subjective caregiver burden during the early treatment phase for late-stage cancer. Method Burden and relationship quality were assessed in telephone interviews with family caregivers (FCGs) of advanced cancer patients. The five subscales of the Caregiver Reaction Assessment measured burden, while relationships were measured with the Family Relationship Index, the Family Inventory of Needs subscale of met needs, and a scale assessing family discord in cancer communication. Results Multiple linear regression analyses in SPSS (v16) of 420 FCGs showed that higher quality relationship with family was associated with lower burden in FCG abandonment, health, scheduling (p<0.001) and finances (p<0.01). Higher quality relationship with patients' HCPs was associated with lower burden in FCG abandonment (p< 0.05), health, and finances (p<0.001). More discordant communication in patient relationship was associated with lower financial burden (p<0.05). Relationship quality was not associated with caregiver self-esteem. Conclusions Findings demonstrate that caregiver relationship quality with family and with HCP are important factors in understanding caregiver burden during the early treatment phase of late-stage cancer care.