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Introduktion: I Sverige dör 90,000 individer årligen varav cirka 80% bedöms vara i behov av palliativ vård. Patientgrupperna med störst behov av palliativ vård är bland annat cancerpatienter, demenssjuka och hjärt- och kärlsjuka personer. Då fler lever allt längre liv på grund av den utvecklade sjukvården har positiva vårdupplevelser blivit ett viktigt mål för både anhöriga och patienter. Forskning visar att det finns vissa aspekter med den palliativa vårdprocessen som påverkar anhörigas upplevelser, både positivt och negativt.  Syfte: Syftet med litteraturöversikten var att beskriva anhörigas upplevelser av den palliativa vården.  Metod: En litteraturöversikt med en deskriptiv design som baserats på tio kvalitativa vetenskapliga originalartiklar hämtade från PubMed och CINAHL. Arbetet använder Joyce Travelbees omvårdnadsteori human-to-human relationship model of nursing som teoretisk referensram.  Resultat: Två huvudkategorier och tillhörande underkategorier identifierades: Livsförändringar och Att vara delaktig i vården. Livsförändringar beskrev upplevelser av att vara en hängiven följeslagare som anhörig till den palliativa patienten, hur sociala relationer påverkades av nya prioriteringar i livet, de anhörigas önskan att vara delaktig i omvårdnadsprocessen samt hur vården i livets slutskede såg ut. Att vara delaktig i vården beskrev anhörigas behov av stöd och kommunikation under vårdprocessen, vikten av adekvat information från vårdgivare och kunskap om medicinska aspekter samt vårdkvalitetens och miljöns betydelse för vårdupplevelsen.  Slutsats: Anhöriga visade sig ha olika upplevelser av den vård som deras sjuka familjemedlemmar fick. I de flesta fall var upplevelserna främst negativa och många önskade att majoriteten av alla vårdaspekter förbättrades för deras närstående skull. Brister i kommunikationen och vårdkvaliteten var två av de mest förekommande problemområdena de deltagande anhöriga hade varit med om. Det finns ett behov av förbättrad kommunikation från läkare samt inkluderande av närstående inom vården för att vårdkvaliteten ska förbättras. / Introduction: In Sweden, nearly 90,000 individuals die annually, of which approximately 80% are in use of palliative care. The patient groups with the greatest need for this care are patients with cancer, dementia, and cardiovascular diseases. As more people live a longer life due to the developed healthcare system, significant care experiences have become an important goal for both relatives and for the patient. Research shows that there are certain aspects of the palliative care process that affect relatives' experiences, both positively and negatively.  Aim: The aim of this literature review was to describe relatives' experiences of palliative care. Method: A literature review with a descriptive design based on ten original qualitative scientific articles retrieved from PubMed and CINAHL. The overview uses Joyce Travelbees nursing theory human-to-human relationship model of nursing as a theoretical frame of reference. Results: Two main categories and associated subcategories were identified: Life changes and To be involved in care. Life changes described experiences of being a devoted companion for the palliative patient, how social relationships were affected by new priorities in life, the relatives' desire to be involved in the process and what end-of-life care looked like. To be involved in care, described relatives' need for support and communication during the care process, the importance of adequate information from care providers and knowledge of medical aspects, as well as the importance of care quality and the environment for the care experience. Conclusion: Relatives were found to have different experiences of the care which their sick family members received. In most cases, the experiences were negative, and many wished that most of all aspects of care were improved for the sake of their loved ones. Shortcomings in communication and the quality of care were two of the most common problem areas the participating relatives had experienced. There is a need for improved communication skills from doctors and nurses as well as the inclusion of relatives in care, to improve the quality of care.

[pt] A longevidade da população e, consequentemente, o aumento de doenças crônicodegenerativas que causam dependência, são uma realidade com a qual as famílias brasileiras estão se defrontando. No imaginário social e familiar há uma expectativa de que mulheres se responsabilizem pelos cuidados dos enfermos e dos idosos. Considerando a diversidade de papéis ocupados pela mulher na atualidade – filha, mãe, esposa, profissional –, o cuidado ao idoso dependente torna-se um desafio para esta, fazendo emergir inúmeros sentimentos e mudanças na dinâmica familiar. Este estudo teve como objetivo geral investigar a vivência da mulher cuidadora familiar principal de idoso dependente. Como objetivos específicos, pretendemos investigar como a mulher cuidadora de idoso dependente percebe a repercussão da função de cuidar em sua família; e compreender as especificidades do vínculo entre a mulher cuidadora e o idoso dependente. Realizamos uma pesquisa qualitativa, na qual entrevistamos oito mulheres cuidadoras de idoso dependente, com idades entre 45 e 57 anos. Da análise do material discursivo coletado nas entrevistas emergiram cinco categorias de análise: 1) Da autonomia à dependência: tempos do cuidado; 2) Experiência do cuidado e seus impactos; 3) O lugar da cuidadora principal de idoso familiar dependente; 4) Rede de apoio aos cuidados e 5) Lutos no cuidado. O diagnóstico de demência foi prevalente neste estudo e causou grande impacto nas cuidadoras. A evolução da doença, com as perdas cognitivas e aumento da dependência, despertou sentimentos de desamparo, impotência, tristeza e culpa, sobrecarregando emocionalmente a maioria das cuidadoras. A naturalização do lugar de cuidadora e as perdas vivenciadas são percebidas pelas entrevistadas como um destino. Elas não se questionam sobre as repercussões da sobrecarga associada ao cuidado com o familiar idoso dependente nas suas vidas. Contudo, relatam ter menos oportunidades de trabalho e de progressão na carreira, assim como restrições na vida social e no lazer. Recorrer a tratamentos médicos e psicológicos foi uma estratégia para minimizar os efeitos nocivos da sobrecarga. O suporte da rede de apoio foi fundamental para que as mulheres cuidadoras continuassem a exercer outras funções como trabalhadora e mãe. / [en] The longevity of the population and, consequently, the increase of chronicdegenerative diseases that cause dependence, are a reality with which the Brazilian families are facing. In the social and family imaginary there is an expectation that women will be responsible for the care of the sick and the elderly. Considering the diversity of roles currently occupied by women – daughter, mother, wife, professional – care for the dependent elderly becomes a challenge for this, causing innumerable feelings and changes in family dynamics to emerge. This study aimed to investigate the experience of the female family caregiver leading to the elderly dependent. We intended to investigate how the female caregiver perceives the repercussion of the caring function in their family; and to understand the specificities of the bond between the caregiver and the dependent elderly. We conducted a qualitative research, in which we interviewed eight women who were dependent caregivers, aged between 45 and 57 years. From the analysis of the discursive material collected in the interviews emerged five categories of analysis: 1) From autonomy to dependency: times of care; 2) Experience of care and its impacts; 3) The place of the primary caregiver of dependent elderly family members; 4) Care network and 5) Grief within the care. The diagnosis of dementia was prevalent in this study and had a great impact on caregivers. The evolution of the disease, with cognitive losses and increased dependence, aroused feelings of helplessness, impotence, sadness and guilt, emotionally overwhelming most caregivers. The naturalization of the caregiver s place and the lived losses are perceived by the interviewees as a destination. They do not question the repercussions of the overload associated with care with the dependent elderly relative in their lives. However, they report fewer opportunities for work and career advancement, as well as restrictions on social and leisure life. Using medical and psychological treatments was a strategy to minimize the harmful effects of overload. The support network was essential for female caregivers to continue to perform other roles as both worker and mother.

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