<p>När döden inträffar plötsligt, har efterlevande inte fått någon chans till mental förberedelse inför dödsfallet. Efterlevande löper därmed stor risk att drabbas av komplicerade sorgereaktioner, med psykisk och fysisk ohälsa som följd. Denna grupp möts inte i tillräckligt stor utsträckning av strukturerad evidensbaserad omvårdnad, i proportion till efterlevande vid väntade dödsfall. Syftet med litteraturstudien var att belysa närståendes behov vid plötslig död samt att understryka relevanta omvårdnadsåtgärder i akuta skeden. Litteraturstudien är baserad på 13 vetenskapliga artiklar som på olika sätt behandlar närståendes behov vid plötslig död. Resultatet behandlar närståendes behov utifrån fem kategorier: bemötande, information, närvaro, avsked och uppföljning. Närstående upplever ofta brister i sjukvårdspersonalens förmåga att möta deras behov. Brister som rapporterats gäller framförallt närståendes behov av bemötande och information, vilket kan sätta djupa spår hos efterlevande. Kunskapen om nyttan av att möta efterlevandes behov av uppföljning efter plötsliga dödsfall bedöms i dagsläget inte vara tillräcklig. Kunskapen om närståendes behov vid plötsliga dödsfall behöver fördjupas. Ytterligare forskning krävs, då området i dagsläget är eftersatt. Initialt bör dock existerande forskning implementeras.</p> / <p>When sudden death occurs, the survivors do not have a chance to mentally prepare for the loss. Survivors suffer high risk of complicated grief reactions, resulting in mental and physical illness. This group is not met sufficiently by structured evidence-based care, in proportion to the care of survivors expecting the loss. The purpose of the literature study was to highlight the needs of relatives confronted with sudden death, and to emphasize relevant nursing measures in acute stages. This paper is a survey of literature based on 13 research articles, in various ways dealing with needs of bereaved confronted with sudden death. The result deals with the needs of close relatives based on five categories: caring, information, proximity, viewing the body and follow-up. Survivors often experience gaps in health professionals' ability to meet their needs. Deficiencies regarding relatives’ needs of caring and information often results in negative long lasting memories. Knowledge of the benefits of meeting the needs of survivors regarding follow-up after a sudden death, is to this date considered insufficient. Knowledge of survivors confronted with sudden death need to be further explored. Further research is required, since the area of current situation is neglected. Initially, however, existing research need to be implemented.</p>

När döden inträffar plötsligt, har efterlevande inte fått någon chans till mental förberedelse inför dödsfallet. Efterlevande löper därmed stor risk att drabbas av komplicerade sorgereaktioner, med psykisk och fysisk ohälsa som följd. Denna grupp möts inte i tillräckligt stor utsträckning av strukturerad evidensbaserad omvårdnad, i proportion till efterlevande vid väntade dödsfall. Syftet med litteraturstudien var att belysa närståendes behov vid plötslig död samt att understryka relevanta omvårdnadsåtgärder i akuta skeden. Litteraturstudien är baserad på 13 vetenskapliga artiklar som på olika sätt behandlar närståendes behov vid plötslig död. Resultatet behandlar närståendes behov utifrån fem kategorier: bemötande, information, närvaro, avsked och uppföljning. Närstående upplever ofta brister i sjukvårdspersonalens förmåga att möta deras behov. Brister som rapporterats gäller framförallt närståendes behov av bemötande och information, vilket kan sätta djupa spår hos efterlevande. Kunskapen om nyttan av att möta efterlevandes behov av uppföljning efter plötsliga dödsfall bedöms i dagsläget inte vara tillräcklig. Kunskapen om närståendes behov vid plötsliga dödsfall behöver fördjupas. Ytterligare forskning krävs, då området i dagsläget är eftersatt. Initialt bör dock existerande forskning implementeras. / When sudden death occurs, the survivors do not have a chance to mentally prepare for the loss. Survivors suffer high risk of complicated grief reactions, resulting in mental and physical illness. This group is not met sufficiently by structured evidence-based care, in proportion to the care of survivors expecting the loss. The purpose of the literature study was to highlight the needs of relatives confronted with sudden death, and to emphasize relevant nursing measures in acute stages. This paper is a survey of literature based on 13 research articles, in various ways dealing with needs of bereaved confronted with sudden death. The result deals with the needs of close relatives based on five categories: caring, information, proximity, viewing the body and follow-up. Survivors often experience gaps in health professionals' ability to meet their needs. Deficiencies regarding relatives’ needs of caring and information often results in negative long lasting memories. Knowledge of the benefits of meeting the needs of survivors regarding follow-up after a sudden death, is to this date considered insufficient. Knowledge of survivors confronted with sudden death need to be further explored. Further research is required, since the area of current situation is neglected. Initially, however, existing research need to be implemented.

Introdução: O relacionamento estabelecido entre profissionais de saúde, criança e família durante os cuidados de final de vida é complexo e multidimensional. Poucas evidências mostram como os relacionamentos são estabelecidos no contexto de final de vida da criança e influenciam no luto após a morte de um filho. Objetivo: Interpretar a experiência de pais sobre os relacionamentos estabelecidos com os profissionais de saúde durante o final de vida da criança com câncer no hospital. Método: Trata-se de uma pesquisa qualitativa, guiada pela hermenêutica filosófica de Gadamer. A coleta dos dados foi realizada por meio de observações de campo em um hospital oncológico pediátrico com famílias de crianças hospitalizadas em situação de final de vida, entrevista com pais enlutados pelo menos 6 meses após o óbito da criança e análise de prontuários. Para a análise dos dados, o processo de transcrição, leitura e releitura dos dados, revisão das notas de campo e reflexão sobre os dados com outros pesquisadores ajudaram na compreensão do fenômeno para a geração de interpretações. Para tanto, foram identificadas unidades de significados nos dados que, posteriormente, foram agrupadas por similaridade para a formação indutiva de temas. Resultados: Os relacionamentos entre pais e profissionais da saúde no final de vida da criança com câncer hospitalizada desvelam fenômenos do encontro e da interação interpessoal presentes na situação de doença, morte e perda. Esses relacionamentos são permeados pela presença de valores humanos e são estabelecidos de forma dinamica com vínculos diversos. Existem componentes evidentes no relacionamento durante o final de vida da criança no hospital, tal como o amparo, o silêncio, a deterioração, a tolerância, a hierarquia, o compartilhamento e a confiança, bem como, fatores internos e externos que influenciam nas interações. Por meio dos relacionamentos, os pais reavaliam o próprio papel, enquanto vivenciavam a experiência inesperada de perder um filho e significados atribuídos à doença e à perda são associados aos encontros mesmo anos após a morte do filho. Considerações finais: Os relacionamentos servem de base para fortalecer e suportar os pais a exercerem o papel de cuidadores para garantir a excelência no cuidado do filho. A qualidade dos relacionamentos entre pais e profissionais da saúde torna-se uma lembrança marcante no processo de luto e estabelecem uma conexão permanente com o filho falecido. Um olhar para o relacionamento entre familiares e profissionais integrando a ciência do cuidado proporciona a base de paradigmas não positivistas, que são urgentes nas situações de final de vida. Este estudo pode contribuir com as políticas de enfermagem na consolidação de futuras diretrizes sobre a qualidade na prática do cuidado de final de vida da criança, facilitando para as famílias manter vínculos significativos durante o processo de doença, perda e luto. / Introduction: The relationship established between family and healthcare providers during the childs end-of-life care is complex and multidimensional. There are few evidences which explore how these relationships during the childs last hospitalization influence familial adaptation after loss. Objective: To interpret parents experience in their relationship with healthcare providers during the childs end-of-life with cancer in the hospital. Methods: This is a qualitative research, guided by Gadamers philosophical hermeneutics. Data collection was through field observations conducted in a pediatric oncology hospital with hospitalized families in end-of-life situation, interviews with bereaved parents at least 6 month after the childs death and medical records analysis. For the data analysis, the process of transcription, reading and re-reading the data, reviewing field notes and reflection on the data with other researchers helped understand the phenomenon to generate interpretations. Therefore, units of meaning emerged from the data were grouped, and themes were inductively determined and submitted to an interpretation process. Results: Relationships between parents and healthcare providers during a childs end-of-life process unveil the encounters and interpersonal interactions phenomena in illness and loss trajectory. These relationships are permeated with human values and are established in a dynamic way with various bondings. There are evident components in a child´s end-of-life context, such as presence, silence, deteriorations, tolerance, hierarchy, collaboration and trusting, as well as internal and external factors which influence the interactions. Through relationships, parents reevaluate their own role, while they live the unexpected experience of losing a child and attribute meanings to the loss. Final considerations: Relationships serve as a basis for strengthening and supporting parents in providing excellence in the child\'s care. The quality of the relationship between parents and healthcare providers is a remarkable memory of the child\'s life during the bereavement process. Looking into the relationship between parents and providers integrating it with caring science provides a basis for non-positivist paradigms which are urgent in end-of-life situations. This study aims to contribute to end-of-life nursing policies in recognizing the components to improve the quality of the relationships as a starting point for care which will allow families to have a safe base while experiencing the child\'s illness and the bereavement process.

La literatura científica sitúa la autonomía del paciente en la toma de decisiones en el ámbito clínico, en una encrucijada entre dos posiciones éticas; el paternalismo y la elección informada. Analizar los textos de los registros de las historias clínicas y los discursos de las enfermeras, mediante una metodología cualitativa y desde la perspectiva de la ética foucaultiana, permite conocer los factores que determinan el poder de decisión de los pacientes. Este estudio revela que el paciente no es autónomo en la toma de decisiones sobre sus cuidados debido; a una determinada institucionalización de la atención, que marca los ritmos de las decisiones, a las características de las relaciones interprofesionales y a las dinámicas relacionales que se establecen entre los profesionales, en particular, de la enfermera con el paciente y la familia. Se debe liberar al paciente de las reglas impuestas, promoviendo su propia conducta, su propio estilo de vida. / The scientific literature places the patient autonomy in decision-making in the clinical setting, at a crossroads between two ethical positions, paternalism and informed choice. Analyze records of clinical histories and nurses discourses, using a qualitative methodology and from the perspective of foucauldian ethics, allows knowing the factors that determine the power of patient decision. This study reveals that the patient is not autonomous in making decisions about your care because, to a certain institutionalization of care, which marks the rhythms of the decisions, the characteristics of the interprofessional-relationships and relational dynamics that exist between professionals, in particular, of the nurse with the patient and family. It should free the patient from the rules imposed by promoting their own behavior, their own lifestyle. / La literatura científica situa l'autonomia del pacient en la presa de decisions en l'àmbit clínic, en una cruïlla entre dues posicions ètiques, el paternalisme i l'elecció informada. Analitzar els textos dels registres de les històries clíniques i els discursos de les infermeres, mitjançant una metodologia qualitativa i des de la perspectiva de l'ètica foucaultiana, permet conèixer els factors que determinen el poder de decisió dels pacients. Aquest estudi revela que el pacient no és autònom en la presa de decisions sobre les seves cures a causa, a una determinada institucionalització de l'atenció, que marca els ritmes de les decisions, a les característiques de les relacions interprofessionals i les dinàmiques relacionals que s'estableixen entre els professionals, en particular, de la infermera amb el pacient i la família. Cal alliberar el pacient de les regles imposades, promovent la seva pròpia conducta, el seu propi estil de vida.