Long-term effects of flexible visitation in the intensive care unit on family members' mental health: 12-month results from a randomized clinical trial.

PURPOSE: The aim of this study was to assess the effects of flexible intensive care unit (ICU) visitation on the 1-year prevalence of post-traumatic stress, anxiety and depression symptoms among family members of critically ill patients. METHODS: This is a long-term outcome analysis of a cluster-crossover randomized clinical trial that evaluated a flexible visitation model in the ICU (12 h/day) compared to a restrictive visitation model (median 1.5 h/day) in 36 Brazilian ICUs. In this analysis, family members were assessed 12 months after patient discharge from the ICU for the following outcomes: post-traumatic stress symptoms measured by the Impact Event Scale-6 and anxiety and depression symptoms measured by the Hospital Anxiety and Depression Scale. RESULTS: A total of 519 family members were analyzed (288 in the flexible visitation group and 231 in the restrictive visitation group). Three-hundred sixty-nine (71.1%) were women, and the mean age was 46.6 years. Compared to family members in the restrictive visitation group, family members in the flexible visitation group had a significantly lower prevalence of post-traumatic stress symptoms (21% vs. 30.5%; adjusted prevalence ratio [aPR], 0.91; 95% confidence interval [CI] 0.85-0.98; p = 0.01). The prevalence of anxiety (28.9% vs. 33.2%; aPR 0.93; 95% CI 0.72-1.21; p = 0.59) and depression symptoms (19.2% vs. 25%; aPR, 0.78; 95% CI 0.60-1.02; p = 0.07) did not differ significantly between the groups. CONCLUSION: Flexible ICU visitation, compared to the restrictive visitation, was associated with a significant reduction in the 1-year prevalence of post-traumatic stress symptoms in family members.

Mechanism of a Flexible ICU Visiting Policy for Anxiety Symptoms Among Family Members in Brazil: A Path Mediation Analysis in a Cluster-Randomized Clinical Trial.

OBJECTIVES: To investigate whether the effect of a flexible ICU visiting policy that includes flexible visitation plus visitor education on anxiety symptoms of family members is mediated by satisfaction and involvement in patient care. DESIGN: We embedded a multivariable path mediation analysis within a cluster-randomized crossover trial as a secondary analysis of The ICU Visits Study (ClinicalTrials.gov number: NCT02932358). SETTING: Thirty-six medical-surgical ICUs in Brazil. PATIENTS: Closest relatives of adult ICU patients. INTERVENTIONS: Flexible visitation (12 hr/d) supported by family education or usual restricted visitation (median, 1.5 hr/d). MEASUREMENTS AND MAIN RESULTS: Overall, 863 family members were assessed (mean age, 44.7 yr; women, 70.1%). Compared with the restricted visitation (n = 436), flexible visitation (n = 427) resulted in better mean anxiety scores (6.1 vs 7.8; mean difference, -1.78 [95% CI, -2.31 to -1.22]), as well as higher standardized scores of satisfaction (67% [95% CI, 55-79]) and involvement in patient care (77% [95% CI, 64-89]). The mediated effect of flexible visitation on mean anxiety scores through each incremental sd of satisfaction and involvement in patient care were -0.47 (95% CI, -0.68 to -0.24) and 0.29 (95% CI, 0.04-0.54), respectively. Upon exploratory analyses, emotional support, helping the ICU staff to understand patient needs, helping the patient to interpret ICU staff instructions, and patient reorientation were the domains of involvement in patient care associated with increased anxiety. CONCLUSIONS: A flexible ICU visiting policy reduces anxiety symptoms among family members and appears to work by increasing satisfaction. However, increased participation in some activities of patient care as a result of flexible visitation was associated with higher severity of anxiety symptoms.

Support systems in the pediatric intensive therapy unit: family perspective.

OBJECTIVE: to identify and to analyze the support systems used by family members for the adaptation process to the child's hospitalization in the intensive care unit. METHOD: qualitative research, conducted in a hospital located in the Southern Brazil. Data were collected between June and July 2017, through semi-structured interviews with family members of hospitalized children. The adaptation model and thematic analysis were used for data processing. RESULTS: four themes emerged: family and friends as a support system; the family members of other hospitalized children as a support system; spirituality as a support system; health team as a support system. FINAL CONSIDERATIONS: identifying the support systems used in the process of family adaptation and their manifestations of interdependence was possible. The need of the nurses to intensify the listening to strengthen the support system of the family members of the children hospitalized in the unit studied.

Meanings attributed by family and patients to family presence in emergency rooms / Significados atribuidos por familiares y pacientes a la presencia de la familia en emergencias / Significados atribuídos por familiares e pacientes à presença da família em emergências

ABSTRACT Objective: to understand the process that leads adult and family patients to support family presence in emergency care. Method: a qualitative study that adopted Symbolic Interactionism as a theoretical reference and the Grounded Theory as a methodological framework. The theoretical sample consisted of 15 relatives and 15 patients assisted at two emergency units in the South of Brazil. Data were analyzed using open, axial and selective coding. Results: the central category "Convergence of ideas: family members and patients supporting family presence in emergency care" is supported by the categories: "Affectionate relationship among family members"; "Tacit obligation to care for the sick relative"; "Benefits for the family"; "Benefits for the patient"; and "Benefits for the health team". Conclusion: family presence in emergency care provides maintenance and strengthening of affectionate bonds among relatives and the experience of more sensitive and qualified care.

RESUMEN Objetivo: comprender el proceso que lleva a pacientes adultos y familiares a apoyar la presencia de la familia en la atención de emergencia. Método: estudio cualitativo que adoptó el Interaccionismo Simbólico como referencial teórico y la Teoría Fundamentada en los Datos como referencial metodológico. El muestreo teórico fue compuesta por 15 familiares y 15 pacientes atendidos en dos unidades de emergencia en el sur de Brasil. Los datos fueron analizados por medio de codificación abierta, axial y selectiva. Resultados: la categoría central "Convergencia de ideas: familiares y pacientes apoyando la presencia de la familia en la atención de emergencia" es sostenida por las categorías: "Afetuosa relación entre los miembros de la familia"; "Obligación tácita de cuidar del familiar enfermo "; "Beneficios para la familia"; "Beneficios para el paciente"; y "Beneficios para el equipo de salud". Conclusión : la presencia familiar en la atención de emergencia proporciona el mantenimiento y el fortalecimiento de los lazos afectivos entre los familiares y la vivencia de cuidados más sensibles y calificados.

RESUMO Objetivo: compreender o processo que leva pacientes adultos e familiares a apoiarem a presença da família no atendimento emergencial. Método: estudo qualitativo que adotou o Interacionismo Simbólico como referencial teórico e a Teoria Fundamentada nos Dados como referencial metodológico. A amostragem teórica foi composta por 15 familiares e 15 pacientes atendidos em duas unidades emergenciais no Sul do Brasil. Os dados foram analisados por meio de codificação aberta, axial e seletiva. Resultados: a categoria central "Convergência de ideias: familiares e pacientes apoiando a presença da família no atendimento emergencial" é sustentada pelas categorias: "Afetuosa relação entre os membros da família"; "Obrigação tácita de cuidar do familiar enfermo"; "Benefícios para a família"; "Benefícios para o paciente"; e "Benefícios para a equipe de saúde". Conclusão: a presença familiar no atendimento emergencial proporciona a manutenção e o fortalecimento dos laços afetivos entre os familiares e a vivência de cuidados mais sensíveis e qualificados.

Meanings attributed by family and patients to family presence in emergency rooms.

OBJECTIVE: to understand the process that leads adult and family patients to support family presence in emergency care. METHOD: a qualitative study that adopted Symbolic Interactionism as a theoretical reference and the Grounded Theory as a methodological framework. The theoretical sample consisted of 15 relatives and 15 patients assisted at two emergency units in the South of Brazil. Data were analyzed using open, axial and selective coding. RESULTS: the central category "Convergence of ideas: family members and patients supporting family presence in emergency care" is supported by the categories: "Affectionate relationship among family members"; "Tacit obligation to care for the sick relative"; "Benefits for the family"; "Benefits for the patient"; and "Benefits for the health team". CONCLUSION: family presence in emergency care provides maintenance and strengthening of affectionate bonds among relatives and the experience of more sensitive and qualified care.

Sepsis and AMI: knowledge of the population visiting parks and patient companions. / Sepse e IAM: conhecimento da população frequentadora de parques e acompanhantes de pacientes.

OBJECTIVE: To identify the population's knowledge of the terms "sepsis" and "acute myocardial infarction" (AMI). METHOD: Cross-sectional quantitative study. Data was collected through the application of a questionnaire to two groups of participants, as follows: individuals who visit parks in Porto Alegre, State of Rio Grande do Sul and companions of patients of a university hospital in Porto Alegre. Analysis of the results was performed by descriptive and inferential statistics. RESULTSThe sample consisted of 1,986 respondents: 1,455 parkgoers and 531 companions of patients admitted to the hospital. Regarding the knowledge of sepsis, only 19.1% of the respondents had already heard about the subject. However, compared to knowledge about AMI, it was found that 98.7% knew the term. CONCLUSIONS: The study found that the scarce knowledge of the population about the term "sepsis" is related to the social level of the respondents, demonstrating poor access to information about health care.

Sepse e IAM: conhecimento da população frequentadora de parques e acompanhantes de pacientes / Sepse y IAM: conocimiento de la población frecuentadora de parques y acompañantes de pacientes / Sepsis and AMI: knowledge of the population visiting parks and patient companions

Resumo OBJETIVO Identificar o conhecimento da população referente aos termos "sepse" e "infarto agudo do miocárdio" (IAM). MÉTODO Estudo transversal, quantitativo. Coleta de dados realizada com aplicação de um questionário, para dois grupamentos de participantes distintos: frequentadores de parques selecionados de Porto Alegre/RS e acompanhantes de pacientes internados em um hospital universitário de Porto Alegre/RS. A análise dos resultados foi realizada pela estatística descritiva e inferencial. RESULTADOS A amostra constitui-se de 1986 entrevistados, 1455 de parques e 531 acompanhantes de pacientes internados no hospital. Em relação ao conhecimento de sepse, apenas 19,1% dos entrevistados já tinham ouvido falar sobre o tema, já, em comparação ao conhecimento do IAM, 98,7% souberam responder sobre o termo. CONCLUSÕES Evidenciou-se que o déficit de conhecimento da população sobre o termo "sepse" está diretamente relacionado com o nível social dos entrevistados, demonstrando um déficit no acesso à informação no cuidado em saúde.

Resumen OBJETIVO Identificar el conocimiento de la población referente al término "sepsis" e "infarto del miocardio" (IAM). MÉTODO Estudio transversal, cuantitativo. La recolección de datos realizada con aplicación de un cuestionario, para dos grupos de participantes distintos: frecuentadores de parques selecionados de Porto Alegre/RS y acompañantes de pacientes internados en un hospital universitario de Porto Alegre/RS. El análisis de los resultados fue realizado por la estadística descriptiva e inferencial. RESULTADOS La muestra se constituye de 1986 entrevistados, 1455 de parques y 531 acompañantes de pacientes internados en el hospital. En cuanto al conocimiento de sepsis, sólo el 19,1% de los entrevistados ya había oído hablar sobre el tema, ya en comparación al conocimiento del IAM, el 98,7% supieron responder sobre el término. CONCLUSIONES Se evidenció que el déficit de conocimiento de la población sobre el término "sepsis" está directamente relacionado con el nivel social de los entrevistados, demostrando un déficit en el acceso a la información en el cuidado en salud.

Abstract OBJECTIVE To identify the population's knowledge of the terms "sepsis" and "acute myocardial infarction" (AMI). METHOD Cross-sectional quantitative study. Data was collected through the application of a questionnaire to two groups of participants, as follows: individuals who visit parks in Porto Alegre, State of Rio Grande do Sul and companions of patients of a university hospital in Porto Alegre. Analysis of the results was performed by descriptive and inferential statistics. RESULTSThe sample consisted of 1,986 respondents: 1,455 parkgoers and 531 companions of patients admitted to the hospital. Regarding the knowledge of sepsis, only 19.1% of the respondents had already heard about the subject. However, compared to knowledge about AMI, it was found that 98.7% knew the term. CONCLUSIONS The study found that the scarce knowledge of the population about the term "sepsis" is related to the social level of the respondents, demonstrating poor access to information about health care.

Statistical analysis plan for a cluster-randomized crossover trial comparing the effectiveness and safety of a flexible family visitation model for delirium prevention in adult intensive care units (the ICU Visits Study).

BACKGROUND: Most adult intensive care units (ICUs) worldwide adopt restrictive family visitation models (RFVMs). However, evidence, mostly from non-randomized studies, suggests that flexible adult ICU visiting hours are safe policies that can result in benefits such as prevention of delirium and increase in satisfaction with care. Accordingly, the ICU Visits Study was designed to compare the effectiveness and safety of a flexible family visitation model (FFVM) vs. an RFVM on delirium prevention among ICU patients, and also to analyze its potential effects on family members and ICU professionals. METHODS/DESIGN: The ICU Visits Study is a cluster-randomized crossover trial which compares an FFVM (12 consecutive ICU visiting hours per day) with an RFVM (< 4.5 ICU visiting hours per day) in 40 Brazilian adult ICUs. Participant ICUs are randomly assigned to either an FFVM or RFVM in a 1:1 ratio. After enrollment and follow-up of 25 patients, each ICU is crossed over to the other visitation model, until 25 more patients per site are enrolled and followed. The primary outcome is the cumulative incidence of delirium measured by the Confusion Assessment Method for the ICU. Secondary and tertiary outcomes include relevant measures of effectiveness and safety of ICU visiting policies among patients, family members, and ICU professionals. Herein, we describe all primary statistical procedures that will be used to evaluate the results and perform exploratory and sensitivity analyses of this study. This pre-specified statistical analysis plan was written and submitted without knowledge of the study data. DISCUSSION: This a priori statistical analysis plan aims to enhance the transparency of our study, facilitating unbiased analyses of ICU visit study data, and provide guidance for statistical analysis for groups conducting studies in the same field. TRIAL REGISTRATION: ClinicalTrials.gov, NCT02932358 . Registered on 11 October 2016.

Anxiety, depression, and satisfaction in close relatives of patients in an open visiting policy intensive care unit in Brazil.

PURPOSE: The purpose of the study is to evaluate the satisfaction and symptoms of anxiety and depression in family members in an open visiting intensive care unit (ICU). MATERIAL AND METHODS: A prospective study conducted in a 22-bed mixed ICU in a tertiary hospital in Sao Paulo, Brazil. Family members were enrolled 2 days after admission, and they completed a modified version of Critical Care Family Needs Inventory and the Hospital Anxiety and Depression Scale (HADS). RESULTS: A total of 471 families were interviewed between March 2011 and 2013. Prevalence of anxiety and depression were of 34% and 17%, respectively. We found a high satisfaction score, median of 13 (12-14), and 5% of families were dissatisfied. The daily visiting time was 12 (8-22) hours, and until 10 hours per day, there was a positive association between visiting hours and satisfaction (P = .004). Dissatisfied families reported higher rates of anxiety and depression (P < .001). Visiting hours presented negative interaction between HADS and Critical Care Family Needs Inventory. Patients' severity had a trend toward dissatisfaction (P = .08) and affected emotional disorders (P < .001). CONCLUSIONS: Family members in an open visit ICU reported low rates of symptoms of anxiety and depression and high satisfaction. Visiting hours were associated with the satisfaction score and were a protective factor for family members with higher HADS score.

Políticas de visitação em unidades de terapia intensiva no Brasil: um levantamento multicêntrico / Intensive care unit visitation policies in Brazil: a multicenter survey

Objetivo: Este estudo teve como objetivo determinar a política de visitação predominante nas unidades de terapia intensiva e quais comodidades proporcionadas aos visitantes. Métodos: Foram enviados 800 convites a endereços de e-mail de médicos e enfermeiros intensivistas listados nos grupos de pesquisa da Rede da Associação de Medicina Intensiva Brasileira e da Rede Brasileira de Pesquisa em Terapia Intensiva. A mensagem por e-mail continha um link para um questionário de 33 itens a respeito do perfil de suas respectivas unidades de terapia intensiva. Resultados: Foram incluídos no estudo os questionários de 162 unidades de terapia intensiva localizadas em todas as regiões do país, mas foram predominantes as das Regiões Sudeste (58%) e Sul (16%). Apenas 2,6% das unidades de terapia intensiva relataram ter políticas liberais de visitação, enquanto 45,1% das unidades de terapia intensiva possibilitavam dois períodos diários de visitação e 69,1% permitiam de 31 a 60 minutos de visita por período. Em situações especiais, como casos de fim de vida, 98,7% delas permitiam visitas em horários flexíveis. Cerca de metade das unidades de terapia intensiva (50,8%) não oferecia qualquer comodidade aos visitantes. Apenas 46,9% das unidades de terapia intensiva tinham uma sala de reunião com familiares, e 37% não dispunham de uma sala de espera. ...

Objective: This study aimed to determine which visitation policy was the most predominant in Brazilian intensive care units and what amenities were provided to visitors. Methods: Eight hundred invitations were sent to the e-mail addresses of intensivist physicians and nurses who were listed in the research groups of the Brazilian Association of Intensive Care Network and the Brazilian Research in Intensive Care Network. The e-mail contained a link to a 33-item questionnaire about the profile of their intensive care unit. Results: One hundred sixty-two questionnaires from intensive care units located in all regions of the country, but predominantly in the Southeast and South (58% and 16%), were included in the study. Only 2.6% of the intensive care units reported having liberal visitation policies, while 45.1% of the intensive care units allowed 2 visitation periods and 69.1% allowed 31-60 minutes of visitation per period. In special situations, such as end-of-life cases, 98.7% of them allowed flexible visitation. About half of them (50.8%) did not offer any bedside amenities for visitors. Only 46.9% of the intensive care units had a family meeting room, and 37% did not have a waiting room. Conclusion: Restrictive visitation policies are predominant in Brazilian intensive care units, with most of them allowing just two periods of visitation per day. There is also a lack of amenities for visitors. .

Implementation of the presence of companions during hospital admission for childbirth: data from the Birth in Brazil national survey.

Robust evidence of the benefits of continuous support during childbirth led to the recommendation that it should be offered for all women. In Brazil, it has been guaranteed by law since 2005, but scarce data on implementation is available. We aimed to estimate the frequency and associated socio-demographic, obstetric and institutional predictors of women having companionship during childbirth in the Birth in Brazil survey. Descriptive statistical analysis was done for the characterization of companions (at different moments of hospital stay), maternal and institutional factors; associations were investigated in bivariate and multivariate models. We found that 24.5% of women had no companion at all, 18.8% had continuous companionship and 56.7% had partial companionship. Independent predictors of having no or partial companionship at birth were: lower income and education, brown color of skin, using the public sector, multiparity, and vaginal delivery. Implementation of companionship was associated with having an appropriate environment, and clear institution al rules about women's rights to companionship.

Implementação da presença de acompanhantes durante a internação para o parto: dados da pesquisa nacional Nascer no Brasil / Implementación de la presencia de acompañantes durante el internamiento para el parto: datos de la encuesta nacional Nacer en Brasil / Implementation of the presence of companions during hospital admission for childbirth: data from the Birth in Brazil national survey

As evidências sobre os benefícios do apoio contínuo durante o parto levou à recomendação de que este apoio deve ser oferecido a todas as mulheres. No Brasil, ele é garantido por lei desde 2005, mas os dados sobre a sua implementação são escassos. Nosso objetivo foi estimar a frequência e fatores sociodemográficos, obstétricos e institucionais associados à presença de acompanhantes durante o parto na pesquisa Nascer no Brasil. Foi feita análise estatística descritiva para a caracterização dos acompanhantes (em diferentes momentos do tempo da internação), fatores maternos e institucionais; as associações foram investigadas em modelos bi e multivariada. Vimos que 24,5% das mulheres não tiveram acompanhante algum, 18,8% tinham companhia contínua, 56,7% tiveram acompanhamento parcial. Preditores independentes de não ter algum, ou parcial, foram: menor renda e escolaridade, cor parda da pele, usar o setor público, multiparidade e parto vaginal. A implementação do acompanhante foi associada com ambiência adequada e regras institucionais claras sobre os direitos das mulheres ao acompanhante.

La evidencia de los beneficios del apoyo continuo durante el parto llevó a la recomendación de que fuera ofrecido a todas las mujeres. En Brasil, se les garantiza a las mujeres por ley desde 2005, pero hay escasos datos sobre su aplicación. El objetivo fue estimar la frecuencia y factores asociados (socio-demográficas, obstétricos e institucionales) de las mujeres que tienen acompañantes durante el parto en la encuesta Nacer en Brasil. Una vez realizado el análisis estadístico descriptivo para la caracterización de los acompañantes (en diferentes momentos del parto), factores maternos e institucionales; las asociaciones investigaron los modelos bivariados y multivariados. El 24,5% de las mujeres no tenía ningún acompañante, el 18,7% tenían acompañantes continuos y el 56,7% los tenía parcialmente. Predictores independientes de no tener acompañantes o tenerlos parcialmente fueron: bajos ingresos y educación, color moreno de piel, usar el sector público de sanidad, la multiparidad y el parto vaginal. La implementación de acompañantes se asoció con un ambiente adecuado, y normas institucionales claras sobre los derechos de las mujeres al acompañante.

Robust evidence of the benefits of continuous support during childbirth led to the recommendation that it should be offered for all women. In Brazil, it has been guaranteed by law since 2005, but scarce data on implementation is available. We aimed to estimate the frequency and associated socio-demographic, obstetric and institutional predictors of women having companionship during childbirth in the Birth in Brazil survey. Descriptive statistical analysis was done for the characterization of companions (at different moments of hospital stay), maternal and institutional factors; associations were investigated in bivariate and multivariate models. We found that 24.5% of women had no companion at all, 18.8% had continuous companionship and 56.7% had partial companionship. Independent predictors of having no or partial companionship at birth were: lower income and education, brown color of skin, using the public sector, multiparity, and vaginal delivery. Implementation of companionship was associated with having an appropriate environment, and clear institution al rules about women’s rights to companionship.

Intensive care unit visitation policies in Brazil: a multicenter survey.

OBJECTIVE: This study aimed to determine which visitation policy was the most predominant in Brazilian intensive care units and what amenities were provided to visitors. METHODS: Eight hundred invitations were sent to the e-mail addresses of intensivist physicians and nurses who were listed in the research groups of the Brazilian Association of Intensive Care Network and the Brazilian Research in Intensive Care Network. The e-mail contained a link to a 33-item questionnaire about the profile of their intensive care unit. RESULTS: One hundred sixty-two questionnaires from intensive care units located in all regions of the country, but predominantly in the Southeast and South (58% and 16%), were included in the study. Only 2.6% of the intensive care units reported having liberal visitation policies, while 45.1% of the intensive care units allowed 2 visitation periods and 69.1% allowed 31-60 minutes of visitation per period. In special situations, such as end-of-life cases, 98.7% of them allowed flexible visitation. About half of them (50.8%) did not offer any bedside amenities for visitors. Only 46.9% of the intensive care units had a family meeting room, and 37% did not have a waiting room. CONCLUSION: Restrictive visitation policies are predominant in Brazilian intensive care units, with most of them allowing just two periods of visitation per day. There is also a lack of amenities for visitors.

End of life in the neonatal intensive care unit.

PURPOSE: Death at the beginning of life is tragic but not uncommon in neonatal intensive care units. In Portugal, few studies have examined the circumstances surrounding the final moments of neonates. We evaluated the care given to neonates and their families in terminal situations and the changes that had occurred one decade later. DESIGN AND METHODS: We analyzed 256 charts in a retrospective chart review of neonatal deaths between two periods (1992-1995 and 2002-2005) in a level III neonatal intensive care unit. RESULTS: Our results show differences in the care of dying infants between the two periods. The analysis of the 2002-2005 cohort four years revealed more withholding and withdrawing of therapeutic activities and more effective pain and distress relief; however, on the final day of life, 95.7% of the infants received invasive ventilatory support, 76.3% received antibiotics, 58.1% received inotropics, and 25.8% received no opioid or sedative administration. The 2002-2005 cohort had more spiritual advisor solicitation, a higher number of relatives with permission to freely visit and more clinical meetings with neonatologists. Interventions by parents, healthcare providers and ethics committees during decision-making were not documented in any of the charts. Only eight written orders regarding therapeutic limitations and the adoption of palliative care were documented; seven (87.5%) were from the 2002-2005 cohort. Parental presence during death was more frequent in the latter four years (2002-2005 cohort), but only 21.5% of the parents wanted to be present at that moment. CONCLUSION: Despite an increase in the withholding and withdrawing of therapeutic activities and improvements in pain management and family support, many neonates still receive curative and aggressive practices at the end of life.

End of life in the neonatal intensive care unit

PURPOSE: Death at the beginning of life is tragic but not uncommon in neonatal intensive care units. In Portugal, few studies have examined the circumstances surrounding the final moments of neonates. We evaluated the care given to neonates and their families in terminal situations and the changes that had occurred one decade later. DESIGN AND METHODS: We analyzed 256 charts in a retrospective chart review of neonatal deaths between two periods (1992-1995 and 2002-2005) in a level III neonatal intensive care unit. RESULTS: Our results show differences in the care of dying infants between the two periods. The analysis of the 2002-2005 cohort four years revealed more withholding and withdrawing of therapeutic activities and more effective pain and distress relief; however, on the final day of life, 95.7 percent of the infants received invasive ventilatory support, 76.3 percent received antibiotics, 58.1 percent received inotropics, and 25.8 percent received no opioid or sedative administration. The 2002-2005 cohort had more spiritual advisor solicitation, a higher number of relatives with permission to freely visit and more clinical meetings with neonatologists. Interventions by parents, healthcare providers and ethics committees during decision-making were not documented in any of the charts. Only eight written orders regarding therapeutic limitations and the adoption of palliative care were documented; seven (87.5 percent) were from the 2002-2005 cohort. Parental presence during death was more frequent in the latter four years (2002-2005 cohort), but only 21.5 percent of the parents wanted to be present at that moment. CONCLUSION: Despite an increase in the withholding and withdrawing of therapeutic activities and improvements in pain management and family support, many neonates still receive curative and aggressive practices at the end of life.

Visita em Unidades de Terapia Intensiva: concepção dos familiares quanto à humanização do atendimento / Visit on Intensive Care Units: The Families´ Understanding on Care Humanization

A Unidade de Terapia Intensiva (UTI) é considerada um ambiente hostil e invasivo. Portanto, o envolvimentoda família com o paciente é importante para o processo de humanização, pois a presença da família junto aoente querido contribui com o tratamento e para a sua recuperação. Objetivo: Verificar a concepção dosfamiliares quanto a visita em UTI. Método: Estudo descritivo exploratório realizado na UTI da Emergência deum hospital do noroeste paulista, realizado por meio de entrevista, utilizando-se um formulário com questõesfechadas e abertas relacionadas às orientações recebidas sobre a unidade, aprovação do horário de visitas,atendimento da equipe multiprofissional, reconhecimento do enfermeiro na equipe, sentimentos e importânciados familiares na recuperação do cliente. Foram entrevistados 41 familiares, nos meses de julho a outubro de2005, durante o horário de visita. Os dados foram analisados em freqüência e porcentagens e apresentadosem tabelas. Resultados: A família sente necessidade de atenção e da companhia de um profissional para obterinformações sobre como seu familiar passou o dia, as intercorrências e outros acontecimentos que permeiama rotina dessas pessoas e da unidade, e desejam mais um horário para visitas. Considerações: Uma assistênciahumanizada necessita de um enfermeiro mais atuante, dando orientações completas e freqüentes aos familiares.Sobretudo, é o profissional com maior capacidade e conhecimento para atuar junto à família, considerandoseu contato ininterrupto com o paciente e, assim, pode amenizar a ansiedade vivida, enfatizando a importânciada presença da família na recuperação do seu ente querido.

Introduction: The hospital Intensive Care Unit (ICU) is considered a hostile and invasive environment. Thus,the patient family involvement is important for the humanization process, once the presence of the patients’family improve the care and recovery of their loved ones. Objectives: To identify the ICU patients’ familyneeds and to observe primary health care to the families of these patients. Method: An exploratory descriptivestudy was performed at an emergency intensive care unit of a hospital at a Northwestern State of São Paulo.Individual structured interviews were used with a questionnaire with core open-ended questions to allow therespondents to explain their own viewpoints and experiences as completely as possible. Family data onwhether a family received information about the unit; approval of visit hours; whether they were receivingsupport from the multidisciplinary team; whether they were told of the specific role of each ICU caregiver;and the feelings and the importance of the family on the patient’s recovery. From July to October 2005, a totalof 41 family members completed the questionnaire during the visit hours. Results: The family needs attentionand help from a health professional to be provided with the appropriate, clear, and compassionate informationon the diagnosis, prognosis, or treatment of the patient, and more visit hours allowed per day. Conclusion: Ahumanized assistance requires a more active nurse, who provides the family members usual and completeinformation. Taking into account the interaction between health professionals and family members; thenurses are the most qualified caregiver to provide all the information to the family members. Moreover, theyare usually in touch with the patient, and can also diminish the family anxiety; emphasizing the importance ofthe family´s presence on the recovery of their loved ones.