722 resultados para partnership practice, intellectual disability, palliative care,questionnaires, interview
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Objective. To identify the perception of nurses with regard to the process of providing care to patients in the context of hospice care. Method. Qualitative study using the methodological framework Collective Subject Discourse. A total of 18 nursing professionals of the adult intensive care unit of a public hospital in São Paulo, Brazil were interviewed between June and August 2012. Results. The process of providing care to terminal patients is permeated by negative, conflictive and mixed feelings. As regards communication, while the participants acknowledge its importance as a therapeutic resource, they also admit a lack of professional qualification. Conclusion. The interviewees have difficulties to deal with care provided to terminal patients. The qualification of these professionals needs to be improved, starting in the undergraduate program.
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Pós-graduação em Educação - FFC
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Pós-graduação em Saúde Coletiva - FMB
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The authors describe on a Brazilian girl with coronal synostosis, facial asymmetry, ptosis, brachydactyly, significant learning difficulties, recurrent scalp infections with marked hair loss, and elevated serum immunoglobulin E. Standard lymphocyte karyotype showed a small additional segment in 7p21[46,XX,add(7)(p21)]. Deletion of the TWIST1 gene, detected by Multiplex Ligation Probe-dependent Amplification (MPLA) and array-CGH, was consistent with phenotype of SaethreChotzen syndrome. Array CGH also showed deletion of four other genes at 7p21.1 (SNX13, PRPS1L1, HD9C9, and FERD3L) and the deletion of six genes (CACNA2D2, C3orf18, HEMK1, CISH, MAPKAPK3, and DOCK3) at 3p21.31. Our case reinforces FERD3L as candidate gene for intellectual disability and suggested that genes located in 3p21.3 can be related to hyper IgE phenotype. (C) 2012 Wiley Periodicals, Inc.
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Aim: to analyze nursing care practices at a Specialized Outpatient Care Center from the perspective of an integrative health care activity. Method: Interviews with 24 nursing professionals were undertaken. For data analysis, Thematic Content Analysis as proposed by Bardin was applied, resulting in the following themes: the team size and its commitment to health care; professional practices and activity of the nursing team. Results: The size of the nursing team was considered insufficient, which compromises the quality of care and results in work overload and dissatisfaction of the nursing professionals. On the other hand, they were satisfied with the tasks performed day-to-day and related integrality to individual care, considered it essential and usually practiced it daily. Conclusion: It is considered that the nursing team has the potential and commitment to develop their care practice combined with the integrative perspective, and therefore providing quality health care to the population.
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Perinatal care of pregnant women at high risk for preterm delivery and of preterm infants born at the limit of viability (22-26 completed weeks of gestation) requires a multidisciplinary approach by an experienced perinatal team. Limited precision in the determination of both gestational age and foetal weight, as well as biological variability may significantly affect the course of action chosen in individual cases. The decisions that must be taken with the pregnant women and on behalf of the preterm infant in this context are complex and have far-reaching consequences. When counselling pregnant women and their partners, neonatologists and obstetricians should provide them with comprehensive information in a sensitive and supportive way to build a basis of trust. The decisions are developed in a continuing dialogue between all parties involved (physicians, midwives, nursing staff and parents) with the principal aim to find solutions that are in the infant's and pregnant woman's best interest. Knowledge of current gestational age-specific mortality and morbidity rates and how they are modified by prenatally known prognostic factors (estimated foetal weight, sex, exposure or nonexposure to antenatal corticosteroids, single or multiple births) as well as the application of accepted ethical principles form the basis for responsible decision-making. Communication between all parties involved plays a central role. The members of the interdisciplinary working group suggest that the care of preterm infants with a gestational age between 22 0/7 and 23 6/7 weeks should generally be limited to palliative care. Obstetric interventions for foetal indications such as Caesarean section delivery are usually not indicated. In selected cases, for example, after 23 weeks of pregnancy have been completed and several of the above mentioned prenatally known prognostic factors are favourable or well informed parents insist on the initiation of life-sustaining therapies, active obstetric interventions for foetal indications and provisional intensive care of the neonate may be reasonable. In preterm infants with a gestational age between 24 0/7 and 24 6/7 weeks, it can be difficult to determine whether the burden of obstetric interventions and neonatal intensive care is justified given the limited chances of success of such a therapy. In such cases, the individual constellation of prenatally known factors which impact on prognosis can be helpful in the decision making process with the parents. In preterm infants with a gestational age between 25 0/7 and 25 6/7 weeks, foetal surveillance, obstetric interventions for foetal indications and neonatal intensive care measures are generally indicated. However, if several prenatally known prognostic factors are unfavourable and the parents agree, primary non-intervention and neonatal palliative care can be considered. All pregnant women with threatening preterm delivery or premature rupture of membranes at the limit of viability must be transferred to a perinatal centre with a level III neonatal intensive care unit no later than 23 0/7 weeks of gestation, unless emergency delivery is indicated. An experienced neonatology team should be involved in all deliveries that take place after 23 0/7 weeks of gestation to help to decide together with the parents if the initiation of intensive care measures appears to be appropriate or if preference should be given to palliative care (i.e., primary non-intervention). In doubtful situations, it can be reasonable to initiate intensive care and to admit the preterm infant to a neonatal intensive care unit (i.e., provisional intensive care). The infant's clinical evolution and additional discussions with the parents will help to clarify whether the life-sustaining therapies should be continued or withdrawn. Life support is continued as long as there is reasonable hope for survival and the infant's burden of intensive care is acceptable. If, on the other hand, the health car...
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BACKGROUND: Complementary and alternative medicine (CAM) and most of all anthroposophic medicine (AM) are important features of cancer treatment in Switzerland. While the number of epidemiological investigations into the use of such therapies is increasing, there is a distinct lack of reports regarding the combination of conventional and CAM methods. PATIENTS AND METHODS: 144 in-patients with advanced epithelial cancers were enrolled in a prospective quality-of-life (QoL) study at the Lukas Klinik (LK), Arlesheim, Switzerland. Tumor-related treatment was assessed 4 months prior to admission, during hospitalization and 4 months after baseline. OBJECTIVE: We aimed at giving a detailed account of conventional, AM and CAM treatment patterns in palliative care, before, during and after hospitalization, with emphasis on compliance with AM after discharge. RESULTS: Certain conventional treatments featured less during hospitalization than before but were resumed after discharge (chemotherapy, radiotherapy, sleeping pills, psychoactive drugs). Hormone therapy, corticosteroids, analgesics WHO III and antidepressants remained constant. AM treatment consisted of Iscador? (mistletoe), other plant- or mineral-derived medication, baths, massage, eurythmy, art therapy, counseling and lactovegetarian diet. Compliance after discharge was highest with Iscador (90%) and lowest with art therapy (14%). Many patients remained in the care of AM physicians. Other CAM and psychological methods were initially used by 39.9% of patients. After 4 months, the use had decreased with few exceptions. CONCLUSION: During holistic palliative treatment in an anthroposophic hospital, certain conventional treatments featured less whereas others remained constant. After discharge, chemotherapy returned to previous levels, AM compliance remained high, the use of other CAM therapies low.
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The objective of this study is to determine if quality of care, symptoms of depression, disease characteristics and quality of life of patients with amyotrophic lateral sclerosis (ALS) are related to requesting euthanasia or physician-assisted suicide (EAS) and dying due to EAS. Therefore, 102 ALS patients filled out structured questionnaires every 3 months until death and the results were correlated with EAS. Thirty-one percent of the patients requested EAS, 69 % of whom eventually died as a result of EAS (22 % of all patients). Ten percent died during continuous deep sedation; only one of them had explicitly requested death to be hastened. Of the patients who requested EAS, 86 % considered the health care to be good or excellent, 16 % felt depressed, 45 % experienced loss of dignity and 42 % feared choking. These percentages do not differ from the number of patients who did not explicitly request EAS. The frequency of consultations of professional caregivers and availability of appliances was similar in both groups. Our findings do not support continuous deep sedation being used as a substitute for EAS. In this prospective study, no evidence was found for a relation between EAS and the quality and quantity of care received, quality of life and symptoms of depression in patients with ALS. Our study does not support the notion that unmet palliative care needs are related to EAS.
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BACKGROUND Repeated hospitalizations are frequent toward the end of life, where each admission should be an opportunity to initiate advance-care planning to high-risk patients. OBJECTIVE To identify the risk factors for having a 30-day potentially avoidable readmission due to end-of-life care issues among all medical patients. DESIGN Nested case-control study. SETTING/PATIENTS All 10,275 consecutive discharges from any medical service of an academic tertiary medical center in Boston, Massachusetts between July 1, 2009 and June 30, 2010. MEASUREMENTS A random sample of all the potentially avoidable 30-day readmissions was independently reviewed by 9 trained physicians to identify the ones due to end-of-life issues. RESULTS Among 534, 30-day potentially avoidable readmission cases reviewed, 80 (15%) were due to an end-of-life care issue. In multivariable analysis, the following risk factors were significantly associated with a 30-day potentially avoidable readmission due to end-of-life care issues: number of admissions in the previous 12 months (odds ratio [OR]: 1.10 per admission, 95% confidence interval [CI]: 1.02-1.20), neoplasm (OR: 5.60, 95% CI: 2.85-10.98), opiate medications at discharge (OR: 2.29, 95% CI: 1.29-4.07), Elixhauser comorbidity index (OR: 1.16 per 5-point increase, 95% CI: 1.10-1.22). The discrimination of the model (C statistic) was 0.85. CONCLUSIONS In a medical population, we identified 4 main risk factors that were significantly associated with 30-day potentially avoidable readmission due to end-of-life care issues, producing a model with very good to excellent discrimination. Patients with these risk factors might benefit from palliative care consultation prior to discharge in order to improve end-of-life care and possibly reduce unnecessary rehospitalizations.
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Over the last 2 decades, survival rates in critically ill cancer patients have improved. Despite the increase in survival, the intensive care unit (ICU) continues to be a location where end-of-life care takes place. More than 20% of deaths in the United States occur after admission to an ICU, and as baby boomers reach the seventh and eighth decades of their lives, the volume of patients in the ICU is predicted to rise. The aim of this study was to evaluate intensive care unit utilization among patients with cancer who were at the end of life. End of life was defined using decedent and high-risk cohort study designs. The decedent study evaluated characteristics and ICU utilization during the terminal hospital stay among patients who died at The University of Texas MD Anderson Cancer Center during 2003-2007. The high-risk cohort study evaluated characteristics and ICU utilization during the index hospital stay among patients admitted to MD Anderson during 2003-2007 with a high risk of in-hospital mortality. Factors associated with higher ICU utilization in the decedent study included non-local residence, hematologic and non-metastatic solid tumor malignancies, malignancy diagnosed within 2 months, and elective admission to surgical or pediatric services. Having a palliative care consultation on admission was associated with dying in the hospital without ICU services. In the cohort of patients with high risk of in-hospital mortality, patients who went to the ICU were more likely to be younger, male, with newly diagnosed non-metastatic solid tumor or hematologic malignancy, and admitted from the emergency center to one of the surgical services. A palliative care consultation on admission was associated with a decreased likelihood of having an ICU stay. There were no differences in ethnicity, marital status, comorbidities, or insurance status between patients who did and did not utilize ICU services. Inpatient mortality probability models developed for the general population are inadequate in predicting in-hospital mortality for patients with cancer. The following characteristics that differed between the decedent study and high-risk cohort study can be considered in future research to predict risk of in-hospital mortality for patients with cancer: ethnicity, type and stage of malignancy, time since diagnosis, and having advance directives. Identifying those at risk can precipitate discussions in advance to ensure care remains appropriate and in accordance with the wishes of the patient and family.^
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Acknowledgements We would like to thank all of the patients, relatives and control individuals who participated in the study. We are indebted to the late Prof. Walter Muir, Chair of Developmental Psychiatry and Honorary Consultant in Learning Disability Psychiatry, University of Edinburgh, who initiated these studies and whose work was dedicated to the welfare of the patients who generously participated. We are also grateful to Mrs. Pat Malloy for her assistance with DNA collection and MAQ assays screening of the Scottish samples. The Scottish sample collection was supported by a grant from the Chief Scientist Office (CSO), part of the Scottish Government Health and Social Care Directorates. This research was funded by grants from the CSO to B.S.P. (grant CZB/4/610), The Academy of Medical Sciences/Wellcome Trust to M.J. (grant R41455) and The RS Macdonald Charitable Trust (grant D21419 together with J.H.), the Swedish Research Council (grants 2003-5158 and 2006-4472), the Medical Faculty, Umeå University, and the County Councils of Västerbotten and Norrbotten, Sweden, as well as by grants from the Fund for Scientific Research Flanders (FWO-F), the Industrial Research Fund (IWT) and the Special Research Fund of the University of Antwerp, Belgium. M.J. is funded by a Wellcome Trust Clinical Research Fellowship for MB PhD graduates (R42811). We acknowledge the contribution of the personnel of the VIB Genetic Service Facility (http://www.vibgeneticservicefacility.be/) for the genetic analysis of the Swedish samples. Research nurses Gunnel Johansson, Lotta Kronberg, Tage Johansson and Lisbeth Bertilsson are thankfully acknowledged for their help and expertise. The Betula Study was funded by the Swedish Research Council (grants 345-2003-3883 and 315-2004-6977). We also acknowledge the contribution by the staff in the Betula project
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É necessário compreender que o indivíduo, no processo saúde-doença, precisa receber atenção completa, que envolva várias disciplinas atuando de forma conjunta, numa visão que envolve integralidade de ações (Saupe et al., 2007; Salvador et al., 2011). Uma das principais características dos serviços de saúde hoje em dia no país é o atendimento feito por equipes multiprofissionais, cujo entrosamento, entendimento e troca de saberes entre seus membros levam à interdisciplinaridade (Salvador et al., 2011), tema central deste trabalho de pesquisa. Atendimento interdisciplinar envolve trabalho recíproco, criando relações sociais horizontais, contrariamente ao que ocorre no modelo de assistência tradicional, hegemônico. Exige que o saber do outro seja ouvido e pensado, inclusive dos indivíduos e das comunidades assistidos (Leite; Veloso, 2008). Este estudo, do tipo quali-quantitativo, tem por objetivo analisar as percepções que trabalhadores e usuários de três unidades de saúde, com estratégias distintas de atendimento, apresentam sobre interdisciplinaridade. Busca-se destacar dificuldades e possíveis meios facilitadores para sua prática diária na perspectiva de profissionais de saúde e usuários dessas três unidades de saúde. Foram aplicados questionários com perguntas fechadas semiestruturadas e abertas, cujos resultados foram submetidos à análise quantitativa, pela técnica descritiva de análise de frequência, e análise qualitativa pela técnica hermenêutica dialética, conforme preconizada por Minayo (2004). À luz dessa modalidade qualitativa de pesquisa aplicada aos profissionais surgiram três categorias: Meios para aumento da interdisciplinaridade; Fatores que afetam a interdisciplinaridade, subdivididos em Incentivadores, Desmotivadores e Ambíguos; e Resultados da interdisciplinaridade. Em relação aos usuários, as categorias emergentes foram: Desinteresse; Visão assistencial individualista e Vantagens da interdisciplinaridade. Os resultados encontrados foram: todas as categorias profissionais sentiram falta de outros profissionais em grupos educativos. A ausência mais sentida foi assistente social (18,75%). A estratégia interdisciplinar mais lembrada foi \"reuniões\" (38,6%). Falta noção de que é necessário trocar informações de forma efetiva, compreensível e satisfatória para todos. Mostrou-se importante aproveitar esses momentos para discutir protocolos e rotinas. Instrumento relevante para aumentar as trocas entre os profissionais foi a capacitação (13,6%) que melhora o relacionamento em equipe ao diminuir inseguranças. Trocas de informações em equipe multidisciplinar podem transformála em interdisciplinar. Pertencimento foi fato importante para a interdisciplinaridade, assim como dialogar, tolerar, respeitar, ouvir, ser flexível e enxergar o que está além de si, com interação social, horizontal. Número reduzido de profissionais, tomar conhecimento dos resultados das decisões em equipe e corresponsabilidade também foram fatores de destaque. Mais de 70% dos usuários relatou não participar de grupos educativos, evidenciando o curativismo. Os usuários valorizaram o atendimento por mais de um profissional. Acolhimento prescinde da ação interdisciplinar. Nenhum modo de atendimento foi sugerido pelos usuários. A interdisciplinaridade favorece a relação entre a equipe e o usuário, diminui espera e aumenta resolução. Na US Vila Helena, a interdisciplinaridade prescindiu de reuniões de equipe para acontecer.