Búsqueda sistemática de guías de práctica clínica en cuidados paliativos pediátricos

Actualmente se estima que más de 160.000 niños en todo el mundo son diagnosticados de cáncer cada año y esta cifra podría ser considerablemente superior debido que los datos en su mayoría son imprecisos (1), hay un gran número de niños que junto con sus familias deben hacer frente a las implicaciones del diagnóstico de cáncer o enfermedad terminal, del tratamiento y el pronóstico. En Colombia se viene practicando en los servicios de pediatría, sin embargo no se realiza bajo un protocolo establecido El objetivo de este trabajo fue realizar una búsqueda sistemática de Guías de Práctica Clínica en Cuidados Paliativos Pediátricos basadas en la evidencia en el mundo y evaluarlas mediante preguntas clínicas preestablecidas, y bajo la metodología GLIA indicada por el ministerio de protección social, teniendo en cuenta la realidad colombiana y los principios de accesibilidad, calidad y eficiencia consagrados en el Sistema General de Seguridad Social de Salud de Colombia, con el fin de identificar la mejor Guía de Práctica Clínica (GPC) para la población de la Fundación Cardioinfantil de Bogotá – Colombia. Como resultado de la búsqueda se obtuvieron 32 GPC en Cuidados Paliativos de los cuales 8 guías se relacionaban con la población objeto y solo 5 de las guías respondían a las preguntas clínicas. El informe se elaboró según la metodología PRISMA con el fin constituir una base de datos para posteriores estudios, realización de guías o la adaptación de guías basadas en la evidencia.

O processo de (re) construção da prática pedagógica de professores de língua inglesa em formação inicial

Fundação de Amparo à Pesquisa do Estado de São Paulo (FAPESP)

Association between education in EOL care and variability in EOL practice: a survey of ICU physicians

This study investigated the association between physician education in EOL and variability in EOL practice, as well as the differences between beliefs and practices regarding EOL in the ICU. Physicians from 11 ICUs at a university hospital completed a survey presenting a patient in a vegetative state with no family or advance directives. Questions addressed approaches to EOL care, as well physicians' personal, professional and EOL educational characteristics. The response rate was 89%, with 105 questionnaires analyzed. Mean age was 38 +/- A 8 years, with a mean of 14 +/- A 7 years since graduation. Physicians who did not apply do-not-resuscitate (DNR) orders were less likely to have attended EOL classes than those who applied written DNR orders [0/7 vs. 31/47, OR = 0.549 (0.356-0.848), P = 0.001]. Physicians who involved nurses in the decision-making process were more likely to be ICU specialists [17/22 vs. 46/83, OR = 4.1959 (1.271-13.845), P = 0.013] than physicians who made such decisions among themselves or referred to ethical or judicial committees. Physicians who would apply "full code" had less often read about EOL [3/22 vs. 11/20, OR = 0.0939 (0.012-0.710), P = 0.012] and had less interest in discussing EOL [17/22 vs. 20/20, OR = 0.210 (0.122-0.361), P < 0.001], than physicians who would withdraw life-sustaining therapies. Forty-four percent of respondents would not do what they believed was best for their patient, with 98% of them believing a less aggressive attitude preferable. Legal concerns were the leading cause for this dichotomy. Physician education about EOL is associated with variability in EOL decisions in the ICU. Moreover, actual practice may differ from what physicians believe is best for the patient.

Educação física e inclusão educacional : entender para atender = Physical education and educational inclusion : understanding to attend

Universidade Estadual de Campinas . Faculdade de Educação Física

The use of palliative sedation: A comparison of attitudes of French-speaking physicians from Quebec and Switzerland.

OBJECTIVE: Previous literature has suggested that laws and regulations may impact the use of palliative sedation. Our present study compares the attitudes of French-speaking physicians practicing in the Quebec and Swiss environments, where different laws are in place regarding physician-assisted suicide. METHOD: Data were drawn from two prior studies, one by Blondeau and colleagues and another by Beauverd and coworkers, employing the same two-by-two experimental design with length of prognosis and type of suffering as independent variables. Both the effect of these variables and the effect of their interaction on Swiss and Quebec physicians' attitudes toward sedation were compared. The written comments of respondents were submitted to a qualitative content analysis and summarized in a comparative perspective. RESULTS: The analysis of variance showed that only the type of suffering had an effect on physicians' attitudes toward sedation. The results of the Wilcoxon test indicated that the attitudes of physicians from Quebec and Switzerland tended to be different for two vignettes: long-term prognosis with existential suffering (p = 0.0577) and short-term prognosis with physical suffering (p = 0.0914). In both cases, the Swiss physicians were less prone to palliative sedation. SIGNIFICANCE OF RESULTS: The attitudes of physicians from Quebec and Switzerland toward palliative sedation, particularly regarding prognosis and type of suffering, seem similar. However, the results suggest that physicians from Quebec could be slightly more open to palliative sedation, even though most were not in favor of this practice as an answer to end-of-life existential suffering.

Effectiveness of a pediatric palliative home care team as experienced by parents and health care professionals.

OBJECTIVES: Little data are available on palliative home care for children. The objective of this study was to evaluate the effectiveness of a specialized pediatric palliative home care team (PPHCT) as experienced by parents and health care professionals (HCPs). METHODS: Parents and HCPs involved in the care of terminally ill children who died and whom the PPHCT was in charge of were surveyed with questionnaires focusing on satisfaction with the PPHCT, satisfaction with the course of the dying phase, and the development of anxiety, depression, and prolonged grief disorder. RESULTS: Forty-three parent dyads participated (return rate, 88%). Satisfaction with the PPHCT scored a median of 10 (numeric rating scale, 0-10). The child's death was predominantly experienced as very peaceful (median, 9); 71% died at home. According to parents, involvement of the PPHCT led to highly significant (p<0.001) improvements in the children's symptoms and quality of life, as well as in aspects of communication and administrative barrier reduction. Anxiety was detected in 25% of parents, depression in 19%, and prolonged grief disorder in 13%. HCPs (return rate, 83%) evaluated all investigated care domains (particularly cooperation/communication/family support) as being significantly improved (p<0.001). Thirty-five percent of HCPs felt uncertain concerning pediatric palliative care; 79% would welcome specific training opportunities. CONCLUSIONS: Involvement of a PPHCT is experienced as a substantial improvement of care by parents and HCPs. Coordination of palliative care during the last phase of life appears to be an important quality factor for the home care of dying children and their families.

Palliative and supportive care: at the frontier of medical omnipotence.

Cancer patients have physical, social, spiritual an emotional needs. They may suffer from severe physical symptoms, from social isolation and a sense of spiritual abandonment, and emotions such as sadness and anxiety, or feeling of deception, helplessness, anger and guilt. In some of them, the disease is rapidly progressive and they ultimately die. Their demanding care evokes intense feelings in health care providers, the more so since these incurable patients represent a challenge, which can be characterized as one of 'medical omnipotence'. It may be assumed that the way health care providers cope with these circumstances profoundly influences the way these patients are cared for. Attitudes regarding the emerging heterogeneous movement of palliative and supportive care and its different models of implementation can be viewed form this vantage point. Here we look at these interrelations and discuss the potential pitfalls if they are ignored and remain unexamined.

Listening to parents: The role of symptom perception in pediatric palliative home care.

OBJECTIVE: This study analyzes symptom perception by parents and healthcare professionals and the quality of symptom management in a pediatric palliative home care setting and identifies which factors contribute to a high quality of palliative and end-of-life care for children. METHODS: In this retrospective, cross-sectional study, parents were surveyed at the earliest three months after their child's death. All children were cared for by a specialized home pediatric palliative care team that provides a 24/7 medical on-call service. Questionnaires assessed symptom prevalence and intensity during the child's last month of life as perceived by parents, symptom perception, and treatment by medical staff. The responses were correlated with essential palliative care outcome measures (e.g., satisfaction with the care provided, quality-of-life of affected children and parents, and peacefulness of the dying phase). RESULTS: Thirty-eight parent dyads participated (return rate 84%; 35% oncological disorders). According to parental report, dyspnea (61%) and pain (58%) were the dominant symptoms with an overall high symptom load (83%). Pain, agitation, and seizures could be treated more successfully than other symptoms. Successful symptom perception was achieved in most cases and predicted the quality of symptom treatment (R 2, 0.612). Concordant assessment of symptom severity between parents and healthcare professionals (HCPs) improved the satisfaction with the care provided (p = 0.037) as well as the parental quality-of-life (p = 0.041). Even in cases with unsuccessful symptom control, parents were very satisfied with the SHPPC team's care (median 10; numeric rating scale 0-10) and rated the child's death as highly peaceful (median 9). Significance of the results: The quality and the concordance of symptom perception between parents and HCPs essentially influence parental quality-of-life as well as parental satisfaction and constitute a predictive factor for the quality of symptom treatment and palliative care.

Mise à l’essai et évaluation qualitative d’une intervention inspirée de la pédagogie narrative destinée aux infirmières soignant des personnes âgées en état confusionnel aigu

Les personnes âgées occupent une proportion importante des lits dans les centres hospitaliers de soins de courte durée québécois et leur présence est en augmentation. Parmi ces personnes, plusieurs présentent un état confusionnel aigu (ÉCA), voire un délirium, au cours de leur hospitalisation. Les soins infirmiers qu’elles requièrent sont complexes et les études portant sur la formation continue des infirmières tiennent peu compte de cette réalité. Les approches utilisées dans les études sont surtout centrées sur l’acquisition de connaissances et d’habiletés techniques et négligent les aspects créatifs, relationnels, critiques, réflexifs et éthiques essentiels à une prestation de soins infirmiers de qualité. On y retrouve également peu d’informations sur la conception de l’intervention éducative et sur son évaluation. C’est dans cette perspective que le but de l’étude était de mettre à l’essai et d’évaluer qualitativement le processus et les résultats d’une intervention éducative auprès d’infirmières soignant des personnes âgées hospitalisées en ÉCA. Plus particulièrement, ce sont les conditions facilitant et contraignant l’intervention, les aspects les plus utiles pour la pratique, les différents savoirs exprimés et les résultats de soins perçus par les participantes qui étaient recherchés. C’est en s’inspirant de la pédagogie narrative de Diekelmann (2001) et des savoirs infirmiers de Chinn et Kramer (2008) que l’intervention a été conçue et évaluée. La description d’expériences de soins vécues par les infirmières et la création d’un environnement d’apprentissage favorisant l’interprétation, en groupe, de ces expériences à l’aide d’informations théoriques et empiriques caractérisent la pédagogie narrative à la base de cette intervention. Pour atteindre le but, une étude de cas a été retenue. La stratégie d’échantillonnage par choix raisonné a permis de sélectionner des participantes travaillant sur les trois quarts de travail, ayant différents niveaux de formation et une expérience comme infirmière variant de huit mois à 36 ans, dont l’âge variait de 23 à 64 ans. L’échantillon, composé de 15 infirmières soignant fréquemment des personnes en ÉCA et travaillant sur des unités de soins chirurgicaux cardiologiques et orthopédiques, était réparti dans trois groupes égaux de cinq participantes. L’intervention éducative comprenait quatre journées de formation offertes à intervalle de trois semaines pour une durée totale de 12 semaines. Au cours de chacune de ces journées, les participantes devaient effectuer un travail écrit réflexif concernant une situation de soins vécue avec une personne en ÉCA et, par la suite, partager, interpréter et s'interroger sur ces situations en faisant des liens avec des informations théoriques et empiriques sur l’ÉCA dans le cadre d’un atelier de groupe. Une triangulation de méthodes de collecte de données, incluant des notes de terrain de l’investigatrice, les travaux réflexifs des participantes, des questionnaires complétés par les participantes après chaque journée de formation et une entrevue individuelle avec chaque participante réalisée par une intervieweuse externe à la fin de l’intervention, a permis de décrire la mise à l’essai de l’intervention et d’évaluer qualitativement son processus et ses résultats. Une analyse de contenu des données qualitatives intra et inter participante a été effectuée. La mise à l’essai de l’intervention a mis en évidence l’importance de tenir compte des besoins variés des participantes et d’ajuster l’intervention éducative d’un groupe à l’autre, notamment eu égard aux contenus théoriques et empiriques sur l’ECA. L’évaluation du processus souligne que l’intervention a été facilitée par les attitudes et la diversité des expériences des participantes, ainsi que par l’utilisation de situations de soins réelles permettant d’intégrer la théorie dans la pratique. L’accès à de nouveaux outils d’évaluation des personnes en ÉCA a été perçu particulièrement utile par les participantes. Quant à l’évaluation des résultats, elle a permis de rendre visibles de nombreux savoirs empiriques, éthiques et esthétiques et certains savoirs personnels et émancipatoires exprimés par les participantes. Les participantes ont, entre autres, réalisé des évaluations plus approfondies des personnes en ÉCA, ont réduit ou évité les mesures de contrôle physiques des personnes atteintes et ont impliqué davantage les familles dans les soins. L’évaluation a aussi permis de décrire certains résultats perçus par les participantes sur le bien-être physique et psychologique des personnes soignées et sur les familles. Les personnes en ECA étaient, entre autres, rassurées, plus calmes et soulagées et les familles moins inquiètes et davantage impliquées dans les soins. Les résultats de l’étude mettent en évidence l’applicabilité d’une intervention éducative narrative basée sur un cadre de référence en sciences infirmières et son utilité pour la formation continue dans les milieux de soins. L’étude ouvre la porte à des possibilités de transfert de l’intervention à d’autres populations d’infirmières soignant des clientèles ayant des besoins complexes, notamment en gériatrie, en oncologie ou en soins palliatifs. Des études visant à évaluer l’intervention auprès d’un échantillon plus important et à explorer ses effets sur les personnes soignées et leurs familles sont proposées.

Calidad de vida en personas con hemofilia: una revisión de la literatura

Introducción: La hemofilia es una enfermedad poco frecuente; no obstante, los avances en los tratamientos de pacientes hemofílicos en las últimas décadas han generado cambios en su calidad de vida. Esto ha motivado el desarrollo de múltiples investigaciones al respecto. Objetivo: Revisar la literatura sobre la calidad de vida en el paciente hemofílico, producida en el periodo 2008-2012. Método: Se consultaron algunas bases de datos científicas utilizando como palabras clave “hemofilia” y “calidad de vida”. Se recopiló la información encontrada y se organizó según los objetivos propuestos en “factores negativos” y “factores protectores” de la calidad de vida a nivel fisiológico, psicosocial y cultural; “instrumentos para la evaluación de la calidad de vida” a nivel específico y general; y antecedentes empíricos de los últimos cinco años en los que se evaluara la calidad de vida o se realizara alguna intervención en la misma. Resultados: En general la información disponible sobre el comportamiento epidemiológico de la hemofilia es limitada. El interés por factores protectores y negativos es principalmente de tipo fisiológico, aunque se encontraron factores de tipo psicosocial y cultural, lo que indica la importancia de profundizar en esta temática. Existen pocos instrumentos especializados para la evaluación de la calidad de vida en hemofílicos. La evidencia empírica se centra en la evaluación. Conclusión: El estudio de la calidad de vida en pacientes hemofílicos amerita ser abordado de manera interdisciplinaria.

La muerte en la psicoterapia fenomenológico-existencial

El siguiente trabajo pretende, mediante la revisión de diferentes fuentes bibliográficas, mostrar las distintas categorías en las que la muerte se trabaja dentro de la psicoterapia fenomenológico existencial. Es así como se hace un recorrido por los antecedentes filosóficos de este enfoque psicoterapéutico, las diferentes escuelas que dentro de él se desarrollan y sus planteamientos frente a la muerte, las maneras de morir, la muerte y el ciclo vital, y los avances actuales como la Teoría del Manejo del Terror (TMT) . Todos estos elementos se revisan para después ser relacionados y así proponer una serie de acciones prácticas a llevar a cabo dentro del encuentro psicoterapéutico con miras a un trabajo adecuado y productivo con la muerte desde una perspectiva existencial.

Organização e funcionamento do atendimento educacional especializado na educação infantil: estudo de caso

Conselho Nacional de Desenvolvimento Científico e Tecnológico (CNPq)

Determinants in the development of advanced nursing practice: a case study of primary-care settings in Hong Kong

Different factors have been shown to influence the development of models of advanced nursing practice (ANP) in primary-care settings. Although ANP is being developed in hospitals in Hong Kong, China, it remains undeveloped in primary care and little is known about the factors determining the development of such a model. The aims of the present study were to investigate the contribution of different models of nursing practice to the care provided in primary-care settings in Hong Kong, and to examine the determinants influencing the development of a model of ANP in such settings. A multiple case study design was selected using both qualitative and quantitative methods of data collection. Sampling methods reflected the population groups and stage of the case study. Sampling included a total population of 41 nurses from whom a secondary volunteer sample was drawn for face-to-face interviews. In each case study, a convenience sample of 70 patients were recruited, from whom 10 were selected purposively for a semi-structured telephone interview. An opportunistic sample of healthcare professionals was also selected. The within-case and cross-case analysis demonstrated four major determinants influencing the development of ANP: (1) current models of nursing practice; (2) the use of skills mix; (3) the perceived contribution of ANP to patient care; and (4) patients' expectations of care. The level of autonomy of individual nurses was considered particularly important. These determinants were used to develop a model of ANP for a primary-care setting. In conclusion, although the findings highlight the complexity determining the development and implementation of ANP in primary care, the proposed model suggests that definitions of advanced practice are appropriate to a range of practice models and cultural settings. However, the findings highlight the importance of assessing the effectiveness of such models in terms of cost and long-term patient outcomes.

Bridging the Gap: Developing a Palliative Approach to Care for Young Adults with Life Limiting Conditions

Bridging the Gap: Developing a Palliative Approach to Care for Young Adults with Life Limiting Conditions

More young adults (YAs) with life limiting conditions (LLC) are surviving into adulthood as earlier diagnosis and improved medical management in pediatric care lead to higher rates of survival for cancer, congenital heart and neuromuscular conditions. When these YAs leave pediatric care, they leave behind comprehensive and coordinated health, social and education services for uncoordinated adult systems, with limited access to palliative services they received in pediatric care.

YAs with LLCs will benefit from a public health palliative approach to care. This approach better matches their chronic disease trajectories of a series of declining plateaus over a period of months to years, punctuated by unpredictable periodic crises. Public health palliative care is a blended provision of health care and community services based on evidence that health care is most effective and least expensive when offered in conjunction with a complement of services that reflects social determinants of health and well-being. For YAs with LLCs, these resources will support their health, social, vocational, independent living, and educational goals to maximize their opportunities in an abbreviated time frame.


The objectives of this workshop are to:

1. Provide an overview of the young adult population with palliative care needs.
2. Discuss current care of this population.
3. Highlight results from three recent projects to examine and address needs of this population.
4. Dialogue with audience about other programs, initiatives, or ideas to address the needs of this population.

We look forward to robust conversations and ideas from your practice and research.