Children's visits to the paediatric intensive care unit from the nurses' experience.

BACKGROUND: Family process disruption is one of the main consequences of the hospitalization of a critically ill child in a Paediatric Intensive Care Unit (PICU). Children's visits to PICU may help improve family coping. However, this is not standard practice and nurses' experiences in facilitating children's visits to units where it is encouraged is unknown. AIM: To explore nurses' experience related to promoting the visits of siblings to PICU. METHODS: An interpretative phenomenological study was carried out through in-depth interviews in two PICUs belonging to third level public hospitals in Madrid. Twelve nurses with more than two years of experience in PICU were interviewed. They were all were working in PICU during the study. Furthermore, a PICU psychologist with an experience of four years was interviewed and this was considered shadowed data. Data analysis followed a thematic discourse analysis. RESULTS: Nurses' experience of facilitating children's visits to PICU can be condensed into four themes: emerging demand for visits, progressive preparation, decision-making through common consensus and creating intimate spaces. CONCLUSIONS: The experience of nurses in facilitating visits is mainly in response to the demand of families going through prolonged hospitalisation or end-of-life situations. The role of the nurse is one of accompaniment, recognising the major role of parents in the preparation of children and in developing the visit. Nurses feel insecure and lack resources for emotional support and demand action protocols to guide intervention and decision making.

[Chylothorax: experience in a paediatric intensive care unit]. / Quilotórax: experiencia en una unidad de cuidados intensivos pediátricos.

INTRODUCTION: Chylothorax is a fairly common condition seen in paediatric intensive care units, since it usually appears in the postoperative care of cardiothoracic surgery. Nevertheless, there is still uncertainty on the most effective treatment option and the prognostic factors for a positive response. OBJECTIVES: To describe our experience in the management of patients with chylothorax admitted to our paediatric intensive care unit (PICU). To look for prognostic factors for a response to the different treatments. MATERIAL AND METHOD: This is a descriptive and analytical, retrospective study, that includes the period 2000-2007. All cases of chylothorax of any aetiology diagnosed during this period in our PICU were included (excluding congenital neonatal cases). Demographic variables, aetiology, evolution of the debit, complications, type of treatment with results and side effects were recorded, along with the clinical progress. The possible relationship between the different variables (age, aetiology, debit), and progress, as well as response to treatments was analysed. RESULTS: A total of 24 patients, 12 males and 12 females, were included, of which 70.8% (17) were under 1 year of age. A total of 79.2% (19) were in postoperative care after surgery for a congenital heart disease. The most notable complications were sepsis (3/24 cases, 12.5%), hypoalbuminaemia (3/24, 12.5%), haemodynamic changes (2/24, 8.3%) and catheter-associated sepsis (2/16, 12.5%). The treatment with fat-free or rich in medium chain triglycerides diet was effective in 9/21 cases (43%) and total parenteral nutrition in 3/5 (60%), as opposed to the infusion of somatostatin in 8/11 (73%), used in second or third line. Somatostatin side effects were hypoglycaemia, hyperglycaemia and digestive disturbances, one patient in each case, and not causing complications. We did not find prognostic factors as regards progression or for the response to the different treatments. CONCLUSIONS: Sepsis, hypoalbuminaemia and haemodynamic disturbances were found to be complications associated to chylothorax. The treatment with somatostatin did not produce severe side effects, and there was a positive response in 73% of those treated with it.

Current use of parenteral nutrition in a pediatric hospital. Comparison to the practise 8 years ago.

UNLABELLED: Parenteral nutrition (PN) has become a mainstay in the treatment of critically ill children, and in the management of extremely premature newborns. We analyse the changes in the profile of pediatric PN in our institution during the last decade. METHOD: The clinical record of all patients under 16 who received PN in 1994 and 2002 were reviewed. Epidemiological data as well as composition of the solutions were recorded. Student t test and Chi-square were used for comparisons as appropriate. p value < 0.05 was considered as statistically significant. RESULTS: 194 patients received PN in 1994 (123 neonates and 71 children); 186 in 2002 (112 neonates and 74 children). The percentage of inpatients who received PN was 10.7% in 1994 vs 3.7% in 2002 in neonates; 1% in 1994 vs 1.3% in 2002, in infants and children. Gastrointestinal surgery in infants and children and extreme prematurity in newborns were the most frequent indication. All neonates received tailored PN solutions while it was standardised in almost 60% of children. Internal jugular vein in children and peripherally inserted central venous catheters in neonates were the most usual vascular access. Length of PN was 10 +/- 8.7 days in 1994 vs 9.2 +/- 8.2 in 2002 in neonates; 15.2 +/- 14.8 days in 1994 vs 11.0 +/- 14.9 in 2002 in infants and children. 21% of the children presented at least one complication due to PN. CONCLUSIONS: There have been very few changes in the use as well as in the profile of the PN practise during the last decade. Gastrointestinal surgery and prematurity were the most frequent indications.

[End-of-life care in the pediatric intensive care unit. A literature review]. / Cuidados al final de la vida en la unidad de cuidados intensivos pediátrica. Revisión de la bibliografía.

INTRODUCTION: In the last few years, there has been growing concern in the literature about issues related to end-of-life care in pediatric intensive care units (PICUs), with special attention on the family/patient unit, communication, and a dignified death. OBJECTIVE: To evaluate the experience and development of end-of-life care in PICUs through a literature review, by determining the type of studies that have been performed, their topics, the issues discussed, and their development in the last few years. MATERIAL AND METHODS: Review of the medical literature in Medline and the database of the National Library of Medicine Gateway, using the key words from MeSH: "end of life", "pediatric intensive care", "critical care", "palliative care", "death", and "compassionate care". The earliest year of the search was 1990. The languages selected were English and Spanish. Inclusion criteria were the relationship with the topic to be studied, excluding articles with no abstract. Additional searches were made of references in selected articles. RESULTS: Eighty-one articles were retrieved from the initial search. Of these, 43 were selected as the most relevant investigations in end-of-life care in ICUs and 18 placed special emphasis on the PICU. More than half of the articles (62 %) were reviews and the remaining articles were descriptive or observational studies. The number of publications increased after 1995. Most of the studies were performed in the USA or Canada and only three studies were performed in Spain. CONCLUSIONS: In the last few years, several studies have been performed that reveal increasing concern about limits to therapeutic intervention and the need to improve end-of-life care in the PICU setting.

[Acute disseminated encephalomyelitis. Experience of a tertiary hospital in Spain]. / Encefalomielitis aguda. Experiencia de un hospital terciario español.

INTRODUCTION: To describe the epidemiological, clinical, microbiological, neuroimaging and laboratory features, treatment, and outcome in a cohort of children with acute disseminated encephalomyelitis (ADEM). PATIENTS AND METHODS: Retrospective chart review was performed of children with a diagnosis of ADEM over a 23-year period in a tertiary hospital in Spain. RESULTS: Twelve cases were identified. Ten cases (83%) occurred after 1992. Nine patients (75%) presented between April and September. The mean age was 6 years. Nine patients (75%) were male. Fifty percent of the patients had a history of infectious disease or vaccination. The most frequent nonspecific symptom was fever in 75%. The most frequent neurological manifestations were motor deficits and altered consciousness in 75%. Cerebrospinal fluid abnormalities were found in 83%. All patients had at least one brain scan and one brain magnetic resonance imaging (MRI) scan. Three patients underwent spinal MRI. The sensitivity of MRI was greater than that of the scanner in the diagnosis of ADEM. An etiologic diagnosis was made in four patients: Mycoplasma pneumoniae, beta hemolytic streptococcus group A, Epstein-Barr virus and measles-mumps-rubella vaccination. Eleven patients were treated with corticosteroids and one was treated with intravenous immunoglobulin therapy. One patient died while 75 % of the patients had a good outcome. CONCLUSIONS: ADEM is in an infrequent disease in children. The clinical features are similar to those of infectious encephalitis. Etiologic diagnosis is difficult to establish but this entity is usually preceded by an infection. The neuroimaging test of choice to establish the diagnosis is MRI. In most patients, the prognosis is good.

La visita infantil a la unidad de cuidados intensivos pediátricos desde la experiencia de las enfermeras / Children's visits to the paediatric intensive care unit from the nurses’ experience

Objetivo Explorar la experiencia de las enfermeras en relación con la facilitación de la visita infantil a la UCIP. Método Estudio fenomenológico interpretativo mediante entrevistas en profundidad. El estudio se desarrolló en las UCIP de dos centros públicos madrileños de nivel IIIC. Participaron 12 enfermeras con experiencia mayor de dos años en UCIP que, en el momento de la entrevista, prestaban servicios en dichas unidades. Además, se entrevistó a una psicóloga con experiencia de cuatro años en UCIP cuya información se consideró en el contexto de los datos en la sombra. La información se analizó mediante un análisis temático del discurso. ResultadosLa experiencia de las enfermeras en relación a la facilitación de la visita infantil a la UCIP se puede condensar en cuatro temas: el emerger de la demanda, la preparación progresiva, la toma de decisiones desde el consenso y la creación de espacios de intimidad. Conclusiones Las experiencias de facilitación de la visita responden, principalmente, a la demanda de las familias que viven hospitalizaciones prologadas o al final de la vida. El rol de la enfermera es de acompañamiento reconociendo la labor prioritaria de los padres en la preparación de los niños y el desarrollo de la visita. Las enfermeras se sienten inseguras y faltas de recursos para el apoyo emocional y reclaman protocolos de actuación que orienten la intervención y toma de decisiones. (AU)

Aim To explore nurses’ experience related to promoting the visits of siblings to PICU. Methods An interpretative phenomenological study was carried out through in-depth interviews in two PICUs belonging to third level public hospitals in Madrid. Twelve nurses with more than two years of experience in PICU were interviewed. They all were working in PICU during the study. Furthermore, a PICU psychologist with an experience of four years was interviewed and this was considered shadowed data. Data analysis followed a thematic discourse analysis. Results Nurses’ experience of facilitating children's visits to PICU can be condensed into four themes: emerging demand for visits, progressive preparation, decision-making through common consensus and creating intimate spaces. Conclusions The experience of nurses in facilitating visits is mainly in response to the demand of families going through prolonged hospitalisation or end-of-life situations. The role of the nurse is one of accompaniment, recognising the major role of parents in the preparation of children and in developing the visit. Nurses feel insecure and lack resources for emotional support and demand action protocols to guide intervention and decision making. (AU)

[Hypogonadotrophic hypogonadism and anosmia (Maestre San Juan-Kallman's syndrome) (author's transl)]. / Síndrome de Maestre de San Juan-Kallman (hipogonadismo hipogonadotrófico y anosmia).

Authors present a case of Maestre de San Juan-Kallman syndrome in a male 14 year old, with hypogonadotrophic hypogonadism and anosmia, and with other associated malformations (cryptorchism, epilepsy, hypoacusia and chromosomal anomalies). Standard values of FSH and LH are undetectable. After stimulation with LH-RH, a continued release of gonadotropins is produced. With the clomiphene stimulation there is a negative response.

[Guillain-Barré syndrome. 15 pediatric cases]. / Síndrome de Guillain-Barré. Quince casos pediátricos.

Clinical features and outcome of 15 children with Guillain-Barré syndrome were retrospectively analyzed. In 53% of the patients there was an infectious illness previous to the neurologic symptoms and in five children the etiologic agent was demonstrated. Motor deficit affecting limbs was the most common clinical presentation and facilal paralysis was the most frequent accompanying sign. One of these children developed the Fisher syndrome variant. The outcome was excellent except in one case. We want to remark from this serie high percentage of agents identified in the infectious process previous to Guillain-Barré syndrome and the good outcome of these patients, due to the supportive treatment in the pediatric intensive care unit where they were admitted.

[Deteriorating natural killer activity in familial erythrophagocytic lymphohistiocytosis]. / Actividad "natural killer" deteriorada en la linfohistiocitosis eritrofagocítica familiar.

We report the occurrence of familial erythrophagocytic lymphohistiocytosis disease in a child who had greater involvement of the brain than of visceral organs. The diagnosis was made during life, allowing us to carry out biological, histological and immunological studies. The natural Killer activity was abolished in this patient. The combination chemotherapy--including systemic administration of VP 16-213, steroids and intrathecal methotrexate--, failed to stem the rapid course of the disease.

[Treatment of acute epiglottitis]. / Tratamiento de la epiglotitis aguda.

We analyze 13 children between 1 and 3 years old (mean: 24.6 +/- 6.5 months), who were diagnosed (by direct or radiological examination) of epiglottitis. Seven were male. All of them had fever and respiratory distress. Six blood cultures (46%) were positive for Hemophilus Influenzae, and in 5 cases were resistant to beta-lactamases. Diagnose was made by radiology (70%) or by direct examination (30%). Five patients were not intubated (38%), with a favorable outcome. One died after a cardiorespiratory arrest due to self-extubation. We describe in this study our experience in the conservative treatment of epiglotitis, although initial nasotracheal intubation is the safest method for the management of this entity.

[Gaucher's disease of the 3d type (juvenile form)]. / Enfermedad de Gaucher tipo III (forma juvenil).

A case of Gaucher's disease, juvenile type is presented. Disease manifested with signs of hepatosplenomegaly, and thrombocytopenia. The typical Gaucher's cells were found in bone marrow aspiration. Acid phosphatase levels were 1.74 U. Bessey-Lowry/ml, 80.45% corresponding to the non-prostatic fraction. The enzymatic activity of glucosyl ceramide-beta-glucosidase was determined in a fibroblast culture, being its value of 0.42 mU/mg of protein (control: 3.2 mU/mg of protein). We comment on the existing relationship between the clinical types, as well as the therapeutic possibilities.

Quilotórax: experiencia en una unidad de cuidados intensivos pediátricos / Chylothorax: experience in a paediatric intensive care unit

Introducción: en la experiencia clínica en cuidados intensivos pediátricos es relativamente frecuente encontrar quilotórax, dado que suele aparecer en el postoperatorio de cirugías cardiotorácicas. Sin embargo, todavía hay incertidumbre acerca de su tratamiento en cuanto a la elección de las distintas opciones terapéuticas, su eficacia y factores pronósticos para una respuesta positiva. Objetivos: describir nuestra experiencia en el manejo de los pacientes con quilotórax ingresados en una unidad de cuidados intensivos pediátricos. Buscar factores pronósticos de respuesta a los diversos tratamientos. Material y método: se trata de un estudio descriptivo y analítico, retrospectivo, que abarca el periodo 2000–2007. Se incluyeron los casos de quilotórax pediátrico de cualquier etiología atendidos en dicho periodo en nuestra unidad (excluidos casos neonatales congénitos). Se registraron variables demográficas, etiología, evolución del débito, complicaciones, tipo de tratamiento con resultado y efectos secundarios y evolución clínica. Se analizó estadísticamente la posible relación entre diversas variables (edad, etiología, débito) y la evolución y la respuesta a tratamientos. Resultados: se recogió un total de 24 pacientes, la mitad de cada sexo. Un 70,8% (17) eran menores de 1 año. El 79,2% (19) se encontraban en el postoperatorio de una cirugía por cardiopatía congénita. Las complicaciones más destacables fueron sepsis (3/24 casos, 12,5%), hipoalbuminemia (3/24, 12,5%), alteración hemodinámica (2/24, 8,3%) y sepsis por catéter (2/16, 12,5%). El tratamiento con dieta exenta en grasas o rica en ácidos grasos de cadena media fue eficaz en 9/21 casos (43%) y la nutrición parenteral total en 3/5 (60%), frente a la perfusión de somatostatina en 8/11 (73%), usada como segunda o tercera elección. Los efectos secundarios en relación con ella fueron hipoglucemia, hiperglucemia y molestias digestivas, un paciente en cada caso, y no causaron complicaciones. No se encontraron factores pronósticos de la evolución ni de la respuesta a los diversos tratamientos. Conclusiones: encontramos pacientes con sepsis, hipoalbuminemia y trastornos hemodinámicos como complicaciones relacionadas con el quilotórax. El tratamiento con somatostatina no presentó complicaciones graves y en un 73% de los pacientes tratados se produjo curación del quilotórax (AU)

Introduction: Chylothorax is a fairly common condition seen in paediatric intensive care units, since it usually appears in the postoperative care of cardiothoracic surgery. Nevertheless, there is still uncertainty on the most effective treatment option and the prognostic factors for a positive response. Objectives: To describe our experience in the management of patients with chylothorax admitted to our paediatric intensive care unit (PICU). To look for prognostic factors for a response to the different treatments. Material and method: This is a descriptive and analytical, retrospective study, that includes the period 2000–2007. All cases of chylothorax of any aetiology diagnosed during this period in our PICU were included (excluding congenital neonatal cases). Demographic variables, aetiology, evolution of the debit, complications, type of treatment with results and side effects were recorded, along with the clinical progress. The possible relationship between the different variables (age, aetiology, debit), and progress, as well as response to treatments was analysed. Results: A total of 24 patients, 12 males and 12 females, were included, of which 70.8% (17) were under 1 year of age. A total of 79.2% (19) were in postoperative care after surgery for a congenital heart disease. The most notable complications were sepsis (3/24 cases, 12.5%), hypoalbuminaemia (3/24, 12.5%), haemodynamic changes (2/24, 8.3%) and catheter-associated sepsis (2/16, 12.5%). The treatment with fat-free or rich in medium chain triglycerides diet was effective in 9/21 cases (43%) and total parenteral nutrition in 3/5 (60%), as opposed to the infusion of somatostatin in 8/11 (73%), used in second or third line. Somatostatin side effects were hypoglycaemia, hyperglycaemia and digestive disturbances, one patient in each case, and not causing complications. We did not find prognostic factors as regards progression or for the response to the different treatments. Conclusions: Sepsis, hypoalbuminaemia and haemodynamic disturbances were found to be complications associated to chylothorax. The treatment with somatostatin did not produce severe side effects, and there was a positive response in 73% of those treated with it (AU)