Improving community-based care for children with a rare condition: The example of long-segment congenital tracheal stenosis and perceptions of health professionals, parents and teachers.

BACKGROUND: Long segment congenital tracheal stenosis (LSCTS) is a rare, complex condition which is often poorly understood by community-based health professionals (HPs). Anecdotally, such HPs often lack confidence providing care for children, resulting in children being brought to the tertiary centre more frequently than necessary. We wanted to identify the information and support needs of HPs in primary and secondary care looking after a child with LSCTS, the views of those providing education to these children, and elicit parents' perceptions about community-based services, to improve overall care for children and families. METHOD: Questionnaires were sent to 175 community-based HPs and 34 teachers involved in the care of children with LSCTS. Face-to-face or telephone interviews were conducted with 12 parents of patients with LSCTS to establish their perceptions of community-based services. RESULTS: Ninety (51%) completed questionnaires were returned from HPs and 18 (53%) from teachers. Responses indicated low levels of knowledge of LSCTS. Physical, practical and communication information needs were identified by all respondent groups, together with general and condition-specific concerns. Interviews with parents indicated that they thought the level of knowledge about LSCTS in the community was low, which had a negative impact on their willingness to consult local services. Better information provision for HPs, teachers and parents was identified as a means of improving outcomes. CONCLUSION: Professionals caring for children with LSCTS in the community and in schools have unmet information and support needs, with consequences for children, families, HCPs in both the community and tertiary hospital, and teachers.

A nurse-led sexual rehabilitation intervention after radiotherapy for gynecological cancer.

PURPOSE: Although vaginal dilator use after combined pelvic radiation therapy and brachytherapy (RT/BT) is recommended to prevent vaginal shortening and stenosis, women fail to use them and experience sexual problems. A nurse-led sexual rehabilitation intervention targeting sexual recovery and vaginal dilatation was developed. Its feasibility was investigated during a prospective, longitudinal, observational pilot study. METHODS: Four oncology nurses were specifically trained to conduct the intervention. Gynecologic cancer patients treated with RT/BT were assessed using (i) questionnaires on frequency of dilator use (monthly), sexual functioning, and sexual distress (at baseline and 1, 6, and 12 months) and psychological and relational distress (at 1, 6, and 12 months); (ii) semi-structured interviews (between 6 and 12 months); and (iii) consultation recordings (a random selection of 21 % of all consults). RESULTS: Twenty participants were 26-71 years old (mean = 40). Eight participants discontinued participation after 3 to 9 months. At 6 months after RT, 14 out of 16 (88 %), and at 12 months 9 out of 12 (75 %), participants dilated regularly, either by having sexual intercourse or by using dilators. Sexual functioning improved between 1 and 6 months after RT, with further improvement at 12 months. Most participants reported that the intervention was helpful and the nurses reported having sufficient expertise and counseling skills. CONCLUSIONS: According to the pilot results, the intervention was feasible and promising for sexual rehabilitation and regular dilator use after RT. Its (cost-)effectiveness will be investigated in a randomized controlled trial.

Limb shaking. descripción de un caso desde la perspectiva / Limb Shaking: description of a case from a nursing perspective

Introducción. El limb shaking, descrito por Miller Fisher en 1962, se caracteriza por movimientos involuntarios, irregulares y estereotipados de un hemicuerpo desencadenados por la hipoperfusión hemisférica contralateral. Se asocia a una oclusión o estenosis crítica de la arteria carótida interna (ACI) extracraneal contralateral a los movimientos y a una pobre circulación colateral. Esto causa una isquemia que da lugar a las manifestaciones clínicas típicas de un ictus y estos movimientos anormales. Objetivo. Describir el caso clínico de un paciente con limb shaking. Descripción del caso. Varón de 59 años, con factores de riesgo cardiovascular, que acude a Urgencias por un cuadro súbito de afasia motora y pérdida de fuerza en extremidades derechas de predominio braquial distal. Ingresa en la Unidad de Ictus para monitorización neurológica y hemodinámica, donde, coincidiendo con el inicio de la sedestación, presenta estos movimientos involuntarios. Resultados. Las pruebas diagnósticas confirman un ictus isquémico cortical frontal izquierdo. El electroencefalograma muestra una actividad bioeléctrica de fondo normal. Es en la angio-RMN y la arteriografía donde se halla una estenosis crítica de la ACI izquierda. Discusión. Se establece el diagnóstico de limb shaking de acuerdo con los hallazgos del examen clínico y las pruebas complementarias, que confirman la presencia de una pseudooclusión de la ACI izquierda y la refractariedad al tratamiento antiepiléptico. Conclusión. El limb shaking es un síndrome raro, que debe reconocerse y diferenciarse precozmente de otros procesos para tratarlo de forma adecuada. El tratamiento está destinado a restaurar el flujo sanguíneo cerebral, mediante la revascularización quirúrgica o endovascular del hemisferio isquémico (AU)

Introduction. Limb shaking, which was described by Miller Fisher in 1962, is characterized by involuntary, irregular, stereotyped a hemibody triggered by the contralateral hemisphere hypoperfusion. It is associated with an occlusion or stenosis preoclusive of the extracranial internal carotid artery (ICA) contralateral to the movements, and poor circulation contralateral. This causes ischemia resulting in typical clinical manifestations of stroke and these abnormal movements. Objective. To describe a case of limb shaking. Materials and methods. 59 years old man, with cardiovascular risk factors, who go to the Emergency room with symptoms and motor dysphasia and sudden loss of strength in right limbs, with distal brachial predominance. Admitted to Stroke Unit for neurological and hemodynamic monitoring, which coincides with the beginning of the sitting have an episode of these involuntary movements. Results. Diagnostic tests confirm a left frontal cortical ischemic stroke. The EEG shows a normal background bioelectric activity. The angio-MRI and angiography showed a left ICA pseudoocclusion Discussion. A diagnosis of limb shaking based in the clinical examination and additional tests, which confirm the finding of a left ICA pseudo-occlusion and refractory to antiepileptic treatment. Conclusion. The limb shaking is a rare syndrome, which must be recognized and differentiated early from other processes to treat it properly. Treatment is aimed at restoring cerebral blood flow through the ischemic hemisphere revascularization (AU)

Assessment and management of stomal complications: a framework for clinical decision making.

Assessment and management of stoma complications are often the responsibility of nurses across the continuum of care. These complications can occur at different times based on their etiology - immediately postoperatively or even several years after surgery - and often require modifications in a person's daily stoma management. This article presents a conceptual framework to help categorize types of stoma complications based on either etiology or location and offers management options to facilitate quality care. The five major categories of complications include Poor Siting, Stoma Proper, Peri-Intestinal Area, Mucocutaneous Junction, and Iatrogenic. Most of these suggested approaches to care are the recommendations of certified ostomy nurses based on their educational training, expert opinion, and successful experiences. Although these recommendations have often solved the specific problems and greatly improved the quality of life for the person with stomal complications, much research is still needed to confirm and/or improve these nursing approaches.

Clinical management of superior vena cava syndrome.

SVCS is a relative medical emergency because it is usually the result of partial or complete occlusion of the SVC by a malignant tumor. Obstruction of the SVC is mimicked by few other organic problems. The traditional view of therapy protocols is that treatment can and should be started before an etiologic diagnosis is made. More recent literature holds that difficulties arise when treatment is started before a cause and location are known. The therapy of choice for this localized problem is radiation therapy. High-dose, short-interval radiation is the primary treatment around which diuretics, steroids, and anticoagulants are added as adjuvants. Most patients treated with radiation therapy respond subjectively within 72 hours and show objective signs of relief within 7 days. The overall survival rate is dependent on the underlying malignancy. Nursing care focuses on the early detection of symptoms of SVCS and the emergency nature of the acute phase. Side effects of therapy and nursing care needs result from therapy as well as from the underlying disease. The psychosocial stressors on the patient and the family are an integral part of the nursing care. The goals of nursing management are good supportive care, astute assessment, and monitoring of the patient's condition. Finally, SVCS is a relative medical emergency. This entity has been described for many years, but it is often misunderstood and mismanaged. The goal of medical management is a rapid diagnostic work-up and the administration of palliative radiation therapy to alleviate the symptoms.(ABSTRACT TRUNCATED AT 250 WORDS)