Experiencias sobre el cuidado otorgado por madres de jóvenes con tetraplejia de origen traumático: un estudio cualitativo fenomenológico / Caregiving experience of mothers of young people with traumatic tetraplegia: a qualitative phenomenological study

Caregiving experience of mothers of young people with traumatic tetraplegia. A qualitative phenomenological study Introduction: Spinal cord injury (SCI) is defined as damage to the spine that results in a temporary or permanent change in its normal motor, sensory or autonomic function, with irreversible consequences. It is classified as paraplegia and tetraplegia, the latter makes the person highly dependent on care, requiring permanent help from another person to perform daily activities. Objective: To describe the experience of caregivers who are mothers of young people with traumatic tetraplegia, and who are patients of Instituto Teletón Santiago. Methodology: Qualitative study with descriptive phenomenological analysis. Data was gathered by means of semi-structured interviews, which were studied through qualitative content analysis with deductive categories. The overall sample was intentional, including the participation of five mothers who were primary caregivers of their children with tetraplegia, from Instituto Teletón Santiago. Results: The categories found were self-description, impact of the accident, care relationship, impact on the family and other significant factors, relation with the health care network, coping measures, beliefs and learning. The highlights of this type of dependent care included work overload, self-neglect, and deteriorated health. Significant situations from the moment of the accident reflect the experience as a whole. In these circumstances, love emerged as a pop-up topic and became known as the main value. The emotional burden of this experience has been contained and compensated by a positive approach to life, based on cultural and religious beliefs. Conclusion: Mothers become expert caregivers, providing holistic care that must be considered in the interventions of the rehabilitation team, to contribute to the reconstruction and resignification of this relationship of maternal/filial care.

Introducción: Lesión medular (LM) se define como un daño en la médula espinal resultando en un cambio transitorio o permanente, en su función normal motora, sensitiva o autonómica; con consecuencias irreversibles si esta es permanente. Se clasifica en paraplejia y tetraplejia, generando esta última gran dependencia en los cuidados personales de la vida diaria para quien la sufre, necesitando de otro de manera permanente. Objetivo: Describir las experiencias de madres cuidadoras de jóvenes con tetraplejia adquirida de origen traumático, usuarios de Teletón Santiago. Metodología: Estudio cualitativo con análisis fenomenológico, descriptivo. Para la recolección de datos se realizaron entrevistas semiestructuradas, las que fueron analizadas a través de análisis de contenido cualitativo con categorías deductivas. La muestra fue intencionada, participando cinco madres cuidadoras principales de hijos con tetraplejia del Instituto Teletón Santiago. Resultados: Las categorías encontradas fueron descripción de sí mismas, impacto del accidente, relación de cuidado, impacto en la familia y otros significativos, relación con la red de salud, medidas de afrontamiento, creencias y aprendizaje. Los aspectos destacados de este tipo de agente de cuidado dependiente incluyeron sobrecarga, abandono del yo y deterioro de su salud. Las situaciones significativas desde el momento del accidente reflejan la experiencia como un todo. En esta vivencia, el amor surgió como tema emergente y se dio a conocer como el valor principal. La carga emocional de esta experiencia ha sido contenida y compensada por un enfoque positivo sobre la vida, basado en creencias culturales y religiosas. Conclusión: Las madres se vuelven expertas cuidadoras, otorgando un cuidado holístico que debe ser considerado en las intervenciones del equipo de rehabilitación, para contribuir a la reconstrucción y resignificación de esta relación de cuidado materno/filial.

Diagnosis of bacteremia in febrile neutropenic episodes in children with cancer: microbiologic and molecular approach.

BACKGROUND: Bacterial isolation using conventional microbiologic techniques rarely surpasses 25% in children with clinical and laboratory findings indicative of an invasive bacterial infection. The aim of this study was to determine the role of real-time polymerase chain reaction (RT-PCR) from whole blood samples compared with automated blood cultures (BC) in detection of relevant microorganisms causing bacteremia in episodes of high-risk febrile neutropenia (HRFN) in children with cancer. METHODS: Children presenting with HRFN at 6 hospitals in Santiago, Chile, were invited to participate. Blood samples were obtained at admission for BC, and at admission and 24 hours for RT-PCR targeting DNA of Escherichia coli, Staphylococcus aureus, and Pseudomonas aeruginosa causing bacteremia in children with HRFN. RESULTS: A total of 177 HRFN episodes were evaluated from May 2009 to August 2010, of which 29 (16.3%) had positive BC, 9 (5%) positive for 1 of the 3 selected bacterial species: 5 for E. coli, 3 for S. aureus, and 1 for P. aeruginosa. RT-PCR detected 39 bacteria in 36 episodes (20%): 14 E. coli, 20 S. aureus, and 5 P. aeruginosa. The sensitivity, specificity, and positive and negative predictive values of RT-PCR compared with BC were 56%, 80%, 13%, and 97%. The final clinical diagnosis was compatible with an invasive bacterial infection in 30/36 (83%) RT-PCR-positive episodes. CONCLUSIONS: In our series, RT-PCR significantly improved detection of the most relevant bacteria associated with HRFN episodes. Large number of patients and close clinical monitoring, in addition to improved RT-PCR techniques will be required to fully recommend RT-PCR-based diagnosis for the routine workup of children with cancer, fever, and neutropenia.