Percepciones de los profesionales sobre la atención prestada, obstáculos y dilemas éticos relacionados con el final de la vida en hospitales, centros de Atención Primaria y residencias de ancianos / Perceptions of health care professionals about end-of-life care, obstacles and ethical dilemmas in hospitals, primary care and nursing homes

Fundamento: Este estudio compara la percepción de la práctica profesional, los obstáculos percibidos y los dilemas éticos de profesionales de medicina y enfermería en la atención al final de la vida en atención primaria (AP), atención hospitalaria (AH) y residencias de ancianos (RA). Material y Métodos: Estudio descriptivo, transversal y multicéntrico. Se realizó un muestreo intencional de profesionales de medicina y enfermería con más de cuatro meses de antigüedad de cuatro hospitales, cinco centros de AP y veintinueve RA de Granada. Se recogieron mediante un cuestionario ad hoc: la percepción de la práctica profesional en ocho dimensiones (estructura y procesos, aspectos físicos, psicológicos, sociales, espirituales, culturales, éticos y cuidados del moribundo), la frecuencia percibida de dilemas éticos, y los obstáculos para el cuidado. Se compararon las puntuaciones de los distintos contextos con la prueba ANOVA y análisis post hoc. Resultados: Participaron 378 profesionales, 215 (56,9%) de AH, 97 (25,7%) de AP y 66 (17,5%) de RA. En comparación a los profesionales de AP y AH, los de RA fueron significativamente (p <0,01) más jóvenes y con mayor experiencia profesional, y puntuaron significativamente mejor (p <0,01) tanto su propia práctica profesional como la de la institución en relación a las dimensiones de estructura y procesos de atención, aspectos físicos, psicológicos, sociales, espirituales, culturales y atención al moribundo. Los aspectos psicológicos y éticos fueron los peor valorados en todos los contextos, no encontrándose diferencias respecto a estos últimos. En comparación a los otros ámbitos estudiados, los profesionales de AP identificaron menos dilemas y los de RA percibieron mayores obstáculos. Conclusiones: Profesionales de AP y AH presentan resultados similares en la percepción de la atención al final de la vida, e inferiores a los de RA, pese a que en las RA se presentan más dilemas y obstáculos

Background: This study compares the perceptions of physicians and nurses regarding professional practice, perceived obstacles and ethical dilemmas in end-of-life care in primary care (PC), hospitals and nursing homes (NH). Methods: Descriptive, cross-sectional and multicentre study. Intentional sampling of physicians and nurses with more than four months professional practice from four hospitals, five PC centres and twenty-nine NH in Granada was carried out. An ad hoc questionnaire was developed to assess perception of professional practice in eight dimensions (structure and processes of care, physical, psychological, social, spiritual, cultural, ethical aspects and care for the dying), frequency of ethical dilemmas, and obstacles to optimum care. Scores of different settings were compared using the ANOVA test and post hoc analysis. Results: A total of 378 professionals participated, 215 (56.9%) from hospitals, 97 (25.7%) from PC and 66 (17.5%) from NH. NH professionals were older and had more professional experience than those from PC and hospitals, and they also rated both the institution and their own professional practice significantly better (p<0.01) than other professionals with respect to the dimensions of structure and processes of care, physical, psychological, social, spiritual, cultural aspects and care for the dying. Psychological and ethical aspects were the worst valued in all settings, with no differences regarding ethical aspects. Fewer ethical dilemmas were identified by PC professionals, while NH professionals perceived greater obstacles to end-of-life care in relation to other settings. Conclusion: Primary care and hospitalization presented similar results on the perception of end-of-life care, and lower results than those of nursing homes, although in these centres more ethical dilemmas and more obstacles were identified

[Experiences and changes in parents of children with infant cerebral palsy: a qualitative study]. / Experiencias y cambios en los padres de niños con parálisis cerebral infantil: estudio cualitativo.

BACKGROUND: The diagnosis of infant cerebral palsy (ICP) is a traumatic event that can provoke multiple effects and changes in the family. The aim of the study is to discover the difficulties that parents face in the process of parenting, especially in the initial period following diagnosis. METHODS: A qualitative study was carried out through semi-structured interviews. Sixteen mothers and fathers whose children were diagnosed with cerebral palsy participated in the study. Data analysis was performed with Atlas.ti 6.2 software following a strategy of open coding. RESULTS: The reception of the diagnosis is perceived as an unexpected event that makes parents change expectations and hopes related to their children. The mode of relation with the child with ICP is different from that with other children as parents are more focused on the possibility of improvement and the future evolution of their child. Changes in different aspects of the lives of these parents are shown, such as demands on time, their economic and labour situation, as well as the relationship of the couple. CONCLUSIONS: In providing care for children with cerebral palsy it is necessary to take the problems of the parents into account, especially in the initial period after diagnosis. The process of parenting a child with cerebral palsy entails many changes in the family so a global perspective is needed to organize interventions.

Influencia de la comunicación del diagnóstico y el pronóstico en el sufrimiento del enfermo terminal / No disponible

Objetivo: describir las características diferenciales entre los pacientes informados del diagnóstico o pronóstico y los que no lo están y establecer diferencias en la percepción del sufrimiento, utilizando el indicador percepción subjetiva del tiempo. Métodos: estudio observacional descriptivo con pacientes terminales de una Unidad de Cuidados Paliativos en Granada (España). Se administró un cuestionario elaborado ad hoc a 33 sujetos. Para medir el sufrimiento se utilizó el instrumento de percepción subjetiva del tiempo. Los motivos de la percepción del tiempo se analizaron cualitativamente mediante teoría fundamentada. Se midieron también indicadores de dolor y otros síntomas, ansiedad percibida por el paciente en sí mismo y en su familia, y comunicación con la familia y los profesionales sanitarios. Para el análisis cuantitativo se usó la prueba de Kruskall-Wallis y el paquete estadístico SPSS 15.0. Resultados: el 24,2% de los pacientes de la muestra estaban completamente informados. No existe relación estadísticamente significativa entre conocer el diagnóstico y la percepción del paso del tiempo. No se han encontrado diferencias estadísticamente significativas entre los grupos respecto a la ansiedad personal y familiar, a la comunicación con la familia ni a la comunicación con los profesionales. Los pacientes completamente informados (CI) suelen estar menos nerviosos que los no informados (NI) y los parcialmente informados (PI), y además es en este grupo (CI) donde se da un mayor porcentaje de pacientes que mantienen una comunicación fluida con los profesionales. El paso del tiempo "muy lento" está relacionado con el dolor grave o muy grave (p = 0,026) y con la ansiedad percibida (p = 0,002). En el análisis cualitativo destaca el aburrimiento y el entretenimiento como una variable relevante en el estudio del sufrimiento (AU)

Objective: to describe the differences between patients informed of their diagnosis or prognosis, and those not informed about it, and to establish differences regarding how patients perceive suffering. In order to do so, an indicator of subjective time perception will be used. Methods: a descriptive observational study carried out with terminally iII patients at one Palliative Care Unit in Granada (Spain); 33 individuals were provided with an ad hoc questionnaire. ln order to measure suffering an instrument on subjective time perception was used. The different ways of perceiving time were analyzed qualitatively through theory. Other indicators of suffering and other symptoms, anxiety of the patient and their families, and communication with the family and health professionals were measured. In order to carry out the quantitative analysis, the Kruskall-Wallis test and SPSS 15.0 version software were used. Results: 24.2% of sample patients were fully informed about diagnosis or prognosis. There was no significant relation between knowing a diagnosis and time perception. No significant differences were identified regarding personal and family anxiety, communication with the family or professionals. Fully informed patients tend to be less anxious than those not informed or partially informed. Besides, it is in the group of full informed patients where there is a higher percentage of patients having a good communication with professionals. Perceiving time "slowly" is related to serious or very serious pain (p =0.026) and the anxiety perceived (p = 0.002). In the qualitative analysis boredom and entertainment are relevant variables in the study of suffering (AU)