Background: Pediatric palliative cares involve the whole family, along with the interdisciplinary pediatric palliative care (PPC) team. The commitment of the PPC team and the engagement of the family at different levels can play a key role in advancing a better quality of life in children and families. Method: A descriptive pre-post educational intervention study was carried out. The creation of a training program (with the term “school” used to denote this effort) strives to prepare caretakers to master the skills as well as provide support for the care of children with serious conditions requiring palliative through home-based initiatives. The analysis includes aspects of learning and satisfaction with the activity in a final sample of 14 families who had one child enrolled into a home-based palliative care program. Results: After the educational intervention in our school, the mean score of the theoretical evaluation was 9.14 points (SD 0.96), showing improvement with respect to the initial assessment, (mean diff. of +0.98 points). Although the analysis of all conceptual areas demonstrates a trend towards a positive impact of the intervention, feeding-related instruction saw the highest level of improvement, with a mean difference of +1.43 points. All enrolled parents expressed having a very positive experience during their participation in the educational program. Conclusions: The educational program showed a positive trend in the acquisition of knowledge and skills, resulting in a positive impact on the self-perception of their abilities. This psycho-educational space allowed them to share their experience of daily care for a child with complex needs with other families, showing them that they were not alone and that they could help each other.

The subcutaneous route is a useful alternative for drug administration in palliative care. Although there is scientific evidence on its use in adult patients, the literature in pediatric palliative care is almost nonexistent. To describe the experience of a pediatric palliative care unit (PPCU) with in-home subcutaneous drug administration symptom control. Prospective observational study of patients receiving home-based subcutaneous treatment administered as part of a PPCU treatment regimen over 16 months. Analysis includes demographic and clinical variables and treatment received. Fifty-four different subcutaneous lines were inserted in the 15 patients included, mainly in the thigh (85.2%). The median time of needle in situ was 5.5 days (range: 1-36 days). A single drug was administered in 55.7% of treatments. The most frequently used drugs were morphine chloride (82%) and midazolam (55.7%). Continuous subcutaneous infusion was the predominant administration route (96.7%), with infusion rates oscillating between 0.1 mL/h and 1.5 mL/h. A statistically significant relationship was found between the maximum infusion rate and induration onset. Of the 54 lines placed, 29 (53.7%) had an associated complication requiring line removal. The primary cause for removal was insertion-site induration (46.3%). Subcutaneous lines were mainly used to manage pain, dyspnea, and epileptic seizures. In the pediatric palliative care patients studied, the subcutaneous route is most frequently used for administering morphine and midazolam in continuous infusion. The main complication was induration, especially with longer dwell times or higher infusion rates. However, further studies are required to optimize management and prevent complications.

Background: There is few literature on the difficulties and different meanings of gastrostomy tubes (GST) for parents of children with palliative needs, and what specific palliative care teams contribute to this process. Aim: To explore the process of information in the decision of performing a gastrostomy and the meanings that parents of children with palliative needs build around them. Design: Semi-structured interviews which were transcribed and analysed using Grounded Theory. Setting/participants: Parents and caretakers of children admitted in Paediatric Palliative Care Unit of Madrid Autonomous Community (Spain) whose children bore a gastrostomy device. Results: Two core categories arise ('Fight' and 'The child as a life-meaning generator'). In all the cases, the child supplied the meaning to go on, and the Palliative Care Unit (CPU) helped in the daily care of the child and solving problems derived from the handling of the GT. Conclusions: It is necessary to improve the process of giving bad news and to introduce models of health care that focus on parents and child as the center of palliative care. It is also necessary to develop educational programs that enable continuity of care at home for children with palliative needs.

El objetivo de este artículo es reflexionar sobre los atributos del concepto de intersubjetividad y su relevancia en los cuidados de enfermería. Se propone una reflexión teórica sobre las relaciones intersubjetivas establecidas en la aplicación de cuidados de enfermería desde las aportaciones del interaccionismo simbólico y las ciencias de la enfermería. En el ámbito de enfermería las relaciones interpersonales forman parte de la realidad cotidiana, y emergen como un proceso intersubjetivo entre los actores sociales implicados en la acción cuidadora. Profundizar en la naturaleza del concepto de intersubjetividad aumentará la eficacia de la relación terapéutica que se establece entre el profesional de enfermería y el enfermo.

Introducción: El cumplimiento de un Deseo a un niño/a adolescente en la etapa final de la vida, puede considerarse una herramienta valiosa de la atención en el ámbito de los Cuidados Paliativos Pediátricos durante el proceso de duelo de los padres. Esta intervención contribuye a mejorar la calidad de vida del niño y ofrece un recurso significativo para las familias durante la despedida. Objetivo: Explorar la percepción de los padres sobre el cumplimiento de Deseo de su hijo/a ya fallecido en el contexto de Cuidados Paliativos Pediátricos. Método: Estudio cualitativo desde la Teoría Fundamentada. Los participantes fueron madres/padres cuyos hijos cumplieron un Deseo a través de la Fundación 38 Grados (Madrid) y ya habían fallecido en el momento del estudio. Análisis de los datos a través del método de comparación constante hasta identificar los conceptos clave y la categoría central. Resultados: Emergen cuatro categorías principales 1) el Deseo abre puertas, 2) sitúa al niño/a y a la familia, 3) querer devolver lo recibido y 4) experiencia del deseo. De estas categorías surgieron 12 dimensiones y una categoría central. Conclusiones: El cumplimiento del Deseo ha sido una experiencia intensa para los padres quienes la recuerdan de manera positiva y les impulsa para ayudar a otras personas que hayan perdido a sus hijos. Esta intervención ha creado espacios significativos para el diálogo y la despedida. Los padres consideran el Deseo como un legado del hijo/a que les está ayudando a resignificar su pérdida.