The healthcare providers caring for children with life-threatening illnesses experience considerable compassion fatigue. The purpose of this study was to describe the feelings and emotions of professionals working in an interdisciplinary pediatric palliative home care team. A qualitative case study was conducted, comprising 18 participants. A purposeful sampling technique approach was used including the home-based interdisciplinary pediatric palliative team. Data were collected via semi-structured interviews and researchers’ field notes. A thematic analysis was performed. Two themes emerged: (a) changing life for the better, which described how professionals value life more and helping children and families provides compassion satisfaction, which is comforting and explains their dedication to care; (b) adverse effects of work highlighted the emotional burden of caring for children with life-limiting or life-threatening illnesses, which can affect their job satisfaction and may lead to burnout, showing how experiencing in-hospital child deaths with suffering leads professionals to develop an interest in specializing in pediatric palliative care. Our study provides information on possible causes of emotional distress in professionals caring for children with life-threatening illnesses and highlights strategies that can help them to reduce their distress.

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.

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.