| Autor: |
Chocarro González L; Cuidados Paliativos Pediátricos, Hospital Infantil Universitario Niño Jesús, 28009 Madrid, Spain.; Faculty of Health Sciences, Universidad Internacional de la Rioja (UNIR), 28040 Madrid, Spain., Rigal Andrés M; Cuidados Paliativos Pediátricos, Hospital Infantil Universitario Niño Jesús, 28009 Madrid, Spain.; Faculty of Health Sciences, Universidad Internacional de la Rioja (UNIR), 28040 Madrid, Spain., de la Torre-Montero JC; San Juan de Dios School of Nursing and Physical Therapy, Comillas Pontifical University, 28350 Madrid, Spain., Barceló Escario M; Cuidados Paliativos Pediátricos, Hospital Infantil Universitario Niño Jesús, 28009 Madrid, Spain.; Faculty of Health Sciences, Universidad Internacional de la Rioja (UNIR), 28040 Madrid, Spain., Martino Alba R; Cuidados Paliativos Pediátricos, Hospital Infantil Universitario Niño Jesús, 28009 Madrid, Spain.; Faculty of Health Sciences, Universidad Internacional de la Rioja (UNIR), 28040 Madrid, Spain. |
| Abstrakt: |
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. |
