Abstract
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.
Highlights
Royal College of Pediatric and Child Health (RCPCH) describe four archetypes that help framing the evolution of a patient with any “life-limiting” disease, who could benefit from a palliative approach [1]
This is the goal number of patients to be attended by a Pediatric Palliative Care Unit [2] in our region
18 caretakers of 14 of these patients, accepted enrollment in the study (Figure 2). When both parents acted as main caretakers, and both attended the program, both were included in the study
Summary
In the last 5 years under study, an average of 375 people under the age of 20 die annually in the Madrid Autonomous Region. Over half of these (55.4%) died of life-threatening diseases, as previously foreseen. We estimate that from a total of 1,300,917 children living in the Madrid Autonomous Region, between 1300 and 2100 children live with a life-threatening disease This is the goal number of patients to be attended by a Pediatric Palliative Care Unit [2] in our region
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