Effectiveness of a Family-Caregiver Training Program in Home-Based Pediatric Palliative Care
<i>Background:</i> 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...
| Main Authors: | , , , , |
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| Format: | Article |
| Language: | English |
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MDPI AG
2021-02-01
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| Series: | Children |
| Subjects: | |
| Online Access: | https://www.mdpi.com/2227-9067/8/3/178 |
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| author | Lourdes Chocarro González Manuel Rigal Andrés Julio C. de la Torre-Montero Marta Barceló Escario Ricardo Martino Alba |
| author_facet | Lourdes Chocarro González Manuel Rigal Andrés Julio C. de la Torre-Montero Marta Barceló Escario Ricardo Martino Alba |
| author_sort | Lourdes Chocarro González |
| collection | DOAJ |
| description | <i>Background:</i> 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. <i>Method:</i> 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. <i>Results:</i> 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. <i>Conclusions:</i> 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. |
| first_indexed | 2024-03-09T00:29:11Z |
| format | Article |
| id | doaj.art-31f67e3d80084971a1ba377ade359ae3 |
| institution | Directory Open Access Journal |
| issn | 2227-9067 |
| language | English |
| last_indexed | 2024-03-09T00:29:11Z |
| publishDate | 2021-02-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Children |
| spelling | doaj.art-31f67e3d80084971a1ba377ade359ae32023-12-11T18:36:02ZengMDPI AGChildren2227-90672021-02-018317810.3390/children8030178Effectiveness of a Family-Caregiver Training Program in Home-Based Pediatric Palliative CareLourdes Chocarro González0Manuel Rigal Andrés1Julio C. de la Torre-Montero2Marta Barceló Escario3Ricardo Martino Alba4Cuidados Paliativos Pediátricos, Hospital Infantil Universitario Niño Jesús, 28009 Madrid, SpainCuidados Paliativos Pediátricos, Hospital Infantil Universitario Niño Jesús, 28009 Madrid, SpainSan Juan de Dios School of Nursing and Physical Therapy, Comillas Pontifical University, 28350 Madrid, SpainCuidados Paliativos Pediátricos, Hospital Infantil Universitario Niño Jesús, 28009 Madrid, SpainCuidados Paliativos Pediátricos, Hospital Infantil Universitario Niño Jesús, 28009 Madrid, Spain<i>Background:</i> 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. <i>Method:</i> 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. <i>Results:</i> 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. <i>Conclusions:</i> 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.https://www.mdpi.com/2227-9067/8/3/178pediatricspalliative careparentshealth promotioneducation |
| spellingShingle | Lourdes Chocarro González Manuel Rigal Andrés Julio C. de la Torre-Montero Marta Barceló Escario Ricardo Martino Alba Effectiveness of a Family-Caregiver Training Program in Home-Based Pediatric Palliative Care Children pediatrics palliative care parents health promotion education |
| title | Effectiveness of a Family-Caregiver Training Program in Home-Based Pediatric Palliative Care |
| title_full | Effectiveness of a Family-Caregiver Training Program in Home-Based Pediatric Palliative Care |
| title_fullStr | Effectiveness of a Family-Caregiver Training Program in Home-Based Pediatric Palliative Care |
| title_full_unstemmed | Effectiveness of a Family-Caregiver Training Program in Home-Based Pediatric Palliative Care |
| title_short | Effectiveness of a Family-Caregiver Training Program in Home-Based Pediatric Palliative Care |
| title_sort | effectiveness of a family caregiver training program in home based pediatric palliative care |
| topic | pediatrics palliative care parents health promotion education |
| url | https://www.mdpi.com/2227-9067/8/3/178 |
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