Understanding pediatric palliative care within interdisciplinary palliative programs: a qualitative study
Abstract Purpose To describe the process of delivery of pediatric palliative care from the perspective of a pediatric interdisciplinary team and the children’s parents. Methods A qualitative descriptive case study was conducted. Purposeful sampling took place within a specialized pediatric palliativ...
| Main Authors: | , , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2023-06-01
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| Series: | BMC Palliative Care |
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| Online Access: | https://doi.org/10.1186/s12904-023-01194-5 |
| _version_ | 1797795443142295552 |
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| author | Patricia Rico-Mena Javier Güeita-Rodríguez Ricardo Martino-Alba Lourdes Chocarro-Gonzalez Ismael Sanz-Esteban Domingo Palacios-Ceña |
| author_facet | Patricia Rico-Mena Javier Güeita-Rodríguez Ricardo Martino-Alba Lourdes Chocarro-Gonzalez Ismael Sanz-Esteban Domingo Palacios-Ceña |
| author_sort | Patricia Rico-Mena |
| collection | DOAJ |
| description | Abstract Purpose To describe the process of delivery of pediatric palliative care from the perspective of a pediatric interdisciplinary team and the children’s parents. Methods A qualitative descriptive case study was conducted. Purposeful sampling took place within a specialized pediatric palliative care Unit in Madrid (Spain), located at the Niño Jesus Hospital. The study participants included a specialized pediatric palliative care team from Madrid's pediatric palliative care program, other professional teams involved in interdisciplinary care and parents of children under pediatric palliative care. Data were collected via semi-structured interviews, focus groups and researchers’ field notes. A thematic analysis was performed. Results This study included 28 participants (20 women, 8 men), of whom 18 were professionals who belonged to the pediatric palliative care interdisciplinary team, 4 professionals were from other units that collaborated with the pediatric palliative care, and 6 were parents (5 women, 1 man). The mean age of the pediatric palliative care members was 38.2 years (SD ± 7.9), that of the collaborating professionals was 40.5 (SD ± 6.8), and that of the parents was 44.2 (SD ± 5.4). Two main themes emerged: a) Pediatric palliative care has a distinct identity, associated with life. It represents the provision of special care in highly complex children, in the context of the home, far from the hospital environment; b) The team is key: its interdisciplinary organization provides a more comprehensive view of the child and their family, fosters communication among professionals, and improves coordination with other services involved in the care of children. The mindset shift experienced by ID-PPC professionals towards a palliative approach makes them more sensitive to the needs of their patients and leads them to develop specific skills in areas such as communication, decision-making, and adaptability that were identified as differentiating aspects of pediatric palliative care. Conclusions Describing pediatric palliative care from the professional and parental perspective helps to establish realistic and comprehensive goals for the care of children and their parents. The findings of this study may help with the establishment of a pediatric palliative care team, as a necessary organizational change in a health care system that cares for children with complex and life-threatening conditions. Promoting training in pediatric palliative care, prioritizing more horizontal organizations, providing tools and spaces for coordination and communication between professionals from different services, together with the creation of a position of case coordinator in the care process of children could enhance the understanding of pediatric palliative care services. |
| first_indexed | 2024-03-13T03:18:00Z |
| format | Article |
| id | doaj.art-420db8288df141a7b946bd8a8b2ef38a |
| institution | Directory Open Access Journal |
| issn | 1472-684X |
| language | English |
| last_indexed | 2024-03-13T03:18:00Z |
| publishDate | 2023-06-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Palliative Care |
| spelling | doaj.art-420db8288df141a7b946bd8a8b2ef38a2023-06-25T11:32:17ZengBMCBMC Palliative Care1472-684X2023-06-0122111110.1186/s12904-023-01194-5Understanding pediatric palliative care within interdisciplinary palliative programs: a qualitative studyPatricia Rico-Mena0Javier Güeita-Rodríguez1Ricardo Martino-Alba2Lourdes Chocarro-Gonzalez3Ismael Sanz-Esteban4Domingo Palacios-Ceña5Department of Physiotherapy, Chiropody and Dance, Physical Therapy and Health Sciences Research Group, Universidad Europea de MadridDepartment of Physiotherapy, Occupational Therapy, Rehabilitation, and Physical Medicine, Humanities and Qualitative Research in Health Science Research Group, Universidad Rey Juan CarlosPediatric Palliative Care Unit, Hospital Infantil Universitario Niño JesúsPediatric Palliative Care Unit, Hospital Infantil Universitario Niño JesúsDepartment of Physiotherapy, Chiropody and Dance, Physical Therapy and Health Sciences Research Group, Universidad Europea de MadridDepartment of Physiotherapy, Occupational Therapy, Rehabilitation, and Physical Medicine, Humanities and Qualitative Research in Health Science Research Group, Universidad Rey Juan CarlosAbstract Purpose To describe the process of delivery of pediatric palliative care from the perspective of a pediatric interdisciplinary team and the children’s parents. Methods A qualitative descriptive case study was conducted. Purposeful sampling took place within a specialized pediatric palliative care Unit in Madrid (Spain), located at the Niño Jesus Hospital. The study participants included a specialized pediatric palliative care team from Madrid's pediatric palliative care program, other professional teams involved in interdisciplinary care and parents of children under pediatric palliative care. Data were collected via semi-structured interviews, focus groups and researchers’ field notes. A thematic analysis was performed. Results This study included 28 participants (20 women, 8 men), of whom 18 were professionals who belonged to the pediatric palliative care interdisciplinary team, 4 professionals were from other units that collaborated with the pediatric palliative care, and 6 were parents (5 women, 1 man). The mean age of the pediatric palliative care members was 38.2 years (SD ± 7.9), that of the collaborating professionals was 40.5 (SD ± 6.8), and that of the parents was 44.2 (SD ± 5.4). Two main themes emerged: a) Pediatric palliative care has a distinct identity, associated with life. It represents the provision of special care in highly complex children, in the context of the home, far from the hospital environment; b) The team is key: its interdisciplinary organization provides a more comprehensive view of the child and their family, fosters communication among professionals, and improves coordination with other services involved in the care of children. The mindset shift experienced by ID-PPC professionals towards a palliative approach makes them more sensitive to the needs of their patients and leads them to develop specific skills in areas such as communication, decision-making, and adaptability that were identified as differentiating aspects of pediatric palliative care. Conclusions Describing pediatric palliative care from the professional and parental perspective helps to establish realistic and comprehensive goals for the care of children and their parents. The findings of this study may help with the establishment of a pediatric palliative care team, as a necessary organizational change in a health care system that cares for children with complex and life-threatening conditions. Promoting training in pediatric palliative care, prioritizing more horizontal organizations, providing tools and spaces for coordination and communication between professionals from different services, together with the creation of a position of case coordinator in the care process of children could enhance the understanding of pediatric palliative care services.https://doi.org/10.1186/s12904-023-01194-5PediatricsPalliative carePatient care teamChildParentsQualitative research |
| spellingShingle | Patricia Rico-Mena Javier Güeita-Rodríguez Ricardo Martino-Alba Lourdes Chocarro-Gonzalez Ismael Sanz-Esteban Domingo Palacios-Ceña Understanding pediatric palliative care within interdisciplinary palliative programs: a qualitative study BMC Palliative Care Pediatrics Palliative care Patient care team Child Parents Qualitative research |
| title | Understanding pediatric palliative care within interdisciplinary palliative programs: a qualitative study |
| title_full | Understanding pediatric palliative care within interdisciplinary palliative programs: a qualitative study |
| title_fullStr | Understanding pediatric palliative care within interdisciplinary palliative programs: a qualitative study |
| title_full_unstemmed | Understanding pediatric palliative care within interdisciplinary palliative programs: a qualitative study |
| title_short | Understanding pediatric palliative care within interdisciplinary palliative programs: a qualitative study |
| title_sort | understanding pediatric palliative care within interdisciplinary palliative programs a qualitative study |
| topic | Pediatrics Palliative care Patient care team Child Parents Qualitative research |
| url | https://doi.org/10.1186/s12904-023-01194-5 |
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