Department of Physiotherapy, Chiropody and Dance, Physical Therapy and Health Sciences Research Group, Universidad Europea de Madrid, C. Tajo, S/N, 28670 Villaviciosa de Odón, Madrid, Spain.
International Doctorate School, Rey Juan Carlos University, Madrid, Spain.
BMC Palliat Care. 2023 Jun 24;22(1):80. doi: 10.1186/s12904-023-01194-5.
To describe the process of delivery of pediatric palliative care from the perspective of a pediatric interdisciplinary team and the children's parents.
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.
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.
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.
从儿科跨学科团队和儿童家长的角度描述儿科姑息治疗的实施过程。
采用定性描述性病例研究方法。在马德里（西班牙）尼尼奥耶稣医院的一家专门的儿科姑息治疗病房进行了有目的的抽样。研究参与者包括马德里儿科姑息治疗项目的专门儿科姑息治疗团队、参与跨学科护理的其他专业团队以及儿科姑息治疗下的儿童的家长。通过半结构化访谈、焦点小组和研究人员的实地笔记收集数据。进行了主题分析。
这项研究包括 28 名参与者（20 名女性，8 名男性），其中 18 名是属于儿科姑息治疗跨学科团队的专业人员，4 名专业人员来自与儿科姑息治疗合作的其他单位，6 名是家长（5 名女性，1 名男性）。儿科姑息治疗成员的平均年龄为 38.2 岁（SD±7.9），合作专业人员的平均年龄为 40.5 岁（SD±6.8），家长的平均年龄为 44.2 岁（SD±5.4）。出现了两个主要主题：a）儿科姑息治疗具有独特的身份，与生命相关。它代表着在家庭环境中为高度复杂的儿童提供特殊护理，远离医院环境；b）团队是关键：其跨学科组织为儿童及其家庭提供了更全面的视角，促进了专业人员之间的沟通，并改善了与参与儿童护理的其他服务之间的协调。ID-PPC 专业人员向姑息治疗方法转变的思维模式使他们对患者的需求更加敏感，并使他们在沟通、决策和适应能力等领域发展出特定技能，这些技能被认为是儿科姑息治疗的区别特征。
从专业人员和家长的角度描述儿科姑息治疗有助于为儿童及其家长的护理制定现实和全面的目标。本研究的结果可能有助于建立儿科姑息治疗团队，这是在为患有复杂和危及生命疾病的儿童提供护理的医疗保健系统中进行的必要组织变革。在儿科姑息治疗中推广培训，优先考虑更横向的组织，为来自不同服务的专业人员提供协调和沟通的工具和空间，以及在儿童护理过程中创建案例协调员职位，可以增强对儿科姑息治疗服务的理解。
