确定与父母、医疗保健提供者和利益相关者一起进行儿科预先医疗护理计划的关键要素：一项定性研究。
Identifying key elements for paediatric advance care planning with parents, healthcare providers and stakeholders: A qualitative study.
机构信息
Center for Pediatric Palliative Care, University Children's Hospital, Ludwig-Maximilians University of Munich, Munich, Germany.
Palliative Care Service, Centre Hospitalier Universitaire Vaudois, Lausanne, Switzerland.
出版信息
Palliat Med. 2020 Mar;34(3):300-308. doi: 10.1177/0269216319900317. Epub 2020 Jan 27.
BACKGROUND
Although international guidelines recommend discussions about goals of care and treatment options for children with severe and life-limiting conditions, there are still few structured models of paediatric advance care planning.
AIM
The study aimed at identifying key components of paediatric advance care planning through direct discussions with all involved parties.
DESIGN
The study had a qualitative design with a participatory approach. Participants constituted an advisory board and took part in two transdisciplinary workshops. Data were collected in discussion and dialogue groups and analysed using content analysis.
SETTING/PARTICIPANTS: We included bereaved parents, health care providers and stakeholders of care networks.
RESULTS
Key elements were discussions, documentation, implementation, timing and participation of children and adolescents. Parents engage in discussions with facilitators and persons of trust to reach a decision. Documentation constitutes the focus of professionals, who endorse brief recommendations for procedures in case of emergencies, supplemented by larger advance directives. Implementation hindrances include emotional barriers of stakeholders, disagreements between parents and professionals and difficulties with emergency services. Discussion timing should take into account parental readiness. The intervention should be repeated at regular intervals, considering emerging needs and increasing awareness of families over time. Involving children and adolescents in advance care planning remains a challenge.
CONCLUSION
A paediatric advance care planning intervention should take into account potential pitfalls and barriers including issues related to timing, potential conflicts between parents and professionals, ambiguity towards written advance directives, the role of non-medical carers for paediatric advance care planning implementation, the need to involve the child and the necessity of an iterative process.
背景
尽管国际指南建议对患有严重且生命有限的疾病的儿童进行有关治疗目标和治疗方案的讨论，但目前仍缺乏针对儿科预立医疗照护计划的结构化模式。
目的
本研究旨在通过与所有相关方进行直接讨论，确定儿科预立医疗照护计划的关键组成部分。
设计
本研究采用定性设计和参与式方法。参与者构成顾问委员会，并参加了两个跨学科工作坊。通过讨论组和对话组收集数据，并使用内容分析法进行分析。
地点/参与者：我们纳入了失去孩子的父母、医疗保健提供者和护理网络的利益相关者。
结果
关键要素包括讨论、文件记录、实施、儿童和青少年的参与和时间选择。父母与促进者和信任的人进行讨论以做出决定。文件记录是专业人员的重点，他们会为紧急情况下的程序提供简短的建议，并附有更大的预先指示。实施的障碍包括利益相关者的情感障碍、父母与专业人员之间的分歧以及与紧急服务部门的困难。讨论时间应考虑到父母的准备情况。该干预措施应定期重复进行，同时考虑到随着时间的推移家庭不断出现的需求和意识的提高。让儿童和青少年参与预立医疗照护计划仍然是一个挑战。
结论
儿科预立医疗照护计划干预措施应考虑到潜在的陷阱和障碍，包括与时间相关的问题、父母与专业人员之间的潜在冲突、对书面预立指令的模糊性、非医疗照顾者在儿科预立医疗照护计划实施中的作用、需要让儿童参与以及迭代过程的必要性。
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