期刊
EUROPEAN JOURNAL OF PEDIATRICS
卷 180, 期 3, 页码 949-957出版社
SPRINGER
DOI: 10.1007/s00431-020-03824-z
关键词
Communication; Advance care planning; Goals of care; Pediatric palliative care
类别
资金
- Netherlands Organisation for Health Research and Development (ZonMw) [82-82100-98-208]
Preparation for future scenarios in pediatric palliative care is seen as complex and challenging by families and healthcare professionals. Anticipating the future involves goal-directed conversations, anticipated care, and guidance on the job, focusing on achieving individual care goals, organizing practical arrangements, and short-term anticipation in difficult situations.
Preparing for future scenarios in pediatric palliative care is perceived as complex and challenging by both families and healthcare professionals. This interpretative qualitative study using thematic analysis aims to explore how parents and healthcare professionals anticipate the future of the child and family in pediatric palliative care. Single and repeated interviews were undertaken with 42 parents and 35 healthcare professionals of 24 children, receiving palliative care. Anticipating the future was seen in three forms: goal-directed conversations, anticipated care, and guidance on the job. Goal-directed conversations were initiated by either parents or healthcare professionals to ensure others could align with their perspective regarding the future. Anticipated care meant healthcare professionals or parents organized practical care arrangements for future scenarios with or without informing each other. Guidance on the job was a form of short-term anticipation, whereby healthcare professionals guide parents ad hoc through difficult situations. Conclusion: Anticipating the future of the child and family is mainly focused on achievement of individual care goals of both families and healthcare professionals, practical arrangements in advance, and short-term anticipation when a child deteriorates. A more open approach early in disease trajectories exploring perspectives on the future could allow parents to anticipate more gradually and to integrate their preferences into the care of their child.
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