Abstract
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.What is Known:• Anticipating the future in pediatric palliative care occurs infrequently and too late.What is New:• Healthcare professionals and parents use different strategies to anticipate the future of children receiving palliative care, both intentionally and unwittingly. Strategies to anticipate the future are goal-directed conversations, anticipated care, and guidance on the job.• Parents and healthcare professionals are engaged to a limited extent in ongoing explorative conversations that support shared decision-making regarding future care and treatment.
Highlights
The number of children with life-limiting or lifethreatening conditions (Box 1) is increasing as current medical treatment options allow critically ill children to live longer, being dependent on high-complex care for a longer period of time and expanding care facilities at home [1,2,3,4]
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
Anticipating the future in pediatric palliative care occurs infrequently and too late
Summary
The number of children with life-limiting or lifethreatening conditions (Box 1) is increasing as current medical treatment options allow critically ill children to live longer, being dependent on high-complex care for a longer period of time and expanding care facilities at home [1,2,3,4] These children are in need of pediatric palliative care (PPC) from the point of diagnosis and continued throughout the child’s life and death [1, 5]. Insight in current approaches of anticipating the future in PPC is needed Based on these insights, strategies can be further developed to elicit individual family’s values and preferences for future care and treatment in order to support high quality family-centered care from diagnosis of a life-limiting condition until the end-of-life.
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