Enabling flourishing: novel approaches in palliative medicine for children with advanced kidney disease

Current opinion in nephrology and hypertension(2023)

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摘要
Purpose of reviewPaediatric kidney disease results in considerable burden on children and their families. Paediatric palliative care is a holistic, family-centred care approach intended to enable flourishing and address the many impediments to life participation which advanced kidney disease can impose. To date, palliative care resources have been underutilized in paediatric nephrology. This review will highlight recent literature targeting the engagement and life participation of children with advanced kidney disease through implementation of novel palliative care approaches and propose directions for future research.Recent findingsChildren with advanced kidney disease and their families highly value incorporation of their perspectives, particularly on life participation, within care plan development; but what it means to participate in life can be variable, and clinicians need improved tools to ascertain and incorporate these perspectives. Novel palliative care interventions developed for application in comparable disease states offer potential opportunities for paediatric nephrologists to support this goal.Children with advanced kidney disease and their families will benefit from incorporation of their perspectives and values, facilitated by palliative interventions.
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关键词
family-centred care,life participation,patient-reported outcomes,paediatric palliative care
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