Caregiver perspectives of dialysis initiation for children with kidney disease: a qualitative study

House, Taylor R.; Rosenberg, Abby R.; Zimmerman, Cortney Taylor; Barton, Krysta S.; Wightman, Aaron

doi:10.1007/s00467-022-05472-x

Cited by 3 publications

(3 citation statements)

References 44 publications

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“…Integrating the perspectives of the developing child as well as their caregivers places significant cognitive, emotive and time burdens on paediatric nephrologists. This serves as a potentially important barrier to achieving an ideal of shared decision-making and family-centred care [37,38,75]. NephroTalk is a palliative care communication curriculum developed for adult nephrology fellows targeting delivery of serious news commonly encountered in nephrology [80,81 ▪▪ ].…”

Section: Potential Palliative Interventions For Applicationmentioning

confidence: 99%

“…Likewise, parents of children with cancer who received PRISM demonstrated improved resilience and benefit finding [71]. There is a significant overlap in frameworks of resilience describing the experience of caregivers of children with cancer and those of caregivers of children receiving dialysis [75]. Commonality in the role of resilience suggests that an intervention like PRISM may likewise prove beneficial for children with advanced kidney disease and their caregivers.…”

Section: Potential Palliative Interventions For Applicationmentioning

confidence: 99%

Section: Potential Palliative Interventions For Applicationmentioning

confidence: 99%

See 2 more Smart Citations

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

House

Wightman

2022

Current Opinion in Nephrology &Amp; Hypertension

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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.SummaryChildren with advanced kidney disease and their families will benefit from incorporation of their perspectives and values, facilitated by palliative interventions.

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Section: Potential Palliative Interventions For Applicationmentioning

confidence: 99%

Section: Potential Palliative Interventions For Applicationmentioning

confidence: 99%