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Navigating the terrain of moral distress: Experiences of pediatric end-of-life care and bereavement during COVID-19

Objective: Parents of seriously ill children worry about their vulnerable child contracting COVID-19, whether their child's palliative care providers will be able to continue to provide the same quality of care to their child, and who can be with the child to provide comfort. For providers, shifts in healthcare provision, communication formats, and support offerings for families facing distress or loss during the pandemic may promote providers’ moral distress.

Thu, 06/09/2022 - 10:48

Longitudinal predictors of caregiver resilience outcomes at the end of childhood cancer treatment

Objective: Caregiver resilience in the context of childhood cancer treatment has been described using cross‐sectional and retrospective studies, but little is known about prospective predictors of resilience outcomes. We examined associations of demographics, cancer‐related variables, and intrapersonal and interpersonal factors at diagnosis (family psychosocial risk, perceived social support, and healthcare self‐efficacy) and psychosocial services provided during treatment with caregiver resilience outcomes at the end of treatment.

Wed, 06/08/2022 - 12:30

Development and psychometric validation of the family-centered multidimensional outcome measure for pediatric palliative care targeted to children with severe neurological impairments—A multicenter prospective study

Background: Comprehensive outcome measurement in pediatric palliative care focusing on the entire unit of care, that is, the affected child and its family, is crucial to depict treatment effects. Despite its increasing relevance, no appropriate multidimensional outcome measures exist for the largest patient group in this field, namely children with severe neurological impairments.

Tue, 02/08/2022 - 16:09

Central Vascular Access Device Complications in Pediatric Home Care Patients Managed by Family Caregivers or Nurses

Background: There is a paucity of data regarding complications and outcomes of central vascular access devices (CVADs) in pediatric home care patients. Unlike hospital and clinic settings, home care patients commonly receive catheter care and accesses by family caregivers rather than nurses. Design: This 2-year prospective study compared complications and outcomes of 222 CVADs managed by nurses or family caregivers.

Thu, 01/27/2022 - 15:51

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