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The impact of pediatric tracheostomy on the quality of life of caregivers

Objective: Pediatric tracheostomy is a challenge in otolaryngology practice and it is associated with greater morbidity and mortality than in adults; hence, constant vigilance by the designated family caregiver is critical. This study was designed to assess the impact of on quality of life of caregivers in a homecare setting as a result of the presence of child with a tracheostomy.

Fri, 09/02/2022 - 21:21

Multiple roles of parental caregivers of children with complex life-threatening conditions: A qualitative descriptive analysis

Objective: Children born with Complex Life-Threatening Conditions (CLTCs) often require complex and specialized services. Parents of children with CLTCs balance the role of caregiver with other responsibilities of employment, education, relationships, and self-care. The purpose of this paper is to describe the challenges for parents serving as caregivers of children with CLTCs and their intersection with health care provider expectations through utilization and adaptation of the role theory framework.

Tue, 08/23/2022 - 22:51

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