Browse Items (20 total)

Context: Parents of children who die in the pediatric intensive care unit (PICU) carry memories of their child's suffering throughout a lifelong grieving experience. Given their prolonged time at the bedside, PICU nurses are poised to attend to dying…

Outcomes: 1. Identify key actions that help prepare families for the dying process. 2. Consider how the defined key actions may apply to other settings of practice. Key Message: Preparing families for end-of-life symptoms and circumstances may help…

Purpose Parents' perceptions of their child's suffering affect their bereavement experience. Identifying factors that shape parental perceptions of suffering could help build effective supportive interventions for children and parents navigating EOL…

OBJECTIVE: This study aimed to evaluate the impact of advance care planning (ACP) on parent-reported end-of-life (EOL) outcomes in the neonatal intensive care unit (NICU). STUDY DESIGN: Single-center, cross-sectional mixed-methods survey study of…

Outcomes: 1. Describe the evidence-based benefits of serious illness conversations 2. Describe outcomes from a structured, multicomponent advance care planning communication intervention, the Pediatric Serious Illness Communication Program Background…

OBJECTIVE: Children with complex chronic conditions (CCCs) and their parents benefit from supportive serious illness care when their conditions are severe and impact their quality of life and stress. This includes not only expert medical care but…

Many NICUs have reached an inflection point where infant deaths following limitation of life-sustaining treatments outnumber those following unsuccessful resuscitations, and many infants who survive continue to require intensive supports. Families of…

CONTEXT: Improving end-of-life care for children with complex chronic conditions (CCCs) requires parental perspectives. The vulnerability of bereaved parents has historically been a research barrier and studies describing their research participation…

Background: Many children with complex chronic conditions (CCCs) are supported by medical technologies. Objective: The aim of this study was to understand bereaved parent perspectives on technology assistance among this unique population. Design:…

Background: Pediatric palliative care (PPC) consultation is infrequent among children on extracorporeal membrane oxygenation (ECMO). Objective(s): Investigate intensive care unit (ICU) team members' perceptions of automatic PPC consultation for…

Despite advances in medicine, some children will always die; a decline in pediatric intensive care unit (PICU) mortality to zero will never be achieved. The mortality decline is correspondingly asymptotic, yet we remain preoccupied with mortality…

Context: Children with cancer and cardiac disease suffer with high symptom burden at end of life (EOL). Little is known about the EOL experience for children with other complex chronic conditions (CCCs). Objective(s): To evaluate symptoms and…

CONTEXT: Inclusion of bereaved parents in survey-based research is essential to improving end-of-life care for children and their families. However, racial and ethnic minorities are vastly underrepresented in these studies. OBJECTIVES: Examine which…

OBJECTIVES: Children with complex chronic conditions often receive inpatient and end-of-life care in the ICU, yet little is known about the clinical care strategies that best support this unique group of parents. This study aimed to elucidate…

CONTEXT: Parents desire more opportunities for advance care planning (ACP), however, large-scale adoption of ACP for seriously ill children remains unrealized. Little is known about current approaches to ACP and strategies to circumvent existing…

BACKGROUND: Children with neurologic impairment (NI) are at risk for developing co-occurring chronic conditions, increasing their medical complexity and morbidity. We assessed the prevalence and timing of onset for those conditions in children with…

Objectives: To develop a generalizable advance care planning (ACP) intervention for children, adolescents, and young adults with serious illness using a multistage, stakeholder-driven approach. Study design: We first convened an expert panel of…

CONTEXT: Improving end-of-life care for children with complex chronic conditions (CCCs) requires parental perspectives. The vulnerability of bereaved parents has historically been a research barrier and studies describing their research participation…

OBJECTIVE: To characterize patterns of care at the end of life for children and young adults with life-threatening complex chronic conditions (LT-CCCs) and to compare them by LT-CCC type. STUDY DESIGN: Cross-sectional survey of bereaved parents…

OBJECTIVE: To characterize patterns of care at the end of life for children and young adults with life-threatening complex chronic conditions (LT-CCCs) and to compare them by LT-CCC type. STUDY DESIGN: Cross-sectional survey of bereaved parents (n =…
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