Parent Perceptions of Infant Symptoms at End-of-Life in the NICU

Purpose and Significance: Despite significant technological advances, many infants admitted to the neonatal intensive care unit (NICU) do not survive. Limited research has focused on symptoms infants may experience as they approach end-of-life. The purpose of this study was to examine concordance in infant symptom identification between medical record and parental report. Conceptual Framework: The Framework for a Good Neonatal Death was used to guide this study. This framework includes the interaction of three domains: infant, parents, and nurses that may result in an improved experience at end-of-life. Symptom identification and parent perceptions are important concepts included within these domains. Method: 433 parents (248 mothers, 185 fathers) of infants who died in the NICU between 2009 and 2014 were invited to participate. Following informed consent, parents of 40 infants [40 mothers (M age = 33 years), 27 fathers (M age = 37 years)] reported on the presence of symptoms during the last week of their infant’s life. Medical record reviews were also completed for each infant. Parent survey and chart data were compared for six symptoms for which there was overlapping data: pain, agitation, respiratory distress, feeding intolerance, seizures, and lethargy. Results: Parents identified several symptoms (Mother M =2.8, Father M = 2.6, range = 1-5) with pain, agitation, and respiratory distress most commonly endorsed. Within the 27 parental dyads, mothers reported agitation significantly more than fathers, while fathers reported seizures significantly more than mothers. Comparisons between the medical record and parental report of symptoms demonstrated that both parents reported seizures more often than documented in the medical record. Parents reported frequencies similar to the chart for the presence of pain, agitation, respiratory distress, feeding intolerance, and lethargy. Conclusions: Parents demonstrate awareness of the infant’s well-being at end-of-life which closely matches medical staff documentation, however perceptions may differ between parents. Parent perceptions of infant symptom burden likely plays an important role in decision-making regarding treatment. Future research is needed to further understand parents’ views of symptom management and potential suffering as it relates to end-of-life care.The Clinical and Translational Research Intramural Funding Program at Nationwide Children's HospitalA three-year embargo was granted for this item.Academic Major: Nursin

Evaluation of children with haemophagocytic lymphohistiocytosis (HLH) at Red Cross War Memorial Children's Hospital 1991-2010

Includes bibliographical references.Haemophagocytic Lymphohistiocytosis (HLH) is a rare haematological disorder in children. However, this is probably an underestimation due to the difficulty in diagnosing the disease. HLH is characterized clinically by persistent fevers, organomegaly, cytopaenias and typical biochemical derangements viz. hypertriglyceridaemia, hyperferritinaemia and hypofibrinogenaemia. Other associated findings include decreased natural killer cell (NKC) function and raised soluble CD 25. The exact pathophysiology of HLH is not completely understood but involves a trigger (often an infection) which sets off an uncontrolled inflammatory cascade, characterized by an increase in hyperactivated macrophages and T lymphocytes which leads to increased production of cytokines, alongside reduced cellular cytotoxicity as a result of reduced or absent NKC function

Enacting Reasoning-and-Proving in Secondary Mathematics Classrooms through Tasks

Proof is the mathematical way of convincing oneself and others of the truth of a claim for all cases in the domain under consideration. As such, reasoning-and-proving is a crucial, formative practice for all students in kindergarten through twelfth grade, which is reflected in the Common Core State Standards in Mathematics. However, students and teachers exhibit many difficulties employing, writing, and understanding reasoning-and-proving. In particular, teachers are challenged by their knowledge base, insufficient resources, and unsupportive pedagogy. The Cases of Reasoning and Proving (CORP) materials were designed to offer teachers opportunities to engage in reasoning-and-proving tasks, discuss samples of authentic practice, examine research-based frameworks, and develop criteria for evaluating reasoning-and-proving products based on the core elements of proof. A six-week graduate level course was taught with the CORP materials with the goal of developing teachers’ understanding of what constitutes reasoning-and-proving, how secondary students benefit from reasoning-and-proving, and how they can support the development of students’ capacities to reason-and-prove. Research was conducted on four participants of the course during either their first or second year of teaching. The purpose of the research was to study the extent to which the participants selected, implemented, and evaluated students’ work on reasoning-and-proving tasks. The participants’ abilities were examined through an analysis of answers to interview questions, tasks used in class, and samples of student work, and scoring criteria. The results suggest that: 1.) participants were able to overcome some of the limitations of their insufficient resource by modifying and creating some reasoning-and-proving exercises; 2.) participants were able to maintain the level of cognitive demand of proof tasks during implementation; and 3) participants included some if not all of the core elements of proof in their definition of proof and in their evaluation criteria for student products of reasoning-and-proving products