Up to 80% of pediatric intensive care unit (PICU) patients experience new morbidities upon discharge. Patients and families rely on clear communication to prepare for post-PICU morbidities.
Surveys ...were given at PICU discharge to parents and attending physicians of patients who developed multi-organ dysfunction within 24 hours of PICU admission and whose parents completed an initial survey 5 to 10 days after PICU admission. Participants were asked about prognostic conversations regarding PICU mortality; patient post-PICU physical, cognitive, and psychological morbidities; and parent post-PICU psychological morbidities. Parents also indicated whether they wanted more prognostic information.
Forty-nine parents and 20 PICU attending physicians completed surveys for 49 patients. Thirty parent (61%) and 29 physician (59%) surveys reported participating in any prognostic conversations. Concordance between parents and physicians about prognostic conversations was slight (κ = 0.19). Parent (n = 22; 45%) and physician (n = 23; 47%) surveys most commonly reported prognostic conversations about post-PICU physical morbidities. Parents less commonly reported conversations about post-PICU cognitive morbidities (n = 10; 20%). According to parents, bedside nurses and physicians provided most prognostic information; social workers (54%) most commonly discussed parent psychological morbidities. Twenty-six parents (53%) requested more prognostic information.
Most parents and physicians reported having prognostic conversations, primarily about post-PICU physical morbidities. More than half of parents wanted more information about potential post-PICU morbidities. More research is needed to understand how and when medical professionals should have prognostic conversations with parents.
Families and staff in neonatal intensive care units (NICUs) value continuity of care (COC), though definitions, delivery, and impacts of COC are incompletely described. Previously, we used parental ...perspectives to define and build a conceptual model of COC provided by neonatologists. Nursing perspectives about COC remain unclear.
To describe nursing perspectives on neonatologist COC and revise our conceptual model with neonatal nurse input.
This was a qualitative study interviewing NICU nurses. The investigators analyzed transcripts with directed content analysis guided by an existing framework of neonatologist COC. Codes were categorized according to previously described COC components, impact on infants and families, and improvements for neonatologist COC. New codes were identified, including impact on nurses, and codes were classified into themes.
From 15 nurses, 5 themes emerged: (1) nurses validated parental definitions and benefits of COC; (2) communication is nurses' most valued component of COC; (3) neonatologist COC impact on nurses; (4) factors that modulate the delivery of and need for COC; (5) conflict between the need for COC and the need for change. Suggested improvement strategies included optimizing staffing and transition processes, utilizing clinical guidelines, and enhancing communication at all levels. Our adapted conceptual model describes variables associated with COC.
Interdisciplinary NICU teams need to develop systematic strategies tailored to their unit's and patients' needs that promote COC, focused to improve parent-clinician communication and among clinicians. Our conceptual model can help future investigators develop targeted interventions to improve COC.
When healthcare systems are overwhelmed, accurate assessments of patients' predicted mortality risks are needed to ensure effective allocation of scarce resources. Organ dysfunction scores can serve ...this essential role, but their evaluation in this context has been limited so far. In this study, we sought to assess the performance of three organ dysfunction scores in both critically ill adults and children at clinically relevant mortality thresholds and timeframes for resource allocation and compare it with two published prioritization schemas.
Retrospective observational cohort study.
Three large academic medical centers in the United States.
Critically ill adults and children.
None.
We calculated the daily Sequential Organ Failure Assessment score in adults and the Pediatric Logistic Organ Dysfunction 2 score and the Pediatric Sequential Organ Failure Assessment score in children. There were 49,290 (11.6% mortality) and 19,983 children (2.5% mortality) included in the analysis. Both the Sequential Organ Failure Assessment and Pediatric Sequential Organ Failure Assessment scores had adequate discrimination across relevant timeframes and adequate distribution across relevant mortality thresholds. Additionally, we found that the only published state prioritization schema that includes pediatric and adult patients had poor alignment of mortality risks, giving adults a systematic advantage over children.
In the largest analysis of organ dysfunction scores in a general population of critically ill adults and children to date, we found that both the Sequential Organ Failure Assessment and Pediatric Sequential Organ Failure Assessment scores had adequate performance across relevant mortality thresholds and timeframes for resource allocation. Published prioritization schemas that include both pediatric and adult patients may put children at a disadvantage. Furthermore, the distribution of patient and mortality risk in the published schemas may not adequately stratify patients for some high-stakes allocation decisions. This information may be useful to bioethicists, healthcare leaders, and policy makers who are developing resource allocation policies for critically ill patients.
Maternal‐fetal interventions—such as prenatal fetal myelomeningocele (MMC) repair—are at the forefront of clinical innovation within maternal‐fetal medicine, pediatric surgery, and neonatology. Many ...centers determine eligibility for innovative procedures using pre‐determined inclusion and exclusion criteria based on seminal studies, for example, the “Management of Myelomeningocele Study” for prenatal MMC repair. What if a person's clinical presentation does not conform to predetermined criteria for maternal‐fetal intervention? Does changing criteria on a case‐by‐case basis (i.e., ad hoc) constitute an innovation in practice and flexible personalized care or transgression of commonly held standards with potential negative consequences? We outline principle‐based, bioethically justified answers to these questions using fetal MMC repair as an example. We pay special attention to the historical origins of inclusion and exclusion criteria, risks and benefits to the pregnant person and the fetus, and team dynamics. We include recommendations for maternal‐fetal centers facing these questions.
Key points
What's already known about this topic?
Though trial‐based data form the basis of recommendations for maternal‐fetal interventions, other information and clinicians' views, both of which may be subject to multiple biases, are commonly incorporated.
What does this review add?
Ethical justification for including other information and clinicians' views when predetermined eligibility criteria exist for maternal‐fetal interventions.
Recommendations for how maternal‐fetal care centers should include processes for ad‐hoc exceptions and regular review of predetermined criteria for maternal‐fetal interventions to uphold the bioethical principles of maternal autonomy and nonmaleficence.
Background:
There is little information about providing pediatric palliative care (PPC) in non-metropolitan areas.
Objective:
Describe the strengths of and challenges to delivering PPC in ...non-metropolitan communities and identify opportunities to improve care delivery.
Design:
A qualitative study involving focus groups (FGs) with PPC stakeholders.
Setting/Participants:
From 4 non-metropolitan areas in Illinois, we recruited 3 stakeholder groups: healthcare providers (HPs); bereaved parents; and parents caring for a seriously ill child (SIC).
Measurements:
At each site, we held an FG with people of the same stakeholder group and then an FG involving all stakeholders. Discussion topics included: availability and strengths of local PPC services, barriers to local PPC, opportunities for improving local PPC access and quality, and clinician educational needs. We analyzed data using phenomenology and directed content analysis.
Results:
Thirty people, 12 parents and 18 HPs, participated in FGs. Identified themes related to: PPC perceptions; availability and use of local resources; and challenges associated with travel, care coordination, and finances. Participants described benefits of and limits to local PPC including pediatric-specific issues such as attending to siblings, creating child peer-support activities, providing school guidance, and financing for PPC. Recommendations included suggestions to enhance care coordination, use existing resources, improve community and provider education, develop community networks, and minimize financial challenges.
Conclusion:
Unique PPC challenges exist in non-metropolitan areas. PPC in non-metropolitan areas would benefit from enhancing local resource utilization and quality. Future work should address the challenges to providing PPC in non-metropolitan areas with a focus on pediatric-specific issues.
Continuity of care (COC) is highly regarded; however, data about benefits are mixed. Little is known about components, parental views, or the value COC may provide to neonatal intensive care unit ...(NICU) infants and families.
To describe parents' perspectives on definitions, reasons they value, and suggested improvements regarding COC provided by neonatologists.
We performed a qualitative study of in-person, semistructured interviews with parents of NICU infants hospitalized for 28 days or more. We analyzed interview transcripts using content analysis, identifying codes of parental experiences, expressed value, and improvement ideas related to neonatologist COC, and categorizing emerging themes.
Fifteen families (15 mothers and 2 fathers) described 4 themes about COC: (1) longitudinal neonatologists: gaining experience with infants and building relationships with parents over time; (2) background knowledge: knowing infants' clinical history and current condition; (3) care plans: establishing patient-centered goals and management plans; and (4) communication: demonstrating consistent communication and messaging. Parents described benefits of COC as decreasing knowledge gaps, advancing clinical progress, and decreasing parental stress. Suggested improvement strategies included optimizing staffing and sign-out/transition processes, utilizing clinical guidelines, and enhancing communication. Using parent input and existing literature, we developed a definition and conceptual framework of COC.
NICUs should promote practices that enhance COC. Parental suggestions can help direct improvement efforts.
Our COC definition and conceptual framework can guide development of research and quality improvement projects. Future studies should investigate nursing perspectives on NICU COC and the impact of COC on infant and family outcomes.
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