Continuous Neuromuscular Blockade for Bronchopulmonary Dysplasia.

OBJECTIVE: Bronchopulmonary dysplasia (BPD) is the most common late morbidity for premature infants. Continuous neuromuscular blockade (CNMB) is suggested for the most unstable phase of BPD, despite no outcome data. We explored the association between duration of CNMB for severe BPD and mortality. DESIGN: Medical record review of children <5 years old admitted from 2016 to 2022 with BPD and one or more course of CNMB for ≥14 days. RESULTS: Twelve children received a total of 20 episodes of CNMB for ≥14 days (range 14-173 d) during their hospitalization. Most (10/12) were born at <28 weeks' gestation and most (11/12) with birth weight <1,000 g; 7/12 were of Black race/ethnicity. All were hospitalized since birth. Most (10/12) were initially transferred from an outside neonatal intensive care unit (ICU), typically after a >60-day hospitalization (9/12). Half (6/12) of them had a ≥60-day stay in our neonatal ICU before transferring to our pediatric ICU for, generally, ≥90 days (8/12). The primary study outcome was survival to discharge: 2/12 survived. Both had shorter courses of CNMB (19 and 25 d); only one child who died had a course ≤25 days. Just two infants had increasing length Z-scores during hospitalization; only one infant had a final length Z-score > - 2. CONCLUSION: In this case series of infants with severe BPD, there were no survivors among those receiving ≥25 days of CNMB. Linear growth, an essential growth parameter for infants with BPD, decreased in most patients. These data do not support the use of ≥25 days of CNMB to prevent mortality in infants with severe BPD. KEY POINTS: · This is a case series of neuromuscular blockade for severe BPD.. · Neuromuscular blockade did not improve linear growth.. · Ten out of 12 infants who were on prolonged neuromuscular blockade died..

Home mechanical ventilation for children with severe neurological impairment: Parents' perspectives on clinician counselling.

AIM: To retrospectively explore the perspectives of parents of children with severe neurological impairment (SNI), such as those with severe cerebral palsy, epilepsy syndromes, and structural brain differences, on clinician counseling regarding home mechanical ventilation (HMV). METHOD: Inductive thematic analysis was performed on data from telephone interviews with parents who chose for and against HMV for their child with SNI at three academic children's hospitals across the USA. RESULTS: Twenty-six parents/legal guardians of 24 children were interviewed. Fourteen children had static encephalopathy, 11 received HMV, and 20 were alive at the time of parent interviews. Themes included how HMV related to the child's prognosis, risk of death, and integration with goals of care. Although clinicians voiced uncertainty about how HMV would impact their child, parents felt this was coupled with prescriptive/intimidating examples about the child's end of life and judgments about the child's quality of life. INTERPRETATION: While prognositc uncertainty exists, this study suggests that parents of children with SNI seek clinician counseling about HMV that considers their goals of care and views on their child's quality of life.

Costs of Neonatal Medical Complexity: Impact on New Parent Stress and Decision-Making.

OBJECTIVE: Parents of children with medical complexity experience substantial financial burdens. It is unclear how neonatal intensive care unit (NICU) clinicians prepare new parents of medically complex infants for this reality. This study explored new parent awareness of health care costs, desire to discuss costs with clinicians, and impact of costs on parents' medical decision-making. STUDY DESIGN: The study design comprised semistructured interviews and surveys of parents of infants with medical complexity currently or previously in a NICU. Conventional content analysis was performed on interview transcripts, and descriptive analyses were applied to surveys. RESULTS: Thematic saturation was reached with 27 families (15 NICU families and 12 post-NICU families) of diverse race/ethnicity/education/household income. Most were worried about their infants' current/future medical expenses and approximately half wanted to discuss finances with clinicians, only one parent had. While finances were not part of most parent's NICU decision-making, some later regretted this and wished cost had been incorporated into treatment choices. The family desire to discuss costs did not vary by family financial status. Parents described their infant's health care costs as: "We are drowning"; and "We'll never pay it off." CONCLUSION: Most parents were worried about current and future medical expenses related to their infant's evolving medical complexity. Many wanted to discuss costs with clinicians; almost none had. NICU clinicians should prepare families for the future financial realities of pediatric medical complexity. KEY POINTS: · Many families want to discuss costs with NICU clinicians.. · Some families want costs to be a part of medical decisions.. · Few families currently discuss costs with NICU providers..

Isolated and On Guard: Preparing Neonatal Intensive Care Unit Families for Life with Hydrocephalus.

OBJECTIVE: This study was aimed to characterize the parent experience of caring for a child with posthemorrhagic hydrocephalus and to describe parent preferences for counseling in the neonatal period and beyond. STUDY DESIGN: This was a qualitative interview study. Parents of infants born preterm with posthemorrhagic hydrocephalus completed semistructured interviews. Data were analyzed using a content analysis approach. RESULTS: Thematic saturation was reached on parent communication preferences after 10 interviews. Parent experiences of infant hydrocephalus broadly fell into two time periods, the neonatal intensive care unit (NICU) and after NICU discharge. The themes of uncertainty, isolation, hypervigilance, and the need for advocacy were common to each phase. CONCLUSION: Parents expressed interest in the development of tiered NICU counseling tools that would provide evidence-based and family-centric information to (1) initiate connections with community and peer resources and (2) combat the isolation and hypervigilance that characterized their family experience of living with hydrocephalus. KEY POINTS: · Infants with posthemorrhagic hydrocephalus are at risk for adverse neurodevelopmental outcomes.. · The parent experience of caring for a child with posthemorrhagic hydrocephalus is not well-described. In this interview study, parents described uncertainty, isolation, and hypervigilance.. · These findings call for structured NICU counseling and longitudinal family supports after discharge..

The Changing Landscape in Pediatric Hospitals: A Multicenter Study of How Pediatric Chronic Critical Illness Impacts NICU Throughput.

OBJECTIVE: Pediatric inpatient bed availability is increasingly constrained by the prolonged hospitalizations of children with medical complexity. The sickest of these patients are chronic critically ill and often have protracted intensive care unit (ICU) stays. Numbers and characteristics of infants with chronic critical illness are unclear, which undermines resource planning in ICU's and general pediatric wards. The goal of this study was to describe infants with chronic critical illness at six academic institutions in the United States. STUDY DESIGN: Infants admitted to six academic medical centers were screened for chronic, critical illness based on a combination of prolonged and repeated hospitalizations, use of medical technology, and chronic multiorgan involvement. Data regarding patient and hospitalization characteristics were collected. RESULTS: Just over one-third (34.8%) of pediatric inpatients across the six centers who met eligibility criteria for chronic critical illness were <12 months of age. Almost all these infants received medical technology (97.8%) and had multiorgan involvement (94.8%). Eighty-six percent (115/134) had spent time in an ICU during the current hospitalization; 31% were currently in a neonatal ICU, 34% in a pediatric ICU, and 17% in a cardiac ICU. Among infants who had been previously discharged home (n = 55), most had been discharged with medical technology (78.2%) and nearly all were still using that technology during the current readmission. Additional technologies were commonly added during the current hospitalization. CONCLUSION: Advanced strategies are needed to plan for hospital resource allocation for infants with chronic critical illness. These infants' prolonged hospitalizations begin in the neonatal ICU but often transition to other ICUs and general inpatient wards. They are commonly discharged with medical technology which is rarely weaned but often escalated during subsequent hospitalizations. Identification and tracking of these infants, beginning in the neonatal ICU, will help hospitals anticipate and strategize for inpatient bed management. KEY POINTS: · 35% of inpatients with chronic critical illness are infants.. · Nearly 90% of these infants spend some time in an intensive care unit.. · 78% are discharged with medical technology..

Family Experiences Deciding For and Against Pediatric Home Ventilation.

OBJECTIVE: To understand what considerations drive family decisions for, and against, pediatric home ventilation. STUDY DESIGN: Qualitative interviews with parents of children who faced a decision about home ventilation in the previous 5 years at 3 geographically dispersed institutions. RESULTS: In total, 38 families (42 parents) were interviewed; 20 families opted for pediatric home ventilation, and 18 families opted against. Approximately one-quarter of children had isolated chronic lung disease; the remainder had medical complexity that was expected to remain static or decline. Parent perspectives about home ventilation generally reflected whether the child was early, or later, in their disease trajectory. Early on, parents often interpreted prognostic uncertainty as hope and saw home ventilation as a tool permitting time for improvement. For families of children later in their disease course, often already with home technology and home nursing, home ventilation held less possibility for meaningful improvement. Nearly all families experienced the decision as very emotionally distressing. Reflecting back, most families described feeling satisfied with whatever decision they made. CONCLUSIONS: The 2 principal groups of families in our cohort-those with children whose respiratory insufficiency might improve, and those with children facing chronic decline-warrant targeted counseling approaches about initiating home ventilation. The distressing nature of this decision should be anticipated and family supports reinforced.

Paying for Pediatric Home Health Care: How Families of Children With Medical Complexity Navigate Gaps in Coverage.

Limited private and public financing of home health care for children with medical complexity can have harmful and costly consequences. Little is known of how parents and professionals in the United States navigate coverage for these services or how payer restrictions are shaping service quality. Qualitative interviews were conducted with families and professionals (eg, prescribers, providers, administrators of pediatric home health care [PHHC]) caring for children with medical complexity. Interview transcripts were analyzed using inductive thematic analysis. In total, 47 families and 45 professionals from across 31 states and the District of Columbia had experiences with the full range of PHHC services. Participants detailed the need to patch together multiple insurances and payment programs to cover a child's home health needs. They described nontransparent eligibility determinations that do not reflect the diagnostic uncertainty and static functional status that is common for many children. Coverage denials are common, leaving gaps in care that can potentiate downstream cost escalation. Evidence-based health care reform must ensure that children get the PHHC needed to maintain function and reduce the need for hospital-based services. Recommendations are offered to improve PHHC financing and care for the most medically vulnerable children and their families.

Ethical considerations for cardiac surgical interventions in children with trisomy 13 and trisomy 18.

Medical and surgical approaches to children with trisomy 13 and 18 are evolving, and an increasing number of patients are being considered for simple and complex cardiac procedures. This review describes how the shifts in medical and social considerations for children with trisomy 13 and 18 mirror the shifts that occurred 50 years ago for children with trisomy 21. Yet the variability in cardiac lesions, and variability in non-cardiac comorbidities, is much greater for patients with trisomy 13 and 18 than for those with trisomy 21. That variability, combined with the severe neurologic impairment in survivors, complicates the current risk: benefit balance of surgical intervention. Consistent approaches to care for these patients should be built on an evidence base, and should include contributions from specialists in medical ethics and palliative care.

Parent preferences for neurodevelopmental screening in the neonatal intensive care unit.

AIM: To determine whether, and how, neonatal intensive care unit (NICU) parents want to receive early neurodevelopmental screening information about their child's future risk of cerebral palsy and other disabilities. METHOD: This was a qualitative interview study. Parents of hospitalized infants born preterm completed semi-structured interviews. Data were analysed using a directed content analysis approach. RESULTS: Thematic saturation was achieved after 19 interviews. Four themes characterized parent perceptions of early neurodevelopmental screening: (1) acceptability: most parents were in favour of neurodevelopmental screening if parents could refuse; (2) disclosure of results: parents want emotional preparation for results, especially false positives; (3) emotional burden of uncertainty: parents of children in the NICU balance taking their infant's illness 'day by day' and preparing for an uncertain future. Parents expressed distress with screening that increased uncertainty about the future; and (4) disability: prior experience with disability informs parent concerns. INTERPRETATION: Parents interpret the risks and benefits of NICU developmental screening through the lens of prior experiences with disability. Most expressed interest in screening and emphasized a desire for autonomy, pretest counselling, and emotional preparation. WHAT THIS PAPER ADDS: Most parents with infants in the neonatal intensive care unit expressed interest in early screening for developmental disability. Prior experience with disability informed concerns about specific deficits. Parents emphasized a desire for autonomy, pretest counselling, and emotional preparation.

Our life at home: Photos from families inform discharge planning for medically complex children.

BACKGROUND: Infants with medical complexity are increasingly cared for at home, creating unique challenges for their caregivers. The sickest of these are those with chronic critical illness (CCI). These infants' medical fragility and resource-intensive needs puts them at increased risk for suboptimal transitions from hospital- to home-based care. It is unclear whether, and if so, to what extent clinicians gather and use knowledge of a family's home context during discharge planning. METHODS: This study is a pilot of a novel program, using Photovoice methodology, which aims to record and reflect the experience of caring for a child with CCI at home from caregivers' perspectives and to provide direct feedback to inpatient discharging clinicians, with the goal of increasing awareness of (a) the importance of home context and (b) current discharge limitations. RESULTS: Through photographs, parents described the importance of developing new routines, learning how to be a family, the impact of medical technology on nearly all aspects of everyday life, the critical role played by clinicians during the transition home, and feelings of social stigma and isolation. Clinicians, in turn, learned about gaps in discharge planning and the value of making families part of the decision-making team. They also found meaning in seeing the children they had cared for doing well at home, which subsequently bolstered enthusiasm for their job. CONCLUSIONS: Findings from this pilot study highlight the importance of understanding the lived experience of families caring for medically complex children at home and suggest that this knowledge can be used to address gaps in the transition home.

Diagnosis to death: family experiences of paediatric heart disease.

CHD remains one of the leading causes of mortality of children in the United States. There is limited research about the experience of parents from the diagnosis of their child with CHD through the death of their child. A prior study has shown that adults with heart failure go through a series of four transitions: 1) learning the diagnosis, 2) reframing the new normal, 3) taking control of the illness, and 4) understanding death is inevitable. In our qualitative study, we performed semi-structured interviews with parents who have a child die of CHD to determine whether the four transitions in adults apply to parents of children with CHD. We found that these four transitions were present in the parents we interviewed and that there were two novel transitions, one that proceeded the first Jones et al transition ("Prenatal diagnosis") and one that occurred after the final Jones et al transition ("Adjustment after death"). It is our hope that identification of these six transitions will help better support families of children with CHD.

Living in the Hospital: The Vulnerability of Children with Chronic Critical Illness.

The number of children with chronic critical illness (CCI) is a growing population in the United States. A defining characteristic of this population is a prolonged hospital stay. Our study assessed the proportion of pediatric patients with chronic critical illness in U.S. hospitals at a specific point in time, and identified a subset of children whose hospital stay lasted for months to years. The potential harms of a prolonged hospitalization for children with CCI, which include over treatment, infection, disruption of family life, and the intensive utilization of resources-combined with the moral distress experienced by the clinicians who care for the children, suggest the need for ethical analysis of this growing issue to identify actions that could be taken at the clinical and health systems levels to reduce the harms associated with prolonged hospital stay. In this article we present three real cases from our study that involved a very long hospital stay. We applied a framework developed by Mackenzie, Rogers, and Dodds to analyze inherent, situational, and pathogenic vulnerabilities to examine the ways that interventions intended to remedy one source of harm for the children in our cohort inadvertently created other harms. We examined the complex ways that children with protracted hospitalization are vulnerable to the choices made by their family and clinicians, as well as by healthcare systems and communities. Finally, we used this analysis to summarize actions and ethical responses to this growing patient population. Such an understanding is essential to make clinical and ethical decisions that arise for children who are at risk for a very long stay in the hospital.

Pediatric Chronic Critical Illness: Gaps in Inpatient Intrateam Communication.

OBJECTIVES: The number of children with medical complexity and prolonged hospitalizations is rising. Strategies to adapt acute care approaches for this population are falling behind clinical demand. This study aimed to identify how inpatient team communication practices match the needs of teams caring for these patients and families, and to identify priority areas for improvement. DESIGN: Cross-sectional mixed methods survey. SETTING: Academic children's hospital. SUBJECTS: Interdisciplinary healthcare professionals: physicians, nurse practitioners, nurses, resident and fellow trainees, respiratory therapists, clinical pharmacists, occupational therapists, physical therapists, social workers, and child life specialists. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Four-hundred eight interdisciplinary healthcare professionals participated (33% response rate). Half (53%) worked in ICUs and 37% had greater than 10 years clinical experience. Three overarching themes emerged regarding communication during care of children with prolonged hospitalizations are as follows: 1) Dysfunctional team collaboration: the many involved healthcare providers for these children have inconsistent team meetings and few platforms for reaching clinical consensus; 2) Continuity gaps: time-limited clinician rotations and no designated longitudinal clinical leaders undermine relationships with families and key elements of shared decision-making; and 3) Inadequate communication skills and tools: healthcare professionals have inadequate training to address complex conversations and big picture concerns, and often default to daily management conversations. Nearly half (40%) perceived intra-team conflict to occur more commonly during care of these children compared with those with short hospitalizations, and many feel unskilled to address these conflicts. Healthcare providers working in ICUs were more likely than other healthcare providers to find care of children with chronic critical illness stressful "most of the time" (ICU 46%; 60/131 vs non-ICU 25%; 21/84; p = 0.02). CONCLUSIONS: Acute care inpatient communication practices require modification to meet the needs of healthcare professionals who provide longitudinal care to children with repeated and prolonged hospitalizations. Improvement strategies should prioritize building collaboration, continuity, and communication skills among healthcare professionals.

Communication and decision-making regarding children with critical cardiac disease: a systematic review of family preferences.

Critical heart disease in the pediatric population is associated with high morbidity and mortality. Research around the most effective communication and decision-making strategies is lacking. This systematic review aims to summarise what is known about parent preference for communication and decision-making in children with critical heart disease. Database searches included key words such as family, pediatric heart disease, communication, and decision-making. A total of 10 studies fit our inclusion criteria: nine were qualitative studies with parent interviews and one study was quantitative with a parent survey. We found three main themes regarding physician-parent communication and decision-making in the context of paediatric heart disease: (1) amount, timing, and content of information provided to parents; (2) helpful physician characteristics and communication styles; and (3) reinforcing the support circle for families.

Medically Complex Children in Foster Care: Do Research "Protections" Make This "Vulnerable Population" More Vulnerable?

Children in foster care are considered a "vulnerable population" in clinical care and research, with good reason. These children face multiple medical, psychological, and social risks that obligate the child welfare and healthcare systems to protect them from further harms. An unintended consequence of the "vulnerable population" designation for children in foster care is that it may impose barriers on tracking and studying their health that creates gaps in knowledge that are key to their receipt of medical care and good outcomes. These gaps in knowledge have implications for justice, beneficence, and maleficence and serve to undermine "protection" of this population. Here we review the challenges of research regarding children in foster care, particularly medically complex children, and offer specific recommendations to include children in foster care in medical research.

Professional Responsibility, Consensus, and Conflict: A Survey of Physician Decisions for the Chronically Critically Ill in Neonatal and Pediatric Intensive Care Units.

OBJECTIVE: To describe neonatologist and pediatric intensivist attitudes and practices relevant to high-stakes decisions for children with chronic critical illness, with particular attention to physician perception of professional duty to seek treatment team consensus and to disclose team conflict. DESIGN: Self-administered online survey. SETTING: U.S. neonatal ICUs and PICUs. SUBJECTS: Neonatologists and pediatric intensivists. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: We received 652 responses (333 neonatologists, denominator unknown; 319 of 1,290 pediatric intensivists). When asked about guiding a decision for tracheostomy in a chronically critically ill infant, only 41.7% of physicians indicated professional responsibility to seek a consensus decision, but 73.3% reported, in practice, that they would seek consensus and make a consensus-based recommendation; the second most common practice (15.5%) was to defer to families without making recommendations. When presented with conflict among the treatment team, 63% of physicians indicated a responsibility to be transparent about the decision-making process and reported matching practices. Neonatologists more frequently reported a responsibility to give decision making fully over to families; intensivists were more likely to seek out consensus among the treatment team. CONCLUSIONS: ICU physicians do not agree about their responsibilities when approaching difficult decisions for chronically critically ill children. Although most physicians feel a professional responsibility to provide personal recommendations or defer to families, most physicians report offering consensus recommendations. Nearly all physicians embrace a sense of responsibility to disclose disagreement to families. More research is needed to understand physician responsibilities for making recommendations in the care of chronically critically ill children.

"Stuck in the ICU": Caring for Children With Chronic Critical Illness.

OBJECTIVE: Neonatal ICUs and PICUs increasingly admit patients with chronic critical illness: children whose medical complexity leads to recurrent and prolonged ICU hospitalizations. We interviewed participants who routinely care for children with chronic critical illness to describe their experiences with ICU care for pediatric chronic critical illness. DESIGN: Semi-structured interviews. Interviews were transcribed and analyzed for themes. SETTING: Stakeholders came from five regions (Seattle, WA; Houston, TX; Jackson, MS; Baltimore, MD; and Philadelphia, PA). SUBJECTS: Fifty-one stakeholders including: 1) interdisciplinary providers (inpatient, outpatient, home care, foster care) with extensive chronic critical illness experience; or 2) parents of children with chronic critical illness. INTERVENTIONS: Telephone or in-person interviews. MEASUREMENTS AND MAIN RESULTS: Stakeholders identified several key issues and several themes emerged after qualitative analysis. Issues around chronic critical illness patient factors noted that patients are often relocated to the ICU because of their medical needs. During extended ICU stays, these children require longitudinal relationships and developmental stimulation that outstrip ICU capabilities. Family factors can affect care as prolonged ICU experience leads some to disengage from decision-making. Clinician factors noted that parents of children with chronic critical illness are often experts about their child's disease, shifting the typical ICU clinician-parent relationship. Comprehensive care for children with chronic critical illness can become secondary to needs of acutely ill patients. Lastly, with regard to system factors, stakeholders agreed that achieving consistent ICU care goals is difficult for chronic critical illness patients. CONCLUSIONS: ICU care is poorly adapted to pediatric chronic critical illness. Patient, family, clinician, and system factors highlight opportunities for targeted interventions toward improvement in care.

"I don't know what I was expecting": Home visits by neonatology fellows for infants discharged from the NICU.

BACKGROUND: When families transition from the neonatal intensive care unit (NICU) to the home, they become responsible for their infant's daily medical needs. Though neonatology physicians prepare families for hospital discharge, it is unclear how much clinicians understand about how their teaching and instructions translate into home care. The goal of this study was to evaluate the influence of a home visiting program on neonatology fellows' understanding of family needs soon after hospital discharge. METHODS: Neonatology fellows conducted a home visit for an infant recently discharged. Before the visit, fellows reviewed their original discharge instructions, along with information about the family's neighborhood. During the home visit, fellows reviewed their discharge planning with families and discussed any challenges experienced. Afterwards, fellows completed a semi-structured interview; these transcriptions were manually coded for themes. RESULTS: Fellows identified several common women/family discharge challenges. These challenges fall into four domains: (1) inadequate discharge preparation, (2) medicalization of the home, (3) family adjustment to new "normal," and (4) the relevance of social context to discharge planning. Most (90%) fellows reported the home visit experience would affect their future NICU discharge practices and all agreed that home visits should be a part of neonatology training. CONCLUSIONS: Home visits allowed neonatology fellows to examine how their discharge preparation did, or did not, meet the family's needs. Incorporating home visits into neonatology training could help fellows learn about the relevance of social and community factors that are difficult to assess in the inpatient setting.

Red flags: a case series of clinician-family communication challenges in the context of CHD.

We describe three cases of newborns with complex CHD characterised by communication challenges. These communication challenges were categorised as patient, family, or system-related red flags. Strategies for addressing these red flags were proposed, for the goal of optimising care and improving quality of life in this vulnerable population.

Medical foster care: what happens when children with medical complexity cannot be cared for by their families?

Medical interventions for life-threatening pediatric conditions often oblige ongoing and complex medical care for survivors. For some children with medical complexity, their caretaking needs outstrip their parents' resources and abilities. When this occurs, the medical foster care system can provide the necessary health care and supervision to permit these children to live outside of hospitals. However, foster children with medical complexity experience extremes of social and medical risk, confounding their prognosis and quality of life beyond that of similar children living with biologic parents. Medical foster parents report inadequate training and preparation, perpetuating these health risks. Further, critical decisions that weigh the benefits and burdens of medical interventions for these children must accommodate complicated relationships involving foster families, caseworkers, biologic families, legal consultants, and clinicians. These variables can delay and undermine coordinated and comprehensive care. To rectify these issues, medical homes and written care plans can promote collaboration between providers, families, and agencies. Pediatricians should receive specialized training to meet the unique needs of this population. National policy and research agendas could target medical and social interventions to reduce the need for medical foster care for children with medical complexity, and to improve its quality for those children who do.