Motivations for and against Participation in Neonatal Research: Insights from Interviews of Diverse Parents Approached for Neonatal Research in the US.

OBJECTIVE: To describe parents' motivations for and against participation in neonatal research, including the views of those who declined participation. STUDY DESIGN: We performed 44 semi-structured, qualitative interviews of parents approached for neonatal research. Here we describe their motivations for and against participation. RESULTS: Altruism was an important reason parents chose to participate. Some hoped participation in research would benefit their infant. Burdens of participation to the family, such as transportation to follow up (distinct from risks/burdens to the infant), were often deciding factors among those who declined participation. Perceived risks to the infant were reasons against participation, but parents often did not differentiate between baseline risks and incremental risk of study participation. Concerns regarding their infant being treated like a "guinea pig" were common among those who declined. Finally, historical abuses and institutional racism were reported as important concerns by some research decliners from minoritized populations. CONCLUSIONS: Within a diverse sample of parents approached to enroll their infant in neonatal research, motivations for and against participation emerged, which may be targets of future interventions. These motivations included reasons for participation which we may hope to encourage, such as altruism. They also included reasons against participation, which we may hope to, as feasible, eliminate, mitigate, or at least acknowledge. These findings can help clinical trialists, regulators, and funders attempting to improve neonatal research recruitment processes.

Family perspectives on provider conversations about housing needs for children with medical complexity.

BACKGROUND: Children with medical complexity (CMC) have unique, and often unmet, housing needs that place them at risk for housing insecurity and poor health outcomes. Yet, little is known about how families with CMC discuss their housing needs with healthcare providers. We sought to understand: (1) how housing is currently discussed between CMC caregivers and healthcare providers, and (2) how CMC caregivers want such conversations to occur. METHODS: From August to November 2020, we conducted semi-structured interviews with parents/guardians of CMC (<26 years old) in Maryland as part of a larger study to understand their housing experience. Four questions on communication with providers about housing were developed a priori and included in this analysis. Qualitative content analysis was applied to interview transcripts. RESULTS: Among 31 completed interviews, most participants were female (90%), lived in single-family homes (68%) and were from a mix of neighbourhood types (urban 19%, suburban 58%, rural 22%). Their children ranged in age from 6 months to 22 years, had a mix of insurance types (public 65%, private 29%, both 6%) and nearly all required medical equipment or technology. Four themes emerged: (1) Current housing conversations are rare and superficial, (2) Ideal housing conversations would result in thoughtful care plans and concrete supports, (3) Frequency and initiation of housing conversations are best tailored to family preferences and (4) Value of housing conversations are limited by lack of provider knowledge and time. CONCLUSIONS: Conversations about housing needs for CMC happen in limited ways with healthcare providers, despite a desire on the part of their caregivers. Such conversations can give meaningful insights into the family's specific housing challenges, allowing providers to appropriately tailor care plans and referrals. Future work is needed to capture provider perspectives, design CMC-specific housing screeners and develop interdisciplinary referral strategies.

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..

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.

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.

Risks of preterm birth among non-Hispanic black and non-Hispanic white women: Effect modification by maternal age.

BACKGROUND: Preterm birth (PTB) disproportionately affects African American compared with Caucasian women, although reasons for this disparity remain unclear. Some suggest that a differential effect of maternal age by race/ethnicity, especially at older maternal ages, may explain disparities. OBJECTIVE: To determine whether the relationship between maternal age and preterm birth varies by race/ethnicity among primiparae non-Hispanic blacks (NHB) and non-Hispanic whites (NHW). METHODS: A cross-sectional study of 367 081 singleton liveborn first births to NHB and NHW women in California from 2008 to 2012 was conducted. Rate ratios (RR) were estimated for PTB and its subtypes-spontaneous and clinician-initiated-after adjusting for confounders through Poisson regression. Universal age/race reference groups (NHW, 25-29 years) and race-specific reference groups (NHW or NHB, 25-29 years) were used for comparisons. RESULTS: Among all women, RR of PTB was highest at the extremes of age (<15 and ≥40 years). Among NHBs, the risk of PTB was higher than among NHWs at all maternal ages (adjusted RR of PTB 1.38-2.93 vs 0.98-2.38). However, using race-specific reference groups, the risk of PTB for NHB women (RR 0.91-1.88) vs NHW women (RR 0.98-2.39) was nearly identical at all maternal ages, with overlapping confidence intervals. Analyses did not demonstrate substantial divergence of risk with advancing maternal age. PTB, spontaneous PTB, and clinician-initiated PTB demonstrated similar risk patterns at younger but not older maternal ages, where risk of clinician-initiated PTB increased sharply for all women. CONCLUSIONS: Primiparae NHBs demonstrated increased risk of PTB, spontaneous PTB, and clinician-initiated PTB compared with NHWs at all maternal ages. However, RRs using race-specific reference groups converged across maternal ages, indicating a similar independent effect of maternal age on PTB by race/ethnicity. A differential effect of maternal age does not appear to explain disparities in preterm birth by race/ethnicity.

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.

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.

Family Conferences in the Neonatal ICU: Observation of Communication Dynamics and Contributions.

OBJECTIVES: Clinicians in the neonatal ICU must engage in clear and compassionate communication with families. Empirical, observational studies of neonatal ICU family conferences are needed to develop counseling best practices and to train clinicians in key communication skills. We devised a pilot study to record and analyze how interdisciplinary neonatal ICU clinicians and parents navigate difficult conversations during neonatal ICU family conferences. DESIGN: We prospectively identified and audiotaped a convenience sample of neonatal ICU family conferences about "difficult news." Conversations were analyzed using the Roter interaction analysis system, a quantitative tool for assessing content and quality of patient-provider communication. SETTING: An urban academic children's medical center with a 45-bed level IV neonatal ICU. SUBJECTS: Neonatal ICU parents and clinicians. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: We analyzed 19 family conferences that included 31 family members and 23 clinicians. The child's mother was included in all conferences, and a second parent, usually the father, was present in 13 conferences. All but one conference included multiple medical team members. On average, physicians contributed 65% of all dialogue, regardless of who else was present. Over half (56%) of this dialogue involved giving medical information; under 5% of clinician dialogue involved asking questions of the family, and families rarely (5% of dialogue) asked questions. Conversations were longer with the presence of nonphysician clinicians, but this did not increase the amount of dialogue about psychosocial information or increase parent dialogue. CONCLUSIONS: We collected a novel repository of audio-recorded neonatal ICU family meetings that offers insights into discussion content and process. These meetings were heavily focused on biomedical information even when interdisciplinary clinicians were present. Clinicians always talked more than parents, and no one asked many questions. Maximizing the participation of interdisciplinary clinicians in neonatal ICU family meetings may require explicit strategies. Methods to increase family engagement should be targeted.

Novel legislation for pediatric advance directives: surveys and focus groups capture parent and clinician perspectives.

BACKGROUND: Legislative measures increasingly require consideration of pediatric inpatients for Medical Orders for Life-Sustaining Treatment. AIM: To explore pediatric clinicians' experiences with life-sustaining treatments prior to the Medical Orders for Life-Sustaining Treatment mandate and to describe clinician and family concerns and preferences regarding pediatric Medical Orders for Life-Sustaining Treatment. DESIGN: Clinician surveys and clinician and parent focus groups. SETTING/PARTICIPANTS: Pediatric clinicians and parents from one of Maryland's largest health systems. RESULTS: Of 96 survey respondents, 72% were physicians and 28% were nurse practitioners. A total of 73% of physicians and 34% of nurse practitioners felt able to lead discussions about limiting therapies "most" or "all" of the time. A total of 75% of physicians and 37% of nurse practitioners led such a discussion in the prior year. A total of 55% of physicians and 96% of nurse practitioners had written no order to limit therapies in the past year. Only for children predicted to die within 30 days did >80% of clinicians agree that limitation discussions were warranted. A total of 100% of parent focus group participants, but 17% of physicians and 33% of nurse practitioners, thought that all pediatric inpatients warranted Medical Orders for Life-Sustaining Treatment discussions. Parents felt that universal Medical Orders for Life-Sustaining Treatment would decrease the stigma of limitation discussions. Participants believed that Medical Orders for Life-Sustaining Treatment would clarify decision making and increase utilization of palliative care. Medical Orders for Life-Sustaining Treatment communication skills training was recommended by all. CONCLUSION: A minority of clinicians, but all parents, support universal pediatric Medical Orders for Life-Sustaining Treatment. Immediately prior to the Medical Orders for Life-Sustaining Treatment mandate, many clinicians felt unprepared to lead limitation discussions, and few had written relevant orders in the prior year. Communication training is perceived essential to successful Medical Orders for Life-Sustaining Treatment conversations.

Newborn screening for X-linked adrenoleukodystrophy: further evidence high throughput screening is feasible.

X-linked adrenoleukodystrophy (ALD) is characterized by adrenal insufficiency and neurologic involvement with onset at variable ages. Plasma very long chain fatty acids are elevated in ALD; even in asymptomatic patients. We demonstrated previously that liquid chromatography tandem mass spectrometry measuring C26:0 lysophosphatidylcholine reliably identifies affected males. We prospectively applied this method to 4689 newborn blood spot samples; no false positives were observed. We show that high throughput neonatal screening for ALD is methodologically feasible.

A Snapshot of Chronic Critical Illness in Pediatric Intensive Care Units.

Children with chronic critical illness (CCI) represent the sickest subgroup of children with medical complexity. In this article, we applied a proposed definition of pediatric CCI to assess point prevalence in medical, cardiovascular, and combined pediatric intensive care units (PICUs), screening all patients admitted to six academic medical centers in the United States on May 17, 2017, for pediatric CCI (PCCI) eligibility. We gathered descriptive data to understand medical complexity and resource needs of children with PCCI in PICUs including data regarding hospitalization characteristics, previous admissions, medical technology, and chronic multiorgan dysfunction. Descriptive statistics were used to characterize the study population and hospital data. The study cohort was divided between PICU-prolonged (stay > 14 days) and PICU-exposed (any time in PICU); comparative analyses were conducted. On the study day, 185 children met inclusion criteria, 66 (36%) PICU-prolonged and 119 (64%) PICU-exposed. Nearly all had home medical technology and most ( n = 152; 82%) required mechanical ventilation in the PICU. The PICU-exposed cohort mirrored the PICU-prolonged with a few exceptions as follows: they were older, had fewer procedures and surgeries, and had more recurrent hospitalizations. Most ( n = 44; 66%) of the PICU-prolonged cohort had never been discharged home. Children with PCCI were a sizable proportion of the unit census on the study day. We found that children with PCCI are a prevalent population in PICUs. Dividing the cohorts between PICU-prolonged and PICU-exposed helps to better understand the care needs of the PCCI population. Identifying and studying PCCI, including variables relevant to PICU-prolonged and PICU-exposed, could inform changes to PICU care models and training programs to better enable PICUs to meet their unique needs.

Experiences and preferences for learning about neonatal research: insights from parent interviews.

INTRODUCTION: Parents struggle with being asked to participate in neonatal research. Past work has largely failed to include views of minoritized parents, low-socioeconomic status parents, and those who declined research. We aimed to describe parents' preferences related to learning about eligibility for neonatal research. METHODS: Qualitative interviews of parents who were asked to enroll their infant in neonatal research. Themes related to parental experiences and preferences for learning about neonatal research were identified using content analysis. RESULTS: Many parents desired greater involvement of their clinical team. Emotions at the time of recruitment were critically important to parents' experience, where were deeply impacted by interpersonal relationships with research staff. DISCUSSION: Increased involvement of the clinical team and greater sensitivity to the stressors around parent and infant conditions at the time of recruitment for neonatal research should be considered by those attempting to improve recruitment for neonatal research.

Caring for Hospitalized Children in Foster Care: Provider Training, Preparedness, and Practice.

BACKGROUND AND OBJECTIVES: Children and youth in foster care (CYFC) have high rates of health care utilization, including inpatient care. The objective of this study was to explore the inpatient provider experience caring for CYFC. METHODS: Semistructured interviews were conducted with inpatient pediatric providers from Mid-Atlantic hospitals. Interview questions focused on 3 domains: provider training and preparedness, practice challenges, and strategies to improve care for CYFC. Conventional content analysis was applied to interview transcripts. RESULTS: Thirty-eight interviews were completed with providers from 6 hospitals, including 14 hospitalists, 1 advanced practice provider, 11 registered nurses, 10 social workers (SWs), and 2 case managers. Nearly all (90%) reported at least monthly interactions with CYFC. Themes related to training and preparedness to care for CYFC included: medical providers' lack of formal training, limited foster care knowledge, and feeling of preparedness contingent on access to SWs. Themes related to unique practice challenges included: identifying CYFC, obtaining consent, documenting foster care status, complex team communication, and navigating interpersonal stress. Participants' suggestions for improving their ability to care for CYFC included increasing SW capacity, expanding provider training, standardizing electronic medical record documentation and order sets, and improving team communication and information sharing. CONCLUSIONS: There are unique medical, social, and legal aspects of caring for hospitalized CYFC; pediatric medical providers receive limited training on these topics and rely heavily on SWs to navigate associated practice challenges. Targeted educational and health information technology interventions are needed to help inpatient providers feel better prepared to effectively meet the needs of CYFC.

The impact of wealth on the cognitive development of children who were preterm infants.

PURPOSE: : The purpose of this study was to explore the influence wealth has on cognitive development in 2-year-old children who were born preterm, and to determine whether racial/ethnic differences in wealth explained disparities in cognitive development. SUBJECTS: : A nationally representative sample of 1400 children who were born between 22 and 36 weeks' gestation. DESIGN: : Cohort study. METHODS: : Secondary data analysis of the Early Childhood Longitudinal Survey-Birth Cohort (ECLS-B). The ECLS-B was a prospective national longitudinal study of infants born in the United States during the calendar year 2001 drawn from birth certificates in the United States. MAIN OUTCOMES: : The impact wealth (parental homeownership and investments) had on cognitive development at 2 years and whether wealth eliminated the cognitive disparity seen between white, African American, and Hispanic children. PRINCIPAL RESULTS: : Wealth (homeownership and investments) did not have an independent effect on cognitive development, but it did eliminate the disparity between white children and African American children (P ≥ .05). However, wealth did not eliminate the disparity in cognitive development between white children and Hispanic children. Hispanic children scored 3.91 points lower than white children (P ≤ .001). CONCLUSION: : In contrast to other follow-up studies showing persistent differences in cognitive development between white children and African American children, this study found that wealth indicators attenuated the difference. Wealth may be a more accurate proxy for socioeconomic status in studying factors influencing cognitive outcomes in children born preterm than just using measures such as maternal education and income. In future follow-up studies of multiracial preterm children, indicators that represent wealth should be included for an accurate representation of social economic status.

Delays in Hospital Discharge for Children in Foster Care: Reasons and Recommendations From a Multisite Study.

OBJECTIVE: To elucidate challenges to timely hospital discharge of children in foster care (CFC). METHODS: Inpatient providers with prior experience caring for CFC were recruited from 6 mid-Atlantic hospitals. Semi-structured interviews were conducted to explore provider experience discharging CFC. Conventional content analysis was applied to interview transcripts with Dedoose software. RESULTS: Interviews were completed with 15 MDs/NPs, 11 RNs, 10 social workers, and 2 case managers. Participants explained that delayed discharge is the norm for CFC, especially for those entering new foster care placements. Participants detailed challenges to efficiently discharging CFC, which were categorized into 3 themes: 1) Waiting for discharge disposition: Providers' ability to proceed with discharge planning is contingent on procedural steps (eg, court decisions) needed to determine disposition (eg, entering new foster care placement); 2) Medically cleared, but no place to go: Participants report placement searches are often not initiated by child welfare until the child is medically cleared. Lack of available, appropriate foster care placements delays discharge, particularly for children with complex medical or behavioral diagnoses; 3) Coordinating for a safe discharge: Establishing a safe discharge for CFC involves meticulous discharge planning, foster parent training, and multidisciplinary team communication/coordination. CONCLUSION: Delayed discharge for CFC is multifactorial, yet often predictable. There are modifiable factors identified that can be addressed to promote timely hospital discharge and prevent medically unnecessary hospital days, benefitting patients in foster care and the hospital system.