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.

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.

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.

Family challenges in personal transportation of children with medical complexity.

PURPOSE: This study aimed to explore the family experience and associated challenges of transporting children with medical complexity (CMC) in personal vehicles. METHODS: Parents/guardians of CMC in Maryland were recruited to participate in an audiotaped, semi-structured interview. Conventional content analysis was applied to transcripts. RESULTS: Data from 29 participants who indicated use of personal vehicles to transport their CMC were included in the analysis. Transportation challenges were common, and analysis revealed the following themes: 1) challenges transitioning in/out of the vehicle: excess planning time, child factors (e.g., weight), equipment factors (e.g., wheelchair), physical and environmental factors, 2) safety and comfort: CMC positioning/restraints, driver distraction, 3) financial challenges: travel costs related to medical care, accessible modification costs, transportation equipment costs, insurance delays in equipment coverage, 4) adverse family repercussions: parental physical health, isolation, and 5) evolving and unpredictable transportation needs. CONCLUSION: Families with CMC experience multifactorial challenges that impact all phases of travel in personal vehicles and negatively impact child and family safety, access to community and medical care, family finances, and overall well-being. Health care providers can support families by identifying transportation challenges that contribute to health inequities, tailoring solutions to the family's unique needs, and advocating at a policy level to promote change.

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.

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..

Developing an audio-based communication tool for NICU discharge of Latino families with limited English proficiency.

OBJECTIVE: Research shows NICU Latino parents with limited English proficiency (LEP) feel less comfortable asking questions and participating in medical decision-making, which may negatively affect transition to community healthcare. Question prompt lists (QPL), suggested questions sometimes drawn from families and providers, can improve family-centered communication. We explored clinician and parent perceptions to inform development of and pilot a NICU discharge QPL. METHODS: Focus groups with NICU and primary care providers explored perceived educational needs of Latino parents LEP and barriers to effective transition to community healthcare. Semi-structured interviews with Latino parents LEP explored perceptions of knowledge gaps and recommendations to improve the transition process. A Spanish audio QPL for parents and an English written version for providers were developed and pilot tested for acceptability. RESULTS: Provider focus groups (n = 27) and parent interviews (n = 19) identified themes: decreased parent activation, knowledge gaps, limited-use interpreters, unfamiliarity with healthcare system, and social isolation as barriers to smooth NICU-to-home transition. Providers (n = 11) and parents (n = 10) favored QPL introduction early in NICU admission, finding it useful to improve communication and transition processes for families. CONCLUSION: Our QPL may address challenges faced by Latino parents LEP when transitioning home. PRACTICE IMPLICATIONS: QPLs may improve Latino NICU infants' healthcare outcomes.

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.

Intensity of Vasopressor Therapy and In-Hospital Mortality for Infants and Children: An Opportunity for Counseling Families.

CONTEXT: Most pediatric deaths occur in an intensive care unit, and treatment specific predictors of mortality could help clinicians and families make informed decisions. OBJECTIVE: To investigate whether the intensity of vasopressor therapy for pediatric patients, regardless of diagnosis, predicts in-hospital mortality. METHODS: Single-center, retrospective medical chart review of children aged 0-17 who were admitted between 2005 and 2015 at a pediatric tertiary care center in the U.S. and received any vasopressor medication-dopamine, dobutamine, epinephrine, vasopressin, norepinephrine, or hydrocortisone. RESULTS: During the 10-year period, 1654 patients received at least one vasopressor medication during a hospitalization. Median age at the time of hospitalization was three months, and the median duration of hospitalization was 23 days; 8% of patients had two to five hospitalizations in which they received vasopressors. There were 176 total patients who died while receiving vasopressors; most (93%) died during their first hospitalization. The most common diagnosis was sepsis (34%), followed by congenital heart disease (17%). Dopamine was the most commonly prescribed first-line vasopressor (70%), and hydrocortisone was the most commonly prescribed second-line vasopressor (49%) for all pediatric patients. The incidence of mortality rose sequentially with escalating vasopressor support, increasing from under 10% with the first vasopressor to 48% at the maximum number of agents. The odds of death almost doubled with the addition of each new vasopressor. CONCLUSIONS: The intensity of vasopressor therapy for pediatric patients, regardless of diagnosis, is associated with in-hospital mortality; vasopressor escalation should trigger intensive palliative care supports.

Initiating Palliative Care Referrals in Pediatric Oncology.

CONTEXT: Early palliative care (PC) has been shown to improve the quality of life of children with cancer, yet referral practices by pediatric oncology providers remains inconsistent and few patients receive a formal PC consult. OBJECTIVES: We sought to describe patient characteristics used by oncologists for PC referral and identify ways to improve PC integration into the care for children with cancer. METHODS: This mixed-methods study used semistructured audiotaped interviews to explore the patient or disease characteristics used by pediatric oncology providers to trigger PC referral. Conventional content analysis was applied to interview transcripts. RESULTS: About 77 participants with diverse experience were interviewed. More than 75% of participants reported that PC was consulted too late and cited communication and systems issues as the top barriers. Most participants (85%) stated that a screening tool would be helpful to standardize referral practices to PC. Characteristics such as poor prognosis (88%), symptom management (86%), comorbidities (65%), and psychosocial needs (65%) were commonly reported triggers that should initiate PC consultation. However, when presented with case scenarios that included these characteristics, participants did not consistently identify the PC triggers. Nearly 50% of participants stated they had received some formalized PC training; however, only one-third of these participants noted completing a PC rotation. CONCLUSION: Our findings suggest that pediatric oncologists are committed to improving the integration of PC for their patients and that standardization of referral practices, through the use of a screening tool, would be of benefit. Additional PC education might reinforce pediatric oncologists' recognition of PC triggers.

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.

Measuring contraceptive self-efficacy in sub-Saharan Africa: development and validation of the CSESSA scale in Kenya and Nigeria.

OBJECTIVES: Contraceptive self-efficacy, a women's belief about her own ability to complete the actions necessary for successful family planning, is a well-documented determinant of contraceptive use. However, there is currently no validated measure appropriate for low-resource settings. We developed and tested a new scale to measure Contraceptive Self-Efficacy among women in sub-Saharan Africa (CSESSA) using samples in Kenya and Nigeria. STUDY DESIGN: The CSESSA scale was administered to women in Kenya (n = 314) and Nigeria (n = 414). Reliability and validity were analyzed separately by setting. Validity analysis included assessment of the area under the curve (AUC) to demonstrate predictive capability of CSESSA score for contraceptive use. Logistic regression was employed to test the relationship between CSESSA score and contraceptive use. RESULTS: Item reduction resulted in 11 items in Kenya (α = 0.90) and 10 items in Nigeria (α = 0.93). Three domains of contraceptive self-efficacy emerged in both settings: (1) husband/partner communication, (2) provider communication and (3) choosing and managing a method. Items related to the first two subscales, but not the third, were identical across settings. The AUC indicated predictive capability as mild in Kenya (AUC = 0.58) and strong in Nigeria (AUC = 0.73). In both settings, CSESSA score was associated with use of a modern contraceptive method at 12 months postpartum. CONCLUSIONS: The CSESSA scale is a reliable and valid measure in two countries. Variation of the third subscale by site indicates that certain scale items may be more relevant in areas of low versus high contraceptive prevalence. Further research should be done to validate this subscale in other contexts. IMPLICATIONS: This study contributes a reliable, valid measure of contraceptive self-efficacy in two African countries. The CSESSA scale and subscales can be administered in research (for example for evaluation of interventions to increase contraceptive uptake) or in a clinical setting to inform and improve contraceptive counseling.

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.

Medical Decision-Making in Foster Care: Considerations for the Care of Children With Medical Complexity.

OBJECTIVE: To explore how medical decision-making for children with medical complexity (CMC) occurs in the context of foster care (FC). METHODS: Together with a medical FC agency, we identified 15 CMC in medical FC and recruited eligible care team members (biological and foster parents, medical FC nurses, caseworkers in medical FC/child welfare, and pediatricians) for each child. Semistructured interviews were conducted, and conventional content analysis was applied to transcripts. RESULTS: Fifty-eight interviews were completed with 2-5 care team members/child. Serious decision-making related to surgeries and medical technology was common. Themes regarding medical decision-making for CMC in FC emerged: 1) Protocol: decision-making authority is dictated by court order and seriousness of decision, 2) Process: decision-making is dispersed among many team members, 3) Representing the child's interests: the majority of respondents stated that the foster parent represents the child's best interests, while the child welfare agency should have legal decision-making authority, and 4) Perceived barriers: serious medical decision-making authority is often given to individuals who spend little time with the child. CONCLUSIONS: Medical decisions for CMC can have uncertain risk/benefit ratios. For CMC in FC, many individuals have roles in these nuanced decisions; those with ultimate decision-making authority may have minimal interaction with the child. Pediatricians can assist by clarifying who has legal decision-making authority, facilitating team communication to promote truly informed consent, and serving as a resource to decision-makers. Further research should explore how to adapt the traditional model of shared decision-making to meet the needs of this population.

Lived Experience of Pediatric Home Health Care Among Families of Children With Medical Complexity.

Background. For children with complex medical conditions, pediatric home health care is a chronic need. It is a clinical service delivered entirely outside of clinical settings, granting families unparalleled expertise regarding service quality. Methods. Telephone interviews with parents whose children have extensive experiences with home health care. Results: Five themes emerged: (1) benefits of home health care include child survival and family stability; (2) family life is inextricable from home health care schedules, staffing, and services; (3) home health care gaps threaten family physical, mental, and financial well-being; (4) Out-of-pocket costs are common; and (5) families must fight for services as their children's medical conditions evolve. Conclusions. Families understand better than prescribers, providers, or policy makers what is working, and what is not, with home health care. Family expertise should be the foundation for training other families, clinicians, and home health care agencies, and should be a central component of policy and advocacy in this area.

Defining the Boundaries of Palliative Care in Pediatric Oncology.

CONTEXT: Although palliative care (PC) continues to be integrated into pediatric oncological care, only a minority of patients with cancer receive a formal PC consult. OBJECTIVES: We sought to describe oncologists' current understanding of PC and how primary PC is provided for children with cancer. METHODS: This mixed-methods study explored pediatric oncology providers' definitions of PC and self-reported PC practices through semistructured audiotaped interviews. Conventional content analysis was applied to interview transcripts. RESULTS: Seventy-seven participants with diverse training backgrounds (30 attending physicians, 21 nurses, 18 fellows, five nurse practitioners, and two child life specialists) completed an interview. Approximately 75% provided a modern definition of PC (e.g., not limited to end-of-life care); all participants acknowledged primary PC skills as part of their daily clinical activities. However, participants expressed wide variation in the comfort and time spent performing primary PC tasks (i.e., symptom management, addressing mental health and psychosocial needs) and over half reported that patients' PC needs are not adequately met. In addition, some reported confusion about the benefits of PC consultation, despite acknowledging that PC needs to be better integrated into the care of pediatric oncology patients. CONCLUSION: Our findings demonstrate that although most pediatric oncologists accept a modern definition of PC in theory, how to integrate PC into pediatric oncology practice is less understood. Formalized training and standardization of practice surrounding identification of PC needs in patients who may require secondary or tertiary PC services may help to overcome current barriers for PC integration in pediatric oncology.