Parent perspectives on education to support hospital discharge for children with invasive mechanical ventilation.

BACKGROUND: Children with invasive mechanical ventilation (IMV) often live at home, but for safety, parents must be prepared to assume primary responsibility for all aspects of their child's medically complex care. Prior studies have described discharge education programs, however often without perspectives of parents with lived experience transitioning home. PURPOSE: To describe parent perspectives on hospital-based education for discharging home a child with IMV. DESIGN AND METHODS: A secondary qualitative analysis of 23 parent interviews between February 2019 to January 2022 on topics related to caring for a child with IMV. Each interview was coded independently and discussed to consensus. Data from codes related to parent education and training were analyzed to identify themes and sub-themes. RESULTS: Parents of 23 children with IMV participated in the primary interviews a month after hospital discharge. Four main themes in the secondary dataset were identified: (1) Training context: The hospital can be a stressful and difficult learning environment; (2) Training characteristics: Parents receive thorough training from interdisciplinary providers; (3) Learner characteristics: Parents are motivated learners who independently seek out knowledge; (4) Post-discharge education: Parents gain confidence in their expertise after navigating an emergency. CONCLUSIONS: Parents who have transitioned from hospital-to-home describe sufficiently detailed hospital-based education; many felt trained as capably as nurses. However, parents experienced in-hospital training as inflexible and stressful. PRACTICE IMPLICATIONS: Parents of children with IMV are eager learners but parent education is not always family-centered. Reforming the hospital learning environment to match parent needs will improve family experiences and training.

Autism and neurodevelopmental disability risks in children with tracheostomies and ventilators.

BACKGROUND/OBJECTIVE: Infants who survive prematurity and other critical illnesses and require continued invasive mechanical ventilation (IMV) postdischarge (at home) are at high risk of developmental delays and disabilities. Studies of extremely preterm cohorts (<28-week gestation) demonstrate rates of 25% for intellectual disability (ID) and 7% for autism spectrum disorder (ASD). Rates of ASD and ID in children with IMV are unknown. This study aimed to determine neurodevelopmental disability risk in a cohort of children with postdischarge IMV. DESIGN/METHODS: A consecutive series of children with IMV were assessed 1 month, 6 months, and 1 year after discharge. Cognitive, social, and communicative domains were assessed by a Developmental and Behavioral Pediatrician using (1) clinical adaptive test/clinical linguistic and auditory milestone scale (CAT/CLAMS) of the capute scales; (2) pediatric evaluation of disability inventory computer adaptive test (PEDI-CAT); and (3) modified checklist for autism in toddlers, revised (MCHAT-R). Red flag signs and symptoms of ASD using DSM-V criteria were noted. Longitudinal testing was reviewed. Expert consensus impressions of evolving ASD and/or ID were determined. RESULTS: Eighteen children were followed for 1 year; at 1 year, the median age (range) was 23 (17-42) months. Children were 44% male, 33% non-Hispanic White, 39% non-Hispanic Black, and 28% Hispanic. Fifteen (83%) children were prematurity survivors. Median (range) developmental quotients (DQs): full-scale DQ 59 (11-86), CAT DQ 66.5 (8-96), and CLAMS DQ 49.5 (13-100). Twelve (67%) children were highly suspicious for ASD and/or evolving ID. CONCLUSIONS/SIGNIFICANCE: This cohort of children with at-home IMV demonstrates a higher risk of ASD and ID than prior premature cohorts. Larger investigations with longer follow-up are needed.

Home Health Nursing Agencies' Services for Children With Medical Complexity: Parent and Nurse Perspectives.

OBJECTIVE: Many children with medical complexity (CMC) require the services of home health nurses (HHNs). Home health agencies (HHAs) hire, train, and manage nurses. For children to flourish, families, nurses, and HHAs must establish successful working relationships. Our objective was to understand the perspectives of parents and nurses about HHAs. METHODS: In Illinois (IL) from 2019 to 2022, HHNs for and parents of children with invasive mechanical ventilation were interviewed. In North Carolina (NC) from 2012 to 2013, parents of CMC were interviewed, and from 2013 to 2014 HHNs participated in focus groups. Each dataset was initially analyzed separately for main themes relating to HHAs. Using collaborative thematic analysis, we determined themes common across datasets. RESULTS: In IL, 23 mothers, 12 fathers, and 20 nurses were interviewed. In NC, 19 mothers, 6 fathers, and 1 grandmother were interviewed; and 4 focus groups of 18 nurses were conducted. Four common themes were identified. 1) HHAs do not have a uniform process for hiring and assigning nurses to cases. 2) HHAs have marked variability in training offered to nurses. 3) Shift scheduling, notifications, and communications with the HHAs frustrate parents and nurses. 4) Nurses and parents have little allegiance to specific HHAs; they frequently change agencies or work with several simultaneously. CONCLUSIONS: Parents and nurses perceive practices for hiring, training, and staffing as inconsistent, and experience communication challenges. HHA-level problems may contribute to issues with HHN retention and complicate the lives of the families of CMC. Further research about this critical health care sector is needed.

Newborn Screening for Neurodevelopmental Disorders May Exacerbate Health Disparities.

Newborn screening (NBS) began in the early 1960s with screening for phenylketonuria on blood collected on filter paper. The number of conditions included in NBS programs expanded significantly with the adoption of tandem mass spectrometry. The recommended uniform screening panel provides national guidance and has reduced state variability. Universality and uniformity have been supported to promote equity. Recently, a number of researchers have suggested expanding NBS to include genomic sequencing to identify all genetic disorders in newborns. This has been specifically suggested for genes that increase the risk for neurodevelopmental disorders (NDDs), with the presumption that early identification in the newborn period would reduce disabilities. We offer arguments to show that genomic sequencing of newborns for NDDs risks exacerbating disparities. First, the diagnosis of NDD requires clinical expertise, and both genetic and neurodevelopmental expertise are in short supply, leading to disparities in access to timely follow-up. Second, therapies for children with NDDs are insufficient to meet their needs. Increasing early identification for those at risk who may never manifest developmental delays could shift limited resources to those children whose parents are more poised to advocate, worsening disparities in access to services. Rather, we suggest an alternative: genomic sequencing of all children with diagnosed NDDs. This focused strategy would have the potential to target genomic sequencing at children who manifest NDDs across diverse populations which could better improve our understanding of contributory genes to NDDs.

Home health nurses for children with invasive mechanical ventilation (IMV): Perspectives on gaps and opportunities for recruitment.

BACKGROUND: Children with medical complexity (CMC) dependent on invasive mechanical ventilation (IMV) often require private duty home nursing; however, there are ubiquitous shortages. Home health is an especially vulnerable nursing sector because of less competitive wages and less prominence during nursing education. We sought to understand nurses' perspectives on gaps and opportunities for recruiting home care nurses for children with IMV. METHODS: Home health nurses experienced with children with IMV were recruited for semi-structured interviews. The interview guide served as the initial codebook which was iteratively modified as themes emerged. This study presents an analysis of quotes related to field entry and home health experiences. FINDINGS: Twenty interviews were completed with primarily female (95%) participants. The majority worked full-time (60%) and had an average of 11 years of experience. During nursing education, participants described a lack of exposure to private duty home health nursing. Many entered the field serendipitously, because of a passion for care of CMC or to continue care for a hospitalized patient. Challenges to employment included lack of competitive wages and benefits. Nurses remained in the field because of the rewarding work with patients and families, schedule flexibility, slower pace, and one-on-one care. DISCUSSION: Home health nurses for IMV describe lack of employment benefits. However, the opportunity to work longitudinally and individually with patients was rewarding. APPLICATION TO PRACTICE: Creative solutions must be explored to recruit and sustain this essential workforce, including exposure during nursing education, improved training and benefits, and targeted recruiting.

Diagnosis of autism in a rare case of tyrosine hydroxylase deficiency: a case report.

BACKGROUND: Tyrosine hydroxylase deficiency (THD) is a rare movement disorder with broad phenotypic expression caused by bi-allelic mutations in the TH gene, which encode for tyrosine hydroxylase (TH) protein. Some patients with THD have improvement in dystonia with carbidopa-levodopa, a synthetic form of dopamine typically used in Parkinson's disease, and are considered to have dopa-responsive THD. THD has been found in 0.5-1 per million persons, although due to overlapping symptoms with other disorders and the need for genetic testing, prevalence is likely underestimated. Existing literature describes some patients with THD having intellectual disability, but comorbid autism spectrum disorder (ASD) has not been reported. CASE PRESENTATION: A nearly 3-year-old boy was referred to pediatric neurology due to hypotonia, delayed motor milestones, and expressive speech delay. Whole exome sequencing confirmed tyrosine hydroxylase deficiency, detecting a novel variant p.S307C first reported here. The child was treated with carbidopa-levodopa with an excellent response, resulting in improved balance, fewer falls, and improved ability to jump, run and climb stairs. He was determined to have dopa-responsive THD. Due to his delays in expressive speech, the boy also had an assessment with a developmental and behavioral pediatrician, who identified a pattern of social pragmatic speech delay, sensory sensitivities, and restricted interests, and determined that he met criteria for a diagnosis of ASD. CONCLUSIONS: While ASD can stand alone as a clinical diagnosis, it is also a cardinal feature of other genetically-based neurological disorders. To our knowledge, this is the first case that describes a patient with both disorders. Perhaps THD may be among the genetic disorders linked with ASD.

Paying Family Medical Caregivers for Children's Home Healthcare in Colorado: A Working Medicaid Model.

OBJECTIVE: To compare the characteristics and healthcare use of children with medical complexity who receive paid certified nursing assistant (CNA) care by a family member (family CNA) and by a traditional nonfamily member (nonfamily CNA). STUDY DESIGN: This was retrospective cohort study of children who received CNA care through Colorado's Medicaid paid family caregiving program between 2017 and 2019 by a home healthcare agency. We compared patient characteristics between the family CNA and nonfamily CNA groups. A multivariable Poisson regression model was used to compare hospitalization rates (days in the hospital per year), adjusting for patient age patient sex, nursing care, and complex chronic condition. RESULTS: Of 861 patients, 79% (n = 680) received family CNA care and 21% (n = 181) received nonfamily CNA care. Patient demographics and hospitalization did not differ between the groups, although patients who had family CNAs were less likely to receive additional nursing-level care (42% vs 60%, P < .01). Family and nonfamily CNA caregivers had similar characteristics, except that family CNA caregivers had substantially better 3-year retention (82% vs 9%, P < .01) despite lower average hourly pay ($14.60 vs $17.60 per hour, P < .01). Hospitalizations were rare (<10% of patients). In the adjusted model, patients who received family CNA care experienced 1 more hospitalized day per year, compared with patients who received nonfamily CNA care (P < .001). CONCLUSIONS: Paid family caregivers provided CAN-level care to children with medical complexity with a greater employee retention compared with nonfamily CNA caregivers, with marginally different hospitalization rates using a family-centered approach. This model may help address workforce shortages while also providing income to family caregivers.

Early childhood developmental skills of children with tracheostomies and ventilators recently discharged home.

BACKGROUND: Infants who survive prematurity and critical illnesses but require ongoing invasive mechanical ventilation (IMV) are at high risk for developmental disabilities. However, their detailed developmental profiles are largely unknown. OBJECTIVE: To understand the developmental profiles of a cohort of young children with IMV after hospital-to-home transition. DESIGN/METHODS: Developmental testing was completed 1 month after hospital discharge to determine functioning within motor, cognitive, and communicative domains using (1) the Clinical Adaptive Test/Clinical Linguistic and Auditory Milestone Scale (CAT/CLAMS); (2) the Pediatric Evaluation of Disability Inventory Computer Adaptive Test (PEDI-CAT); and (3) The Warner Initial Developmental Evaluation of Adaptive and Functional Skills (WIDEA-FS). To complement validated testing, semi-structured interviews were conducted with parents to understand perceived influences on neurodevelopment. RESULTS: Twenty children were evaluated at median (range) age 11 (5-27) months. Nearly half (45%) were male, 40% non-Hispanic Black, and 25% Hispanic. Sixteen (80%) children were survivors of prematurity. After gestational age correction, median (range) full-scale developmental quotients (DQ) were 69.5 (8-119): CAT DQ 62.5 (3-113) and CLAMS DQ 71.5 (12-125). Parents described that prolonged restriction within the hospital crib away from caregivers, despite hospital therapists, impedes development. Home environments improve development primarily through increased time with parents, but also play outside of the crib. One month after hospital discharge only 10% were receiving early intervention therapies. CONCLUSIONS/SIGNIFICANCE: Children with IMV display wide ranges of neurodevelopmental skills with a majority experiencing substantial delays in motor, communicative, and adaptive functioning. The degree and cross-domain challenges highlight the need for targeted and timely therapeutic strategies.

Prevalence of and Spending on Ear, Nose, Throat, and Respiratory Infections Among Children With Chronic Complex Conditions.

OBJECTIVE: Ear, nose, throat, and respiratory infections (ENTRI) may affect children with complex chronic conditions (CCC) differently than their peers. We compared ENTRI prevalence and spending in children with and without CCCs. METHODS: Retrospective analysis of 3,880,456 children ages 0-to-18 years enrolled in 9 US state Medicaid programs in 2018 contained in the IBM Watson Marketscan Database. Type and number of CCCs were distinguished with Feudtner's system. ENTRI prevalence, defined as ≥1 healthcare encounters for ENTRI, and Medicaid spending on ENTRI were compared by CCC using chi-square tests and logistic regression. RESULTS: ENTRIs were greater in children with vs. without a CCC (57.7% vs 43.5% [P < .001]). Children with a CCC (5.5%, n = 213,425) accounted for nearly one-fourth ($145.8 million [US]) of total spending on ENTRI. Aside from throat and sinus infection, ENTRI prevalence increased with number of CCCs (P < .001). For example, as number of CCCs increased from zero to ≥3, lower-airway infection increased from 12.5% to 37.5%, P < .001 (OR 4.10; 95% CI 3.95-4.26). ENTRI spending attributable to inpatient care increased from 9.7% to 92.8% (P < .001) as the number of CCCs increased from zero to ≥3. CONCLUSION: Most children with a CCC pursued care for ENTRI in 2018 and these children accounted for a disproportionate share of ENTRI spending. Children with multiple CCCs had a high prevalence of lower-airway infection; most of their ENTRI spending was for inpatient care. Providers can use these findings to counsel patients and families and to inform future investigations on how best to manage ENTRI in children with CCCs.

PICU Survivorship: Factors Affecting Feasibility and Cohort Retention in a Long-Term Outcomes Study.

Our understanding of longitudinal outcomes of Pediatric Intensive Care Unit (PICU) survivors is limited by the heterogeneity of follow-up intervals, populations, and outcomes assessed. We sought to demonstrate (1) the feasibility of longitudinal multidimensional outcome assessment and (2) methods to promote cohort retention. The objective of this presented study was to provide details of follow-up methodology in a PICU survivor cohort and not to present the outcomes at long-term follow-up for this cohort. We enrolled 152 children aged 0 to 17 years admitted to the PICU in a prospective longitudinal cohort study. We examined resource utilization, family impact of critical illness, and neurodevelopment using the PICU Outcomes Portfolio (POP) Survey which included a study-specific survey and validated tools: 1. Functional Status Scale, 2. Pediatric Evaluation of Disability Inventory Computer Adaptive Test, 3. Pediatric Quality of Life Inventory, 4. Strengths and Difficulties Questionnaire, and 5. Vanderbilt Assessment Scales for Attention Deficit-Hyperactivity Disorder. POP Survey completion rates were 89%, 78%, and 84% at 1, 3, and 6 months. Follow-up rates at 1, 2, and 3 years were 80%, 55%, and 43%. Implementing a longitudinal multidimensional outcome portfolio for PICU survivors is feasible within an urban, tertiary-care, academic hospital. Our attrition after one year demonstrates the long-term follow-up challenges in this population. Our findings inform ongoing efforts to implement core outcome sets after pediatric critical illness.

Parent education programs for children assisted by invasive mechanical ventilation: A scoping review.

PROBLEM: The population of children assisted by invasive mechanical ventilation (IMV) and living at home is growing. Although parent education is essential for safe transitions from hospital-to-home, little is known about how this education is delivered. The aim of this review is to identify existing literature about parent education programs, synthesize the evidence, and identify gaps in the literature for future inquiry. ELIGIBILITY CRITERIA: This scoping review was conducted in accordance with the Joanna Briggs Institute methodology. Full-text publications in the English language focused on describing parent education programs for children assisted by IMV, indexed in CINAHL, PubMed, OVID, and PsycINFO and published from 2010 to 2021 were included. Reference lists of relevant articles were reviewed, and a hand search was completed to locate any additional literature outside the original search. SAMPLE: A total of 2472 citations were identified. After screening titles and abstracts, 37 full-text articles were retrieved and assessed for eligibility. Two independent reviewers completed the screening process. A hand search located one additional article. A final sample of 18 articles were included in the review. RESULTS: The parent education programs described in the final sample included standardized discharge education programs, simulation training, resourcefulness training, patient-specific action plans, disaster preparedness, and symptom and technology management. CONCLUSION: Although most parent education programs identified in this review focused on teaching caregiver skills, program characteristics and outcome measures varied widely. IMPLICATIONS: This review recommends directions for future research to optimize parent education for children assisted by IMV.

A Literature Review of Feeding Disorders in Children with Tracheostomies and Ventilators.

Feeding disorders and gastrostomy use are highly prevalent in children with invasive mechanical ventilation (IMV) due to both common risk factors (eg, prematurity, neurological disorders) and resultant experiential deprivation (eg, long hospitalizations, delayed feeding experiences). Feeding in children with IMV is complicated by the presence of a tracheostomy, lung vulnerability, and medical complexity. The potential comorbidity of swallowing difficulties (dysphagia) and atypical early feeding experiences can result in complex feeding disorders. In this review of pediatric feeding disorders in children with invasive mechanical ventilation (IMV), we identify gaps in clinical translational research for this patient population and opportunities for improving evidence-based management. To improve long-term feeding outcomes and maximize oral feeding in this vulnerable population, children would benefit from earlier feeding opportunities during critical developmental windows, standardized protocols for advancing oral feeding, and involvement of intensive, comprehensive therapies throughout hospitalizations and early childhood. [Pediatr Ann. 2022;51(7):e291-e296.].

The Role of Care Coordinators for Children with Respiratory Technologies and Home Nursing.

Background: Children with respiratory technologies, particularly those with mechanical ventilation, represent a growing population that require complex home nursing, medical equipment, outpatient medical and habilitative supports to live and thrive in their community. Care coordination is essential to support these children and their families to navigate and integrate key community-based health and educational services, however, care is often fragmented and care coordination needs unmet. Therefore, to fully support children with respiratory technologies, it is critical to understand the role of care coordinators (CCs) and how to sustain this workforce. The aim of this article is to describe CCs' perspective on (1) their role in supporting families in a home care program for children with respiratory technologies and home nursing, and (2) the core components of recruiting into and sustaining the CC workforce. Methods: Semistructured interviews were conducted with 15 CC from the Division of Specialized Care for Children (DSCC) Home Care program for children with technology dependence and home nursing in Illinois. Two independent coders utilized a modified template approach and discussed to agreement to analyze transcripts. Results: CC averaged 6.6 years of CC experience; the majority had social work or nursing backgrounds. CCs' job satisfaction was derived from their role supporting hospital discharge, seeing children improve over time, and navigating challenges with families. CCs enjoyed working in a collaborative environment where they could draw from their colleagues' experience to solve problems. Job dissatisfaction and job turnover stemmed from difficult family interactions, high caseloads, and redundant and time-intensive administrative tasks, which interfered with family engagement. Conclusions: CCs for children with respiratory technologies require diverse skills, but interdisciplinary teams enable collaborative support of families. Seeing children thrive can sustain the workforce, however, CCs report challenges due to high caseloads and administrative tasks, which impede direct family involvement.

Understanding the Barriers to Receiving Autism Diagnoses for Hispanic and Latinx Families.

Significant disparities exist in early identification of autism spectrum disorder (ASD) for Hispanic and Latinx children. ASD prevalence estimates are approximately identical for White and Black children but lower for Hispanic and Latinx children. Reasons for these racial and ethnic variations are likely multifactorial. This review sought to understand previously described barriers and limitations to accessing ASD diagnostic services in the Latinx and Hispanic communities. Three main categories of existing barriers were identified: (1) parent/family, (2) community, and (3) systemic. These barriers are complex and multifactorial in nature, including circumstantial limitations such as limited English proficiency, noncitizenship, and low-income status. These can limit health care access, and can lead to family and community cultural barriers, poor knowledge about ASD, and social stigma related to disabilities. Understanding and mitigating barriers is essential to reduce disparities to ASD diagnosis in the Hispanic and Latinx community. [Pediatr Ann. 2022;51(4):e167-e171.].

Home Health Care Utilization in Children With Medicaid.

BACKGROUND: Although many children with medical complexity (CMC) use home health care (HHC), little is known about all pediatric HHC utilizers. Our objective was to assess characteristics of pediatric HHC recipients, providers, and payments. METHODS: We conducted a retrospective analysis of 5 209 525 children age 0-to-17 years enrolled Medicaid in the 2016 IBM Watson MarketScan Medicaid Database. HHC utilizers had ≥ 1 HHC claim. Healthcare Common Procedure Coding System (HCPCS) and Current Procedural Terminology (CPT) codes were reviewed to codify provider types when possible: registered nurse (RN), licensed practical nurse (LPN), home health aide (HHA), certified nursing assistant (CNA), or companion/personal attendant. Enrollee clinical characteristics, HHC provider type, and payments were assessed. Chronic conditions were evaluated with Agency for Healthcare Research and Quality's Chronic Condition Indicators and Feudtner's Complex Chronic Conditions. RESULTS: Of the 0.8% of children who used HHC, 43.8% were age <1 year, 25% had no chronic condition, 38.6% had a noncomplex chronic condition, 21.5% had a complex chronic condition without technology assistance, and 15.5% had technology assistance (eg, tracheostomy). HHC for children with technology assistance accounted for 72.6% of all HHC spending. Forty-five percent of HHC utilizers received RN/LPN-level care, 7.9% companion/personal attendant care, 5.9% HHA/CNA-level care, and 36% received care from an unspecified provider. For children with technology assistance, the majority (77.2%) received RN/LPN care, 17.5% companion/personal assistant care, and 13.8% HHA/CNA care. CONCLUSIONS: Children using HHC are a heterogeneous population who receive it from a variety of providers. Future investigations should explore the role of nonnurse caregivers, particularly with CMC.

Outcome Measures Following Critical Illness in Children With Disabilities: A Scoping Review.

Children with disabilities compose a substantial portion of admissions and bed-days in the pediatric intensive care unit (PICU) and often experience readmissions over time. Impacts of a PICU admission on post-discharge health status may be difficult to distinguish from pre-existing disability in this population. Efforts to standardize outcome measures used for children with disabilities may help identify morbidities associated with PICU hospitalizations. Although a scoping review of outcome measures to assess children after episodes of critical illness has recently been published, it is not known to what extent these measures are appropriate for use in children with disabilities. This limits our ability to effectively measure long-term outcomes following critical illness in this important patient population. Through mixed methodology of scoping review and multi-stakeholder consensus, we aimed to identify and describe instruments previously utilized for this purpose and to explore additional tools for consideration. This yielded 51 measures across a variety of domains that have been utilized in the PICU setting and may be appropriate for use in children with disabilities. We describe characteristics of these instruments, including the type of developmental domains assessed, availability of population data, validation and considerations regarding administration in children with disabilities, and ease of availability of the instrument to researchers. Additionally, we suggest needed alterations or accommodations for these instruments to augment their utility in these populations, and highlight areas for future instrument development.

Understanding Racial and Ethnic Disparities in Autism-Related Service Use Among Medicaid-Enrolled Children.

Racial and ethnic disparities in the use of nine common autism-related services among Medicaid-enrolled children with autism spectrum disorder (ASD) were examined, distinguishing between school and other community-based outpatient settings. Using 2012 Medicaid Analytic Extract data, we identified 117,848 continuously enrolled children with ASD. Several racial and ethnic disparities were found, varying by geography. Black, Asian, and Native American/Pacific Islanders received fewer outpatient services compared with white children, but there was no disparity for Latinx children. Black and Asian children received more school-based services than white children. Disparities in case management/care coordination services were largest and present in each minority group. Geographic variation in receipt of services suggests targets for policy intervention to improve access for minorities with ASD.

Home nursing for children with home mechanical ventilation in the United States: Key informant perspectives.

OBJECTIVES & HYPOTHESIS: Children with home mechanical ventilation (HMV) require skilled care by trained caregivers, and their families feel the impacts of ubiquitous home nursing shortages. It is unknown which factors determine allocation; no standards for private duty nursing intensity exist. We sought to characterize provider experiences with and opinions on home nursing for children with HMV, hypothesizing providers would describe frequent home nursing gaps across clinical scenarios. METHODS: Purposeful and snowball sampling identified key informant clinical providers. Survey topics included hours of home nursing received across clinical and family scenarios. Close-ended responses were analyzed using descriptive statistics and open-ended questions coded with iterative modification for major theme agreement. RESULTS: A total of 59 respondents represented care of patients from 44 states; 49.2% physicians, 37.3% nurses, 10.2% respiratory therapists, and 3.4% case managers. Nearly all (97%) believed that families should receive more hours during initial home transition, yet less than half (47%) do. The majority (80.7%) thought the presence of other children in the home should influence nursing hours, yet only three (5.3%) reported other children have influence. Across hypothetical medical technology scenarios, providers consistently described children receiving fewer nursing hours than the providers' ideal practice. A third (31.7%) described discharging patients without any home nursing arranged. CONCLUSIONS: This HMV provider sample highlights pervasive deficiency in home nursing provision with heterogenous interpretation of what constitutes ideal home care. Family and social contextual factors are infrequently considered in nursing allocations. Provider, community health, and family stakeholders must collaborate to generate national community practice standards for children with HMV.

Discharge Practices for Children with Home Mechanical Ventilation across the United States. Key-Informant Perspectives.

Rationale: In 2016, the American Thoracic Society released clinical practice guidelines for pediatric chronic home invasive ventilation pertaining to discharge practices and subsequent management for patients with invasive ventilation using a tracheostomy. It is not known to what extent current U.S. practices adhere to these recommendations.Objectives: Hospital discharge practices and home health services are not standardized for children with invasive home mechanical ventilation (HMV). We assessed discharge practices for U.S. children with HMV.Methods: A survey of key-informant U.S. clinical providers of children with HMV, identified with purposeful and snowball sampling, was conducted. Topics included medical stability, family caregiver training, and discharge guidelines. Close-ended responses were analyzed using descriptive statistics. Responses to open-ended questions were analyzed using open coding with iterative modification for major theme agreement.Results: Eighty-eight responses were received from 157 invitations. Eligible survey responses from 59 providers, representing 44 U.S. states, included 49.2% physicians, 37.3% nurses, 10.2% respiratory therapists, and 3.4% case managers. A minority, 22 (39%) reported that their institution had a standard definition of medical stability; the dominant theme was no ventilator changes 1-2 weeks before discharge. Nearly all respondents' institutions (94%) required that caregivers demonstrate independent care; the majority (78.4%) required two trained HMV caregivers. Three-fourths described codified discharge guidelines, including the use of a discharge checklist, assurance of home care, and caregiver training. Respondents described variable difficulty with obtaining durable medical equipment, either because of insurance or durable-medical-equipment company barriers.Conclusions: This national U.S. survey of providers for HMV highlights heterogeneity in practice realities of discharging pediatric patients with HMV. Although no consensus exists, defining medical stability as no ventilator changes 1-2 weeks before discharge was common, as was having an institutional requirement for training two caregivers. Identification of factors driving heterogeneity, data to inform standards, and barriers to implementation are needed to improve outcomes.