As a result of this initial investigation, application to the state agency and training for caregivers have been initiated sooner, when a tracheostomy is first placed.

Objective To assess the reasons for discharge delays for children with long-term mechanical ventilation. Study design Charts of children (0-18 years of age) with a new tracheostomy in the Pulmonary Habilitation Program at the Ann and Robert H. Lurie Children's Hospital of Chicago were retrospectively reviewed for demographic information, medical diagnoses, medical stability, discharge to home, reasons for discharge delay, and hours of staffed home nursing. All patients were discharged on mechanical ventilation. Discharge delay was defined as >10 days after medical stability. Hospital charges were analyzed and excess charges quantified beginning with the date of delay. Descriptive statistics and Pearson c 2 tests were used to compare nursing hours and demographics. Results Of 72 patients, 55% were male with mean age 1.8 years (SD 3.8) at tracheostomy placement. The most common long-term mechanical ventilation indication was chronic lung disease (n = 47, 65%); 54% had discharge delays, the majority were primarily due to lack of home nursing (62%), followed by delay of caregiver training (18%), caregiver health and social issues (8%), and delay in a transitional care facility bed (8%). Of the 39 delayed patients, 10%

Objective Children with invasive home mechanical ventilation (HMV) are a growing population with complex health service needs. Single institution studies provide insight into successful program structures and outcomes. Our study objectives were to assess health service structures, providers, and programs caring for this population throughout the U.S., and to understand barriers to high‐quality care. Design Using purposeful sampling with capture‐recapture and snowball sampling methods, we identified key informants for care of the U.S. pediatric HMV population. Informants received web‐based surveys with two reminders. Survey domains included respondent characteristics, HMV team composition, and barriers to care. Results Survey response was 71% with 101 completed. Respondents caring for patients in 45 states included physicians (61%), nurses (20%), therapists (12%), case managers (4%), and social workers (2%). Half (53%) of physicians were fellowship trained, most commonly pulmonology (22%) and critical care medicine (13%). The majority (65%) of providers described a dedicated HMV service. The majority (61%) of respondents from a HMV service provided both inpatient and outpatient care. Nearly all respondents (96%) described an inadequate supply of home nurses and 88% reported inadequate respite facilities. Conclusions Children with HMV assistance receive care from a diverse group of providers with varied team structure. Heterogeneity may reflect patient diversity and provider interest, increasing efficacy but challenging standardization nationwide. Despite team structure variability, similar home care difficulties were universally experienced. Data suggest that the home nursing shortage is a national impediment to quality and efficient discharge with limited community‐based support for this vulnerable population.

OBJECTIVE: To describe interactive activities between parents and young children in a nationally representative sample. We hypothesized that the frequency of participation in interactive activities would be different across economic strata and would be associated with developmental delay.

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Children with medical technology dependency (MTD) require a medical device to compensate for a vital body function and substantial nursing care. As such, they require constant high-level supervision. Respite care provides caregivers with a temporary break, and is associated with reduced stress; however, there are often barriers. The study utilizes mixed methodology with the National Survey of Children with Special Health Care Needs (NS-CSHCN) and semistructured interviews with state-wide care coordinators to understand the gap for respite care services. Fifty-nine percent of parents who needed respite care received none. Parents of older children with MTD were more likely to report respite needs. Care coordinators described that home health shortages created barriers to respite care utilization, and the lack of respite care can lead to hospital readmission. Although respite care is a vital resource to support families of children with MTD, it is infrequently available, which can have severe consequences.

ObjectiveChildren with medical technology dependence (MTD) are frequently readmitted to the hospital. However, due to their medical fragility, it is often difficult to untangle the root causes for readmissions to identify the most effective preventive approaches. We sought to explore environmental and family factors driving hospital readmissions for children with MTD.DesignSemi‐structured, in‐person interviews were conducted with state‐wide care coordinators for children with MTD in Illinois with at least 1 year of experience. Interview topics related to children with MTD transitioning from hospital‐to‐home, essential supports for living in the community, and factors which influenced and prevented hospital readmission. The interview guide served as an initial codebook which was iteratively modified as themes emerged.ResultsFifteen care coordinators with on average 6.6 years of experience were interviewed. They described that lack of home nursing was one of the primary drivers of readmissions due to parental exhaustion and lack of medical expertize in the home. Unavoidable medical admissions, a lack of a plan for emergencies, and home environmental factors also contributed to readmissions.ConclusionHospital readmission is an expected occurrence for children with MTD, yet still may be substantially reduced through consistent, quality home health nursing to bolster family capacity and allow for respite from constant caregiving. Improved incentives for the home health workforce to increase manpower would be ultimately offset by reduced hospitalizations for children with MTD. Additionally, more research is needed to understand which home nursing structures and skills optimally support families in the reality of manpower scarcity.

Children with ventilator assistance have been supported in living at home since 1981 when parental advocacy ushered in a change to Medicaid policy. As the population of children who use medical technology such as long-term ventilation increases, we must critically evaluate our systems for preparing families for home life. Discharge delays persist in the modern era because of fragmentation between hospital and home systems. These discharge delays result in children spending time in less developmentally rich environments, further exacerbating the health and development disparities of children with complex disabilities. In this article, we discuss the complication of hospital discharge and how it contributes to health and developmental disparities. We also describe a hospital-to-home transitional care model, which presents a home-like environment to provide developmental support while focusing on parental training, home nursing, and public-funding arrangements. [Pediatr Ann. 2017;46(10):e365-e370.].