Pediatric Home Research Articles

Five year experience of paediatric home enteral nutrition treatment in Tartu university hospital, Estonia

Five year experience of paediatric home enteral nutrition treatment in Tartu university hospital, Estonia

Mapping health-related quality of life of children and families receiving pediatric invasive home mechanical ventilation: a scoping review protocol

BackgroundChildren utilizing invasive home mechanical ventilation (administered via tracheostomy tube) receive intensive care at home without the support of trained staff typically present in an intensive care unit; within the context of worsening home nursing shortages, much of the 24/7 care burden falls to families which are likely under supported. Prior reviews have explored the quality of life of children receiving various forms of mechanical ventilation, without addressing the impact on the family. Additionally, the literature inconsistently differentiates the unique experience of families with children using invasive home mechanical ventilation from non-invasive, which has lower morbidity and mortality and requires less nursing care in the home. Therefore, our study aims to explore and map the existing literature regarding the impact of invasive home mechanical ventilation on the child and family’s quality of life. Identified gaps will inform future research focused on improving the family quality of life of children with invasive home mechanical ventilation.MethodsFive databases will be searched using keywords and controlled vocabulary to identify relevant studies: Ovid Medline, Embase, Scopus, and Cochrane Library. English language studies will meet inclusion criteria if they include primary research studies of children or families of children utilizing invasive home mechanical ventilation at home and assess quality of life. Children and young adults aged 0–25 years will be included. We exclude studies of hospitalized children, studies focused solely on healthcare professional experiences or clinical outcomes, and those focused on the period surrounding discharge from admission for tracheostomy placement. Two independent reviewers will screen studies at the title/abstract and full-text levels. Two independent reviewers will extract data from relevant studies. Disagreements will be resolved by an independent third reviewer. A targeted grey literature search will be performed utilizing ProQuest, clinicaltrials.gov, WHO trial registry, Google Scholar, and professional societies. Findings will be presented in tables and figures along with a narrative summary.DiscussionThis scoping review seeks to map the literature and provide a descriptive report of the health-related quality of life of children using invasive home mechanical ventilation and their families.RegistrationOpen Science Framework https://doi.org/10.17605/OSF.IO/6GB84Date of Registration: November 29, 2023.

Nurse-led proactive mobile application in symptom management for children with medical complexity: Study protocol for a randomized controlled trial.

To investigate the effect of a nurse support using a proactive mobile app to enhance parental self-efficacy in symptom management for children with medical complexity. A single-blinded, randomized controlled trial with a two-armed repeated measures design. Eligible parents and the children will be recruited from the special schools and non-government offices. They will be randomly assigned either to the intervention or control groups. Subjects in the study group will receive nurse parental support using a symptom management mobile app for 3 months. The control group will receive the usual care that is available in the community. Data will be collected pre-intervention (T1), immediately after the intervention (T2), and three-month after intervention (T3). The primary outcome is parental self-efficacy. The secondary outcomes include child's symptom burden and their health service utilization. Primary outcome will be compared across two groups in T2 and T3 using with control for the pre-test value of parental self-efficacy. Generalized estimating equation (GEE) will be used to address secondary objectives from T1 to T3 with appropriate link function. As a result of the successful implementation of this nurse-led symptom management, parental self-efficacy will be enhanced. Both the symptoms reported by the children and their health service utilization will be reduced. Findings of this study will help in service delivery improvements because it maximizes the availability and accessibility of paediatric health service to parents and the children in local communities. The evidence produced in this study will enlarge the knowledge base that supports evidence-based paediatric home nursing service with the use of health technology in symptom management. This evidence will also contribute to the development of other symptom management programs for other paediatric patient groups. NCT05765643 (ClinicalTrials.gov identifier). Parents of children with medical complexity contributed in mobile application development by giving comments on the usability of mobile application. Improve health service delivery: Home nursing service may not be sustainable in a long run in Hong Kong, as the health care system has been facing a serious nursing workforce shortage in recent years. Besides, these services are affected or even suspended during the community outbreak of infectious disease, like recent coronavirus disease pandemic. Nurse parental support in symptom management for the CMC using a proactive mobile health application will help in service delivery improvements because it maximizes the availability and accessibility of paediatric health service to parents and their CMC in local communities. Improve physical and psychological health of parents and their CMC: The success of program implementation will help to increase parental self-efficacy in symptom management for their CMC, as a result of decrease of children's symptom burden. Improve knowledge base: The evidence produced in this study will (1) enlarge the knowledge base that supports evidence-based paediatric community nursing service related to symptom management for the CMC. This evidence will contribute to the development of other symptom management programs for other paediatric patient groups.

“Home Sweet Home”: A Pediatric Palliative Home Transport Guide for Rural and Under-Resourced Areas

“Home Sweet Home”: A Pediatric Palliative Home Transport Guide for Rural and Under-Resourced Areas

Age of first dental visits: A benefit of the pediatric medical home.

This retrospective cohort study compared differences in age one dental visit use and age at first dental visit according to fluoride varnish receipt at the pediatric medical home. Enrollment and claims data were used from Partners For Kids, a pediatric accountable care organization covering Medicaid-enrolled children living in 47 of 88 counties in Ohio. The main outcomes were having an age one dental visit and the mean age at first dental visit. Descriptive statistics and bivariate comparisons were applied. Among 17,675 children, 2.8% had an age one dental visit. The mean age at first dental visit was 4.8 years. Children who received fluoride varnish from their medical home (12% of study population) were significantly younger at their first dental visit (4.1 vs. 4.9 years, p < 0.001). Despite longstanding recommendations for the age one dental visit, very few Medicaid-enrolled children in Ohio had one. The pediatric medical home lowered the age of first dental visit.

Weaning strategies for children on home invasive mechanical ventilation.

Children who require home mechanical ventilation (HMV) with an artificial airway or invasive mechanical ventilation (HMV) have a possibility of successful weaning due to the potential of compensatory lung growth. Internationally accepted guidelines on how to wean from HMV in children is not available, we summarize the weaning strategies from the literature reviews combined with our 27-year experience in the Pediatric Home Respiratory Care program at the tertiary care center in Thailand. The readiness to wean is considered in patients with hemodynamic stability, having effective cough measured by maximal inspiratory pressure, requiring a fraction of inspired oxygen (FiO2) < 40%, positive end expiratory pressure <5 cmH2O, and acceptable arterial blood gases. The strategies of weaning is start weaning during the daytime while the child is awake and close monitoring is feasible. Disconnect time is gradually increased through naps and sleeping hours. Weaning from the conventional mechanical ventilator to Bilevel PAP or CPAP are optional. Factors affected the successful weaning are mainly the underlying diseases, complications, growth and development, caregivers, and resources. Weaning should be stopped during acute illness or increased work of breathing. The readiness for decannulation could be determined by using the speaking devices, tracheostomy capping, and measurement of end-expiratory pressure. Polysomnography and airway evaluation by bronchoscopy are recommended before decannulation.Weaning when the child is ready is crucial because living with HMV can be challenging and stressful. Failure to remove a tracheostomy when indicated can result in delayed speech, social problems as well as risk for infection.

Virtual Nutrition Counseling in Pediatric Primary Care: An Integrated Approach to the Prevention and Management of Pediatric Obesity.

Given the rising prevalence of pediatric obesity, new approaches to the delivery of targeted nutrition counseling to not only prevent but also treat pediatric obesity are needed. The integration of a dietitian virtually was a successful quality improvement measure in this academic pediatric primary care clinic. The virtual dietitian provided age-appropriate nutrition counseling at well-child visits from 9 months to 6 years of age. Dietary counseling was also provided for children with overweight and obesity regardless of age. Vegetable, fruit, snack, and dairy intake was assessed in children who received counseling versus those who had traditional well childcare. Improved dairy habits were noted in the counseling cohort. A decrease in body mass index was not demonstrated in the patients with obesity or overweight; however, patient and provider satisfaction was quite high with this novel quality improvement measure. Virtual nutrition counseling can be easily integrated to facilitate a comprehensive pediatric medical home.

Monitoring of physiologic features and treatment aspects of children on home invasive mechanical ventilation.

Pediatric home invasive mechanical ventilation patients are a small but resource-intensive cohort, requiring close monitoring and multidisciplinary care. Patients are often dependent on their ventilator for life support, with any significant complications such as equipment failure, tracheostomy blockage, or accidental decannulation becoming potentially life-threatening if not identified quickly. This review discusses the indications and variations in practice worldwide, in terms of models of care, including home care provision, choice of equipment, and monitoring. With advances in technology, optimal monitoring strategies for home, continue to be debated: In-built ventilator alarms are often inadequately sensitive for pediatric patients, necessitating additional external monitoring devices to minimize risk. Pulse oximetry has been the preferred monitoring modality at home, though in some special circumstances such as congenital central hypoventilation syndrome, home carbon dioxide monitoring may be important to consider. Children should be under regular follow-up at specialist respiratory centers where clinical evaluation, nocturnal oximetry, and capnography monitoring and/or poly(somno)graphy and analysis of ventilator download data can be performed regularly to monitor progress. Recent exciting advances in technology, particularly in telemonitoring, which have potential to hugely benefit this complex group of patients are also discussed.

Student Survey of Pediatric Home Safety.

Student Survey of Pediatric Home Safety.

Improving food insecurity screening across a health system throughout the COVID-19 pandemic

BackgroundFood insecurity has direct and indirect negative outcomes on the physical and mental health of children, with impacts throughout adult life. Rates of food insecurity have increased dramatically since the...

Enhancing access to early intervention by including parent navigators with lived experience in a pediatric medical home.

A growing number of children have developmental delay (DD) or intellectual and developmental disabilities (IDD), and early intervention (EI) can improve their developmental trajectory. However, access to EI is fraught with disparities. This article describes the development of Parent Navigator (PN) program that placed three parents with lived experience in a pediatric medical home to serve as community health workers to provide support to families with a child with DD or IDD to access EI and other needed resources. We used a mixed-methods approach to program evaluation that included (a) documenting the number of referrals to the EI programs made by the PNs; (b) documenting referral outcomes; (c) conducting a physician satisfaction survey; and (d) interviewing the PNs to reflect on their experiences assisting families. From July 2018 to September 2020, our PNs facilitated 623 referrals to EI due to significant developmental concerns found during a pediatric visit. Rates of successful connection to EI were 71%. Survey results indicated that pediatricians felt the PNs were a valuable part of the healthcare team and helped reduce their own job stress. The PNs provided multiple examples of their methods of addressing barriers to EI access by relating to families with their own lived experience and by "meeting families where they are at." The PN program might be a successful approach to addressing disparities in EI access for families in need by using an innovative method of employing individuals with lived experience in the pediatric primary care setting. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Psychosocial Well-Being of Siblings of Pediatric Patients in Palliative Home Care.

Despite the proposed high burden of siblings of children and adolescents with life-limiting conditions receiving pediatric palliative care (PPC) at home, little is known about their psychosocial well-being. In this prospective, cross-sectional trial siblings of patients of a large pediatric palliative home care team were asked to answer the KINDL survey of health-related quality of life, the strengths and difficulties questionnaire (SDQ) to assess problems and resources of children and adolescents as well as the LARES questionnaire, a potential tool for early screening of distress in siblings of chronically ill children. The results of the KINDL total and subdomains as well of the SDQ-subdomains were compared to recent German normative data using multiple t-tests. In total, 44 siblings (28 female; age 7-18 years, mean 11.8 ± 3.03) of 29 families participated in this study. The subgroup which matches the age range of current normative data of 11-17 years old siblings (n=25) reported a significant lower total quality of life as measured by KINDL in comparison to normative data. Subscale analyses revealed a significant lower physical and psychological well-being and self-esteem. Siblings of PPC patients yielded significant higher scores in the subdomain prosocial behavior compared to normative data as measured by the SDQ. Siblings of children receiving PPC in a home care setting are at risk for a relevant impairment of their health-related quality of life. Future studies should address the potential for possible interventions specific for this population-at-risk.

Home values and experiences navigation track (HomeVENT): Supporting decisions about pediatric home ventilation

To pilot feasibility and acceptability of HomeVENT, a systematic approach to family-clinician decision-making about pediatric home ventilation. Parents and clinicians of children facing home ventilation decisions were enrolled at 3 centers using a pre/post cohort design. Family interventions included: 1) a website describing the experiences of families who previously chose for and against home ventilation 2) a Question Prompt List (QPL); 3) in-depth interviews exploring home life and values. Clinician HomeVENT intervention included a structured team meeting reviewing treatment options in light of the family's home life and values. All participants were interviewed one month after the decision. We enrolled 30 families and 34 clinicians. Most Usual Care (14/15) but fewer Intervention (10/15) families elected for home ventilation. Families reported the website helped them consider different treatment options, the QPL promoted discussion within the family and with the team, and the interview helped them realize how home ventilation might change their daily life. Clinicians reported the team meeting helped clarify prognosis and prioritize treatment options. The HomeVENT pilot was feasible and acceptable. This systematic approach to pediatric home ventilation decisions prioritizes family values and is a novel method to increase the rigor of shared decision-making in a rushed clinical environment.

Pediatric influenza vaccination in the perioperative setting: A quality improvement project.

Unmet need for seasonal influenza vaccination administration to pediatric patients exists at national and local levels. Vaccination during the perioperative period remains controversial, though opportunity exists to meet vaccination need through perioperative programs. The initial SMART Aim of this quality improvement initiative was to establish and increase seasonal influenza vaccination rate in eligible patients during in person preoperative clinic visits in a pediatric perioperative surgical home (PSH) to 10%. Informed by each prior season's experience, we increased our SMART Aim target for vaccinations in seasons two and three to 15 and 18%, respectively. Following the Model for Improvement methodology, the PSH team developed and implemented a perioperative pediatric influenza vaccination program. Across three influenza seasons, key interventions included updates to organizational perioperative vaccination policy, obtaining material influenza vaccination supplies, development of EHR tools, PSH staff education, and communication with patient-families. Rate of eligible patients receiving influenza vaccination at their PSH clinic appointment was tracked over time. Influenza vaccination rates were reported monthly during Season 1, then weekly during seasons two and three. The balancing measure was same day surgery case cancellations related to influenza vaccination given at PSH clinic appointment. Statistical analysis methods utilized include Shewart's control chart and statistical process control (SPC) standards. Special cause variation was determined by eight or more consecutive data points above or below the centerline. The influenza vaccination rates in each of the three influenza seasons exceeded vaccination rate goals of 10, 15, and 18%, respectively. A total of 695 vaccines have been administered since program inception. No same day surgical case cancellations were observed as balancing measure. Over three consecutive influenza vaccination seasons, we safely established and met vaccination rate goals of 10, 15, and 18% to eligible patients during preoperative clinic visits within a pediatric PSH system. Through iterative PDSA cycles, we continue to identify opportunities for future improvement. This suggests that the perioperative period presents opportunity for seasonal influenza vaccination with potential program expansion to include routine vaccines of childhood.

An After-Hours Virtual Care Service for Children With Medical Complexity and New Medical Technology: Mixed Methods Feasibility Study.

Family caregivers (FCs) of children with medical complexity require specialized support to promote the safe management of new medical technologies (eg, gastrostomy tubes) during hospital-to-home transitions. With limited after-hours services available to families in home and community care, medical device complications that arise often lead to increased FC stress and unplanned emergency department (ED) visits. To improve FC experiences, enable safer patient discharge, and reduce after-hours ED visits, this study explores the feasibility of piloting a 24/7 virtual care service (Connected Care Live) with families to provide real-time support by clinicians expert in the use of pediatric home care technologies. This study aims to establish the economic, operational, and technical feasibility of piloting the expansion of an existing nurse-led after-hours virtual care service offered to home and community care providers to FCs of children with newly inserted medical devices after hospital discharge at Toronto's Hospital for Sick Children (SickKids). This exploratory study, conducted from October 2020 to August 2021, used mixed data sources to inform service expansion feasibility. Semistructured interviews were conducted with FCs, nurses, and hospital leadership to assess the risks, benefits, and technical and operational requirements for sustainable and cost-effective future service operations. Time and travel savings were estimated using ED visit data in SickKids' electronic medical records (Epic) with a chief complaint of "medical device problems," after-hours medical device inquiries from clinician emails and voicemails, and existing service operational data. A total of 30 stakeholders were interviewed and voiced the need for the proposed service. Safer and more timely management of medical device complications, improved caregiver and provider experiences, and strengthened partnerships were identified as expected benefits, while service demand, nursing practice, and privacy and security were identified as potential risks. A total of 47 inquiries were recorded over 2 weeks from March 26, 2021, to April 8, 2021, with 51% (24/47) assessed as manageable via service expansion. This study forecasted annual time and travel savings of 558 hours for SickKids and 904 hours and 22,740 km for families. Minimal technical and operational requirements were needed to support service expansion by leveraging an existing platform and clinical staff. Of the 212 ED visits related to "medical device problems" over 6 months from September 1, 2020, to February 28, 2021, enteral feeding tubes accounted for nearly two-thirds (n=137, 64.6%), with 41.6% (57/137) assessed as virtually manageable. Our findings indicate that it is feasible to pilot the expansion of Connected Care Live to FCs of children with newly inserted enteral feeding tubes. This nurse-led virtual caregiver service is a promising tool to promote safe hospital-to-home transitions, improve FC experiences, and reduce after-hours ED visits.

The care burden for technology-dependent children with long-term home ventilation increases along with the improvement of their motor functions

Since the establishment of Japan’s publicly supported pediatric home medical care (PHMC) system in 2012, the number of technology-dependent children (TDC) who are supported by PHMC has been increasing. We expected care to become easier as TDC mobility increased. However, many family caregivers complained of the opposite, that the burden of care increased as TDC’s mobility increased. Therefore, we aimed to study the problems of the care burden of families in relation to the improvement of mobility of TDC with a focus on respiratory support. We conducted a survey among caregivers of TDC in two parts: a first survey was done between 2018 and 2020, and a follow-up survey in 2023. In each medical procedure, the correlation of TDC’s motor function level with care burden was analyzed by using correlation analysis. In 15 households, caregivers’ activities were monitored to elucidate the problems of the care objectively. The second survey was conducted in February 2023 in TDC whose medical records were available. Analysis of 418 cases showed that care-burden increased with improvements in the children’s motor ability in tracheostomy, or remained the same in other procedures. A follow-up study in 262/418 cases of this group showed that part of these TDC with high mobility aged 1–8, after passing through the mobile phase with increased burden of care, had a high potential to be weaned from medical devices. Conclusion: For TDC who acquire motor skills during PHMC, the burden of care for caregivers either increases or remains the same. It is important to maintain social support for TDC on the recovering mobile stage.What is Known:• There was no clear information on the care burden when TDC become mobile.What is New:• We did a qualitative study to show that the care burden increases when TDC become mobile.• In addition, mobike TDC showed a high potential for recovery.

Finnish children who needed long-term home respiratory support had severe sleep-disordered breathing and complex medical backgrounds.

No studies have described long-term paediatric home respiratory support in Nordic countries. We examined the clinical characteristics and long-term outcomes of paediatric patients who received continuous positive airway pressure, non-invasive-positive-pressure ventilation and invasive ventilation from a multidisciplinary home respiratory support team. Retrospective tertiary-level data were collected between 1 January 2010 and 31 December 2020 in Tampere University Hospital. These comprised patient demographics, treatment course and polysomnography-confirmed sleep-disordered breathing (SDB). There were 93 patients (63.4% boys). The median age at treatment initiation was 8.4 (range 0.11-16.9) years. The patients had: neuromuscular disease (16.1%), central nervous system disease (14.0%), developmental disabilities and congenital syndrome (29.0%), lung-airway conditions (11.8%), craniofacial syndrome (15.1%) and severe obesity (14.0%). More than two-thirds had severe SDB (66.7%) and the most common one was obstructive sleep apnoea in 66.7%. We found that 92.5% received long-term therapy for more than 3 months and the mean treatment duration was 3.3 ± 2.7 years. A non-invasive mask interface was used in 94.7% of cases and 5.3% needed tracheostomy ventilation. More than a quarter (26.7%) achieved disease resolution during the study period. Most children who needed long-term home respiratory support had complex conditions and severe, persistent SDB.

Codesign of remote data collection for chronic management of pediatric home mechanical ventilation.

Outpatient monitoring of children using invasive home mechanical ventilation (IHMV) is recommended, but access to care can be difficult. This study tested if remote (home-based) data collection was feasible and acceptable in chronic IHMV management. A codesign study was conducted with an IHMV program, home nurses, and English- and Spanish-speaking parent-guardians of children using IHMV (0-17 years; n = 19). After prototyping, parents used a remote patient monitoring (RPM) bundle to collect patient heart rate, respiratory rate (RR), oxygen saturation, end-tidal carbon dioxide (EtCO2 ), and ventilator pressure/volume over 8 weeks. User feedback was analyzed using qualitative methods and the System Usability Scale (SUS). Expected marginal mean differences within patient measures when awake, asleep, or after a break were calculated using mixed effects models. Patients were a median 2.9 years old and 11 (58%) took breaks off the ventilator. RPM data were entered on a mean of 83.7% (SD ± 29.1%) weeks. SUS scores were 84.8 (SD ± 10.5) for nurses and 91.8 (SD ± 10.1) for parents. Over 90% of parents agreed/strongly agreed that RPM data collection was feasible and relevant to their child's care. Within-patient comparisons revealed that EtCO2 (break-vs-asleep 2.55 mmHg, d = 0.79 [0.42-1.15], p < .001; awake-vs-break 1.48, d = -0.49 [0.13-0.84], p = .02) and RR (break-vs-asleep 16.14, d = 2.12 [1.71-2.53], p < .001; awake-vs-break 3.44, d = 0.45 [0.10-0.04], p = .03) were significantly higher during ventilator breaks. RPM data collection in children with IHMV was feasible, acceptable, and captured clinically meaningful vital sign changes during ventilator breaks, supporting the clinical utility of RPM in IHMV management.

Care Burden and Quality of Life among Caregivers in Pediatric Respiratory Home Care: A Preliminary Report

&lt;p&gt;研究背景與目的：由於醫療科技與照護品質的進步，呼吸重症兒童存活率提升，需要長期呼吸照顧的兒童及需求日漸增多，包含就醫、照護、就學、成長等長期的、多方面的撫育照顧需求。本研究目的如下：1.了解居家呼吸照護兒童與家庭照顧者的人口學特質，2.探討照顧者負荷與生活品質。研究方法：本研究為橫斷性研究，採立意取樣。收案對象為居家使用呼吸器30天以上或有氣切造口之18歲以下兒童的家庭照顧者。本研究首先利用問卷評估居家呼吸照護兒童的特質及功能行為量表、家庭照顧者人口學特質與其家庭特性。並另外以問卷了解家庭照顧者的照顧負荷，家庭照顧者的生活品質則以世界衛生組織生活品質-台灣簡明版之問卷作為評量。本研究收集之資料，依據研究目的，進行描述統計結果，敘述分析其特性。研究結果：本研究收集有效問卷共計102位家庭照顧者，90%之家庭照顧者為母親，平均年齡41.2&amp;plusmn;9.7歲，照顧者有一半以上提供全日照護，83人加入相關社群支持團體。居家照護兒童平均年齡7.8&amp;plusmn;5.4歲，男童59位，使用呼吸器者有96人，氣切照護52人，到校上學55人，主要診斷為中樞神經系統與神經肌肉疾病居多，過去一年住院原因以肺炎為主(38%)。本研究對象之照顧負荷以社會負荷最高，依序為經濟、心理與生理負荷，負荷指數皆大於70%。生活品質則以社會關係範疇之滿意程度最高，最低為心理健康範疇。結論：本研究結果發現兒童居家呼吸照護具有長期、多元、仰賴照顧特質，主要照顧者之照顧工作複雜且不容易取代的特性，導致其高照顧負荷，與生活品質滿意度低。建議應了解長期呼吸照護兒童家庭照顧者之需求，提供資源與社會支持，以減緩照顧負荷，並促進家庭功能與生活品質。&lt;/p&gt; &lt;p&gt;&amp;nbsp;&lt;/p&gt;&lt;p&gt;Background and Purpose: The increased care burden among home caregivers results in significant stress. This preliminary report aimed to evaluate the pediatric respiratory home caregivers&amp;rsquo; burden and quality of life (QOL). Methods: This cross-sectional study used purposive sampling to prospectively recruit children re-ceiving pediatric respiratory home care and their caregivers. Eligible children were defined as children younger than 18 years who had used home ventilators for more than 30 days or who needed tracheostomy care. The Caregiver Care Burden Scale was used to investigate the caregivers&amp;rsquo; physiological, psychological, social and economic burdens. QOL was assessed using a brief version of the QOL scale developed by the World Health Organization (WHOQOL-BREF). Results: A total of 102 pairs of chil-dren and caregivers were included. Caregivers&amp;rsquo; mean age was 41.2&amp;plusmn;9.7 years, and 90% were mothers of home care children. Children&amp;rsquo;s demographic and clinical char-acteristics were: age 7.6&amp;plusmn;5.4 years, ventilator-dependent (n=96), tracheostomy (n=52), with major diagnoses of central nervous system disorders (44%) and neuromuscular dystrophy (23%). Social burden was the highest care burden, and the four care burden domains were all above 70%, indicating a medium level of care burden. Psychological QOL had the lowest score among the four QOL domains. Conclusions: Pediatric res-piratory home care is long-term, multidisciplinary, and highly-dependent. The overall care burden and QOL of home caregivers are at a medium level. Psychosocial support and focusing on caregivers&amp;rsquo; needs and general health may reduce caregivers&amp;rsquo; care burden, improve QOL and enhance family dynamics in pediatric respiratory home care.&lt;/p&gt; &lt;p&gt;&amp;nbsp;&lt;/p&gt;

Principles of Child Health Care Financing.

The American Academy of Pediatrics believes that the United States can and should ensure that all children, adolescents, and young adults from birth through the age of 26 years who reside within its borders have affordable access to high-quality comprehensive health care. Comprehensive, high-quality care addresses issues, challenges, and opportunities unique to children and young adults and addresses the effects of historic and present inequities. All families should have equitable access to professionals and facilities with expertise in the care of children within a reasonable distance of their residence. Payment methodologies should be structured to guarantee the economic viability of the pediatric medical home and of pediatric specialty and subspecialty practices. The recent increase in child uninsurance over the last several years is a threat to the well-being of children and families in the short- and long-term. Deficiencies in plans currently covering insured children pose similar threats. The AAP believes that the United States must not sacrifice recent hard-won gains for our children and that child health care financing should be based on the following guiding principles: (1) coverage with quality, affordable health insurance should be universal; (2) comprehensive pediatric services should be covered; (3) cost sharing should be affordable and should not negatively affect care; (4) payment should be adequate to strengthen family- and patient-centered medical homes; (5) child health financing policy should promote equity and address longstanding health and health care disparities; and (6) the unique characteristics and needs of children should be reflected.