Development and validation of the caregiver Burden from infant home NGT care instrument.

OBJECTIVE: To design and validate an age and condition-specific health status instrument to best reflect the parental experience caring for these children with complex needs and home Nasogastric Tube (NGT) placement. STUDY DESIGN: Combined Qualitative and Quantitative design, testing and implementation for item production and reduction, followed by formal validation by evaluating validity, reliability, and establishing a clinically meaningful change score. SETTINGS: Tertiary care, multi-disciplinary aerodigestive center. PARTICIPANTS: All caregivers whose infant met criteria for eligibility for discharge home from the NICU or Special Care Nursery (SCN) with NGT in place were offered inclusion in this group. Intervention/Exposure: Structured qualitative interviews of these caregivers to explore and define these concepts and domains, to item generate and then reduce, and then psychometric analyses. METHODS: Structured, moderated qualitative interviews with parents/caregivers of children who have undergone home NGT care of their children for item creation, design, and then reduction. Reliability was assessed by Cronbach alpha analysis. Construct validity and clinically meaningful change score was assessed using various query methods. MAIN OUTCOME MEASURES: Cronbach's alpha to assess reliability, a priori hypotheses validity analyses, and minimally important clinical difference calculation. RESULTS: Scaled scores of this condition specific instrument ranged from 14 to 74 where higher scores indicate better QOL related to managing the NGT. Cronbach's alpha with all 14 items was 0.93. Validity was assessed by a self-assessment question to discriminate between change (95% CI: 8.5-14.1; p < 0.0001) as well as by other comparators to identify the instrument's ability to discriminate among populations where parents felt a difference in experience. The minimally important difference was calculated at 18 points. CONCLUSION: This represents the initial validation of the first condition and age-specific health status instrument to assess parent experience of caring for infants requiring a home NGT for dysphagia.

Overcoming language barriers in pediatric care: a multilingual, AI-driven curriculum for global healthcare education.

Background: Online medical education often faces challenges related to communication and comprehension barriers, particularly when the instructional language differs from the healthcare providers' and caregivers' native languages. Our study addresses these challenges within pediatric healthcare by employing generative language models to produce a linguistically tailored, multilingual curriculum that covers the topics of team training, surgical procedures, perioperative care, patient journeys, and educational resources for healthcare providers and caregivers. Methods: An interdisciplinary group formulated a video curriculum in English, addressing the nuanced challenges of pediatric healthcare. Subsequently, it was translated into Spanish, primarily emphasizing Latin American demographics, utilizing OpenAI's GPT-4. Videos were enriched with synthetic voice profiles of native speakers to uphold the consistency of the narrative. Results: We created a collection of 45 multilingual video modules, each ranging from 3 to 8 min in length and covering essential topics such as teamwork, how to improve interpersonal communication, "How I Do It" surgical procedures, as well as focused topics in anesthesia, intensive care unit care, ward nursing, and transitions from hospital to home. Through AI-driven translation, this comprehensive collection ensures global accessibility and offers healthcare professionals and caregivers a linguistically inclusive resource for elevating standards of pediatric care worldwide. Conclusion: This development of multilingual educational content marks a progressive step toward global standardization of pediatric care. By utilizing advanced language models for translation, we ensure that the curriculum is inclusive and accessible. This initiative aligns well with the World Health Organization's Digital Health Guidelines, advocating for digitally enabled healthcare education.

Parental experience of hypoglossal nerve stimulator implantation in adolescents with Down Syndrome and obstructive sleep apnea.

PURPOSE: The purpose of this study is to explore the experience of parents in deciding whether to participate in a clinical trial of the insertion of the Hypoglossal Nerve Stimulator (HNS) to treat their adolescent with Down Syndrome (DS) and Obstructive Sleep Apnea (OSA). DESIGN AND METHODS: A qualitative descriptive design with interviews was used to gather parental experiences from those who consented to HNS for their adolescent with DS and OSA. Interviews were conducted, audiotaped, and transcribed. Basic content analysis was followed to interpret the data. Using a process of data debriefing/engagement, codes were generated, and field/reflective notes were used to assure trustworthiness of the data. RESULTS: Parents, 13 mothers/2 fathers, participated. Three themes were identified: Parents experience desperation about acceptance of standard of care for their adolescent with DS and OSA. This desperation led parents to seek information/insights from social media and they came to rely on those sites to explore options, ultimately leading them to HNS clinical trial. Finally, parents had a desire to share experience with HNS implantation. CONCLUSIONS: Parents described being desperate at acceptance of standards of care for OSA. They shifted reliance on experts and parents by searching social media pages to explore options for treatment of OSA. Parents wished to share experiences with the HNS implantation. PRACTICE IMPLICATIONS: Nurses play a role in preparing for the HNS by instructing/educating parents. Nurses can identify supportive social media sites for parents during the HNS decision and suggest ways to measure outcomes of HNS.

A low-cost educational intervention to reduce unplanned extubation in low-resourced pediatric intensive care units.

INTRODUCTION: Unplanned extubation (UE) is orders of magnitude worse in low-income Pediatric Intensive Care Units (PICUs) than their high-income counterparts. Furthermore, a significant percent (20 %) of UEs result in a destabilizing event or cardiac collapse that negatively contributes to morbidity and mortality. As the principles of safe airway management are universal, we hypothesize that a multi-disciplinary educational intervention bundle which included provision of low-cost cuffed endotracheal tubes (ETT) and ETT tape will decrease the rate of unplanned extubation (UE) in a low-resourced PICU. METHODS: This is a pre-post interventional study powered to evaluate UE of intubated pediatric patients in an El Salvadorian PICU after a multi-disciplinary educational effort and provision of low-cost disposable materials. A multidisciplinary (otolaryngologists, intensivists, anesthesiologists, respiratory therapists, and nurses) educational curriculum involving hands on training, online video modules readily available via bedside QR codes, and pre- and post-testing was administered. The cost of the intervention materials was $1.32 per child. PICU mortality was evaluated as an exploratory outcome. RESULTS: Nine-hundred and fifty-seven (859 pre-intervention and 98 post-intervention) patients met inclusion criteria. Patients with one or more UEs decreased significantly from 29.4 % to 17.3 % post-intervention (p = 0.01; CI: 0.28-0.88) with an odds ratio of 0.51. The use of a cuffed ETT increased from 12 % to 36 % (p < 0.001; CI: 0.17-0.44; OR:3.74) and cuffed ETT use was associated with a reduction in UE with an odds ratio of 0.40 (p < 0.001; CI: 0.24-0.66). Finally, there was a 4.3 % decrease in pediatric mortality from 26.7 % to 22.4 % that equates to a number needed to treat to prevent a single child mortality of 23. Therefore, the ICER per mortality prevented is $30.7 and the ICER per Disability Adjusted Life Year (DALY) is $0.44. CONCLUSION: This multi-faceted intervention bundle is an accessible, scalable, cost-effective means to reduce UE and has implications in reducing global pediatric mortality.

A Sustainable and Scalable Multidisciplinary Airway Teaching Mission: The Operation Airway 10-Year Experience.

OBJECTIVE: To address whether a multidisciplinary team of pediatric otolaryngologists, anesthesiologists, pediatric intensivists, speech-language pathologists, and nurses can achieve safe and sustainable surgical outcomes in low-resourced settings when conducting a pediatric airway surgical teaching mission that features a program of progressive autonomy. STUDY DESIGN: Consecutive case series with chart review. SETTING: This study reviews 14 consecutive missions from 2010 to 2019 in Ecuador, El Salvador, and the Dominican Republic. METHODS: Demographic data, diagnostic and operative details, and operative outcomes were collected. A country's program met graduation criteria if its multidisciplinary team developed the ability to autonomously manage the preoperative huddle, operating room discussion and setup, operative procedure, and postoperative multidisciplinary pediatric intensive care unit and floor care decision making. This was assessed by direct observation and assessment of surgical outcomes. RESULTS: A total of 135 procedures were performed on 90 patients in Ecuador (n = 24), the Dominican Republic (n = 51), and El Salvador (n = 39). Five patients required transport to the United States to receive quaternary-level care. Thirty-six laryngotracheal reconstructions were completed: 6 single-stage, 12 one-and-a-half-stage, and 18 double-stage cases. We achieved a decannulation rate of 82%. Two programs (Ecuador and the Dominican Republic) met graduation criteria and have become self-sufficient. No mortalities were recorded. CONCLUSION: This is the largest longitudinal description of an airway reconstruction teaching mission in low- and middle-income countries. Airway reconstruction can be safe and effective in low-resourced settings with a thoughtful multidisciplinary team led by local champions.

Family-Centered Information Dissemination: A Multidisciplinary Virtual COVID-19 "Town Hall".

Significant misinformation about COVID-19 has been spread on the internet. Parents of children with complex aerodigestive problems have a hard time understanding the information they encounter on the internet and the news media and interpreting how it relates to their child's complex needs. Our multidisciplinary team, at the suggestion of a parent, hosted 3 virtual "town halls" in which families could ask questions directly of pediatric otolaryngology, pediatric pulmonology and case management in order to efficiently obtain factual evidence-based up-to-date advice. The information discussed at the town halls was then annotated and disseminated via active, parent-run aerodigestive social media forums. The information disseminated via the town halls reached 4787 Facebook participants.

Quantifying the benefits from a care coordination program for tracheostomy placement in neonates.

OBJECTIVE: Value-based care models are becoming instrumental in structuring clinical care delivery in our healthcare climate. Our objective was to determine the value associated with implementation of a Family-Centered Care Coordination (FCCC) program for neonates undergoing tracheostomy. METHODS: A multi-disciplinary FCCC program was implemented at the Massachusetts Eye and Ear Infirmary and MassGeneral Hospital for Children in January 2013. This program is designed to ensure a safe transition out of the hospital for children undergoing tracheostomy, reduce re-admission rates, and increase caregiver quality of life (QOL). Study participants included neonates undergoing tracheostomy in 2012 and 2015. This retrospective cohort study examined length of stay (LOS), utilized time-driven activity-based costing to estimate the cost of care, assessed caregiver QOL with 1-month Pediatric Tracheostomy Health Status Instrument (PTHSI) scores, and assessed complications with 6-month Medical Complications Associated with Pediatric Tracheostomy (MCAT) scores. RESULTS: Following implementation of the FCCC program, average LOS decreased from 30.5 days (range 17-39) to 16.6 days (range 9-23). The largest process improvement (cost reduction of 61%) occurred in the discharge-planning phase. The overall cost per care cycle was reduced by 36%. A large clinically meaningful benefit was demonstrated for PTHSI (effect size 0.80) as well as MCAT scores (effect size 9.35). CONCLUSIONS: We demonstrated the higher outcomes, including reductions in caregiver burden and complication rates, and the lower costs associated with implementation of the FCCC program for neonates undergoing tracheostomy.

A multidisciplinary, video-based, curriculum for management of the intubated and surgical airway patient for a pediatric hospital in El Salvador.

OBJECTIVE: Primary objective is to determine the rate of intubation with inappropriately sized endotracheal tubes (ETTs) in a pediatric intensive care unit (PICU) in El Salvador. Secondary objective is to determine effectiveness of a video-based curriculum to teach local providers on pediatric advanced airway management and surgical approach to patients requiring airway reconstruction. METHODS: Data for 296 intubated pediatric patients was collected over a six month period in a 16-bed PICU in El Salvador. Results of a learning behavior assessment survey completed by local healthcare workers informed a curriculum to complement on-site education during annual surgical airway mission trips. The video-based curriculum addressed proper sizing and use of cuffed endotracheal tubes, care of the intubated child and perioperative considerations of the surgical airway patient. Providers completed pre and post-curriculum quizzes to measure knowledge acquisition. RESULTS: Over 6-months, 281 patients were intubated. Sixty-three percent had improperly sized ETTs. Thirty-one percent had a failed or accidental extubation. All-cause mortality was 24%. One hundred and fifty-nine Salvadorian providers completed a learning behavior survey informing a video-based curriculum. Sixty-four providers completed the curriculum. Post-curriculum quiz scores increased by 18.7%. Surgeons, anesthesiologist, intensivists and speech pathologists demonstrated significant improvement (p < 0.05). CONCLUSION: Nearly two-thirds of intubated patients in a PICU in El Salvador have improperly sized ETTs and one-third require reintubation following planned or accidental extubation. The development of this first of its kind video-based curriculum for critical care and surgical training regarding how to properly care for the intubated child is coupled with the development of a longitudinal database to record pediatric airway related morbidity and mortality in the largest pediatric hospital in El Salvador. This model and system can be used to track the reduction in airway related morbidity and mortality directly related to a systems based intervention both in El Salvador and then elsewhere.

A quality study of family-centered care coordination to improve care for children undergoing tracheostomy and the quality of life for their caregivers.

IMPORTANCE: Approximately 4000 U.S. children undergo tracheostomy yearly [1], and these surgeries often result in hospital re-admissions that have definite cost and caregiver burdens due to complications that are avoidable with proper training and support. OBJECTIVE: To assess the impact of a Family-Centered Care Coordination (FCCC) program on the quality of care received by children undergoing tracheostomy and their caregivers. DESIGN: Caregivers of children undergoing tracheostomies from January 2012 to January 2013 and then a different set of caregivers of children undergoing tracheostomies from January 2015 to January 2016 completed both the Pediatric Tracheostomy Health Status Instrument (PTHSI) 1 month after discharge and the Medical Complications Associated with Pediatric Tracheostomy (MCAT) questionnaire 6 months after initial tracheostomy. To assess complication rates, these same sets of caregivers were asked to complete the MCAT and only those who provided complete medical data for all 6 months were included for comparative analysis. SETTING: The PTHSI and MCAT were administered at Massachusetts Eye and Ear in a hospital setting. PARTICIPANTS: Ten caregivers of children undergoing tracheostomies completed the PTHSI before FCCC program implementation and12 caregivers then completed the PTHSI after FCCC implementation. For each of the 2 groups, 5 caregivers provided complete data on the MCAT questionnaires. EXPOSURES: FCCC is a collection of programs, policies, and tools designed to ensure safe transition home for children undergoing tracheostomies, reduce re-admission rates, and minimize "caregiver burden". MAIN OUTCOMES AND MEASURES: The PTHSI is a validated caregiver quality of life instrument that was supplemented by the MCAT which records post-discharge medical issues following tracheostomy that relate specifically to the tracheotomy placement. RESULTS: The time to first follow-up appointment decreased from 6.4 weeks (SD = 1.52) to 6 days (SD = 0.18) with FCCC implementation. The total MCAT scores decreased from 15.2 (SD = 1.1) to 1.3 (SD = 1.3) (Wilcoxon sum rank test: P < 0.016) whereas neither PTHSI scores (P = 0.32) nor the specific caregiver burden domain (P = 0.18) demonstrated a significant change. CONCLUSIONS: and Relevance: By reducing the time to first follow-up after tracheostomy and by optimizing caregiver tracheostomy tube care and teaching, children's quality of care and caregiver burden can be significantly improved.

The Transitional Experience of Family Caring for Their Child With a Tracheostomy.

UNLABELLED: The purpose of this qualitative study was to describe the family experience of caring for their child with a tracheostomy due to a compromised airway during the transition from hospital to home, and to identify types of support that families request to be successful caregivers. DESIGN AND METHODS: This study used a qualitative descriptive design with focus groups to answer semi-structured interview questions. The investigators followed basic content analysis to interpret descriptive data using three-person consensus. RESULTS: Eighteen family members participated. Four themes emerged: "This is not the life I had planned: coming to accept the new reality;" "Don't make the hospital your home; don't make your home a hospital;" "Caregivers engage with providers that demonstrate competence, confidence, attentiveness, and patience;" and "Participants value the opportunity to give back and help others." CONCLUSIONS: Growth in the family caregiver role leads to personal transformation demonstrated by increased confidence, finding joy from their child, becoming an advocate for their child, and a resource for others. Family members described the transition to being 'in charge,' the relationship with the provider, and being able to advocate for getting the resources they needed in the home. PRACTICE IMPLICATIONS: Relationships are as critical as teaching skills to families during hospitalization. Family members see considerable value in connecting with care providers. In addition, there is a desire to share their experience with other families that are beginning a similar journey. Participants requested a support approach that included competent providers, Web-based video education for skills training, family-to-family connection, and continued family group support after discharge.

Understanding the challenges during transitions of care for children with critical airway conditions.

PURPOSE: The specific aim of this qualitative descriptive study was to gain an understanding of the challenges occurring during transitions of care between two institutions for children with critical airway conditions. METHODS: Qualitative descriptive methodology was utilized to analyze data from two focus groups conducted with nurses from two adjacent institutions. RESULTS: The focus groups were composed of 19 staff nurses, three case managers, one clinical nurse specialist and two nurse directors. Three themes emerged from the nurses' focus groups: Uncertainty with Diagnosis, Communication Between Healthcare Facilities and Family Members, and Parental Acceptance/Readiness to Learn. CONCLUSION: Nurses are in a unique position to improve both the quality and coordination of care to these children and their family members. An effort to improve transfer of care between institutions and nurses could reduce the combined length of stay for patients and reduce avoidable readmissions. Nurses are in a key position to enhance the competence, confidence, and comfort for family members and caretakers to exercise their post-discharge responsibilities. IMPLICATIONS FOR PRACTICE: Consistent, clear communication among health care providers and family members can improve care in this vulnerable population. These data identified need for further education of nurses.