Anxiety, distress, and pain in pediatric urodynamics.

AIMS: No one has assessed urodynamic studies (UDS) to determine those steps that elicit the greatest anxiety, distress, and pain in children. We sought to systematically evaluate a child's UDS experience to mollify these reactions. METHODS: Prospective study involving children aged ≥5 undergoing UDS over a 6-month period (from 10 December 2018 to 22 May 2019). Upon arrival, patients completed a visual analog scale for anxiety (VAS-A, 0-10) about the upcoming procedure. A research assistant assessed the patient's behavior during each major step of UDS using a validated brief behavioral distress scale. Nursing staff also obtained patients' pain ratings (0-10) for these key elements. Immediately after UDS, each child completed a posttest VAS-A along with a survey about the UDS experience. RESULTS: A total of 76 UDS were observed; almost half included sphincter needle electromyography (EMG). Mean patient VAS-A scores were 2.3 before UDS, compared to 0.8 afterward (P < .001). The highest proportion of distressful behaviors were observed during EMG needle (31%) and urethral catheter (29%) insertion, in agreement with the highest mean pain scores of 3.2 and 2.7, respectively. Fifty-four percent of children reported not being completely aware of what was going to happen before the procedure and 50% of those patients exhibited at least one interfering or potentially interfering behavior. Similarly, 60% of children with no prior history of UDS exhibited at least one interfering or potentially interfering behavior. CONCLUSIONS: EMG needle and urethral catheter placement, initial urodynamic testing and not knowing what to expect were associated with greater pain and distress during pediatric UDS.

Creation of a Novel Child Simulator and Curriculum to Optimize Administration of Seizure Rescue Medication.

INTRODUCTION: Although most cases of pediatric convulsive status epilepticus start in the prehospital setting, many patients do not receive treatment. The use of prehospital seizure rescue medications by caregivers is crucial, but studies suggest a lack of proper training on medication use. METHODS: We created a novel proof of principle mannequin and simulation for training proper administration of rectal diazepam, with a scoring paradigm to standardize and assess the educational process. RESULTS: Twenty-three health care providers (nurses and nurse practitioners, residents/fellows, and attending physicians) and 5 patient guardians/parents were included in the study. The rectal diazepam simulator displayed a high degree of physical and emotional realism (mean ≥ 4/5 on Likert scale survey) that effectively decreased time to treatment (-12.3 seconds; SD, 16.3) and improved the accuracy of medication delivery in a simulation setting (-4.2 points; SD, 3.1). The scoring technique had appropriate interrater reliability (≥86% on all but 2 prompts) and was a feasible instrument to assess the effectiveness of the educational intervention. CONCLUSIONS: A unique procedure-focused child simulator and rescue medication score offer an innovative and effective means to train caregivers on the use of lifesaving seizure rescue medications.

"Ready SIM Go": An Adapted Simulation "Service Line" for Patients and Caregivers.

SUMMARY STATEMENT: Changing healthcare systems and efforts to decrease medical costs have resulted in many more patients and caregivers (PCs) needing to manage life-sustaining therapies on their own. Given the potential for underpreparedness to result in increased morbidity and mortality, developing safe and efficient homecare training methods for PCs is essential. Medical simulation with PCs is an underused tool, which has the potential to decrease anxiety and increase preparedness through opportunities for repeated practice of medical procedures within a safe, controlled environment. This article describes the development of a hospital-based simulation service line for PCs, leveraging lessons learned from training for 250 patients and 450 caregivers in 14 different departments and subspecialties, and explains adaptations of standard simulation methods necessary for safe and effective use of simulation with this unique population. Process blueprint, examples of specific programs, as well as feedback from participants and clinicians are included.

Learning Gaps and Family Experience, Nurse-Facilitated Home Parenteral Nutrition Simulation-Based Discharge Training: Proof-of-Concept Study.

BACKGROUND: Home parenteral nutrition (HPN) is a life-sustaining therapy for children and adults suffering with severe digestive diseases, yet complications are commonplace, and predischarge trainings are variable. High-fidelity simulation training provides participants with an immersive experience using realistic equipment, supplies, and scenarios. Simulation training is rapidly becoming a potential gold standard for healthcare but is currently underutilized for families and caregivers. METHODS: We prospectively collected data on pediatric patients managed at a single HPN program from September 1, 2016, to September 30, 2018. Participants in a pilot simulation-based training program (orientation, high-fidelity mannequin, realistic homelike space, standardized clinical scenarios, and structured debriefing) were compared with historical controls. We excluded patients with short-term HPN use and strictly palliative goals of care. RESULTS: Nineteen (90%) families participated in the pilot initiative with a median (interquartile range) age of 0.9 (3.7) years and diagnosis of short-bowel syndrome in 14 (74%). During teaching scenarios, learning gaps were identified for aseptic needleless changes (53%), HPN equipment setup (84%) with specific difficulty adding multivitamin (32%), and dressing changes (63%). Thirty-day readmission rates in simulation-based training group vs historical cases were 42% vs 63% (P = not significant). There was no difference in length of stay between groups. All (100%) simulation-based training group participants would recommend this learning experience to others. CONCLUSION: HPN discharge training is a novel use for high-fidelity simulation to address family/caregiver satisfaction and to identify learning gaps. Further studies are needed to refine predischarge training materials and examine the impact on postdischarge outcomes.

SIMDiscovery: a simulation-based preparation program for adolescents undergoing spinal fusion surgery.

PURPOSE: Spinal fusion surgery is associated with high levels of stress and anxiety for patients and their caregivers. Medical simulation has demonstrated efficacy in improving preparedness, knowledge, and overall experience prior to other medical procedures. The current study examines the utility of a multi-faceted preparation program (SIMDiscovery) using simulation techniques to reduce anxiety and increase preparedness among patients undergoing spinal fusion surgery and their caregivers. METHODS: Participants attended SIMDiscovery where they received hands-on preparation about what to expect before, during, and after their surgery. Anxiety, preparedness, and knowledge about the procedure were assessed pre- and post-participation using self-report measures. Participants also completed a questionnaire at their first post-operative medical appointment. Differences from pre to post and between patients and caregivers were calculated with paired and independent sample t-tests. RESULTS: Participants included 22 patients and 29 caregivers. Post-SIMDiscovery, both groups demonstrated increased knowledge for the surgical process and lower state anxiety. Patients reported increased feelings of preparedness in all areas while caregivers reported increased feelings of preparedness in most areas. Families continued to report positive impact of the program 30 days after surgery; however, they also identified areas where they desired increased preparation. CONCLUSIONS: SIMDiscovery increased patients' and caregivers' knowledge regarding spinal fusion surgery and helped them feel less anxious and more prepared regarding most aspects of the surgical process. These changes were generally maintained throughout the post-operative period. Participants identified areas for increased preparation, highlighting the importance of continuing to adapt programs based on patient and family feedback. LEVEL OF EVIDENCE: Level III.

"This Is How Hard It Is". Family Experience of Hospital-to-Home Transition with a Tracheostomy.

Rationale: Expansion of chronic ventilation options and shared decision-making have contributed to an increasing population of technology-dependent children. One particularly vulnerable group is children with tracheostomy who depend on technology for basic respiratory functions. Chronic critical care is now provided in the homecare setting with implications for family caregivers.Objectives: This study explores the experience of family caregivers of children and young adults with a tracheostomy during the transition from hospital to home care. We sought to identify the specific unmet needs of families to direct future interventions.Methods: We recruited a convenience sample of families from an established home ventilation program to participate in semistructured interviews. Sessions were conducted in person or via teleconference. A grounded-theory qualitative analysis was performed.Results: Between March 2017 and October 2018, we interviewed 13 individuals representing 12 families of children and/or young adults with tracheostomy. Patients ranged in age from 9 months to 28 years, had a tracheostomy for 8 months to 18 years, and represented a variety of underlying diagnoses. Five key themes emerged: 1) navigating home nursing; 2) care coordination and durable medical equipment (DME) impediments; 3) learning as a process; 4) managing emergencies; and 5) setting expectations.Conclusions: Our findings support the need for family-centered discharge processes including coordination of care and teaching focused on emergency preparedness.

Social Robots for Hospitalized Children.

BACKGROUND AND OBJECTIVES: Social robots (SRs) are increasingly present in medical and educational contexts, but their use in inpatient pediatric settings has not been demonstrated in studies. In this study, we aimed to (1) describe the introduction of SR technology into the pediatric inpatient setting through an innovative partnership among a pediatric teaching hospital, robotics development, and computational behavioral science laboratories and (2) present feasibility and acceptability data. METHODS: Fifty-four children ages 3 to 10 years were randomly exposed to 1 of 3 interventions: (1) interactive SR teddy bear; (2) tablet-based avatar version of the bear; or (3) plush teddy bear with human presence. We monitored intervention enrollment and completion patterns, obtained qualitative feedback on acceptability of SR use from child life-specialist stakeholders, and assessed children's positive and negative affect, anxiety, and pain intensity pre- and postintervention. RESULTS: The intervention was well received and appeared feasible, with 93% of those enrolled completing the study (with 80% complete parent data). Children exposed to the SR reported more positive affect relative to those who received a plush animal. SR interactions were characterized by greater levels of joyfulness and agreeableness than comparison interventions. Child life specialist stakeholders reported numerous potential benefits of SR technology in the pediatric setting. CONCLUSIONS: The SR appears to be an engaging tool that may provide new ways to address the emotional needs of hospitalized children, potentially increasing access to emotionally targeted interventions. Rigorous development and validation of SR technology in pediatrics could ultimately lead to scalable and cost-effective tools to improve the patient care experience.