Transitions of care: An aerodigestive provider assessment survey.

OBJECTIVE: To create, validate, and apply an aerodigestive provider assessment survey. METHODS: A survey assessing provider knowledge and current practice in the transition of patients with chronic aerodigestive disorders from pediatric to adult care was drafted by a multidisciplinary expert panel. Once agreement of the initial survey items was obtained, the survey was distributed to a national multidisciplinary panel of aerodigestive experts for review. Responses from the national panel were systematically quantified and a content validity index (CVI) was calculated. A final survey was developed and distributed to pediatric and adult aerodigestive providers. RESULTS: From the initial 22 items presented to the national panel, 20 of the initial questions were included in the final instrument. Two additional questions were developed as a result of feedback from the expert panel. All items included in the survey had an Item Content Validity Index (I-CVI) of >0.85. The average Scale CVI in proportion to the average proportion of relevance (S-CVI/Ave) for the tool was 0.88. The average Scale CVI in proportion to universal agreement (S-CVI/UA) was 0.52. The survey was then administered to pediatric and adult specialty providers at our institution. Twenty-two providers completed the final survey. CONCLUSION: The content validity index measurements from this newly developed survey suggest that it is a valid tool for assessing current knowledge and practice in care transitions among patients with complex aerodigestive needs. The survey developed in this project has been used to identify knowledge gaps and process issues that can be addressed to ease the transition of adolescents from pediatric specialty care into adult specialty care.

Psychosocial Measures and Outcomes Among Caregivers of Children With Tracheostomies: A Systematic Review.

OBJECTIVE: Children with tracheostomies have complex medical issues that require long-term technology dependence and continuous medical care at home. Parents of tracheostomy-dependent children often assume the majority of their child's home care leading to a shift in family dynamics and a decrease in caregiver quality of life. This systematic review sought to identify instruments to measure caregiver psychosocial outcomes after their child's tracheostomy and report on the findings. DATA SOURCES: A systematic review was performed using Medline, CINAHL, and EMBASE. REVIEW METHODS: Studies that evaluated psychosocial outcomes in caregivers of tracheostomy-dependent children were included. RESULTS: We screened a total of 1286 nonduplicate records to include a total of 12 studies assessing the psychosocial outcomes of parents of tracheostomy-dependent children. Fourteen instruments were identified. Caregivers reported lower quality of life when compared to other chronic caregiver groups. They experienced high degrees of stress, struggled to cope individually and as a family unit, and experienced decision regret and conflict. CONCLUSION: Findings from this review suggest a significant impact on caregiver psychosocial well-being, but few quantitative studies investigated this dynamic with measures validated in this caregiver population. This review demonstrates the need for longitudinal studies using validated tools to assess the long-term impacts and outcomes of caregivers of the tracheostomy-dependent child.

Growing Up After Adolescent Bariatric Surgery.

This study investigates the effects of adolescent bariatric surgery among young adults approximately 10 years post-surgery. Participants were recruited from a hospital-based bariatric registry. We used an exploratory, qualitatively-driven mixed methods design. Findings were integrated with medical chart data and the SF-36, Body QoL, and the Transition Readiness Assessment Questionnaire. Of the 22 participants who completed surveys (14 females and 8 males), 20 participants also completed a phone interview. Median participant age was 25 years (range = 19-30). Median weight-loss was 23% (6.0%‒58%). Four themes emerged: taking control, weight loss challenges, body image adjustment, and growing up. Participants reported physical benefits of surgery yet were challenged by eating habits, body image, and interpersonal relationships. Participants were indifferent to preventative healthcare, despite the potential for vitamin deficiencies and the return of weight-related comorbidities. Clinicians can facilitate the transition to young adulthood by providing continued mental support, education, and medical monitoring.

Overwhelmed to ownership: The lived experience of parents learning to become caregivers of children with tracheostomies.

BACKGROUND: Caring for a child with a tracheostomy is challenging and requires parents to master advanced medical skills, often without prior medical training. Tracheostomy education programs are well-established, yet the experience of parents becoming competent caregivers is unexplored. Providing effective education may impact long-term child and caregiver outcomes and mitigates preventable hospital readmissions. OBJECTIVE: This study aimed to explore parents' experience completing tracheostomy education within a children's hospital and understand the factors that promote or hinder learning. METHODS: We conducted a qualitative descriptive study on twenty-three purposively sampled parents of children with new tracheostomies from 2020 to 2021 who were admitted to the Transitional Intensive Care Unit (TICU) at a quaternary pediatric hospital. Semi-structured interviews were conducted after parents completed tracheostomy education and before discharge. Inductive thematic analysis was employed to identify themes and subthemes. RESULTS: Five major themes emerged: decision making, balancing benefits, becoming a caregiver, healthcare providers (HCPs) as barriers and facilitators for learning, and recommendations for tracheostomy education programs. Parents described becoming a caregiver in four stages: initial realization, overwhelmed, owning care, and role transition. Learning tracheostomy management in a positive, collaborative, supportive environment helped parents be more confident in their skills and eased their transition to home. Previous life experience, learning style, and healthcare professional behaviors influenced parents' transition into the caregiver role. CONCLUSIONS: Findings will inform interventions for improving pediatric tracheostomy education programs, including the HCP's role in supporting families. Equipping caregivers with the skills to provide tracheostomy interventions in the home could decrease preventable readmissions and improve outcomes in this medically fragile, high-risk pediatric population.

Parent and Child Anxiety Evaluated During an Early Period of the COVID-19 Pandemic: A Mixed-Methods Study.

Purpose: The objective of this study was to explore parent and child anxiety during the pandemic. Unlike previous pandemics, measures implemented to prevent the transmission of the SARS-CoV-2 virus have been much more limiting. Methods: An explanatory convergent mixed-methods design was used to describe anxiety of children 9-17 years of age and their parents during August-October 2020. Adult and child versions of State-Trait Anxiety Inventory (STAI) were used to examine levels as measured on STAI's state-anxiety subscale. Web-based interviews with a subset of patients were conducted qualitatively to analyze anxiety-related themes. Results: A total of 188 parents and 140 children responded to the questionnaires. Mean overall anxiety scores for parents (49.17 [standard deviation: 12.247]) and children (35.43 [standard deviation: 7.894]) were higher than published norms. Parent and child anxiety were positively correlated (r=0.36; P=0.01). From interviews with 11 parents and 11 children; 4 major themes and 10 subthemes describing physical and emotional outcomes resulting from limited social contact, work and family role strain, and uncertainty about COVID-19 were identified. Conclusions: Parents and children reported elevated anxiety levels during the COVID-19 pandemic. Findings of this study can guide the development of strategies that mitigate the negative impact of isolation, role strain, and uncertainty related to future public health crises.

Exploring Latino Perspectives in Childhood Fever: Beliefs, Practices, and Needs.

INTRODUCTION: Latino parents have significant knowledge gaps and misconceptions about fever. In this study, we explored Latino beliefs and practices around fever and its impact on their care decisions. METHODS: A qualitative-focused ethnography was conducted with 21 Latino parents. Semi-structured interviews were completed, and inductive thematic analysis was used to identify themes and subthemes. RESULTS: Three major themes emerged: (a) the meaning of fever; (b) seeking guidance; and (c) navigating fever. Subthemes included: a sign of folk illness, a sign of infection, trust in health care providers, watchful waiting, and barriers and needs. DISCUSSION: Latino parents have significant knowledge gaps about the role of fever in illness. They engage multiple systems of care but rarely share their fears with health care providers. Culturally-sensitive interventions incorporating traditional and biomedical approaches are needed. Findings can help inform future interventions targeting knowledge gaps in this population.

Association of Social Determinants of Health With Rapid Response Events: A Retrospective Cohort Trial in a Large Pediatric Academic Hospital System.

Background: Social determinants of health (SDH) are known to impact hospital and intensive care unit (ICU) outcomes. Little is known about the association between SDH and pediatric rapid response (RR) events and understanding this impact will help guide future interventions aimed to eliminate health disparities in the inpatient setting. Objectives: The primary objective of this study is to describe the association between SDH and RR utilization (number of RR events, time to RR event, shift of event and caller). The secondary objective is to determine if SDH can predict hospital length of stay (LOS), ICU transfer, critical deterioration (CD), and mortality. Methods: A retrospective cohort study was conducted. We reviewed all RR events from 2016 to 2019 at a large, academic, pediatric hospital system including a level 1 trauma center and two satellite community campuses. All hospitalized patients up to age 25 who had a RR event during their index hospitalization were included. Exposure variables included age, gender, race/ethnicity, language, income, insurance status, chronic disease status, and repeat RR event. The primary outcome variables were hospital LOS, ICU transfer, CD, and mortality. The odds of mortality, CD events and ICU transfer were assessed using unadjusted and multivariable logistic regression. Associations with hospital LOS were assessed with unadjusted and multivariable quantile regression. Results: Four thousand five hundred and sixty-eight RR events occurred from 3,690 unique admissions and 3301 unique patients, and the cohort was reduced to the index admission. The cohort was largely representative of the population served by the hospital system and varied according to race and ethnicity. There was no variation by race/ethnicity in the number of RR events or the shift in which RR events occurred. Attending physicians initiated RR calls more for event for non-Hispanic patients of mixed or other race (31.6% of events), and fellows and residents were more likely to be the callers for Hispanic patients (29.7% of events, p = 0.002). Families who are non-English speaking are also less likely to activate the RR system (12% of total RR events, p = 0.048). LOS was longest for patients speaking languages other than Spanish or English and CD was more common in patients with government insurance. In adjusted logistic regression, Hispanic patients had 2.5 times the odds of mortality (95% CI: 1.43-4.53, p = 0.002) compared with non-Hispanic white patients. Conclusion: Disparities exist in access to and within the inpatient management of pediatric patients. Our results suggest that interventions to address disparities should focus on Hispanic patients and non-English speaking patients to improve inpatient health equity. More research is needed to understand and address the mortality outcomes in Hispanic children compared to other groups.

Longitudinal Evaluation of a Pediatric Rapid Response System with Realist Evaluation Framework.

BACKGROUND: Rapid response (RR) systems' impact on clinical outcomes is influenced by institutional social factors. This study applied the realist evaluation (context-mechanism-outcomes) framework to review significant RRs defined as REACT (Rapid Escalation After Critical Transfer) events for appraising a pediatric RR system. METHODS: REACT events included all RRs with cardiopulmonary arrest (CPA) and/or ventilation and/or hemodynamic support instituted within 24 hours after RR. A continuous quality improvement process was employed to identify, debrief, and review REACT events to recognize and act on RR mechanistic and contextual deficiencies. The aim was to decrease REACT events with mechanistic/contextual gaps categorized into crisis resource management (CRM) themes by 25% over three years while ensuring process sustainability. RESULTS: From 2015 to 2019, 5,581 RR events occurred, of which 67.2% transferred to ICU, and 1,392 (24.9%) were identified as REACTs. In the first two years, 100% identification and review within three months of 90% REACTs was accomplished. One hundred percent of the 17 providers ascertained that the process was safe and transparent, and 80.0% of respondents expressed their commitment from perceived benefit to patient care. Over five years, the proportion of REACTs with CRM gaps decreased from 62.3% to 26.5%, those with multiple deficiencies reduced from 72.5% to 23.2%, and CPAs outside ICUs decreased from 15 to 3 per year. Improvement actions included modifications to RR system (activation, process, and management), hospital (resources and policies), dedicated RR training, and sharing of positive feedback. CONCLUSION: The realist evaluation framework facilitated holistic assessment of an RR system. Review of REACTs was feasible, sustainable, and yielded useful information to guide systemwide improvement.

Perceived Impacts, Acceptability, and Recommendations for Ecological Momentary Assessment Among Youth Experiencing Homelessness: Qualitative Study.

BACKGROUND: The use of ecological momentary assessment (EMA) to study youth experiencing homelessness (YEH) behaviors is an emerging area of research. Despite high rates of participation and potential clinical utility, few studies have investigated the acceptability and recommendations for EMA from the YEH perspective. OBJECTIVE: This study aimed to describe the perceived benefits, usability, acceptability, and barriers to the use of EMA from the homeless youth perspective. METHODS: YEH were recruited from a larger EMA study. Semistructured exit interviews were performed using an interview guide that focused on the YEH experience with the EMA app, and included perceived barriers and recommendations for future studies. Data analyses used an inductive approach with thematic analysis to identify major themes and subthemes. RESULTS: A total of 18 YEH aged 19-24 years participated in individual and group exit interviews. The EMA was highly acceptable to YEH and they found the app and EMA surveys easy to navigate. Perceived benefits included increased behavioral and emotional awareness with some YEH reporting a decrease in their high-risk behaviors as a result of participation. Another significant perceived benefit was the ability to use the phones for social support and make connections to family, friends, and potential employers. Barriers were primarily survey and technology related. Survey-related barriers included the redundancy of questions, the lack of customizable responses, and the timing of survey prompts. Technology-related barriers included the "freezing" of the app, battery charge, and connectivity issues. Recommendations for future studies included the need to provide real-time mental health support for symptomatic youth, to create individually customized questions, and to test the use of personalized motivational messages that respond to the EMA data in real time. CONCLUSIONS: YEH are highly receptive to the use of EMA in studies. Further studies are warranted to understand the impact of EMA on YEH behaviors. Incorporating the YEH perspective into the design and implementation of EMA studies may help minimize barriers, increase acceptability, and improve participation rates in this hard-to-reach, disconnected population.

Hispanic Parental Beliefs and Practices in the Management of Common Childhood Illnesses: A Review of the Literature.

Introduction: Hispanic parents are more likely to perceive common childhood illnesses as serious and needing immediate attention compared with other groups. The purpose of this review is to describe the factors that influence Hispanic parental management of common childhood illnesses. Method: A systematic search of PubMed, PsycINFO, and Cumulative Index of Nursing and Allied Health Literature was conducted. Studies were screened and reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines. Results: Fifteen studies met the inclusion criteria for synthesis. Key findings include the following: (a) parental fears around common illnesses, (b) belief in folk illnesses, (c) use of traditional healers and remedies, (d) family members as a source of health information, (e) medical pluralism, and (f) barriers to care. Conclusion: Hispanic parents simultaneously engage both biomedical and folk spheres of treatment. More current research is needed to understand Hispanic beliefs and practices and to formulate culturally sensitive interventions in this population.

Nursing and Respiratory Collaboration Prevents BiPAP-Related Pressure Ulcers.

In early 2012, an increase in the incidence of BiPAP-related pressure ulcers was noted in the progressive care unit of a large pediatric facility. An interdisciplinary team of nursing and respiratory staff and leadership formed a collaborative to address the gaps in practice, recommend, and implement evidence-based interventions using a quality improvement model. Interventions included piloting new masks, changing the skin barrier from a hydrocolloid dressing to a foam dressing and using a template for better fit, including skin assessments every 4 hours as part of nursing and respiratory therapists' workflow, and implementing a notification process that included Wound Ostomy Continence Nurses, respiratory, and nursing leadership for any redness of skin noted. Weekly rounding and communication by nursing and respiratory leadership ensured consistency and sustainability of practice. Aside from implementation of interventions, the primary focus was to develop a collaborative relationship between nursing and respiratory teams for shared ownership and accountability of patients on BiPAP support. Three months after the implementation of interventions, the occurrence of BiPAP-related pressure ulcers decreased from eleven in the first three quarters to one occurrence in the fourth quarter of fiscal year (FY) 2012. In 2013, the occurrence decreased to five for the entire fiscal year. Since the end of FY 2013, there has only been one occurrence of a BiPAP-related pressure ulcer in the progressive care unit. Close collaboration between respiratory and nursing has been the primary factor in decreasing BiPAP-related pressure ulcers. An important lesson learned is that interdisciplinary collaboration leads to improved patient outcomes.