Association between parental education level & outcomes for children with long-term ventilator dependence: Communication behaviors as moderating variables.

PURPOSE: The purpose of this study was to examine the correlation between parental education level and outcomes for children with long-term ventilator dependence (LTVD) and their families and whether parent communication behaviors with hospital nurses moderated the relationship. Advances in medical technology and policy changes allow children with LTVD to be cared for at home. The child's diagnosis and disease severity affect their health outcomes, as do their family's social determinants of health (SDoH) such as parent education. DESIGN AND METHODS: This secondary data analysis used chi-square tests to evaluate the correlation between parental education level and outcomes. Generalized linear mixed effect models were used to examine the moderation effect of parent communication behaviors. RESULTS: Lower parental education level was associated with more child respiratory infections and more parental uncertainty within one month following hospital discharge. Lower parent education level was also associated with fewer unplanned contacts with providers within one week post-discharge. Additionally, parent use of Verifying Understanding communication behaviors moderated the relationship between parental education level and number of respiratory infections and amount of parental uncertainty. Finally, parent use of Negotiating Roles moderated the association between education level and number of unplanned visits. CONCLUSIONS: Contradicting previous research, lower parental education level does not consistently correspond to adverse outcomes and may be explained by parents' determination to ensure optimal outcomes for their children with LTVD. PRACTICE IMPLICATIONS: Overall, healthcare providers should not be concerned that children with LTVD will have different outcomes based on their parents' education level.

Garnering effective telehealth to help optimize multidisciplinary team engagement (GET2HOME) for children with medical complexity: Protocol for a pragmatic randomized control trial.

BACKGROUND: Children and young adults with medical complexity (CMC) experience high rates of healthcare reutilization following hospital discharge. Prior studies have identified common hospital-to-home transition failures that may increase the risk for reutilization, including medication, technology and equipment issues, financial concerns, and confusion about which providers can help with posthospitalization needs. Few interventions have been developed and evaluated for CMC during this transition period. OBJECTIVE: We will compare the effectiveness of the garnering effective telehealth 2 help optimize multidisciplinary team engagement (GET2HOME) transition bundle intervention to the standard hospital-based care coordination discharge process by assessing healthcare reutilization and patient- and family-centered outcomes. DESIGNS, SETTINGS, AND PARTICIPANTS: We will conduct a pragmatic 2-arm randomized controlled trial (RCT) comparing the GET2HOME bundle intervention to the standard hospital-based care discharge process on CMC hospitalized and discharged from hospital medicine at two sites of our pediatric medical center between November 2022 and February 2025. CMC of any age will be identified as having complex chronic disease using the Pediatric Medical Complexity Algorithm tool. We will exclude CMC who live independently, live in skilled nursing facilities, are in custody of the county, or are hospitalized for suicidal ideation or end-of-life care. INTERVENTION: We will randomize participants to the bundle intervention or standard hospital-based care coordination discharge process. The bundle intervention includes (1) predischarge telehealth huddle with inpatient providers, outpatient providers, patients, and their families; (2) care management discharge task tracker; and (3) postdischarge telehealth huddle with similar participants within 7 days of discharge. As part of the pragmatic design, families will choose if they want to complete the postdischarge huddle. The standard hospital-based discharge process includes a pharmacist, social worker, and care management support when consulted by the inpatient team but does not include huddles between providers and families. MAIN OUTCOME AND MEASURES: Primary outcome will be 30-day urgent healthcare reutilization (unplanned readmission, emergency department, and urgent care visits). Secondary outcomes include 7-day urgent healthcare reutilization, patient- and family-reported transition quality, quality of life, and time to return to baseline using electronic health record and surveys at 7, 30, 60, and 90 days following discharge. We will also evaluate heterogeneity of treatment effect for the intervention across levels of financial strain and for CMC with high-intensity neurologic impairment. The primary analysis will follow the intention-to-treat principle with logistic regression used to study reutilization outcomes and generalized linear mixed modeling to study repeated measures of patient- and family-reported outcomes over time. RESULTS: This pragmatic RCT is designed to evaluate the effectiveness of enhanced discharge transition support, including telehealth huddles and a care management discharge tool, for CMC and their families. Enrollment began in November 2022 and is projected to complete in February 2025. Primary analysis completion is anticipated in July 2025 with reporting of results following.

Audiovisual Recording in the Inpatient Setting: A Method for Studying Parent-Nurse Communication.

Audiovisual recordings are under-utilized for capturing interactions in inpatient settings. Standardized procedures and methods improve observation and conclusion validity drawn from audiovisual data. This article provides specific approaches for collecting, standardizing, and maintaining audiovisual data based on a study of parent-nurse communication and child and family outcomes. Data were collected using audio and video recorders at defined time points simplifying its collection. Data were downloaded, edited for size and privacy, and securely stored, then transcribed, and subsequently reviewed to ensure accuracy. Positive working relationships with families and nurses facilitated successful study recruitment, data collection, and transcript cleaning. Barriers to recruitment and data collection, such as privacy concerns and technical issues, were successfully overcome. When carefully coordinated and obtained, audiovisual recordings are a rich source of research data. Thoughtful protocol design for the successful capture, storage, and use of recordings enables researchers to take quick action to preserve data integrity when unexpected situations arise.

Examining Children With Complex Care and Technology Needs in the Context of Social Determinants of Health.

Children with complex care and technology needs require daily, intensive care from family caregivers. These children are understudied, particularly in relation to the social determinants of health (SDOH) that affect their health, well-being, and quality of life. This paper examines the salient research on SDOH among this population, focusing on the Healthy People 2030 domains. Gaps in the research are identified and recommendations for future research, practice, policy, and education are presented. Pediatric nurses, advanced practice nurses, and other health care provider teams that care for these children and families can improve their health by examining and addressing SDOH.

A Description of Children Dependent on Long Term Ventilation via Tracheostomy and Their Hospital Resource Use.

PURPOSE: To describe the proportion of children with an index hospitalization in 2014 who had established long-term invasive ventilator dependence (LTVD), and determine regional variation in hospital length of stay, charges, and readmissions. DESIGN AND METHODS: Multicenter, longitudinal, retrospective cohort study using a recently established algorithm to identify children with LTVD from the Pediatric Health Information System database with an index hospitalization at least once during 2014, excluding normal newborn care or chemotherapy, and the subset with established LTVD. Hospitals were grouped by geographic regions. Analysis included descriptive statistics and multi-variable mixed modeling for length of stay, charges, and readmissions. RESULTS: Of the 615,883 unique children discharged from 45 children's hospitals in 2014, 2235 (0.4%) had established LTVD. Of these, 342 (15%) were hospitalized in the Northeast, 677 (30%) Midwest, 733 (32%) South and 481 (22%) West. Most had at least two complex chronic conditions (97%) and used a medical device for at least two body systems (71%). No statistically significant regional variation was found for length of stay, charges, or readmissions after adjustment for child demographics, admission type, disposition, primary diagnosis, ICU stay, and number of chronic conditions. CONCLUSIONS: This study characterized the population of children with LTVD hospitalized in 2014. No regional variation was found for length of stay, charges, or readmissions. PRACTICE IMPLICATIONS: Children with established LTVD make up a small subset of all children admitted to children's hospitals however, they require substantial, costly, multifaceted care as most have additional complex chronic conditions and require multiple medical devices.

The Parent Role in Advocating for a Deteriorating Child: A Qualitative Study.

BACKGROUND AND OBJECTIVES: Families of children with medical complexity are experts on their child's baseline behavior and temperament and may recognize changes in their hospitalized child's health before clinicians. Our objective was to develop a comprehensive understanding of how families identify and communicate their child's deteriorating health with the hospital-based health care team. METHODS: In this qualitative study, our multidisciplinary team recruited family members of hospitalized children with neurologic impairment. Interviews, conducted in the hospital, were audio recorded, deidentified, and transcribed. By using inductive thematic analysis, each transcript was independently coded by 3 or 4 team members. Members met regularly to reach consensus on coding decisions. Patterns observed were organized into themes and subthemes. RESULTS: Participants included 28 family members of 26 hospitalized children 9 months to 17 years of age. Children had a mean of 9 hospitalizations in the previous 3 years. Analysis resulted in 6 themes. First, families often reported their child "writes his own book," meaning the child's illness narrative rarely conformed to textbooks. Second, families developed informal, learned pathways to navigate the inpatient system. Third, families stressed the importance of advocacy. Fourth, families self-identified as "not your typical parents" and discussed how they learned their roles as part of the care team. Fifth, medical culture often did not support partnership. Finally, families noted they are often "running on empty" from stress, fear, and lack of sleep. CONCLUSIONS: Families of children with medical complexity employ mature, experience-based pathways to identify deteriorating health. Existing communication structures in the hospital are poorly equipped to incorporate families' expertise.

Identification of hospitalized tracheostomy and ventilator dependent patients in administrative data.

BACKGROUND: Patients with established tracheostomy and ventilator dependence are hospitalized more frequently and use more healthcare resources than other patients with complex chronic conditions. However, data to compare variation in hospitalization and resource use among patients in this population across the United States is deficient, partly due to the lack of structured methods to query national databases. AIM: Determine the best method for identifying the subset of children with established tracheostomy and ventilator dependence in Pediatric Health Information System (PHIS). HYPOTHESIS: A combination of identifiable characteristics coded in the PHIS database can be used to identify the population of patients with established tracheostomy and ventilator dependence who are admitted to the hospital. METHODS: This cross-sectional, retrospective cohort study used established methods to extract data from PHIS and assessed the sensitivity and specificity of an algorithm to identify patients with established tracheostomy and ventilator dependence as compared with a local registry of ventilator dependent patients. RESULTS: A newly created algorithm identified >90% of the 157 patients with established tracheostomy and ventilator dependence hospitalized at our organization during 2014. The sensitivity and specificity of the algorithm to identify these patients was 91% and 99%, respectively. CONCLUSIONS: This new algorithm can be used to reliably identify and further study healthcare utilization by this population of patients with established tracheostomy and ventilator dependence. In addition, future work can determine the applicability of this algorithm to other administrative datasets.

Exploration of Parent-Provider Communication During Clinic Visits for Children With Chronic Conditions.

INTRODUCTION: The purpose of this study was to explore the communication behaviors demonstrated by parents of children with chronic conditions and provider team members when communicating about the child's care in outpatient clinics using concepts from the Theory of Shared Communication (TSC). METHODS: This was a secondary data analysis of 30 previously recorded pediatric clinic visits. Communication among parents and provider team members was analyzed using a researcher-developed coding scheme based on the TSC. RESULTS: Provider team members dominated communication during clinic visits, showing more frequent use of asking, explaining, advocating, and negotiating behaviors than parents. Parents were engaged in communication with frequent asking, explaining, and advocating behaviors. DISCUSSION: Parents of children with chronic conditions and multidisciplinary providers demonstrated the communication behaviors of the TSC in an outpatient clinic setting. Provider dominance of communication in the clinic setting may disempower parents and impair relationships.

Integration of Parent and Nurse Perspectives of Communication to Plan Care for Technology Dependent Children: The Theory of Shared Communication.

PURPOSE: The purpose of this qualitative research study was to expand our understanding of the process of communication between parents of hospitalized technology dependent children and their nurses originally detailed in the Theory of Shared Communication (TSC). DESIGN AND METHODS: This grounded theory study was conducted with five parents of technology dependent children hospitalized in a large Midwestern children's hospital and nine nurses who care for technology dependent children admitted to the same hospital during July and August 2013. Semi-structured interviews and journals (parents only), field notes and a demographic survey were used to collect data which was analyzed using constant comparative analysis. RESULTS: Parents verified the concepts of the TSC and relationships among them. Nurses' perceptions of communication with parents reflected the same parent identified and verified concepts upon which the TSC was originally grounded including respect for own and other's expertise, asking, listening, explaining, advocating, verifying understanding and negotiating roles to achieve mutual understanding of the child's plan of care. The nurses' perceptions differed stylistically but not categorically from those of the parents. CONCLUSIONS: The addition of the nurse's perspectives to the verified TSC expands our understanding of this process of communication. PRACTICE IMPLICATIONS: With the integration of nurse and parent perspectives, the TSC can be used to enhance communication and care for hospitalized technology dependent children and their families.

Evolution of an Evidence Collaboration: From Initial Goals to Current Initiatives.

Best practices based on evidence are needed by every clinician to provide safe, effective, patient-centered care. Determining best practice for a given situation can be difficult. Ideally, the clinician understands how to critically appraise the relevant research, and integrates high-quality research with interdisciplinary clinical expertise and patient and family values and preferences to choose best care for an individual or family. At our organization, we are taking the integration of research, clinical expertise, and patient/family preferences and values to the next level by aligning the evidence work of multiple functional areas and disciplines to improve the safety and effectiveness of clinical practice. The Evidence Collaboration, an interdisciplinary community of practice, has evolved to meet the challenges of helping novices and experts of all disciplines identify, critically appraise, synthesize, and disseminate evidence to inform best practices for patients and families, staff, and institutional processes. By creating a common language for evidence work, resources such as the Let Evidence Guide Every New Decision system, and templates for dissemination, the Evidence Collaboration has moved the organizational culture toward one that encourages the use of evidence in all decisions. Our progress continues as we strive to include patients and families in the decisions about best practices based on evidence.

An integrative review of communication between parents and nurses of hospitalized technology-dependent children.

BACKGROUND: With advances in health care, the population of children who are technology-dependent is increasing and, therefore, the need for nurses to understand how best to engage in communication with the parents of these children is critical. Shared communication between the parents of hospitalized technology-dependent children and their nurses is essential to provide optimal care for the child. The components and behaviors of the parent-nurse communication process that improve mutual understanding of optimal care for the child had not previously been examined. RESEARCH QUESTION: Among parents of hospitalized technology-dependent children and their nurses, what communication behaviors, components, concepts, or processes improve mutual understanding of optimal care for the child? METHODS: An integrative review of both qualitative and quantitative studies was conducted. Key words including communication, hospitalized, nurse, parent, pediatric, and technology-dependent were used to search databases such as Cumulative Index to Nursing and Allied Health and Medline for years 2000-2014. The data regarding the process of parent-nurse communication were extracted as they related to the mutual understanding of optimal care for the child. The data were grouped into themes and compared across studies, designs, populations, and settings. RESULTS: Six articles were identified that provided information regarding the processes of shared communication among the parents of hospitalized technology-dependent children and their nurses. Providing clear information, involving parents in care decisions, trust and respect for each other's expertise, caring attitudes, advocacy, and role negotiation were all found to be important factors in shared parent-nurse communication. LINKING EVIDENCE TO ACTION: The results of this integrative review inform our understanding of the parent-nurse communication process. The findings provide nurses with an understanding of strategies to better engage in respectful, engaging, and intentional communication with parents of hospitalized technology-dependent children and improve patient outcomes.

The theory of shared communication: how parents of technology-dependent children communicate with nurses on the inpatient unit.

Care may be compromised for hospitalized technology-dependent children if nurses do not communicate with parents to include their knowledge in the child's plan of care. A qualitative study using grounded theory methodology was undertaken to identify parental perceptions and experiences of communication with nurses. The Theory of Shared Communication was the result of this study and includes questioning, listening, explaining, advocating, verifying understanding and negotiating roles to achieve the outcome of mutual understanding of the child's plan of care. Nurses should be aware of parent perceptions about communication when working with families to optimize the care they provide.

Evidence of improved quality of life with pediatric palliative care.

Pediatric nurses provide holistic family-centered care for children with life-limiting illnesses while being sensitive to children's growth and developmental needs. To learn how pediatric palliative care programs benefit children and their families, the following clinical question was asked: Among children with a life-limiting illness, does the use of a palliative care program compared with not using a palliative care program improve quality of life for patients and their families? Evidence from two studies found that palliative care services improve quality of life for children with life-limiting illness and their families in the areas of the child's emotional well-being and parental perception of preparation for the child's end of life, resulting in a low grade for the body of evidence. Future research should include high quality studies with larger sample sizes and control groups, and include children's perspectives--from both patients and siblings--to give a more complete picture of how best to improve their quality of life. A reliable tool is needed that includes a spiritual component and sensitive indicators specific to children with a life-limiting illness. Future research using this tool will more fully answer how palliative care services improve children's quality of life.

Reducing risk of harm from extravasation: a 3-tiered evidence-based list of pediatric peripheral intravenous infusates.

Extravasation of medications during peripheral intravenous (PIV) therapy can result in harm to pediatric patients. These medications have physical and/or biologic factors that cause tissue damage. To assist in clinical decisions when using these infusates, an evidence-based table of medications stratified by their relative risk of causing harm if extravasated was developed. Local data and experience, a systematic review of the pediatric literature, and measured pH and osmolality of common pediatric preparations of PIV infusates were used to create a 3-tiered table of PIV infusates categorized by relative risk of causing harm if extravasated.

Exploration of the relationships among medical health history variables and aspiration.

OBJECTIVES: (1) Determine the relationships among a family's specific answers to health history questions and their child's risk for aspiration as determined by a swallow study. (2) Identify key factors which may predict a child's risk for aspiration. METHODS: Answers to questions and results of Functional Endoscopic Evaluation of Swallow (FEES) and/or Video Swallow Study (VSS) for a sample of 198 children were collected. Subjects were categorized into groups: "aspiration", "penetration" or "no aspiration or penetration". Logistic regression modeling was used to determine the contribution of certain characteristics to the odds of aspiration. A model for predicting aspiration or penetration based on those characteristics was assessed. The sensitivity and specificity of the model in predicting aspiration and penetration was determined. RESULTS: One hundred ninety eight subjects had a FEES or VSS. Of these, 18% (n=36) aspirated and 21% (n=42) were found to have penetration. Many of the factors identified in the health history were found to be significantly associated with aspiration or penetration. The variables "demonstrated aspiration" (this included parent or caregiver seeing food in the tracheotomy tube or aspiration noted on a previous FEES or VSS) (p=0.02), "hypotonia" (p=0.02) and "tracheotomy" (p=0.001) were most predictive of aspiration. History of tracheotomy was found to have an inverse relationship with aspiration. "gastroesophageal reflux" (GER) (p=0.0007) was most significantly associated with penetration, followed by "prematurity" (p=0.03) and "developmental delays" (p=0.04). Based on the prediction model, the probabilities for a child with a history of combinations of the above variables to have aspiration or penetration were calculated. CONCLUSIONS: Significant relationships exist between aspiration or penetration and the family's answers about their child's medical history. Practitioners should consider a swallow assessment whenever a child has a history which includes variables with a strong association with aspiration or penetration.

Aspiration in children with CHARGE syndrome.

UNLABELLED: Patients with Coloboma, Heart defect, choanal Atresia, Retarded development, Genitorenal and Ear abnormalities (CHARGE) syndrome have been reported to be at high risk for aspiration and swallowing difficulties. Aspiration has been implicated as the most common cause of mortality in these patients. To date, however, aspiration and swallowing disorders in CHARGE patients have not been independently studied. OBJECTIVE: To determine the prevalence of aspiration and swallowing dysfunction in children with CHARGE syndrome. METHODS: A retrospective chart review of 30 children with CHARGE syndrome was performed. RESULTS: Eighteen (60%) children had aspiration observed on video swallow study (VSS), flexible endoscopic evaluation of swallowing (FEES), and/or had otherwise unexplained bronchiectasis noted on CT scan of the chest. Twenty-four children (80%) had evidence of abnormal swallowing such as laryngeal penetration, dyscoordination, poor bolus mobility, or pooling of secretions. CONCLUSION: Aspiration and swallowing dysfunction are common in children with CHARGE syndrome. Formal evaluation of swallowing function should be part of the standard otolaryngologic examination for these patients.

Final validation of the Pediatric Tracheotomy Health Status Instrument (PTHSI).

OBJECTIVE: We sought to describe the development and final testing of an instrument designed to evaluate the impact of tracheotomy on the health-related quality of life of affected families in whom a child has had a tracheotomy (the Pediatric Tracheotomy Health Status Instrument [PTHSI]). STUDY DESIGN: This cross-sectional study designed to analyze a disease-specific health status instrument to establish validity and reliability. RESULTS: The PTHSI was initially pilot tested in 130 families during a 3-month period from September through November 2000. After initial analysis and revision, from January 2001 through July 2001, 154 different families completed the revised instrument. The overall Cronbach's alpha coefficient for the instrument was 0.91, with domain-specific coefficients ranging from 0.66 for physical symptoms to 0.87 for caregiver stress and coping. Specific criterion validity analysis produced a Pearson correlation coefficient of 0.8 (P < 0.0001). Construct validity testing via Wilcoxon matched sum testing suggested statistically significant differences between subpopulations (P < 0.001). CONCLUSION: After initial testing and revision of the PTHSI, final instrument administration and analysis reveal the instrument to be valid and reliable. Future studies are planned to evaluate its responsiveness in longitudinal application.