Family-centered communication in pediatric sickle cell disease.

BACKGROUND: Individuals with sickle cell disease (SCD) experience systemic barriers in accessing high-quality care. Research suggests that patient/family-provider relationships are an important indicator of healthcare quality and can influence disease self-management and outcomes. The Patient Centered Communication (PCC) framework holds that patient/family-centered communication (e.g., eliciting, understanding, and validating patients' perspectives within their unique psychosocial contexts) contributes to improved family-provider relationships, as well as self-efficacy for disease management, adherence, and health outcomes. While the PCC framework has been useful in guiding the evaluation of patient/family-provider communication in other pediatric populations, it has not yet been applied in the context of pediatric SCD. This study aimed to use this framework to examine patient and family perceptions of communication with pediatric SCD healthcare providers. PROCEDURE: Total 17 caregivers (82% mothers, 94% Black/African American) and eight patients (62% female, aged 13-19 years, M = 16.50) completed semi-structured interviews. The PCC framework informed the development of a preliminary codebook. Thematic content analysis summarized family perspectives regarding communication with providers. RESULTS: For youth with SCD and their caregivers, specific themes related to family-centered communication included: reducing patient/family distress, supporting disease self-management efforts, facilitating information exchange and decision-making, and fostering positive and trusting relationships with providers. CONCLUSIONS: This study helps to address gaps in the literature related to patient/family-provider communication within pediatric SCD. Results underscore the importance of patient- and family-centered communication across pediatric SCD care. These findings can inform future research and clinical care initiatives to improve patient/family-provider interactions and health outcomes for this underserved population.

Who Gets Referred? A Pilot Study of Risk Stratification and Treatment Referral in Pediatric Headache Using the Pediatric Pain Screening Tool.

OBJECTIVE: Headaches are common among youth and are associated with significant negative outcomes. Despite advances in interdisciplinary treatments for youth with chronic pain, research suggests disparities in access to these services. METHODS: A total of 186 youth (M = 14.19 years old, 70.8% female) presenting to a neurology appointment at a children's hospital system were screened using the Pediatric Pain Screening Tool (PPST), a brief, validated measure to identify youth that may benefit from additional pain management services. RESULTS: Two-thirds of participants (n = 124, 66.7%) screened as medium or high risk on the PPST. Risk categorization did not vary by patient age or sex. A greater proportion of Hispanic/Latino patients were categorized as low-risk relative to non-Hispanic/Latino patients (55.6% vs. 30.1%), and a somewhat lower proportion of patients of color were categorized as medium-risk relative to White patients (14.0% vs. 30.5%). Three-quarters (n = 94, 75.8%) of patients who were screened as medium or high risk were not referred for any additional pain management services. Referrals did not vary by patient age or ethnicity. While not statistically significant, a lower proportion of males received referrals at both medium (8.3% vs. 17.6%) and high levels of risk (15.8% vs. 34.5%), and a greater proportion of youth of color who screened as medium risk received referrals relative to White youth categorized as medium risk (37.5% vs. 10.3%). CONCLUSION: Future research should continue to explore factors influencing decision-making regarding referral to specialized pain management services for youth with headache.

Collaboration to Improve Neuroprotection and Neuropromotion in the NICU: Team Education and Family Engagement.

The number of babies born extremely low birth weight surviving to be discharged home after experiencing the NICU continues to improve. Unfortunately, early sensory development for these babies occurs in an environment vastly different from the intended in-utero environment and places them at high risk of long-term neurodevelopmental and neurocognitive challenges. Our goal in the NICU must transition from simply discharge home to supporting the neurosensory development necessary for a thriving lifetime. To accomplish a goal of thriving families and thriving babies, it is clear the NICU interprofessional team must share an understanding of neurosensory development, the neuroprotective strategies safeguarding development, the neuropromotive strategies supporting intended maturational development, and the essential nature of family integration in these processes. We share the educational endeavors of 11 center collaboratives in establishing the foundational knowledge necessary to support preterm babies and their families.

Longitudinal Relations between Beliefs Supporting Aggression,Anger Regulation, and Dating Aggression among Early Adolescents.

Dating aggression occurs frequently in early to mid-adolescence and has negative repercussions for psychosocial adjustment and physical health. The patterns of behavior learned during this developmental timeframe may persist in future dating relationships, underscoring the need to identify risk factors for this outcome. The current study examined longitudinal relations between beliefs supporting aggression, anger regulation, and dating aggression. Participants were 176 middle school students in sixth, seventh, and eighth grade (50 % female; 82 % African American). No direct effects were found between beliefs supporting reactive or proactive aggression and dating aggression. Beliefs supporting reactive aggression predicted increased rates of anger dysregulation, and beliefs supporting proactive aggression led to subsequent increases in anger inhibition. Anger dysregulation and inhibition were associated with higher frequencies of dating aggression. An indirect effect was found for the relation between beliefs supporting reactive aggression and dating aggression via anger dysregulation. Another indirect effect emerged for the relation between beliefs supporting proactive aggression and dating aggression through anger inhibition. The study's findings suggested that beliefs supporting proactive and reactive aggression were differentially related to emotion regulation processes, and identified anger dysregulation and inhibition as risk factors for dating aggression among adolescents.

Using the Three-Minute Speech Sample to Examine the Parent-Adolescent Relationship in Autistic Youth: A Qualitative Analysis.

PURPOSE: This qualitative study examines autistic adolescents' perception of the quality of their relationship with their parent using the Three Minute Speech Sample. METHODS: Twenty autistic youth (13-17 years; 83% male) spoke, uninterrupted, for three minutes about their thoughts and feelings regarding their mothers. Audio-recorded speech samples were transcribed and coded for emergent themes. RESULTS: Adolescents highlighted emotional support and acceptance in the context of their relationship, support mothers provide for mental health, love and caring, efforts to build the relationship through shared activities, and areas of adolescent-parent conflict. CONCLUSION: The TMSS is a low cost, low burden method by which autistic adolescents can comfortably and effectively self-report the quality of their relationship with their parent/caregiver.

Simple Bioparticle Filtration Device Based on an Ultralow-Fouling Zwitterionic Polyurethane Membrane for Rapid Large-Volume Separation of Plasma and Viruses from Whole Blood.

Plasma separation from whole blood is oftent required as an essential first step when performing blood tests with a viral assay. However, developing a point-of-care plasma extraction device with a large output and high virus recovery remains a significant obstacle to the success of on-site viral load tests. Here, we report a portable, easy-to-use, cost-efficient, membrane-filtration-based plasma separation device that enables rapid large-volume plasma extraction from whole blood, designed for point-of-care virus assays. The plasma separation is realized by a low-fouling zwitterionic polyurethane-modified cellulose acetate (PCBU-CA) membrane. The zwitterionic coating on the cellulose acetate membrane can decrease surface protein adsorption by 60% and increase plasma permeation by 46% compared with a pristine membrane. The PCBU-CA membrane, with its ultralow-fouling properties, enables rapid plasma separation. The device can yield a total of 1.33 mL plasma from 10 mL whole blood in 10 min. The extracted plasma is cell-free and exhibits a low hemoglobin level. In addition, our device demonstrated a 57.8% T7 phage recovery in the separated plasma. The results of real-time polymerase chain reaction analysis confirmed that the nucleic acid amplification curve of the plasma extracted by our device is comparable to that obtained by centrifugation. With its high plasma yield and good phage recovery, our plasma separation device provides an excellent replacement for traditional plasma separation protocols for point-of-care virus assays and a broad spectrum of clinical tests.

The Trach Trail: A Systems-Based Pathway to Improve Quality of Tracheostomy Care and Interdisciplinary Collaboration.

OBJECTIVE: To implement a standardized tracheostomy pathway that reduces length of stay through tracheostomy education, coordinated care protocols, and tracking patient outcomes. METHODS: The project design involved retrospective analysis of a baseline state, followed by a multimodal intervention (Trach Trail) and prospective comparison against synchronous controls. Patients undergoing tracheostomy from 2015 to 2016 (n = 60) were analyzed for demographics and outcomes. Trach Trail, a standardized care pathway, was developed with the Iowa Model of Evidence-Based Practice. Trach Trail implementation entailed monthly tracheostomy champion training at 8-hour duration and staff nurse didactics, written materials, and experiential learning. Trach Trail enrollment occurred from 2018 to 2019. Data on demographics, length of stay, and care outcomes were collected from patients in the Trach Trail group (n = 21) and a synchronous tracheostomy control group (n = 117). RESULTS: Fifty-five nurses completed Trach Trail training, providing care for 21 patients placed on the Trach Trail and for synchronous control patients with tracheostomy who received routine tracheostomy care. Patients on the Trach Trail and controls had similar demographic characteristics, diagnoses, and indications for tracheostomy. In the Trach Trail group, intensive care unit length of stay was significantly reduced as compared with the control group, decreasing from a mean 21 days to 10 (P < .05). The incidence of adverse events was unchanged. DISCUSSION: Introduction of the Trach Trail was associated with a reduction in length of stay in the intensive care unit. Realizing broader patient-centered improvement likely requires engaging respiratory therapists, speech language pathologists, and social workers to maximize patient/caregiver engagement. IMPLICATIONS FOR PRACTICE: Standardized tracheostomy care with interdisciplinary collaboration may reduce length of stay and improve patient outcomes.