Medical Decision-Making and Bereavement Experiences After Cardiac Arrest: Qualitative Insights From Surrogates.

Background: Surrogates of incapacitated patients in the intensive care unit (ICU) face decisions related to life-sustaining treatments. Decisional conflict is understudied.

Objectives: To compare experiences of ICU surrogates by reported level of decisional conflict related to treatment decisions after a patient's cardiac arrest preceding death.

Assessing multilevel barriers to hydroxyurea adherence in youth with sickle cell disease using pharmacy-based refill records.

Background: Suboptimal medication adherence is common across youth with chronic health conditions and may contribute to health disparities and adverse health outcomes, especially in underserved communities.

Methods: Using pharmacy prescription records and guided by the World Health Organization Multidimensional Adherence Model, we examined patient-, treatment-, and health system-related factors that may affect hydroxyurea adherence in 72 youth with sickle cell disease (SCD), 10-18 years who had participated in the multisite "Hydroxyurea Adherence for Personal Best in SCD" (HABIT) feasibility (6 months) and efficacy (12 months) trials. Pharmacy data were collected from the year prior to study entry through the duration of each trial.

Hydroxyurea Adherence for Personal Best in Sickle Cell Treatment (HABIT) efficacy trial: Community health worker support may increase hydroxyurea adherence of youth with sickle cell disease.

Despite disease-modifying effects of hydroxyurea on sickle cell disease (SCD), poor adherence among affected youth commonly impedes treatment impact. Following our prior feasibility trial, the "Hydroxyurea Adherence for Personal Best in Sickle Cell Treatment (HABIT)" multi-site randomized controlled efficacy trial aimed to increase hydroxyurea adherence for youth with SCD ages 10-18 years. Impaired adherence was identified primarily through flagging hydroxyurea-induced fetal hemoglobin (HbF) levels compared to prior highest treatment-related HbF.

Mental and Emotional Health of Caregivers of Youth with Sickle Cell Disease: A Systematic Review.

People of African descent and those identifying as Black and/or Latino experience a disproportionate burden of sickle cell disease (SCD), a chronic, serious blood condition. Caregivers of children with chronic medical conditions report worse mental health than others. Disease-associated stressors can affect caregivers of children with SCD.

Predictors of Transition Outcomes in Cystic Fibrosis: Analysis of National Patient Registry and CF RISE (Responsibility. Independence. Self-care. Education) Data.

Objective: To identify predictors of change in lung function and body weight during health care transition in cystic fibrosis (CF).

Methods: We conducted a retrospective cohort study using data from the CF Foundation Patient Registry and the web-based transition program CF RISE (Responsibility. Independence.

Electronic Cigarette Use and Academic Performance Among Adolescents and Young Adults: A Scoping Review.

Background: There are documented links between substance use and poor educational outcomes. However, less is known about electronic cigarette (e-cigarette) use in relation to academics. Therefore, this scoping review aimed to synthesize associations between e-cigarette use and academic performance among adolescents and young adults.

Navigating liminal spaces together: a qualitative metasynthesis of youth and parent experiences of healthcare transition.

Transition from pediatric to adult care for adolescents and young adults (AYAs) with chronic illness affects the entire family. However, little research has compared AYA and parent experiences of transition. Using Sandelowski and Barroso's method, the aim of this metasynthesis was to summarize findings of qualitative studies focusing on the transition experiences of AYAs and their parents across different chronic physical illnesses.

Emergency Department Use by Young Adults With Chronic Illness Before and During the COVID-19 Pandemic.

Introduction: There was a significant decrease in emergency department encounters during the COVID-19 pandemic. Our large urban emergency department observed decreased encounters and admissions by youths with chronic health conditions. This study aimed to compare the frequency of emergency department encounters for certain young adults before the pandemic and during the COVID-19 pandemic.

Parent and adolescent perceptions of cystic fibrosis management responsibility: A mixed-methods study.

Background: Adolescents with cystic fibrosis (CF) and their parents must navigate changing roles and responsibilities within the family including transfer of disease management responsibilities.

Aim/objective: The aim of this qualitative study was to explore how families share and transfer CF management responsibility from the perspectives of adolescents with CF and their parents.

Methods: Guided by qualitative descriptive methodology, we purposively sampled adolescent/parent dyads.

Improving quality of life and self-care for patients on hemodialysis using cognitive behavioral strategies: A randomized controlled pilot trial.

Introduction: Behavioral-education interventions have the potential to improve quality of life and self-care for patients on hemodialysis (HD) but have not been incorporated into routine clinical practice. The purpose of this pilot study was to determine the feasibility of delivering a simple behavioral-education intervention using cognitive behavioral strategies in patients receiving HD with poor quality of life.

Methods: In this mixed methods study, HD patients were randomly assigned to the study intervention (8 behavioral-education sessions delivered over 12 weeks) or a control group of dialysis education alone.

Do Interventions Improve Symptoms Among ICU Surrogates Facing End-of-Life Decisions? A Prognostically-Enriched Systematic Review and Meta-Analysis.

Objectives: Evaluate the efficacy of interventions to improve symptoms for ICU surrogates at highest risk of developing psychologic distress: those facing end-of-life care decisions.

Data Sources: MEDLINE, CINAHL, PsycInfo, Embase, Cochrane Central Register of Controlled Trials, and ClinicalTrials.gov were searched through April 16, 2022.

Gaps in transition readiness measurement: a comparison of instruments to a conceptual model.

Objectives: Measuring transition readiness is important when preparing young people with chronic illness for successful transition to adult care. The Expanded Socioecological Model of Adolescent and Young Adult Readiness to Transition (Expanded SMART) offers a holistic view of factors that influence transition readiness and outcomes. The aim of this study was to examine conceptual congruency of transition readiness instruments with the Expanded SMART to determine the breadth and frequency of constructs measured.

Pediatric hematology providers' contraceptive practices for female adolescents and young adults with sickle cell disease: A national survey.

Background: Adolescent and young adult (AYA) women with sickle cell disease (SCD) have increased pregnancy-related health risks and are prescribed potentially teratogenic medications, yet limited data are available regarding pediatric SCD provider contraceptive practices. We aimed to assess pediatric hematology providers' beliefs, practices, motivators, and barriers for providing contraceptive care to female AYAs with SCD.

Methods: Guided by the Health Belief Model (HBM), we developed a 25-question, web-based survey to assess practices.

Mental health assessment of youth with sickle cell disease and their primary caregivers during the COVID-19 pandemic.

Youth with sickle cell disease (SCD) and their caregivers are susceptible to stress and depression, perhaps exacerbated by pandemic-associated health and economic concerns. Most of the 50 youth-caregiver dyads enrolled in the multisite trial, Hydroxyurea Adherence for Personal Best in Sickle Cell Treatment (HABIT), took an online survey of self-reported mental health symptoms and food insecurity during the 2020 COVID-19 pandemic. Compared to largely pre-pandemic results, prevalence of mental health symptoms in dyad members appeared to have shifted: fewer youth and more caregivers were affected during the pandemic; many of both groups lacked optimism.

Moving up: Healthcare transition experiences of adolescents and young adults with cystic fibrosis.

Purpose: The experience of healthcare transition from pediatric to adult care in cystic fibrosis (CF) remains poorly understood, particularly among racially and ethnically diverse adolescents and young adults (AYAs) with CF. The objective of this qualitative study was to explore the perspectives of a diverse sample of AYAs with CF at one urban academic medical center regarding healthcare transition.

Design And Methods: Guided by qualitative descriptive methodology, we purposively selected AYAs who represented the pre and post transition experience: some AYAs had experienced the transition preparation program CF R.

Associations between Developmental Assets and Adolescent Health Status: Findings from the 2016 National Survey of Children's Health.

Background: Developmental assets foster positive health outcomes among adolescents, but have not been studied in adolescents with chronic illness or depression, two conditions that impact behaviors in school. We examined parent-reported assets in a national sample of adolescents and compared the number and types of assets by health statuses.

Methods: Data were from the 2016 National Survey of Children's Health (N = 15,734 adolescents), which captured 15 of 40 assets in the Developmental Assets Framework.

Characterizing shared and distinct symptom clusters in common chronic conditions through natural language processing of nursing notes.

Data-driven characterization of symptom clusters in chronic conditions is essential for shared cluster detection and physiological mechanism discovery. This study aims to computationally describe symptom documentation from electronic nursing notes and compare symptom clusters among patients diagnosed with four chronic conditions-chronic obstructive pulmonary disease (COPD), heart failure, type 2 diabetes mellitus, and cancer. Nursing notes (N = 504,395; 133,977 patients) were obtained for the 2016 calendar year from a single medical center.

Antimicrobial Stewardship Interventions to Optimize Treatment of Infections in Nursing Home Residents: A Systematic Review and Meta-Analysis.

Effects of antibiotic stewardship program (ASP) interventions to optimize antibiotic use for infections in nursing home (NH) residents remain unclear. The aim of this systematic review and meta-analysis was to assess ASPs in NHs and their effects on antibiotic use, multi-drug-resistant organisms, antibiotic prescribing practices, and resident mortality. Following the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines, we conducted a systematic review and meta-analysis using five databases (1988-2020).

Automated vs. Human Health Coaching: Exploring Participant and Practitioner Experiences.

Health coaching can be an effective intervention to support self-management of chronic conditions like diabetes, but there are not enough coaching practitioners to reach the growing population in need of support. Conversational technology, like chatbots, presents an opportunity to extend health coaching support to broader and more diverse populations. However, some have suggested that the human element is essential to health coaching and cannot be replicated with technology.

Preparing Teaching Assistants in Nursing: A Mixed-Methods Evaluation.

Background: Teaching assistants (TAs) serve an important role in schools of nursing, but their educational needs are poorly understood.

Purpose: To better prepare TAs, our School of Nursing identified and evaluated current TA practices to create tailored educational materials.

Methods: A 16-item survey captured how faculty used TAs.