Acceptability and Feasibility of Text Message Interface to Assess Parents' Real-time PICU Experiences.

INTRODUCTION: Parents of children in the pediatric intensive care unit (PICU) experience substantial stress; a parent's perception of their child's illness severity, more than objective measures, predicts psychological outcomes. No tools exist to assess parents' real-time experiences. This pilot study evaluated the feasibility and acceptability of a text-based tool to measure parental experience. METHODS: Inclusion criteria included PICU stay >48 h, physician approval, smartphone access, and English-speaking caregiver. Eligible parents received a text-based baseline survey and surveys every other day while hospitalized regarding their mood/experiences and optional open-ended questions regarding stressors. They received post-discharge follow-up surveys at 1 week and 1, 3, and 6 months. Follow-up surveys assessed mood and symptoms of depression, anxiety, and post-traumatic stress. Interviews and surveys about the interface were conducted 1 week and 3 months following discharge. Feasibility was assessed by descriptive statistics (eg, response rates), and acceptability was assessed by descriptive statistics (survey results) and thematic analyses of interviews. RESULTS: Of 20 enrolled participants, the first 5 were excluded due to technical issues. Of the 15 included, results demonstrated feasibility and acceptability. Most participants (86%) completed all surveys during the PICU stay and continued to complete surveys at a high rate: 79%-94% 3 months post-discharge. All participants agreed that the system was easy to use and were satisfied with the system at discharge, and 91% remained satisfied 3 months post-discharge. Additionally, 76% reported comfort, and 69% reported benefit. From the interviews, participants lauded the system's convenience and applicability of content. Some proposed changes to improve ergonomics. Many suggested this interface could help teams better support families. CONCLUSIONS: A text-based interface for measuring experience in the PICU is feasible and acceptable to parents. Further research can explore how this could identify parents most at risk of adverse psychological sequelae and lead to earlier supportive interventions.

Challenges of Families of Patients Hospitalized in the PICU: A Preplanned Secondary Analysis From the Navigate Dataset.

OBJECTIVES: To describe challenges experienced by parents of children hospitalized in the PICU during PICU admission as reported by family navigators. DESIGN: A preplanned secondary analysis of open-response data coded via inductive qualitative approach from the Navigate randomized controlled trial (RCT) dataset (ID NCT02333396). SETTING: Two university-affiliated PICUs in the Midwestern United States as part of an RCT. PATIENTS: Two hundred twenty-four parents of 190 PICU patients. INTERVENTIONS: In 2015-2017, trained family navigators assessed and addressed parent needs, offered weekly family meetings, and provided post-PICU discharge parent check-ins as part of a study investigating the effectiveness of a communication support intervention ("PICU Supports"). MEASUREMENTS AND MAIN RESULTS: We analyzed qualitative data recorded by family navigators weekly across 338 encounters. Navigators described families' "biggest challenge," "communication challenges," and ways the team could better support the family. We used an inductive qualitative coding approach and a modified member-checking exercise. The most common difficulties included home life , hospitalization , and diagnosis distress (45.2%, 29.0%, and 17.2% of families, respectively). Navigators often identified that parents had co-occurring challenges. Communication was identified as a "biggest challenge" for 8% of families. Communication challenges included lack of information, team communication , and communication quality (7.0%, 4.8%, and 4.8% of families, respectively). Suggestions for improving care included better medical communication, listening, rapport, and resources. CONCLUSIONS: This study describes families' experiences and challenges assessed throughout the PICU stay. Family navigators reported families frequently experience stressors both internal and external to the hospital environment, and communication challenges between families and providers may be additional sources of distress. Further research should develop and assess interventions aimed at improving provider-family communication and reducing stressors outside the hospitalization itself, such as home life difficulties.

The impact of the COVID-19 pandemic on families of children with medical complexity: A qualitative study of caregivers' experiences.

BACKGROUND: Families of children with medical complexity (CMC) have been negatively affected by the COVID-19 pandemic, experiencing challenges such as decreased access to services, increased financial hardship and increased isolation. However, there are few qualitative studies which explore parental experiences. The aim of the present study was to describe the impact of the COVID-19 pandemic on families of CMC. METHODS: Caregivers of CMC were recruited from a large hospital in the Midwestern United States. They completed a semistructured qualitative interview assessing the impact of COVID-19 on their child's care, which was analysed using interpretive phenomenological analysis. RESULTS: Twenty caregivers who were predominantly White, married and female participated. Emergent themes included the importance of protecting their child's health to ensure their physical safety, greater social isolation and missed medical services related to concerns about exposure, clinic closures and/or other logistical changes. Participants noted that the convenience of telehealth was a positive outcome of COVID-19 that facilitated care while reducing time and resource challenges. CONCLUSIONS: This study highlights the importance of protecting the health of CMC through continued safe access to in-person or telehealth services. It is important to prioritise emotional support services for families of CMC as they have experienced increased stress and social isolation during and after the COVID-19 pandemic. This topic should be explored among diverse families with CMC across multiple healthcare systems.

Emerging Adults' Adherence to Preventative Health Guidelines in Response to COVID-19.

OBJECTIVE: To examine rates of emerging adults' (EA) adherence to preventative health behavior recommendations during early months of the COVID-19 pandemic and to investigate demographic (i.e., gender, years of education, socioeconomic status, school enrollment status, and living situation) and exposure and impact-related correlates of adherence. METHODS: Participants were 273 [M (SD) age = 22 (2.1) years, 55% female, 32% from minoritized groups] EA completed an online survey of adherence to 11 preventative health behaviors recommended by the Centers for Disease Control (CDC) during summer 2020. Participants rated adherence via a visual analog scale. Participants also reported demographic information and completed the COVID-19 Exposure and Family Impact Adolescent and Young Adult Version (CEFIS-AYA). RESULTS: Median levels of adherence to preventative recommendations ranged from 66% to 100%. Highest adherence levels (Mdn > 90%) were reported for quarantining if exposed to COVID-19; covering mouth when sneezing; avoiding the elderly/those at high risk; and avoiding large gatherings. Median adherence was <80% for mask wearing; maintaining a 6-foot distance; avoiding in-person visits with romantic partners or friends; and disinfecting surfaces. Female gender was the only variable significantly associated with overall adherence, and it explained 4% of the variance. CONCLUSIONS: Following guidelines related to social distancing practices may be particularly challenging for EA, possibly because of unique developmental needs of this group, and males may be at greater risk for non-adherence to CDC recommendations. Therefore, public health messaging and adherence intervention development should be designed with males and social distancing practices in mind.

Communication About Medication by Providers-Adolescent and Young Adult Version: Confirmatory Factor Analyses.

OBJECTIVE: To replicate the factor structure of a patient-report measure of provider communication about key medication prescription information, the Communication about Medication by Providers-Adolescent and Young Adult (CAMP-AYA) Version. We evaluated whether the 15-item, two-factor structure identified previously could be replicated via confirmatory factor analysis, and we also examined fit of unidimensional and bifactor models. Associations of CAMP-AYA Total and Factor Scores with provider satisfaction and select patient and medication characteristics were also examined. METHODS: Participants were 739 AYA (ages 18-25) who completed the CAMP-AYA, a provider satisfaction rating, and provided demographic and medication information. RESULTS: The bifactor model was best fitting (χ2 [75] = 689.60, p < .0001; root mean squared error of approximation = 0.11, 90% CI [0.10, 0.11]; Comparative Fit Index = 0.98; Tucker-Lewis Index = 0.98; Standardized Root Mean Square Residual Index = 0.02). Internal consistency reliabilities for Total and Factor Scores were high (αs > .89) and Total and Factor Scores were associated with provider satisfaction (ps < .001). CAMP-AYA scores varied as a function of type of prescription (short vs. long term; new vs. refill), with higher scores reported in the context of long term (>30-day course) or refilled prescriptions (ps < .007) in most cases. CONCLUSIONS: This study provides additional support for the reliability of the CAMP-AYA as a tool to assess AYA perceptions of provider key information coverage about medication prescriptions.

Distressing Discussions in Pediatric Interpreted Medical Encounters: A Qualitative Study of Medical Interpreter Perspectives on Clinician Communication Practices.

INTRODUCTION: This study explores pediatric medical interpreters' perspectives on clinician communication practices in medical encounters characterized by distressing content and difficult discussions. METHOD: In this interpretative phenomenological analysis, 13 Spanish-English interpreters at a midwestern pediatric hospital were purposively recruited and, in 2021-2022, completed a demographic survey and semistructured interview on communication in distressing interpreted medical encounters. RESULTS: Participants described clinician practices for effective cross-cultural interpreted communication. Practices align with recommendations on prebriefing, debriefing, jargon, stakeholder positioning, and teamwork. Novel findings relate to encounters with multiple parties, multilingual patients with monolingual parents, and coordination among clinicians. DISCUSSION: Findings corroborate recommendations for interpreted communication best practices, extend them to distressing pediatric encounters, and offer recommendations for clinicians using interpreting services in distressing encounters. Participants' insights are distilled into a series of clinician best practices for high-quality interpreted communication during difficult discussions and for strengthening language access services in pediatric medical settings.

"It Has Added Another Layer of Stress": COVID-19's Impact in the PICU.

OBJECTIVE: The novel coronavirus disease 2019 (COVID-19) pandemic has dramatically changed health care delivery and impacted health care providers. However, little is known about the impact of the pandemic in PICUs. In this qualitative study, we aimed to assess pediatric critical care providers' perspectives on the impact of the COVID-19 pandemic on the experiences of patients and families in the PICU and on their personal and professional lives. METHODS: Nineteen pediatric critical care and complex care attending physicians and nurse practitioners from a PICU in a tertiary, freestanding children's hospital in the Midwest completed a semistructured, qualitative interview. Transcripts were analyzed by using thematic analysis. RESULTS: For both PICU providers and patients and families, participants described a negative overall impact of the pandemic, especially relating to increased stress and fear of contracting the disease. Disease precautions such as visitor restrictions and restricting movement were reported to be particularly stressful for families because they limited coping strategies (eg, in-person social support). Providers described changes to the work environment, patient care, and their personal lives. CONCLUSIONS: Results elucidate the perceived impacts of COVID-19 and associated hospital precautions on the lives of PICU providers, patients, and families. Providers, patients, and families likely require additional psychosocial support during the pandemic. When possible, policies regarding disease management should maximize safety while minimizing additional stress. Further research is needed to explore patient and family perspectives regarding the impact of COVID-19 and to evaluate the continued impact of COVID-19 over time.