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.

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.

Community-recruited parent perspectives of concern dismissal by pediatric providers.

INTRODUCTION: Effective communication is a central tenet of family centered care, yet parent concerns are sometimes un- or underattended to by pediatric providers. This study aimed to explore the prevalence of, and factors related to, parental perceptions of concern dismissal by pediatric providers. METHOD: In Spring 2020, 270 community-recruited parents of children ages 6-12 years (74% White, 74% female, 69% married) responded to an online survey about perceived concern dismissal experiences with their children. Characteristics of concern dismissal, differences in concern dismissal occurrence by parent factors, and emotional and practical impacts were assessed and explored. RESULTS: Thirty-three percent reported having experienced concern dismissal, most often in pediatric primary care settings. Concern dismissal was reported more frequently among parents employed in health care settings than those without health care employment histories. Most dismissed concerns related to the child's physical health and many incidents were characterized by provider impoliteness or provision of less testing or treatment than expected or desired. Many parents expressed disappointment in the health care system after experiences of concern dismissal. DISCUSSION: Concern dismissal was found to be common and upsetting for community-recruited parents. Future research should incorporate child and provider perspectives with demographically diverse samples. Pediatric providers should continue to work toward implementation of family centered care to decrease the likelihood of perceived dismissal by thoroughly recognizing and responding to concerns presented by parents and caregivers of pediatric patients. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

"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.