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.

Palliative care for pediatric intensive care patients and families.

PURPOSE OF REVIEW: Children with medical or surgical critical illness or injury require skillful attention to physical, emotional, psychological, and spiritual needs, whereas their families need support and guidance in facing life-threatening or life-changing events and gut-wrenching decisions. This article reviews current evidence and best practices for integrating palliative care into the pediatric intensive care unit (PICU), with a focus on surgical patients. RECENT FINDINGS: Palliative care is best integrated in a tiered approach, with primary palliative care provided by the PICU and surgical providers for all patients and families, including basic symptom management, high-quality communication, and end-of-life care. Secondary and tertiary levels of care involve unit or team-based 'champions' with additional expertise, and subspecialty palliative care teams, respectively. PICU and surgical providers should be able to provide primary palliative care, to identify patients and families for whom a palliative care consult would be helpful, and should be comfortable introducing the concept of palliative care to families. SUMMARY: This review provides a framework and tools to enable PICU and surgical providers to integrate palliative care best practices into patient and family care.

Association Between Resilience and Psychological Morbidity in Parents of Critically Ill Children.

OBJECTIVE: To determine whether parental resilience, measured at ICU admission, is associated with parent-reported symptoms of depression, anxiety, posttraumatic stress, and satisfaction with ICU care 3-5 weeks following ICU discharge. DESIGN: Planned prospective, observational study nested in a randomized comparative trial. SETTING: PICUs and cardiac ICUs in two, free-standing metropolitan area children's hospitals. PARTICIPANTS: English- and Spanish-speaking parents whose children were younger than 18 years old and had anticipated ICU stay of greater than 24 hours or Pediatric Index of Mortality score of greater than or equal to 4 at the time of consent. All ICU admissions were screened for inclusion. Of 4,251 admissions reviewed, 1,360 were eligible. Five hundred families were approached and 382 enrolled. Two hundred thirty-two parents from 210 families with complete data were included in analysis. INTERVENTIONS: All participating parents completed the Connor-Davidson Resilience Scale at the time of consent and outcome measures 3-5 weeks after ICU discharge. MEASUREMENTS AND MAIN RESULTS: All parents completed the Patient-Reported Outcome Measurement Information System Short Forms 8a for Depression and Anxiety, Impact of Event Scale-Revised for posttraumatic stress, and Pediatric Family Satisfaction-ICU 24 for parental satisfaction 3-5 weeks after ICU discharge. Higher parental resilience was associated with fewer symptoms of depression, anxiety, and posttraumatic stress in the final model (all p < 0.0001). Shorter length of stay, early mechanical ventilation, Latino ethnicity, and lower illness severity (both objective and parental perceptions) were associated with less morbidity in some or all measured mental health outcomes. CONCLUSIONS: Higher parental resilience is associated with fewer reported symptoms of anxiety, depression, and posttraumatic stress 3-5 weeks after ICU discharge. Parental resilience may impact parental post-ICU psychological morbidity. Measuring parental resilience could be one approach to identify parents at risk for post-ICU psychological morbidity. Future research into the impact of interventions designed to boost parental resilience is warranted.

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.

Palliative Care Interventions Among Adolescents and Young Adults with Serious Illness: A Scoping Review.

Objective: To map the range of multidisciplinary palliative care interventions that are available to adolescents and young adults (AYAs) with serious illness. Methods: Scoping review methodology as outlined by Arksey and O'Malley. Results: Twenty-two articles describing nine specific AYA-focused, multidisciplinary palliative care interventions were included in this review. Interventions focused on supporting advance care planning (ACP), facilitating treatment decision making, managing pain, and promoting resilience, psychosocial well-being, and quality of life. Interventions were delivered face-to-face and via different eHealth platforms and were targeted to AYAs with cancer, HIV/AIDS, and cystic fibrosis in both inpatient and outpatient settings. Conclusions: Few evidence-based multidisciplinary palliative care interventions have documented benefit for AYAs with serious illness. The limited work that has been done demonstrates that AYAs are open to engaging in palliative care interventions and suggests that individual members of the multidisciplinary team can implement these different interventions to support enhanced patient outcomes.

A Venn diagram of vulnerability: The convergence of pediatric palliative care and child maltreatment a narrative review, and a focus on communication.

Child maltreatment and end-of-life care independently represent two of the most emotion-laden and uncomfortable aspects of pediatric patient care. Their overlap can be uniquely distressing. This review explores ethical and legal principles in such cases and provides practical advice for clinicians. The review focuses on three archetypal scenarios of overlap: life-limiting illness in a child for whom parental rights have been terminated; life-threatening injury under CPS investigation; and complex end-of-life care which may warrant CPS involvement. While each scenario presents unique challenges, one consistent theme is the centrality of effective communication. This includes empathic communication with families and thoughtful communication with providers and community stakeholders. In almost all cases, everyone genuinely wants to do what is in the best interest of the child in these unthinkable circumstances. Transparent and collaborative communication can ensure that broad perspectives are considered to ensure that each child gets the best possible care in a manner adherent with ethical and legal standards, as they apply to each case.

"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.