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 Rating of Perceived Exertion-Pediatric (RPE-P) Scale: Preliminary Validation.

Physical activity is critical to functional rehabilitation for youth with chronic pain, which may be especially true for those with co-occurring obesity. To facilitate the development of physical activity interventions for youth with chronic pain, the newly developed "Rating of Perceived Exertion-Pediatric" scale was modeled after the widely used pain numeric rating scale-11. This study is an initial evaluation of the scale in a sample of adolescents (n = 157, 13-17 years, 51% female) with four subgroups: (1) healthy controls (healthy weight/no pain); (2) chronic pain/healthy weight; (3) obese (no pain); (4) chronic pain/obese. Participants rated perceived exertion using the new scale and the Borg 6-20 Scale of Perceived Exertion while holding a three-minute yoga pose (Warrior II). In the whole sample, the Perceived Exertion-Pediatric scale showed good concurrent (p < 0.001), convergent (all ps < 0.05), discriminant (p = 0.431), and known-groups validity (all ps < 0.05). The chronic pain subgroup also showed good concurrent (p < 0.001), mixed convergent (ps < 0.001 to 0.315), and good discriminant validity (p = 0.607). Limitations include the restricted age range, lack of diversity, and lack of test-retest reliability. The RPE-P shows promise as an assessment tool for perceived exertion in adolescents with and without chronic pain.

Stress Numerical Rating Scale-11: Validation in Pediatric Inpatient and Outpatient Pain Settings.

Stress is a commonly reported issue in pediatric populations of chronic and acute pain. Both outpatient and inpatient settings impose time constraints, which decreases opportunities to measure and address patient stress. The aim of these studies was to evaluate the validity of the Stress Numeric Rating Scale-11 (SNRS-11) in both inpatient and outpatient settings. The SNRS-11 is a single item stress measure ranging from 0 to 10 with endpoint anchors: 0 = "No stress" and 10 = "Highest stress possible". Results showed discriminative validity in the inpatient sample and convergent and discriminant validity in both outpatient and inpatient samples. Additionally, approximately 40% to 50% of the sample reported moderate-severe stress on all post-operative days. The SNRS-11 shows promise as a quick, easy, and free stress measure to be used in both inpatient and outpatient settings.

Family Caregiver Acceptability of Assessing Caregiver Adverse Childhood Experiences (ACEs) and Distress in Pediatric Specialty Care.

INTRODUCTION: Providing quality healthcare for children includes assessing and responding to needs of their family caregivers. Three salient domains to consider are caregivers' early adverse childhood experiences (ACEs), their current levels of distress, and their resilience in coping with both prior and current stressors. OBJECTIVE: Determine acceptability of assessing caregiver ACEs, current distress, and resilience in pediatric subspecialty care settings. METHODS: Caregivers of patients in two pediatric specialty care clinics completed questionnaires about their ACEs, recent emotional distress, and resilience. Importantly, caregivers also rated the acceptability of being asked these questions. Participants included 100 caregivers of youth ages 3-17 across Sickle Cell Disease and Pain clinic settings. The majority of participants were mothers (91.0%) who identified as non-Hispanic (86.0%). Caregiver race was primarily African American/Black (53.0%) and White (41.0%). The Area Deprivation Index (ADI) was used to assess socioeconomic disadvantage. RESULTS: High levels of caregiver acceptability or neutrality with assessing ACEs and distress, as well as high ACEs, distress, and resilience. Associations were found between caregiver ratings of acceptability with caregiver resilience and socioeconomic disadvantage. Caregivers reported openness to being asked about their experiences during childhood and recent emotional distress, although ratings of acceptability varied according to other contextual variables, such as level of socioeconomic disadvantage and caregiver resilience. In general, caregivers perceived themselves to be resilient in the face of adversity. CONCLUSIONS: Assessing caregiver ACEs and distress in a trauma-informed way may provide opportunities for better understanding the needs of caregivers and families in order to support them more effectively in the pediatric setting.