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.

Friends' Perspective: Young Adults' Reaction to Disclosure of Chronic Illness.

Chronic illness can negatively impact adolescents' and young adults' social support. Social support can buffer the negative impact of living with chronic illness. The purpose of this study was to test the acceptability of a hypothetical message to promote social support after a recent diagnosis of a chronic illness. Young adults (18-24; m = 21.30; N = 370), the majority of which were Caucasian, college-students, and female, were asked to read one of four vignettes and to imagine this situation happened while they were in high school. Each vignette contained a hypothetical message from a friend diagnosed with a chronic illness (cancer, traumatic brain injury, depression, or eating disorder). Participants answered forced-choice and free-response questions asking about the likelihood they would contact or visit the friend, and feelings about receiving the message. A general linear model was used to assess quantitative results, and qualitative responses were coded using the Delphi coding method. Participants responded positively, reporting a high likelihood to contact the friend, and feeling glad to receive the message regardless of vignette viewed; however, those who read the eating disorder vignette were significantly more likely to express discomfort. In qualitative responses, participants described positive emotions associated with the message and desire to support the friend. However, participants reported significantly greater discomfort with the eating disorder vignette. The results provide evidence for the potential of a short, standardized disclosure message to promote social support following chronic illness diagnosis with some additional considerations for those recently diagnosed with an eating disorder.

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.

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.

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.

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.

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.

Vaccine Attitudes Mediate Relationships Between Caregiver Political Ideology and Likelihood of Child Vaccination for COVID-19.

INTRODUCTION: The COVID-19 vaccine has become available to children ages 5-12, yet vaccine uptake is suboptimal. Political ideology is a correlate of COVID-related beliefs and vaccine likelihood among US adults. However, since political ideology is not easily modifiable, attention to modifiable mechanisms that may explain links between political ideology and vaccine hesitancy is important in addressing this public health crisis. Caregiver attitudes around vaccine safety and efficacy have been related to vaccine uptake in other populations and warrant additional study in the context of COVID-19. The current study examined whether caregiver's attitudes regarding the safety and efficacy of the COVID-19 vaccine mediated the relationship between caregiver political ideology and likelihood of having their child vaccinated. METHODS: 144 US caregivers of children (6-12 years) completed an online survey in summer 2021 to assess political ideology, vaccine-related beliefs, and likelihood of having their child vaccinated against COVID-19. RESULTS: Caregivers with more liberal political views reported higher likelihood of eventual child vaccination compared to caregivers who reported a more conservative views (t(81) = 6.08, BCa CI [2.97, 5.67]). Moreover, parallel mediation models indicated caregiver?s perceptions of risks (BCa CI [-.98, -.10]) and efficacy (BCa CI [-3.16, -2.15]) of the vaccine each mediated the aforementioned relationship, with perceived efficacy explaining significantly more variance than risks. CONCLUSIONS: Findings extend knowledge by identifying social cognitive factors that impact caregiver vaccine hesitancy. Interventions to address caregiver's hesitancy to have their child vaccinated through modifying caregiver's inaccurate beliefs regarding vaccines or enhancing perceptions of vaccine efficacy is warranted.

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).

Wisconsin's COVID-19 Safer-at-Home Order: Perspectives on Pain, Stress, and Functioning From Pediatric Patients With Chronic Pain.

BACKGROUND: Given that enforced quarantine is associated with psychological distress, our objective was to understand factors that either helped or harmed pediatric chronic pain patients during Wisconsin's 2020 safer-at-home quarantine. METHODS: We reviewed the electronic medical records of 145 pediatric chronic pain patients seen at the Jane B. Pettit Pain and Headache Center, Children's Wisconsin, between April 1 and July 30, 2020. RESULTS: Stress and poor/disturbed lifestyle factors were primary contributors to increased pain. Over half of the sample (58.7%) reported COVID-related stressors as contributing to increased stress levels. Coping, engagement, and socialization were primary contributors to patient functioning. CONCLUSIONS: Continued access to clinicians who can help with coping and stress management techniques is necessary for the well-being of pediatric chronic pain patients during a quarantine.

Responding to the Psychological Needs of Health-Care Workers During the COVID-19 Pandemic: Case Study from the Medical College of Wisconsin.

With the advent of the novel coronavirus (COVID-19) pandemic, health-care workers have been faced with an inordinately high level of trauma as frontline providers. The Medical College of Wisconsin (MCW) partnered with affiliate hospitals and community partners to mobilize a matrix of available support and interventions to deliver psychological services to reach all levels of health-care providers in timely, accessible formats. While virtual peer support groups were the most utilized resource among the support group options, other opportunities also provided unique benefits to learners whose education had been disrupted by the pandemic. Mental health must be prioritized for health-care workers in the event of future public health crises. Lessons learned from this pandemic indicate that it is critical to involve learners early on in the process in order to meet their educational needs and to increase access to evidence-based care.

Effects of Weight and Pain on Physical Activity: Insights from the Lived Experiences of Youth with Co-Occurring Chronic Pain and Obesity.

Objective: Pediatric obesity and chronic pain are each associated with an increased risk for numerous poor physical and mental health outcomes. Co-occurring chronic pain and obesity (CPO) result in greater functional disability compared with either condition alone. The aim of the present study was to use qualitative methods to better understand the challenges experienced by adolescents with CPO, with a specific focus on physical activity. Methods: Semistructured interviews were conducted with 13 youth with CPO. Participants were questioned about pain, physical activity, coping strategies, and the perceived relationship between weight and pain. Interviews were audiorecorded, transcribed, and analyzed according to Interpretative Phenomenological Analysis. Results: Superordinate themes expressed by youth included: Impact of Chronic Pain on Relationships, Impact of Pain on Self-Perception, Using Food to Cope with Pain, Perceived Relationship between Pain and Weight after Onset of Pain, Attitudes toward Physical Activity, Barriers to Physical Activity, and Supports to Physical Activity. Conclusions: Participants identified challenges associated with CPO. Notably, participants identified pain as a greater barrier to exercise than weight, implicating the salience of chronic pain in the lives of youth with CPO. Furthermore, participants identified a desire to be more physically active, yet discussed struggles and concerns about attempts to increase their physical activity and indicated a desire for guidance about being more active. This study highlights the complexities of the relationship between CPO and underscores the importance of providers collaboratively working with patients to develop a practical plan to resume movement and physical activity.

Caregiver perceptions of importance of COVID-19 preventative health guidelines and difficulty following guidelines are associated with child adherence rates.

OBJECTIVE: To describe child adherence to four preventative-health guidelines during the COVID-19 pandemic and investigate caregiver-level correlates of adherence. METHOD: Two hundred thirty-six caregivers (75% female) of children ages 6-12 years (Mage = 8 years; 53% male) living in the United States rated child adherence to four preventative-health guidelines between 10/16/2020 and 11/14/2020. Caregivers also rated perceived importance of each guideline in limiting virus spread and perceived difficulty in obtaining child compliance. RESULTS: Child adherence was highest for mask-wearing (median [Mdn] = 96%) and hand hygiene (Mdn = 95%). Adherence to social distancing guidelines was lower. Mdn adherence for social distancing with family outside the household was 80%, and Mdn adherence for social distancing with friends was 72%. Furthermore, for each of the four guidelines, fewer than half the sample reported 100% adherence (range = 20%-43%). Adherence was positively associated with caregiver perceptions of importance of a given behavior in limiting virus spread (rs = .38-.62) and negatively associated with perceived difficulty in gaining child compliance (rs = -.37-.25). DISCUSSION: Current results indicated parents perceive child adherence to social distancing more challenging than child adherence to mask wearing or hand hygiene. Lower caregiver perceptions of importance of the behavior and greater perceived difficulty in gaining child compliance were associated with lower adherence to all tasks. Brief targeted interventions (e.g., motivational interviewing, parent behavior management training) may be well suited to enhance caregivers' perceptions of value of the behavior, while also addressing behavioral challenges that interfere with child adherence. (PsycInfo Database Record (c) 2021 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.

Adolescent Experiences with Self-Asphyxial Behaviors and Problematic Drinking in Emerging Adulthood.

Self-asphyxial behavior to achieve a euphoric high (The Choking Game; TCG), occurs most often during early adolescence. Participants in TCG often engage in other risky behaviors. This study investigated the relationship between prior experience with TCG and problematic drinking behaviors in emerging adulthood. Emerging adults, 18 to 25 years old (N = 1248), 56% female, and 78% Caucasian completed an online survey regarding knowledge of and prior engagement in TCG and current drinking behaviors. Participants who personally engaged in TCG during childhood/adolescence or were familiar with TCG reported significantly more problematic drinking behaviors during emerging adulthood. Those present when others engaged in TCG but resisted participation themselves reported significantly less current problematic drinking behaviors than those who participated, but significantly more current problematic drinking behaviors than those never present. Emerging adults with increased social familiarity with TCG during adolescence endorsed greater problematic drinking behaviors. Results suggest resistance skills may generalize across time/activities.

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.

Parent Ethical Concerns About Patient Feedback Measures to Improve Pediatric Clinical Care.

There are limited studies evaluating parental willingness to complete patient feedback measures to improve pediatric clinical care. Parents were randomly assigned to read a vignette that varied by parent satisfaction and type of feedback measure. Parents were generally willing to participate in the hypothetical research study aimed to improve their child's clinical care. Parents in the dissatisfied condition invited to participate in a potentially identifiable interview, compared to an anonymous survey, reported they would be less likely to respond honestly and more likely to feel obligated to participate. Researchers aiming to improve pediatric clinical care should be encouraged to use patient feedback measures that collect potentially identifiable information; however, researchers must consider the potential impact of parent satisfaction on feedback.