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.

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.

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.

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.

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.

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.

Influence of Provider Communication on Emerging Adults' Medication Cognitions and Provider Satisfaction.

OBJECTIVE: This study examined how the content of medical provider communication related to medication prescriptions influenced emerging adults' (EA) medication-related cognitions and satisfaction with care. METHODS: In total, 257 EA (ages 18-25) were randomized to one of three audio vignettes depicting a medical appointment in which the EA imagined him/herself as the recipient of an oral antibiotic prescription. Provider communication content varied by vignette as follows: the positive outcome expectancy (POE) vignette focused on enhancing patient POE related to antibiotic use; the negative outcome expectancy (NOE) vignette focused on reducing patient NOE; and the standard care vignette focused on providing factual medication information. Following the vignette, participants self-reported on demographics, select medication-related cognitions, and provider satisfaction from vignette. RESULTS: Those in the NOE vignette condition reported higher provider satisfaction, perceived the provider to have given more information, and evidenced lower NOE and higher POE about the antibiotic compared with those in the other conditions. Intent to adhere did not vary by vignette condition. CONCLUSIONS: Brief, provider-initiated communication focused on reducing patient NOE may have unique value in altering EA's medication-related cognitions. Given that medication-related beliefs are known correlates of adherence, future research should replicate and expand these findings in the context of real-world medical encounters and through the utilization of objective indices of medication adherence to more fully understand the potential significance of provider language emphasizing reduction of NOE on medication adherence.

Social factors shaping the adoption of lead-filtering point-of-use systems: an observational study of an MTurk sample.

Some municipalities are promoting lead-filtering point-of-use (POU) systems to minimize the risk of lead exposure through drinking water, often targeting use at racial minorities and low-income households. However, links among social inequality markers and adoption of these systems are not well understood. Survey data on adoption and use of POU systems were collected from a U.S. Mechanical Turk (MTurk) sample (N = 2,867) in March 2018. We use logistic regression to assess the association of race/ethnicity, socioeconomic status (SES), and lead-filtering POU adoption. We also examined key health behaviors related to POU systems. We found that race and SES are indirectly predictive of lead-filtering POU adoption through the propensity of some respondents to report a residence with a lead service line and levels of concern and knowledge about lead exposure. In addition, individuals with similar levels of concern about lead in water have lower odds of adopting a POU system if they have lower, rather than higher, incomes. Among POU adopters, while confidence in correct use of these devices was relatively high, the frequency of filtered water use for cooking was lower than drinking frequency. Overall, these findings inform health policies aimed at mitigating risk of lead exposure through water.

Predicting parent health-related quality of life: evaluating conceptual models.

PURPOSE: Parents of children with chronic illnesses are at risk for poor health-related quality of life (HRQoL), with numerous identified risk factors, but the most informative statistical model considering their combined impact is unclear. The authors conceptualized risk for poor HRQoL using a summed model, comprehensive multivariate model, and latent profile analysis (LPA). METHODS: Community parents completed an online survey, providing information about demographics, child's chronic illness, family functioning, and parent and child HRQoL. Parents reported that their children had a variety of chronic conditions (e.g., asthma, headaches, attention deficit/hyperactivity disorder, neurofibromatosis). RESULTS: The summed model did not account for a significant proportion of variance in parent HRQoL. The comprehensive multivariate model (R 2 = 0.614) and LPA (R 2 = 0.305) both significantly predicted parent HRQoL. The LPA identified two risk profiles for lower HRQoL: parents who reported milder illnesses, but poorer family functioning; and parents who reported greater disease severity, but better family functioning. CONCLUSIONS: Comprehensive multivariate models or LPAs best conceptualize patterns of risk for poor parental HRQoL in the community; though the findings in the current community sample may not extend to parents recruited from specialty clinics whose children may have more severe chronic illnesses. Parents of children with mild chronic conditions are still at risk for poor HRQoL, warranting attention from health care providers.

Differentiating peer and friend social information-processing effects on stress and glycemic control among youth with type 1 diabetes.

OBJECTIVE: Many adolescents with Type 1 diabetes (T1D) find adherence difficult in social situations because they fear negative evaluations by others. These negative reaction attributions are associated with anticipated adherence difficulties, stress, and glycemic control. It is unclear whether peer versus friend attributions are distinct constructs, or whether there is a differential impact on glycemic control moderated by youth characteristics. METHOD: Youth with T1D (n = 142; 58% female; 84% Caucasian, mean = 13.79 years, standard deviation = 2.10) completed the Peer Attribution and Diabetes Stress Questionnaires. HbA1cs were obtained from medical records. RESULTS: Negative peer versus friend attributions appear distinct and were differentially related to anticipated adherence difficulties, stress, and glycemic control, with peer attributions having the strongest effect. Grade, age, and sex were not moderators for these relationships. CONCLUSION: Peer-related attributions may be a particularly salient target for interventions to improve adherence and distress among youth with T1D.

Distinct Influences of Anxiety and Pain Catastrophizing on Functional Outcomes in Children and Adolescents With Chronic Pain.

OBJECTIVES: Examine whether anxiety and pain catastrophizing are distinct constructs in relation to functional outcomes in pediatric chronic pain, and whether they differentially predict functional outcomes based on age. METHODS: In all, 725 youth (191 children, 534 adolescents) with chronic pain completed measures of pain characteristics, anxiety, pain catastrophizing, functional disability, and health-related quality of life (HRQOL). Structural equation modeling was used to examine interrelationships. RESULTS: Anxiety and pain catastrophizing were distinct. For both children and adolescents, pain catastrophizing predicted pain, functional disability, and HRQOL, and was a stronger predictor of pain intensity. For children, anxiety predicted HRQOL, and pain catastrophizing was a stronger predictor of functional disability. For adolescents, anxiety predicted functional disability and HRQOL, and anxiety was a stronger predictor of HRQOL. CONCLUSIONS: There were age-related differences regarding whether anxiety or pain catastrophizing more strongly predicted specific functional outcomes. Assessment and intervention efforts should emphasize both anxiety and pain catastrophizing.

Assessing measurement invariance of the diabetes stress questionnaire in youth with type 1 diabetes.

OBJECTIVE: To evaluate the factor structure and measurement invariance of the Diabetes Stress Questionnaire (DSQ), a measure of diabetes-specific stress, across sex, age (<9th grade vs. ≥9th grade), and glycemic control (optimal vs. suboptimal). METHODS: Data from 318 adolescent participants were pooled from four archival data sets and the ongoing Predicting Resiliency in Youth with Type 1 Diabetes study in which the DSQ was completed. Confirmatory factor and measurement invariance analyses were conducted to confirm the proposed factor structure and measurement invariance across sex, age, and glycemic control. RESULTS: The DSQ factor structure was found to have an acceptable fit, which was invariant across sex, age, and glycemic control. CONCLUSIONS: When using the DSQ, differences in diabetes-related stress with respect to sex, age, or glycemic control can be considered meaningful. This study supports the DSQ as an evidence-based and well-established assessment of perceived diabetes stress in youth with type 1 diabetes.

A pilot study of yoga for chronic headaches in youth: promise amidst challenges.

The primary aim of the current study was to provide preliminary data on the feasibility, acceptability, and safety of alignment-based yoga for youths with chronic headaches. A secondary aim was to provide preliminary estimates of yoga's ability to improve headache pain, daily functioning, quality of life, and anxiety level in this population. The yoga intervention consisted of 8 weekly, 75-minute classes. Participant flow data revealed challenges to feasibility primarily due to recruitment and retention. Scores on most outcome measures changed in the predicted direction with medium effect sizes found for the functional outcomes. Pain measures did not change significantly. This pilot suggests that yoga for pediatric headaches may be acceptable, as indicated by positive parent and participant ratings of the yoga experience. These preliminary findings suggest that yoga trials for pediatric headaches include both challenges and promise. Recommendations for overcoming challenges include designs that optimize family convenience.

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.