Giving adolescents with cystic fibrosis a voice: Predicting cystic fibrosis nutritional adherence from their decision-making involvement.

OBJECTIVE: Suboptimal nutritional adherence in adolescents with cystic fibrosis (awCF) has been associated with lower lung function. AwCF often have more independence in dietary decisions than younger children, yet little research has examined how adolescent decision-making relates to nutritional adherence. This study explored whether components of adolescent decision-making involvement facilitate enzyme and caloric adherence in awCF. METHODS: 37 families participated and completed study procedures. AwCF and caregivers completed electronic surveys, including the Decision-Making Involvement Scale (DMIS). The DMIS evaluated awCF behaviors during nutrition-related decision-making/discussions with caregivers using DMIS subscales: Child Seek (asking for help/advice from caregivers), Child Express (awCF stating opinions) and Joint/Options (awCF participating in joint decision-making or caregiver providing options). AwCF completed 2, 24-hr diet recalls via videoconferencing/phone to estimate adherence. Chart reviews collected medical information. DMIS subscales were regressed onto enzyme and caloric adherence. RESULTS: 43% of awCF met calorie recommendations; 48.6% took all enzymes as prescribed. Caloric adherence was positively correlated with adolescent- and parent-reported Child Seek (r = 0.53; r = 0.36) and adolescent-reported Joint/Options (r = 0.41). Per adolescent-report, the caloric adherence regression model was significant, with Child Seek contributing unique variance in caloric adherence (ß = .62, p = .03). Parent-reported adolescent-decision-making involvement significantly predicted caloric adherence, but none of the subscales contributed unique variance. No other regressions were significant. CONCLUSIONS: When awCF participated in nutrition-related discussions with a caregiver, especially with questions, caloric adherence was better. Future research should examine whether family factors influence these results. AwCF are encouraged to ask questions in nutrition discussions.

Managing children's asthma: what role do caregivers' mental representations of trigger and symptom management behaviors play?

OBJECTIVE: Pediatric asthma management is challenging for parents and guardians (hereafter caregivers). We examined (1) how caregivers mentally represent trigger and symptom management strategies, and (2) how those mental representations are associated with actual management behavior. METHODS: In an online survey, N = 431 caregivers of children with asthma rated 20 trigger management behaviors and 20 symptom management behaviors across 15 characteristics, and indicated how often they engaged in each behavior. RESULTS: Principal components analysis indicated 4 dimensions for trigger management behaviors and 3 for symptom management behaviors. Bayesian mixed-effects models indicated that engagement in trigger management behavior was more likely for behaviors rated as affirming caregiver activities. However, trigger management behavior did not depend on how highly the behavior was rated as challenging for caregiver, burdensome on child, or routine caregiving. Engagement in symptom management behavior was more likely for behaviors rated as affirming and common and harmless to the child, but was unrelated to how highly a behavior was rated as challenging for caregivers. CONCLUSION: These results suggest that interventions might be particularly useful if they focus on the affirming nature of asthma management behaviors. However, such interventions should acknowledge structural factors (e.g. poverty) that constrain caregivers' ability to act.

The relationship between cumulative risk and health-related quality of life in youth with sickle cell disease: Moderating effects of secondary control engagement coping.

BACKGROUND: Youth with sickle cell disease (SCD) often experience low health-related quality of life (HRQOL). Engagement in resilience-promoting processes, such as secondary control engagement (SCE) coping, or adapting to stressors, may be linked to contextual risk factors (e.g., poverty status). This study aims to illuminate relationships between a cumulative risk index (CRI), SCE coping, and HRQOL in youth with SCD and test whether SCE coping moderates the relationship between CRI and HRQOL. PROCEDURE: Participants in this cross-sectional study included 63 youth ages 8-18 with SCD. Participants completed measures to assess SCE coping use (Responses to Stress Questionnaire) and HRQOL (PedsQL SCD Module). Six variables from the electronic medical record were compiled in a CRI. Correlational and regression analyses examined relationships between primary variables and moderating effects of SCE coping, respectively. RESULTS: Model results show that SCE coping and CRI explain variation in HRQOL (p = .001), and a significant interaction exists between SCE and CRI (ß = -.29, p = .02), with a stronger inverse relationship between CRI and HRQOL for higher SCE values. This suggests that lower CRI is associated with greater HRQOL for those with higher SCE coping relative to lower SCE coping. CONCLUSIONS: SCE coping may selectively benefit children with SCD experiencing lower cumulative risk, warranting encouragement of this strategy in clinical settings. Findings do not support SCE coping benefits for youth with higher risk, suggesting that the strategy may not be useful when risk-related stressors are especially pervasive; alternative protective factors should be identified for this risk group.

Sleep and circadian disruptors: Unhealthy noise and light levels for hospitalized pediatric patients.

Noise and light levels during hospitalizations can disrupt sleep and circadian health, resulting in worsened health outcomes. This study describes patterns of noise and light for inpatient children undergoing stem cell transplants. Objective meters tracked noise and light levels every minute for 6 months. Median overnight sound was 55 dB (equivalent to conversational speech). There were 3.4 loud noises (>80 dB) per night on average. Children spent 62% of the 24-h cycle in nonoptimal lighting, with daytime light dimmer than recommended 98% of the time. Over the 6-month period, the lowest overnight noise level recorded exceeded World Health Organization recommendations for sleep, with frequent spikes into ranges known to cause wakings. During the day, children were rarely exposed to light sufficient to preserve healthy circadian rhythms. Hospitals should address systematic environmental and workflow disruptors to improve the sleep and circadian health of patients, particularly those already at elevated risk for health morbidities.

Youth and caregiver asthma functioning and quality of life throughout the COVID-19 pandemic.

Objectives: The COVID-19 pandemic resulted in daily functioning changes for many families. Adjustments in daily functioning may have impacted asthma management and subsequent morbidity. The current study seeks to build upon extant literature by exploring differences in youth asthma exacerbations and control, as well as youth and caregiver asthma-related quality of life (ArQOL) throughout COVID-19 transitional points. Methods: Ninety-three youth (9-17 years old) with asthma and their caregivers completed measures of demographic/medical information, asthma control, and ArQOL. Participants were recruited between January 2020 and October 2021 via their medical appointments and a hospital registry. We conducted Kruskal-Wallis H-tests to examine differences in youth asthma exacerbations (measured by short-acting beta agonist use), asthma control, and ArQOL, as well as caregiver ArQOL, across phases of the COVID-19 pandemic. Results: Asthma exacerbations were higher prior to the onset of the pandemic compared to "during lockdown" and "post-lockdown," H(2) = 7.31, p < .05. Youth's asthma control was lower prior to the onset of the pandemic compared to youth enrolled "post-lockdown," H(2) = 7.04, p < .05. There were no differences in youth ArQOL across the duration of the pandemic. Caregiver ArQOL was significantly higher in the "post-lockdown," period, compared to caregivers enrolled prior to the pandemic onset, H(2) = 9.86, p < .01. Conclusion: Youth and caregiver asthma functioning improved following the onset of the pandemic. These findings build upon existing literature to highlight higher ArQOL in caregivers following the pandemic onset, likely related to improvements in youth asthma control and morbidity. Future research should explore trajectories of asthma and psychosocial functioning throughout the pandemic for families.

Exploring Caregiver Interest in and Preferences for Interventions for Children With Risk of Asthma Exacerbation: Web-Based Survey.

BACKGROUND: Maintaining control of asthma symptoms is the cornerstone of asthma treatment guidelines in the United States. However, suboptimal asthma control and asthma exacerbations among young people are common and are associated with many negative outcomes. Interventions to improve asthma control are needed. For such interventions to be successful, it is necessary to understand the types of interventions that are appealing to caregivers of children with different levels of risk of exacerbation. OBJECTIVE: This study aimed to evaluate whether caregivers of children with high (vs low) risk of asthma exacerbation show different levels of interest in and preferences for potential intervention programs and delivery methods. METHODS: We contracted with Ipsos to administer a web-based survey to caregivers of children with asthma who were residing in the United States. Caregivers (N=394) reported their interest (1=not at all; 3=a lot) in 9 possible intervention programs and 8 possible intervention delivery methods. Caregivers also indicated their preferences by selecting the 3 intervention programs and 3 delivery methods that "most" interested them. Finally, caregivers completed 2 open-ended questions asking what other resources might be useful for managing their children's asthma. We classified children as having a high risk of exacerbation if they had an exacerbation in the past 3 months (n=116) and a low risk of exacerbation if otherwise (n=278). RESULTS: Caregivers reported higher levels of interest in all intervention programs and delivery methods if they cared for a child with a high risk rather than a low risk of exacerbation. However, regardless of the child's risk status, caregivers expressed the highest levels of interest in programs to increase their child's self-management skills, to help pay for asthma care, and to work with the school to manage asthma. Caregivers expressed the highest levels of interest in delivery methods that maintained personal control over accessing information (websites, videos, printed materials, and smartphone apps). Caregivers' preferences were consistent with their interests; programs and delivery methods that were rated as high in interest were also selected as one of the 3 that "most" interested them. Although most caregivers did not provide additional suggestions for the open-ended questions, a few caregivers suggested intervention programs and delivery methods that we had not included (eg, education about avoiding triggers and medication reminders). CONCLUSIONS: Similar interests and preferences among caregivers of children with high and low risk of exacerbation suggest a broad need for support in managing childhood asthma. Providers could help caregivers by directing them toward resources that make asthma care more affordable and by helping their children with asthma self-management. Interventions that accommodate caregivers' concerns about having personal control over access to asthma information are likely to be more successful than interventions that do not.

How are mental representations of asthma triggers and symptoms related to interpersonal risk perceptions? A psychometric investigation of caregivers of children with asthma.

OBJECTIVE: Parents and guardians (hereafter caregivers) make decisions for their children's medical care. However, many caregivers of children with asthma struggle to understand their child's illness. We used the psychometric paradigm to investigate how caregivers conceptualize, or mentally represent, asthma triggers and symptoms and how these representations are linked to perceived asthma exacerbation risk. METHODS: We asked 377 caregivers of children with asthma across the U.S. to rate 20 triggers or 20 symptoms along 15 characteristics. Caregivers also indicated their perceived risk of their child having an asthma exacerbation (hereafter interpersonal risk perceptions). Using principal components analysis, we extracted key dimensions underlying caregivers' ratings on the characteristics. Then we related the triggers' and symptoms' scores on the dimensions to caregivers' interpersonal risk perceptions. RESULTS: Interpersonal risk perceptions were higher for triggers with high ratings for the dimensions severe and relevant, and negative affect-yet manageable, but not chronic-yet unpredictable. Risk perceptions were also higher for symptoms with high ratings for the dimensions severe and unpredictable, and relevant and common, but not self-blame or manageable despite unknown cause. CONCLUSION: By identifying key dimensions underlying caregivers' mental representations of asthma triggers and symptoms, these findings can inform a new approach to asthma education.

Physical Activity Engagement: Perspectives From Adolescents With Comorbid Asthma and Overweight/Obesity and Their Caregivers.

OBJECTIVE: Most adolescents do not meet physical activity (PA) guidelines, and engagement rates are even lower among adolescents with asthma and overweight/obesity (OW/OB). Understanding barriers and facilitators to PA engagement that are unique to youth with comorbid asthma and OW/OB is important for PA promotion. The current qualitative study identified caregiver- and adolescent-reported factors contributing to PA among adolescents with comorbid asthma and OW/OB across the four domains of the Pediatric Self-Management Model: individual, family, community, and health care system. METHODS: Participants were 20 adolescents (Mage = 16.01; 55% male) with asthma and OW/OB and their caregiver (90% mothers). Caregivers and adolescents participated in separate semistructured interviews about influences, processes, and behaviors related to adolescent PA engagement. Interviews were analyzed using thematic analysis. RESULTS: Factors contributing to PA varied across four domains. The individual domain included influences (e.g., weight status, psychological and physical challenges, asthma triggers and symptoms) and behaviors (e.g., taking asthma medications, self-monitoring). At the family level, influences included support, lack of modeling, and independence; processes included prompts and praise; and behaviors included engaging in shared PA and providing resources. Community-level influences included surrounding and settings, social support, and cornonavirus disease-2019-related changes, while behaviors included engaging in PA with others and extracurricular activities. CONCLUSIONS: Influences, processes, and behaviors across multiple domains interact to impact adolescent PA engagement, highlighting factors that may be potential leverage points in prevention and intervention efforts to promote adolescent PA.

BabyByte: Qualitative Research to Inform the Development of an App to Improve Responsive Feeding Practices in Parents of Infants and Toddlers.

Responsive feeding is associated with a reduced risk of childhood obesity. The objective of this qualitative study was to determine parental preferences for mobile health (mHealth) app content and features designed to improve responsive feeding practices. Parents of 0-2-year-old children were interviewed individually. Interview questions were informed by the Technology Acceptance Model, and parents provided feedback on sample app content and features. Interviews were audio-recorded, transcribed verbatim, and coded by two researchers using thematic analysis; responses were compared by parent gender and income. Parents (n = 20 fathers, n = 20 mothers) were, on average, 33 years old, low-income (50%), identified as non-white (52.5%), and had a bachelor's degree or higher (62%). Overall, parents were most interested in feeding tips and recipe content, and app features that allowed tracking child growth and setting feeding goals. Fathers were most interested in content about first foods, choking hazards, and nutrition information, while mothers preferred content on breastfeeding, picky eating, and portion sizes. Parents with lower incomes were interested in nutrition guidelines, breastfeeding, and introducing solids. Non-low-income parents preferred information related to food allergies, portion sizes, and picky eating. The findings of this study provide considerations when developing mHealth apps to improve responsive feeding practices in parents.

The Association Between Caregiver Coping and Youth Clinic Attendance and Health-related Quality of Life in Pediatric Sickle Cell Disease.

Caregivers of youth with sickle cell disease (SCD) influence the youth disease management and psychosocial outcomes. Effective caregiver coping is important for improving disease management and outcomes since caregivers often report high disease-related parenting stress. This study characterizes caregiver coping and examines its relation to youth clinic nonattendance and health-related quality of life (HRQOL). Participants were 63 youth with SCD and their caregivers. Caregivers completed the Responses to Stress Questionnaire-SCD module to assess primary control engagement (PCE; attempts to change stressors or reactions to stress), secondary control engagement (SCE; strategies to adapt to stress), and disengagement (avoidance) coping. Youth with SCD completed the Pediatric Quality of Life Inventory-SCD module. Medical records were reviewed for the hematology appointment nonattendance rates. Coping factors were significantly different ( F [1.837, 113.924]=86.071, P <0.001); caregivers reported more PCE ( M =2.75, SD =0.66) and SCE ( M =2.78, SD =0.66) than disengagement ( M =1.75, SD =0.54) coping. Responses to short-answer questions corroborated this pattern. Greater caregiver PCE coping was associated with lower youth nonattendance (ß=-0.28, P =0.050), and greater caregiver SCE coping was related to higher youth HRQOL (ß=0.28, P =0.045). Caregiver coping is related to improved clinic attendance and HRQOL in pediatric SCD. Providers should assess caregiver coping styles and consider encouraging engagement coping.

Implementation of standardized asthma management programs in outpatient settings.

PURPOSE OF REVIEW: This article reviews new approaches, facilitators, barriers, and opportunities to increasing adoption of standardized asthma management programs in the outpatient care setting. RECENT FINDINGS: Primary care clinicians providing asthma care in the outpatient setting are challenged by the complexity of guidelines and want standardization of tools that are easy to use and that can be integrated within their practice's workflow. Programs that integrate clinical decision support tools within a practice's electronic health record and provide support from specialists may enhance uptake of asthma management programs in the outpatient setting and reduce asthma morbidity. Lack of an implementation science framework, consideration for organizational context, and clinician buy-in are recently recognized barriers to adoption of asthma programs and improved asthma outcomes. In addition, many of these interventions are labor intensive, costly, and may not be capable of wide dissemination because of the EHR interoperability problem. CONCLUSION: Programs that simplify the guidelines, integrate clinical decision support within the EHR, and ground their approach with an implementation science framework may improve the quality of asthma care provided in the outpatient setting.

Risk and Protective Factors for Physical Activity Engagement Among Adolescents With Comorbid Asthma and Obesity.

OBJECTIVE: The current study identifies levels of physical activity (PA) engagement among adolescents with neither asthma nor overweight/obesity (OW/OB), one, or both conditions. Risk and protective factors are examined across groups. METHODS: Data from 8th, 9th, and 11th graders were obtained from the 2019 Minnesota Student Survey (N = 125,164). One-way analysis of variance was used to assess PA levels across risk groups. Linear regressions were used to examine patterns of risk and protective factors for adolescent PA engagement across four groups (neither asthma nor OW/OB, asthma only, OW/OB only, and comorbid asthma + OW/OB). Results were stratified by race/ethnicity. RESULTS: Adolescents with OW/OB only or asthma + OW/OB had significantly lower PA levels than youth with asthma only or neither condition (M = 3.65-3.67 days/week, SD = 2.20 vs M = 4.15-4.19 days/week, SD = 2.16-2.17, p < .001). The following variables were associated with adolescent PA (p < .001): Adult community care across all risk groups (ß ranges = .13-.16), depressive symptoms among those with neither and both asthma + OW/OB (ß's = -.10), and extracurriculars among those with asthma + OW/OB (ß = .10). Extracurriculars and parent connectedness were protective for Hispanic adolescents. CONCLUSIONS: Adolescents with OW/OB had significantly lower levels of PA compared to those without, regardless of asthma status. Individual and relational factors influenced adolescent PA. Future research investigating factors influencing adolescent PA should consider depressive symptoms, connectedness to adults in the community, non-sport-related extracurricular activity involvement, and address disparities among minoritized youth.

Psychometric properties and predictive validity of the PP-ACT.

OBJECTIVE: The Parent Proxy Asthma Control Test (PP-ACT) is a self-report measure of asthma control completed by caregivers on behalf of a child. We examined the psychometric properties and the reliability and predictive validity of the PP-ACT. METHODS: We conducted two studies (one cross-sectional, one longitudinal over three months) that surveyed caregivers (N = 1622) of children with asthma. Caregivers completed the PP-ACT and a variety of other measures, including child health outcomes. RESULTS: We found clear evidence that the five-item PP-ACT assesses two distinct constructs: Items 1-4 (which we call the PP-ACT4) assess symptoms, impairment, and use of a short acting beta-2 blocker (albuterol); Item 5 assesses caregivers' global subjective assessment of their child's asthma control. In addition, the two constructs function as unique predictors of asthma outcomes. Both the PP-ACT4 and Item 5 predicted unique variance in ED visits, the number of symptom-free days, and child quality of life. Only the PP-ACT4 predicted frequency of ICS use and only at Time 1 in Study 1. Conversely, Item 5 predicted exacerbation frequency whereas the PP-ACT4 did not. CONCLUSION: Our findings suggest that researchers and clinicians should treat the PP-ACT4 and Item 5 as distinct indicators of asthma control because they differentially predict asthma outcomes and likely have distinct meanings to caregivers.Supplemental data for this article is available online at https://doi.org/10.1080/02770903.2022.2036755 .

Adolescents' practical knowledge of asthma self-management and experiences in the context of acute asthma: a qualitative content analysis.

OBJECTIVE: To characterize adolescents' practical knowledge of asthma self-management and experiences during acute asthma episodes, and compare practical knowledge between minority and non-minority groups. METHODS: We conducted a secondary analysis using a qualitative descriptive design of textual data collected from 126 adolescents that participated in a randomized controlled trial of an asthma self-management program. Directed content analysis was conducted using four constructs of asthma self-management including symptom prevention, symptom monitoring, acute symptom management, and symptom communication. RESULTS: Most of the adolescents knew how to prevent exercised-induced bronchoconstriction, but had limited understanding about how to assess and monitor the severity of acute symptoms, appropriately use bronchodilators, seek timely medical help, and communicate acute symptoms to caregivers or healthcare providers during a slow-onset and rapid-onset asthma attack. More minority participants monitored asthma using peak expiratory flow than non-minority participants, who often relied on symptom-based monitoring. Minority adolescents more frequently mentioned bronchodilator use to manage asthma attacks, while non-minority adolescents often reported use of complementary and alternative approaches. Minority youth mentioned accessing healthcare services for acute episodes more often than their non-minority counterparts. Minority participants mentioned communicating acute symptoms to their providers, or family members less frequently than non-minority youth. CONCLUSIONS: Adolescents have insufficient practical knowledge about ways to prevent and manage acute asthma. Periodic assessment of learning needs related to asthma attacks should be considered a routine part of clinical visits for adolescents to provide targeted information support to address their identified needs.

Implementation of a pediatric asthma management program in rural primary care clinics.

OBJECTIVE: Rural communities experience a significant asthma burden. We pilot tested the implementation of Easy Breathing, a decision support program for improving primary care provider adherence to asthma guidelines in a rural community, and characterized asthma risk factors for enrollees. METHODS: We implemented Easy Breathing in two rural primary care practices for two years. Patient demographics, exposure histories, asthma severity, asthma medications, and treatment plans were collected. Providers' adherence to guidelines included the frequency of children with persistent asthma who were prescribed guidelines-based therapy and the frequency of children with a written asthma treatment plan on file. Clinicians provided feedback on the feasibility and acceptability of Easy Breathing using a validated survey tool and through semi-structured interviews. RESULTS: Two providers implemented the program. Enrollment included 518 children, of whom 135 (26%) had physician-confirmed asthma. After enrollment into Easy Breathing, 75% of children with asthma received a written asthma treatment plan All children with persistent asthma were prescribed an anti-inflammatory drug as part of their treatment plan. Providers (n = 2) rated Easy breathing as highly acceptable (M = 4.5), feasible (M = 4.5), and appropriate (M = 4.5). Qualitative feedback was positive, with suggestions to integrate the paper-based program into the electronic health record system for broader uptake. Enrollees with asthma were more likely to have a family history of asthma and endorse exposure to tobacco smoke and cockroaches. CONCLUSIONS: Easy Breathing shows promise as a decision support system that can be implemented in rural, medically underserved communities via primary care.

Caregiver Perceptions of Change in Pediatric Asthma Control During the COVID-19 Pandemic.

Purpose: Although several indicators suggest that pediatric asthma control in the United States improved early in the pandemic, other indicators suggest not. Missing are reports from caregivers of the experiences of their children with asthma early in the pandemic. Methods: Using the PP-ACT and other measures that we specifically constructed for our research, we conducted a cross-sectional national survey of US caregivers of children with asthma (N=595) to examine perceived change in their child's asthma control and changes in reports of ED visits and use of emergency relief medicine and controller medicine pre-pandemic (January to March 2020) versus early-pandemic (June to September 2020). Results: Caregivers fell into three groups: most caregivers perceived that their child's asthma control was improved (50.3%) or unchanged (41.2%), and few reported worse control (8.5%). Surprisingly, all three groups of caregivers reported similar frequencies of early-pandemic and pre-pandemic ED visits and use of emergency relief medicine. Also surprising, caregivers who perceived their child's asthma as more controlled (compared with the other two groups) reported more frequent ED visits and use of emergency relief medicine, yet also more use of controller medicine at both early-pandemic and pre-pandemic. Conclusion: The mismatch between caregivers' perceptions of their child's early-pandemic asthma control and their reports of ED visits and use of emergency relief medicine suggests that caregivers may rely on a gist (a global evaluation that can include nonbiomedical evidence) when estimating their child's asthma control. Caregivers and their families could benefit from help from clinicians in understanding the discrepancy between subjective asthma control and asthma control indicators and in understanding what well-controlled asthma looks and feels like.

AIM2ACT: Randomized controlled trial protocol for a mobile health intervention for early adolescents with asthma.

Early adolescents diagnosed with asthma have difficulties consistently performing disease self-management behaviors, placing them at-risk for poor asthma control, morbidity, and reduced quality of life. Helpful caregiver support is pivotal in determining whether early adolescents develop and master asthma self-management behaviors. We developed Applying Interactive Mobile health to Asthma Care in Teens (AIM2ACT), a mobile health intervention to facilitate helpful caregiver support in early adolescents (12-15 year-olds) with poorly controlled asthma. AIM2ACT is a dyadic smartphone intervention that contains three components: 1) ecological momentary assessment to identify personalized strengths and weaknesses in asthma self-management behaviors; 2) collaborative identification and tracking of goals that help early adolescents to become increasingly independent in managing their asthma; and 3) a suite of skills training videos. This paper describes our plans to test the efficacy of AIM2ACT and evaluate long-term maintenance of treatment effects in a fully powered randomized controlled trial with 160 early adolescents with poorly controlled persistent asthma, ages 12-15 years, and a caregiver. Families will be randomly assigned to receive AIM2ACT (n = 80) or a mHealth attention control condition (n = 80) that accounts for attention and novelty of a technology-based intervention for 6 months. Assessments will occur at baseline, post-intervention, and 3-, 6-, and 12-month follow-up time points. We will collect patient-reported and objectively monitored (e.g., spirometry, adherence) outcomes. Given the timing of the trial, a secondary exploratory goal is to evaluate the perceived impact of COVID-19 on family functioning and parental control of their adolescent's asthma in the context of our intervention.

A Stress and Pain Self-management mHealth App for Adult Outpatients With Sickle Cell Disease: Protocol for a Randomized Controlled Study.

BACKGROUND: This paper describes the research protocol for a randomized controlled trial of a self-management intervention for adults diagnosed with sickle cell disease (SCD). People living with SCD experience lifelong recurrent episodes of acute and chronic pain, which are exacerbated by stress. OBJECTIVE: This study aims to decrease stress and improve SCD pain control with reduced opioid use through an intervention with self-management relaxation exercises, named You Cope, We Support (YCWS). Building on our previous findings from formative studies, this study is designed to test the efficacy of YCWS on stress intensity, pain intensity, and opioid use in adults with SCD. METHODS: A randomized controlled trial of the short-term (8 weeks) and long-term (6 months) effects of YCWS on stress, pain, and opioid use will be conducted with 170 adults with SCD. Patients will be randomized based on 1:1 ratio (stratified on pain intensity [≤5 or >5]) to be either in the experimental (self-monitoring of outcomes, alerts or reminders, and use of YCWS [relaxation and distraction exercises and support]) or control (self-monitoring of outcomes and alerts or reminders) group. Patients will be asked to report outcomes daily. During weeks 1 to 8, patients in both groups will receive system-generated alerts or reminders via phone call, text, or email to facilitate data entry (both groups) and intervention use support (experimental). If the participant does not enter data after 24 hours, the study support staff will contact them for data entry troubleshooting (both groups) and YCWS use (experimental). We will time stamp and track patients' web-based activities to understand the study context and conduct exit interviews on the acceptability of system-generated and staff support. This study was approved by our institutional review board. RESULTS: This study was funded by the National Institute of Nursing Research of the National Institutes of Health in 2020. The study began in March 2021 and will be completed in June 2025. As of April 2022, we have enrolled 45.9% (78/170) of patients. We will analyze the data using mixed effects regression models (short term and long term) to account for the repeated measurements over time and use machine learning to construct and evaluate prediction models. Owing to the COVID-19 pandemic, the study was modified to allow for mail-in consent process, internet-based consent process via email or Zoom videoconference, devices delivered by FedEx, and training via Zoom videoconference. CONCLUSIONS: We expect the intervention group to report reductions in pain intensity (primary outcome; 0-10 scale) and in stress intensity (0-10 scale) and opioid use (Wisepill event medication monitoring system), which are secondary outcomes. Our study will contribute to advancing the use of nonopioid therapy such as guided relaxation and distraction techniques for managing SCD pain. TRIAL REGISTRATION: ClinicalTrials.gov NCT04484272; https://clinicaltrials.gov/ct2/show/NCT04484272. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/33818.

A systematic review and proposed conceptual model of sleep disturbances during pediatric hospitalizations.

STUDY OBJECTIVES: The current review aims to examine factors that influence pediatric inpatient sleep and determine the effectiveness of sleep promotion interventions among hospitalized children. METHODS: A systematic literature search was conducted across PubMed, PsycINFO, CINAHL, Cochrane Central, Web of Science, Embase, and Scopus databases. Studies included children with a mean age between 1 and 18 years old that either described factors affecting the sleep of children who are hospitalized on a non-intensive care unit or reported on sleep-related intervention outcomes. We conducted separate narrative reviews for each of the two aims and then synthesized findings from quantitative and qualitative studies across both aims. RESULTS: Forty-five articles were included for review. Despite most sleep disturbances being attributed to environmental disruptions (e.g. noise, staff interruptions), most interventions targeted the child level using relaxation techniques. Although the majority of interventions were small pilot studies, preliminary findings appear to positively impact sleep duration. The Pediatric Inpatient Sleep Model was proposed to illustrate connections between sleep disturbances, factors influencing sleep, and existing intervention components. CONCLUSIONS: Replication studies are needed, including larger-scale sleep promotion interventions among hospitalized children. Given the identification of environmental factors as the main cause of night wakings, environmental modifications are crucial. Additional research examining contributors to intraindividual variability in disrupted sleep patterns during hospitalizations as well as the consequences of these disturbances is warranted.