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.

Utility of a pediatric psychosocial screener in an outpatient burn clinic.

Psychosocial concerns are common among youth who sustained a burn injury. Detecting psychosocial distress early is essential to ensure appropriate treatment and referrals. Thus far, research has focused largely on long-term outcomes of pediatric burn survivors. The current quality improvement initiative details the implementation and outcomes of brief, pragmatic screening to assess psychosocial concerns among pediatric burn survivors in an outpatient setting. A primary caregiver completed an age-appropriate psychosocial screener for youth ages 4-10 years (n=69), while patients aged 11-17 years (n=72) completed a self-report screener. Total scores were used to categorize patients as acute risk (i.e., emotional concerns requiring immediate attention), moderate-risk (i.e., elevated symptoms, but no immediate safety concerns), or low-risk (i.e., endorsing few to no symptoms). Acute risk patients were evaluated by medical staff to determine the need for immediate psychiatry intervention or social services referrals. Moderate-risk patients met with the on-site psychology team during their clinic visit or were contacted by telephone within one week. Patients in the low-risk category warranted no additional follow-up post-screening. Most patients scored in the low-risk category (n=120; 85%), while 11% (n=16) and 4% (n=5) endorsed symptoms consistent with moderate and acute risk, respectively. Results demonstrate the utility of implementing pediatric psychosocial screening in an outpatient burn clinic, the importance of detecting psychosocial concerns in this context, and usage of referrals to address concerns. Findings also shed light on key caveats of psychosocial screening, barriers to accessing psychosocial support, and the potential benefits of embedded psychological support during medical visits.

Design of a community-based, Hybrid Type II effectiveness-implementation asthma intervention study: The Rhode Island Asthma Integrated Response (RI-AIR) program.

BACKGROUND: Pediatric asthma is among the most common health conditions and disproportionately impacts Black and Latino children. Gaps in asthma care exist and may contribute to racial and ethnic inequities. The Rhode Island Asthma Integrated Response (RI-AIR) program was developed to address current limitations in care. The aims of the RI-AIR Hybrid Type II effectiveness-implementation trial were to: a) simultaneously evaluate the effectiveness of RI-AIR on individual-level and community-level outcomes; b) evaluate implementation strategies used to increase uptake of RI-AIR. In this manuscript, we outline the design and methods used to implement RI-AIR. METHODS: School-based areas (polygons) with the highest asthma-related urgent healthcare utilization in Greater Providence, R.I., were identified using geospatial mapping. Families with eligible children (2-12 years) living in one of the polygons received evidence-based school- and/or home-based asthma management interventions, based on asthma control level. School-based interventions included child and caregiver education programs and school staff trainings. Home-based interventions included individualized asthma education, home-environmental assessments, and strategies and supplies for trigger remediation. Implementation strategies included engaging school nurse teachers as champions, tailoring interventions to school preferences, and engaging families for input. RESULTS: A total of 6420 children were screened throughout the study period, 811 were identified as eligible, and 433 children were enrolled between November 2018 and December 2021. CONCLUSIONS: Effective implementation of pediatric asthma interventions is essential to decrease health inequities and improve asthma management. The RI-AIR study serves as an example of a multi-level intervention to improve outcomes and reduce disparities in pediatric chronic disease. CLINICAL TRIALS REGISTRATION NUMBER: NCT03583814.

Psychosocial functioning in pediatric food allergies: A scoping review.

The psychosocial burden of food allergy (FA) can significantly affect the lives of pediatric patients and their families. A comprehensive understanding of the state of the literature on psychosocial functioning is imperative to identify gaps that may affect clinical care and future research. This review characterizes the current literature on psychosocial functioning in pediatric patients with FA and their caregivers, siblings, and families. A literature search of 5 databases (PubMed, Ovid MEDLINE, PsycINFO, Web of Science, and Embase) was conducted to identify original research articles and abstracts on psychosocial functioning of patients with FA who were aged 0 to 18 years and their caregivers, siblings, and families. A total of 257 studies met the inclusion criteria. The majority of studies examined child or caregiver psychosocial functioning, with child and caregiver quality of life examined most frequently. Most studies utilized quantitative and cross-sectional methods and inconsistently reported participant race and ethnicity. Existing research on psychosocial functioning in pediatric FA may not be generalizable to patients of color and families and siblings. Future research should diversify recruited samples regarding race, ethnicity, and country of origin; examine psychosocial functioning longitudinally; examine constructs beyond quality of life; and adopt a biopsychosocial approach by considering the interplay among psychosocial functioning, disease burden, and social contexts.

Pictorial versus written asthma action plans for youth: initial impact on regimen knowledge, medication adherence, symptom control, and family satisfaction.

OBJECTIVE: Asthma action plans (AAP) are recommended to guide asthma management. Written AAPs (WAAPs) are under-utilized and can be difficult to understand. Our study designed and tested a simplified pictorial AAP (PAAP). We hypothesized that better outcomes would be obtained for youth with the PAAP. METHODS: One hundred and sixty-nine (169) youth (aged 8-17; AAP-naïve) were screened for this pilot, 2-arm randomized controlled trial. Feasibility, usability and preliminary efficacy of PAAP compared to a WAAP, for improving outcomes (inhaled corticosteroid (ICS) adherence, symptom control, AAP knowledge, AAP satisfaction) were assessed quantitatively. Youth received an AAP from their physician after completing baseline measures and completed measures at three additional time points (1-, 3-, and 6-month). RESULTS: Forty-five youth were recruited (PAAP = 22; WAAP = 23). Youth AAP knowledge was higher for the PAAP group compared to the WAAP group (p = .017). ICS adherence did not differ between groups, over time, or based on prescribed dosing; however, for WAAP participants, adherence was lower with a higher daily prescription (4 puffs) relative to a lower dose (p = .006). Symptom control improved with both AAPs, but the change was not statistically significant. Lung function did not change significantly by AAP type or time, and literacy variables were not related significantly to outcomes. Youth satisfaction with AAP improved significantly for the PAAP group compared to the WAAP group (p = .03). CONCLUSIONS: Higher AAP knowledge and satisfaction among youth in the PAAP group suggests that structured education from a physician using a PAAP is beneficial. Intervention and study design insights gained will guide future research.

Validation of the Electronic Cigarette Expectancy Scale for Adolescents.

INTRODUCTION: Expectancies of costs and benefits can be predictive of tobacco use, as well as cessation attempts and success. Measuring electronic cigarette (ECIG) expectancies is in its infancy, particularly among adolescents. However, the popularity of adolescent ECIG use demonstrates the need to understand better these contributing factors. Our aim was to evaluate the factor structure and initial psychometric properties of an ECIG expectancies questionnaire adapted from an existing validated scale for conventional cigarette smoking (Smoking Expectancy Scale for Adolescents; SESA). METHODS: Five-hundred sixty-nine adolescents (14-18 years; 60.1% female; 84.1% White) were recruited from high schools and an adolescent medicine clinic. Participants completed a battery of self-report measures, including the ECIG Expectancies Scale for Adolescents (EESA). Exploratory factor analyses were used to examine the underlying factor structure, and convergent validity was evaluated using variables conceptually related to ECIG expectancies. RESULTS: A three-factor solution was chosen based on statistical evidence and conceptual relevance. All three factors - Costs, Social Benefits, and Affective/Weight Benefits - had strong internal consistencies and demonstrated convergent validity via significant associations with peer ECIG use and Conscientiousness. The Costs and Affective/Weight Benefits factors also demonstrated convergent validity with sensation-seeking, intention to use ECIGs, and ECIG use status (current, lifetime, nonuser). CONCLUSION: Results support the initial reliability and validity of the EESA scores. This factor structure is related to, yet different from, that observed not only for the SESA but also for other ECIG-expectancy measures among adult populations.

Couples talk about breastfeeding: Interviews with parents about decision-making, challenges, and the role of fathers and professional support.

Despite health benefits, sustained breastfeeding rates remain low in the United States, and the role of partners in breastfeeding is not well understood. Using a grounded theory approach, the current qualitative study explored how couples communicate regarding breastfeeding decisions and challenges. Mother-father dyads (n = 16) completed individual semi-structured interviews 1 year after the birth of their first child. Following iterative qualitative analysis, three phases of breastfeeding communication emerged: Should we try this? ( Mother's opinion counts) How do we make this work? (adjusting and problem-solving) and How do we settle into a routine? (gaining confidence, resolving issues) Findings underscore the complexity of defining the partner role in breastfeeding.

Associations Between Peer Use, Costs and Benefits, Self-Efficacy, and Adolescent E-cigarette Use.

OBJECTIVE: Prior research identified peer use as a salient risk factor of adolescent electronic cigarette (e-cigarette) use, but has not expanded on the mechanisms of this association. METHODS: Participants were 562 adolescents recruited from rural and suburban public high schools and an adolescent medicine clinic in the mid-Atlantic United States. Participants completed a packet of questionnaires that assessed demographics, substance use, expectations about the consequences of e-cigarette use, and perceptions of their own self-efficacy to resist using e-cigarettes. We estimated a series of mediation models using the MODEL INDIRECT command in MPLUS statistical software. In all models, significance of indirect effects from peer e-cigarette use to self-reported e-cigarette use were tested via two variables: (a) expected costs, (b) benefits of e-cigarette use, and (c) the perceived self-efficacy of the individual to refrain from e-cigarette use. RESULTS: Adolescents with more peers using e-cigarettes were more likely to have ever used an e-cigarette and perceived greater benefits and fewer costs, which was associated with a reduced self-efficacy to refrain from e-cigarette smoking (Model 1). Those with more peers using e-cigarettes were more likely to be currently using e-cigarettes themselves because they perceived greater benefits and fewer costs, which was associated with a reduced self-efficacy to refrain from e-cigarette smoking (Model 2). CONCLUSION: Peer use, self-efficacy to resist use, and expectations of cost and benefits of e-cigarette use should be considered as possible targets when devising tailored interventions and policies to prevent or reduce negative health consequences of long-term e-cigarette use.

Accuracy of Body Size Estimation in Youth with Cystic Fibrosis and Association with Health-Related Quality of Life.

Accuracy of body size estimation may impact motivation to adhere to treatment recommendations and health-related quality of life (HRQOL) in youth with cystic fibrosis (CF), but this has not yet been investigated. Thus, the goal of the current study was to examine accuracy of body size estimation in youth with CF, and associations with HRQOL, lung functioning, and dietary intake. Fifty-four youth diagnosed with CF (M = 13.61 years) completed the Figure Rating Scale, the Cystic Fibrosis Questionnaire-Revised, and a 24-h diet recall interview. Cohen's Weighted Kappa Coefficient evaluated agreement between body size estimation and BMI percentile. Binary logistic regression analyses examined associations between body size accuracy and HRQOL, lung functioning, and dietary intake. A less than adequate agreement was found between youth body size estimation and BMI percentile. Most participants overestimated body size (69.8%). Body Image HRQOL, but neither lung functioning nor dietary intake, was significantly associated with body size estimation accuracy. Working with patients to improve perceptions of body size may also improve HRQOL scores and allow for discussion about treatment goals related to body size.

Comparing Written Versus Pictorial Asthma Action Plans to Improve Asthma Management and Health Outcomes Among Children and Adolescents: Protocol of a Pilot and Feasibility Randomized Controlled Trial.

BACKGROUND: Asthma is an important focus for pediatric health research as management of asthma symptoms is a significant challenge, and morbidity and mortality among youths with asthma remain prevalent. Treatment guidelines for asthma recommend a written asthma action plan (WAAP) that summarizes individualized instructions for daily medication use. However, WAAPs are typically written at a seventh- to ninth-grade reading level, which can be a barrier to young people in understanding their treatment, having confidence in using a WAAP, and engaging with asthma education. OBJECTIVE: Utilizing a feasibility and pilot randomized controlled trial (RCT) design, the objective of the Take Action for Asthma Control study is to test a symptom-based, computer-generated pictorial asthma action plan (PAAP) in comparison with a standard WAAP and assess the feasibility and acceptability of the asthma action plan (AAP) intervention and study procedures. The study has 3 aims: (1) estimate the effect sizes of PAAPs compared with WAAPs on outcomes (eg, AAP knowledge and medication adherence), (2) evaluate feasibility and acceptability of AAP intervention and RCT procedures from the perspectives of key stakeholders, and (3) establish whether parent and youth literacy levels are associated with treatment outcomes. METHODS: This feasibility and pilot RCT is a block randomized, 2-arm, parallel-group clinical trial, lasting 6 months in duration. At baseline, participants will be randomly assigned to receive a PAAP or WAAP generated for them and reviewed with them by their asthma physician. Study procedures will take place over 4 separate time points: a baseline clinic appointment, 1-month telephone follow-up, and 3- and 6-month clinic-based follow-ups. At each time point, data will be collected related to the main outcomes: AAP knowledge, AAP satisfaction, asthma control, pulmonary function, and adherence to daily asthma medication. A sample size of up to 60 participants (aged 8-17 years) will be recruited. Feasibility and acceptability data will be collected via one-to-one qualitative interviews with providers involved in the study and a subgroup of families that participate in the study. RESULTS: Recruitment and data collection began in May 2017 and were completed in October 2018. CONCLUSIONS: This pilot and feasibility study will test the potential efficacy, feasibility, and acceptability of an AAP intervention and study procedures. The findings will inform the design and delivery of a future definitive trial to assess the efficacy of PAAPs versus WAAPs in supporting asthma self-management among children and adolescents. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/11733.

First-time parents' shared representation of postpartum depressive symptoms: A qualitative analysis.

RATIONALE: Maternal postpartum depression (PD) is a common, debilitating mental health problem. Yet despite effective treatments and widespread screening, treatment rates remain low. Previous studies suggest fathers are frequently consulted about maternal PD symptoms, but little is known about the process, content, or outcomes of these consultations. OBJECTIVE: The aim of this work was to explore how couples communicate about PD symptoms. METHODS: A single purposive sample of first-time parents stratified by maternal depression screening scores (Edinburgh Postnatal Depression Scale; EPDS) and partner status was drawn from a prospective survey of 300 parents in the U.S. Midwest. Partnered mothers with an elevated (EPDS≥10) depression screening score at one of four time points in the postpartum year comprised the majority of the sample. Smaller samples of participants with low EPDS scores and single participants were included to provide contrast in the consultation and decision making process. A total of 39 participants (22 married/EPDS-high, 10 married/EPDS-low, 5 single/ EPDS-high, 2 single/EPDS-low) were interviewed at one year postpartum. Mothers and fathers were interviewed separately to promote candid responses and allow comparison of illness conceptualizations. Interviews were transcribed, analyzed, and coded through an iterative process. RESULTS: Couples' conversations about mood changes centered on two overarching questions: How bad is it? and What should we do about it? Answering How bad is it? involved parents comparing maternal mood changes to uncertain depression criteria, and mothers asking partners and female relatives whether changes were normal. Answering What should we do about it? had three themes: Fathers feeling unprepared to respond to depression, mothers and fathers expressing reluctance to seek treatment, and couples working collaboratively to accommodate treatment or self-care. CONCLUSION: Themes suggest partners significantly contribute to women's conceptualization of mood changes and should be actively engaged in education, screening, and referral practices.

Equality for all? White Americans' willingness to address inequality with Asian and African Americans.

White Americans' willingness to engage in dialogues about intergroup commonalities and power inequalities with Asian and African Americans were examined in two experiments. Because Whites perceive that African Americans experience greater discrimination than do Asian Americans, we predicted that they would be more willing to engage in dialogues that would interrogate injustice and inequality with them. We also explored the role of common in-group identity (as Americans) on willingness for dialogue about inequality. In both studies, Whites were less interested in engaging in power talk with Asian Americans than with African Americans, but the difference in willingness for commonality talk was smaller. Asian Americans were perceived as experiencing lower levels of discrimination (Studies 1 and 2) and identify less with America (Study 2) both of which predicted lower willingness for power talk with them. Common in-group identity manipulations had marginal effects on willingness for power talk with African Americans and no effect on power talk with Asian Americans. Implications for improving social disparities between various groups were discussed.