Natalie Koskela-Staples

Background: Adolescent asthma is a significant contributor to youth morbidity and is known to be best managed through consistent medication use and symptom management. However, adolescents often struggle to perceive their symptoms accurately and consistently use their medication at the recommended rate, risking worsened symptoms and impaired quality of life. The Responsive Asthma Care for Teens (ReACT) system is a project aimed at identifying and and providing supporting for several barriers adolescents may face in asthma management. By integrating both software and hardware to monitor medication adherence, ReACT provides a personalized support plan to improve asthma management and, subsequently, quality of life. Objective: The objective of this study is to conduct a proof-of-concept assessment of the ReACT system following an initial pilot study and adjusting for the feedback received. In addition to assessing the acceptability and usability of the current version, this study aims to assess whether the proposed ReACT system leads to indications of improvement in medication adherence because of the personalized support plans. Methods: Participants in the study were 5 adolescents aged 15 to 17 years recruited using a combination of consent-to-contact forms delivered via an in-person asthma clinic and Qualtrics panels. As a part of this study, participants met with the study team 3 times over 1 month. After completing initial surveys on stress, problem-solving, and asthma-related quality of life, we oriented the participants to the ReACT platform and asked them to interact with it as normal. After the month, the participants were interviewed, and they discussed the system and completed surveys assessing their opinions on acceptability and usability. Results: On a 4-point scale, participants reported high acceptability of ReACT (mean score 3, SD 0.32), willingness to use it again (mean score 4, SD 0.89), and willingness to recommend it to a friend (mean score 3.75, SD 0.55), and they considered it to be helpful (mean score 3.2, SD 0.84). Conclusions: Our findings suggest that ReACT is an acceptable and usable mobile health intervention to improve asthma self-management among adolescents, and it had promising results for improving self-regulation, problem-solving, and asthma control. The system continues improving based on feedback from a larger sample size of participants, and we hope that ReACT will aid adolescent development while delivering highly personalized support for each user.

Objective: Parent–child communication is integral to pediatric asthma management. This review evaluates parent–child communication among youth with asthma and their caregivers. It aims to characterize the type of communication according to a unifying framework (Murphy, L. K., Murray, C. B., & Compas, B. E., Guest Editors: Cynthia A. Gerhardt, Cynthia A. Berg, Deborah J. Wiebe and Grayson N. Holmbeck (2017). Topical review: Integrating findings on direct observation of family communication in studies comparing pediatric chronic illness and typically developing samples. Journal of Pediatric Psychology, 42, 85–94. https://doi.org/10.1093/jpepsy/jsw051), assess sociodemographic factors associated with communication, and examine the relationship between parent–child communication and youth psychosocial and health-related outcomes. Methods: A systematic literature search was conducted using PubMed, PsycINFO, CINAHL, Web of Science, Cochrane Library, and Embase databases (June 2021; updated May 2024). Included studies reported original, peer-reviewed research on the relationship between parent–child communication and youth psychosocial or health outcomes among pediatric patients (mean age <18 years) with asthma and their primary caregiver(s). Study quality was evaluated using the Study Quality Assessment Tools of the NHLBI. Results: Sixty-six articles were included with data from 5,373 youth with asthma. Studies assessed both positive (warm and structured) and negative (hostile/intrusive and withdrawn) communication. Most studies used questionnaires and cross-sectional designs. Associations between sociodemographic and communication variables were largely nonsignificant. Greater positive and less negative communication was associated with better youth psychosocial and asthma outcomes overall. Conclusion: Parent–child communication may be an important target for interventions aimed at improving youth outcomes. More research is needed to develop communication-focused interventions that aim to enhance parents’ and youths’ communication skills (i.e., increase their use of positive communication approaches and/or reduce their use of negative communication approaches) and evaluate their impact on youth outcomes. Future research should also use more discussion tasks and longitudinal designs.

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 (β = −.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.

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.

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, PM=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 (β=−0.28, P=0.050), and greater caregiver SCE coping was related to higher youth HRQOL (β=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.

Objective: The current systematic review (PROSPERO ID: CRD42020220142) aims to characterize sleep health in pediatric inflammatory bowel disease (IBD) and evaluate disease-related and psychosocial prognostic factors associated with sleep disturbances in pediatric IBD. Methods: A search of PubMed, PsycINFO, CINAHL, Web of Science, and Cochrane databases was performed. Included studies were written in English, presented original peer-reviewed research, included participants with a mean age of 8–18 years, and reported on at least one quantitative sleep outcome for children with IBD or factors impacting sleep for these children. Studies that did not report on a sleep outcome or factors influencing sleep, or only examined fatigue were excluded. Study quality was evaluated using validated quality assessment tools. The data from the included studies were extracted and synthesized across sleep health domains. Results: Database searches yielded 122 records (total participants = 3,905). After full-text and reference/citation searches, 28 articles were included in the review. Methods used to evaluate sleep widely varied across studies and a majority of the studies were cross-sectional. Results suggest that children with IBD may not experience more frequent sleep disturbance than healthy children. Greater sleep disturbance in pediatric IBD was found to be associated with poorer psychosocial functioning and greater active disease/severe symptoms. Conclusions: The findings from this review highlight the complex associations between sleep disturbances, inflammation, disease severity, and psychosocial functioning in children with IBD. Additional research with greater methodological rigor (e.g., use of validated sleep measures, longitudinal design, reporting of effect sizes) is warranted to further elucidate these relationships. Summary: The current systematic review examines the existing evidence and methods of measurement of sleep disturbances in pediatric inflammatory bowel disease. We describe and evaluate factors associated with sleep disturbance in this population. The quality of evidence, strengths and weaknesses of the literature, and future directions are described.

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. 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. 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 (β ranges = .13–.16), depressive symptoms among those with neither and both asthma + OW/OB (β’s = –.10), and extracurriculars among those with asthma + OW/OB (β = .10). Extracurriculars and parent connectedness were protective for Hispanic adolescents. 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.

Objective: Caregiver–adolescent collaborative decision-making is a key component of effective self-management, although there is limited understanding of this relationship in pediatric asthma. The current study examined the association between parent and youth decision-making and asthma self-management behaviors. Method: Participants included 33 youth ages 12–15 years ( M _age = 13.18, SD = 1.16) with poorly controlled, persistent asthma and their caregivers. Participants completed the Family Asthma Management System Scale interview to assess core aspects of asthma management. The Decision Making Involvement Scale was administered to evaluate caregiver and adolescent behaviors during asthma-related decision-making. Results: Seventy percent of dyads reported discussing the adolescent’s asthma in the past 2 weeks. Forty-seven percent of families reached a final decision during the discussion, and 18% made a partial decision. Either the caregiver (41%) or the dyad together (27%) made the final decision. Youth whose parents made the final decision reported poorer responses to acute asthma symptoms ( p = .03, d = 0.99). Higher parental expression of information was associated with better family response to acute asthma symptoms, p = .045, R ² = 0.69. Conclusions: Findings indicate that joint caregiver–youth collaborative decision-making and parent involvement in asthma-care decision-making were associated with better response to asthma exacerbations. A significant portion of families is not discussing their adolescent’s asthma, and future research is needed to identify what families are at risk for reduced communication regarding asthma-care decision-making. Health professionals should assess both caregiver and adolescent decision-making involvement when addressing asthma self-management. Implications for Impact Statement: This study advances the idea that caregiver and youth collaboration during health-related decision-making is important for fostering disease management within pediatric asthma. Findings also highlight the need for disease management interventions targeting increased caregiver–youth communication surrounding the adolescent’s asthma care.

Background: Adolescents diagnosed with persistent asthma commonly take less than 50% of their prescribed inhaled corticosteroids (ICS), placing them at risk for asthma-related morbidity. Adolescents’ difficulties with adherence occur in the context of normative developmental changes (eg, increased responsibility for disease management) and rely upon still developing self-regulation and problem-solving skills that are integral for asthma self-management. We developed an adaptive mobile health system, Responsive Asthma Care for Teens (ReACT), that facilitates self-regulation and problem-solving skills during times when adolescents’ objectively measured ICS adherence data indicate suboptimal rates of medication use.Objective: The current paper describes our user-centered and evidence-based design process in developing ReACT. We explain how we leveraged a combination of individual interviews, national crowdsourced feedback, and an advisory board comprised of target users to develop the intervention content.Methods: We developed ReACT over a 15-month period using one-on-one interviews with target ReACT users (n=20), national crowdsourcing (n=257), and an advisory board (n=4) to refine content. Participants included 13-17–year-olds with asthma and their caregivers. A total of 280 adolescents and their caregivers participated in at least one stage of ReACT development.Results: Consistent with self-regulation theory, adolescents identified a variety of salient intrapersonal (eg, forgetfulness, mood) and external (eg, changes in routine) barriers to ICS use during individual interviews. Adolescents viewed the majority of ReACT intervention content (514/555 messages, 93%) favorably during the crowdsourcing phase, and the advisory board helped to refine the content that did not receive favorable feedback during crowdsourcing. Additionally, the advisory board provided suggestions for improving additional components of ReACT (eg, videos, message flow).Conclusions: ReACT involved stakeholders via qualitative approaches and crowdsourcing throughout the creation and refinement of intervention content. The feedback we received from participants largely supported ReACT’s emphasis on providing adaptive and personalized intervention content to facilitate self-regulation and problem-solving skills, and the research team successfully completed the recommended refinements to the intervention content during the iterative development process.

BACKGROUND Adolescents diagnosed with persistent asthma commonly take less than 50% of their prescribed inhaled corticosteroids (ICS), placing them at risk for asthma-related morbidity. Adolescents’ difficulties with adherence occur in the context of normative developmental changes (eg, increased responsibility for disease management) and rely upon still developing self-regulation and problem-solving skills that are integral for asthma self-management. We developed an adaptive mobile health system, Responsive Asthma Care for Teens (ReACT), that facilitates self-regulation and problem-solving skills during times when adolescents’ objectively measured ICS adherence data indicate suboptimal rates of medication use. OBJECTIVE The current paper describes our user-centered and evidence-based design process in developing ReACT. We explain how we leveraged a combination of individual interviews, national crowdsourced feedback, and an advisory board comprised of target users to develop the intervention content. METHODS We developed ReACT over a 15-month period using one-on-one interviews with target ReACT users (n=20), national crowdsourcing (n=257), and an advisory board (n=4) to refine content. Participants included 13-17–year-olds with asthma and their caregivers. A total of 280 adolescents and their caregivers participated in at least one stage of ReACT development. RESULTS Consistent with self-regulation theory, adolescents identified a variety of salient intrapersonal (eg, forgetfulness, mood) and external (eg, changes in routine) barriers to ICS use during individual interviews. Adolescents viewed the majority of ReACT intervention content (514/555 messages, 93%) favorably during the crowdsourcing phase, and the advisory board helped to refine the content that did not receive favorable feedback during crowdsourcing. Additionally, the advisory board provided suggestions for improving additional components of ReACT (eg, videos, message flow). CONCLUSIONS ReACT involved stakeholders via qualitative approaches and crowdsourcing throughout the creation and refinement of intervention content. The feedback we received from participants largely supported ReACT’s emphasis on providing adaptive and personalized intervention content to facilitate self-regulation and problem-solving skills, and the research team successfully completed the recommended refinements to the intervention content during the iterative development process.