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BACKGROUND: High rates of medication non-adherence (52-73 %) in pediatric hematopoietic stem cell transplant (HCT), due to complex regimens and forgetfulness, increase life-threatening risks. PURPOSE: This mixed methods study aimed to develop and evaluate the usability of the BMT4me© mobile health application to enhance adherence to immunosuppressants in children undergoing HCT. DESIGN AND METHODS: A mixed methods, cross-sectional, iterative approach, with caregiver-child dyads and healthcare providers, was used to create the BMT4me© app prototype. This iterative approach involved continuously refining the app based on feedback from stakeholders at each phase. The process was user-centered, engaging patients, caregivers and healthcare providers in each stage. In phase 1, caregiver/child dyads (ages 8-17, n = 14) provided feedback on wireframes via qualitative interviews, which informed prototype development. Phase 2 involved focus groups with healthcare providers including physicians (n = 3), nurses (n = 15), and advanced practice nurses (n = 3) who evaluated the prototype's usability and provided feedback via reaction cards and the System Usability Scale (SUS). The System Usability Scale (SUS) measured usability, and thematic analysis identified key themes regarding engagement, ease of use, safety, and helpfulness. Quantitative data were analyzed using descriptive statistics, while qualitative data were thematically analyzed with NVivo software. RESULTS: The mean SUS score from healthcare providers was 84.2, notably higher than the average expected score of 68, indicating successful usability of the BMT4me app. Thematic analysis highlighted themes of engagement, ease of use, and safety among providers, and ease of use and helpfulness among children and caregivers. This feedback refined the app to better serve families, patients, and providers. PRACTICE IMPLICATIONS: The BMT4me© app shows promise in improving medication adherence in pediatric HCT patients. Integrating such mHealth applications into clinical practice will support adherence and improve outcomes in patients with high-risk, complex regimens. This app will guide practical implications and effectiveness of digital health tools. CONCLUSIONS: A user-centered design approach, involving multiple stakeholders, was essential in developing BMT4me app. Feedback facilitated enhancements in app features and functionality. Pilot feasibility testing with caregivers is ongoing. Future research will assess the efficacy of digital interventions on clinical outcomes in children with complex treatment regimens.
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Social contexts (e.g., family, friends) are important in predicting and preventing loneliness in middle childhood (MC) and adolescence; however, these social contexts were disrupted during the COVID-19 pandemic. Comparison of social context factors that may differentially contribute to loneliness at each developmental stage (MC vs. adolescence) during the COVID-19 pandemic have been overlooked. This study examined longitudinal predictors of loneliness, including social contexts and COVID-19 impact, within MC (8-12y) and adolescence (13-17y). Parents reported on demographic information, and their children completed surveys on COVID-19 impact, loneliness, and family functioning using the COVID-19 Exposure and Family Impact Survey (CEFIS), the NIH Toolbox Loneliness (Ages 8-17) measure, and the PROMIS Family Relationships Short Form 4a measure, respectively. Regression models examined time one (T1; May-June 2020) predictors of time two (T2; November 2020-January 2021) MC child (n=92, Mage=10.03) and adolescent (n=56, Mage=14.66) loneliness. For the MC child model, significant predictors of higher loneliness included worse family functioning as well as higher COVID-19 impact and lower family income. On the other hand, higher adolescent loneliness was significantly predicted by not having married/partnered parents and was marginally significantly predicted by higher COVID-19 impact. The regression model with the full sample and interaction terms revealed no significant interactions, but that lower family functioning and higher COVID-19 impact were significant predictors of higher loneliness. Lower family income and lower in-person communication were marginally significant predictors of higher loneliness in the combined interaction model. Lastly, further exploratory mediation analyses displayed that family functioning significantly mediated the relationship between COVID-19 impact and T2 loneliness only for MC children and the full sample. Results support future interventions focused on optimizing family functioning to help mitigate MC loneliness in the context of adversity, such as a global pandemic.
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COVID-19 , Solidão , Humanos , Solidão/psicologia , COVID-19/psicologia , COVID-19/epidemiologia , Adolescente , Criança , Masculino , Feminino , Pandemias , SARS-CoV-2 , Inquéritos e Questionários , Estudos Longitudinais , Relações Familiares/psicologiaRESUMO
COVID-19 public health measures caused significant disruptions to child and caregivers' mental and physical well-being, including quality of life (QoL). However, in samples outside the United States (U.S.), greater resilience has been linked to lower COVID-19 impact on child QoL. Thus, understanding individual and dyadic factors contributing to resilience and QoL during COVID-19 within the United States may provide important insight for points of intervention. This study aimed to characterize the interdependent effects of child and caregiver COVID-19 impact on child and caregiver resilience, as well as on child-reported and caregiver proxy-reported child QoL. U.S. caregivers (n = 231; 95.7% female) and their 8-17-year-old children (n = 231; 54.5% male; Mage = 11.87; SDage = 2.66) reported their COVID-19 impact between May and July 2020 (T1). Follow-up self-reports on resilience and child QoL occurred between November 2020 and January 2021 (T2). Two actor-partner interdependence models (APIM) and one actor-partner interdependence mediation model (APIMeM) assessed associations among caregiver and child COVID-19 impact, resilience, and QoL. An APIM revealed significant negative actor and partner effects of COVID-19 impact on child self-reported and caregiver proxy-reported child QoL. Another APIM revealed an actor effect from COVID-19 impact to one's own resilience. The APIMeM revealed two indirect effects revealing that when children or caregivers reported greater levels of T1 COVID-19 impact, it was associated with lower levels of T2 child-reported resilience, which was subsequently associated with lower T2 child-reported QoL. Findings suggested that both child and caregiver perceptions of the pandemic were important for their own and the others' resilience, as well as child QoL. (PsycInfo Database Record (c) 2024 APA, all rights reserved).
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COVID-19 , Cuidadores , Qualidade de Vida , Resiliência Psicológica , Humanos , COVID-19/psicologia , Qualidade de Vida/psicologia , Masculino , Feminino , Criança , Adolescente , Cuidadores/psicologia , Adulto , Estados UnidosRESUMO
Objective: This study explores mental health stressors related to family dynamics of Korean American college students during the time of the COVID-19 pandemic. Participants: In January 2021, using purposive sampling, we recruited 15 Korean American student leaders at a west coast university. Methods: Self-identified leaders were interviewed via Zoom, and data were transcribed verbatim and analyzed using a thematic analytic approach based on grounded theory. Results: Students leaders' perceived sources of family stress for Korean American college students centered on three themes: (1) loss of independence, (2) family pressure, and (3) strained family relationships. Conclusion: Study findings offer insight for college mental health programming regarding family stressors, especially as related to moving back home with family.
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LGBTQ Asian American youth face unique challenges related to their marginalized identities. It is well documented that Asian Americans who need mental health treatment access care at lower rates than White populations.1 Although Asian cultural values are often cited as reasons for decreased help-seeking behavior, research suggests structural barriers including cost, lack of culturally tailored services, and lack of knowledge of available resources as greater contributors to these disparities.1 Asian Americans have also been subject to the "model minority" myth, the stereotype that the community is universally high achieving, rule following, and well adjusted. This false narrative contributes to negative mental health outcomes driven by racial discrimination and homogenizing the Asian American experience. This masks the diversity in mental health needs among Asian Americans. In addition, LGBTQ Asian Americans experience microaggressions, the perception of being "not queer enough," and racism from LGBTQ spaces that often primarily cater to a White population.2.