Enhanced Community-Based Asthma Monitoring Through Novel Technology
Pilot Project Leader: Abigail Strang, MD, Nemours
The primary objective of this project is to pilot test implementation of a protocol for enhanced asthma monitoring using novel technology, including mobile spirometry and remote study visits, for rural and medically underserved children with persistent asthma in Delaware and to determine its feasibility, acceptability, and accessibility. Additionally, the project aims to explore patient and family demographic characteristics and social factors associated with successful completion of the program and to explore the preliminary effect of the enhanced asthma monitoring program on asthma control and sleepiness as a measure of daytime functioning.
The results from this pilot study will be used to develop expanded intervention trials to assess the efficacy
of similar enhanced asthma monitoring interventional programs on asthma-specific outcomes.
Improving Pediatric Type 1 Diabetes Behavioral Care and Research
Pilot Project Leader: Julia Price, PhD, Nemours
The aim of this multimethod community engaged research is to develop pediatric Type 1 Diabetes (T1D) stakeholder partnerships that are essential to studies to improve behavioral T1D intervention research and care. The project will develop strategies to increase engagement of families in pediatric T1D behavioral intervention research and explore perspectives on existing pediatric behavioral T1D interventions from youth with T1D and their families who are underrepresented in research in this area.
​
Results from this project will advance inclusion of families in future pediatric T1D behavioral intervention studies, significantly improving the utility and relevance of this research in caring for families.
Developing a Caregiver-Based Inoculation Intervention to Prevent the Initiation of Unhealthy Alcohol Use in Adolescent Girls
Pilot Project Leader: Scott Siegel, PhD, Christiana Care
The overarching objective of this research is to develop a culturally-informed intervention designed to reduce the risk of engaging in unhealthy alcohol use for adolescent girls. This prevention intervention will be developed within an inoculation theory framework, a well-established approach to health communications that has been shown to outperform other types of messages for a range of health topics, including alcohol use.
​
The first aim of this study is to conduct focus groups of girls ages 13-17 in the qualitative assessment of candidate inoculation messages developed to reduce the risk of initiating unhealthy alcohol use. The second aim of this study is to conduct semi-structured interviews with a subset of the girls’ caregivers (i.e., parents/guardians) to assess their perspectives on acceptability of helping to deliver an inoculation-based intervention to their daughters.
Development of an Interactive Website to Support Decision Making at Periviable Gestations (<25 weeks)
Pilot Project Leader: Ursula Guillen, MD., Christiana Care
Decision aids (DA) are tools used to inform patients about potential outcomes and risks and benefits. This research team systematically developed 3 different DAs for antenatal counseling at 22-25 weeks’ gestational age (GA).
The proposed project will create an interactive website to improve the usefulness of three already-existing decision aids. This application will adapt and tailor the presentation of information based on goals and values identified by individual parents. In addition, we will also create new stand-alone vignettes to incorporate into the new website by updating the currently existing video aid. We will refine the new tool through focus groups and one-on-one interviews. Finally, we will assess the validity and helpfulness of the new tool in the target patient population.
Community Perspectives on Pediatric Health System Social Determinants of Health Screening & Community Resource Referrals
Pilot Project Leader: Abby Nerlinger, MD, MPH, Nemours
The long-term goal of this project is to incorporate CBO perspectives into healthcare system SDOH screening, referral, and closed-loop communication practices. The overall objective for this proposal is to conduct community-engaged quantitative surveys of CBOs, leading to a cross-sectional study of CBO characteristics and community resources in Delaware.
​
The following specific aims will help attain the overall objective: 1) Assemble a Community Advisory Panel to guide community-engaged project design, including identification of CBOs that partner with healthcare systems in Delaware and development of surveys; 2) Using quantitative surveys of CBOs, conduct a cross-sectional study describing available community resources and CBO attitudes related to health system referrals; and 3) Characterize the relationship between population level social need and available community resources. Aim 3 will integrate survey data and population level data including the Child Opportunity Index and Delaware 211 information to quantify the relationship between social need and resources through both statistical methods and geocoding.
Preferences in Autism Educational Resources Among Clinicians and Families
Pilot Project Leader: Monica Gordillo, PhD, Nemours
This qualitative, community-engaged study aims to identify gaps and opportunities to improve the content, format, and delivery of autism educational resources by examining perspectives from two key groups: (1) autism service providers such as psychologists, nurse practitioners, and family navigators, and (2) caregivers of children with recent autism diagnoses.
Aim 1 will characterize providers’ perceptions of family informational needs and gather their evaluations of
existing materials across specialty and non-specialty care settings. Aim 2 will explore families’ preferences regarding autism informational materials, including indicators of perceived trustworthiness, desired pathways for access, and recommendations for improving already existing autism educational materials.
Implementing the Standards Together: Engaging Adolescents in Psychosocial Care (iSTEAP)
Pilot Project Leader: (Mikey) Emily Michael Pariseau, PhD, Nemours
The Standards for Psychosocial Care for Children with Cancer and Their Families (the “Standards”) outline
evidence-based Standards that are crucial to addressing the psychosocial needs of families of children and adolescents with cancer. The proposed study will use a community based participatory research approach and qualitative methods to characterize adolescent and young adults (AYAs) perspectives related to the Standards. Semi-structured, individual, qualitative interviews will be completed with AYAs at one timepoint to: (Aim 1) Designate AYA-identified priority Standards, (Aim 2) Characterize AYAs’ experiences related to receiving care consistent with the prioritized Standards, and (Aim 3) Identify barriers and facilitators to implementing the prioritized Standards with AYAs.
​
Current State of School-Based Blood Pressure Monitoring for Pediatric Hypertension Detection
Pilot Project Leader: Abbas Zaidi, MD, Nemours
The aim of this project is to examine how school-based blood pressure monitoring is being utilized in real-world pediatric clinical practice, identify gaps in care and workflow challenges, and generate foundational data to inform the development of stakeholder-informed implementation strategies. Delaware schools, seamlessly connected to large healthcare systems (e.g., with electronic health records) offer an ideal setting for this study. Its diverse population and strong partnerships with community stakeholders and school nurses enhance the development of tailored strategies for pediatric hypertension detection.