Empowering Latinx and Indigenous Latin American Caregivers of Children with Asthma

Background: Asthma is the most common chronic condition among children in the United States, with estimates indicating that nearly 10% of the US child population suffers from asthma. Yet risk varies by socioeconomic status and environmental exposures. A unique example of this is childhood asthma among low-income Latinx children in communities bordering the Salton Sea in the Inland Southern California Desert region where over 20% of children have asthma. Caregivers of this child population are primarily Latinx and/or Indigenous Mexican, specifically members of the Purépecha community, an indigenous group from Michoacán, Mexico. They face multiple barriers to accessing care for their children due to cultural and linguistic barriers; most are immigrants from Mexico with limited English proficiency and limited understanding of how to navigate US healthcare systems and health plans.

Proposed Solution to the Problem: This project proposes to engage Latinx and Indigenous Mexican caregivers and healthcare stakeholders in capacity building activities to incorporate their experiences and perspectives into the design of research for children with asthma and co-existing symptoms (e.g., respiratory distress, nose bleeds, allergies). Project activities will empower Latinx and Indigenous Mexican caregivers of children with asthma so they can meaningfully engage with healthcare stakeholders and researchers in environmental health and childhood asthma research, as well as build the capacity of healthcare stakeholders, including community health workers (CHWs); doctors in training (medical students, residents); physicians; and environmental justice advocates to partner in patient centered outcomes research and comparative clinical effectiveness research (PCOR/CER).

Objectives: The main objectives of this project are:

1. Establish a shared governance structure involving a community advisory board (CAB) of caregivers and stakeholders to advise on project milestones and deliverables and identify members of an Education and Outreach Workgroup
2. Build the capacity of caregivers with limited English proficiency, CHWs, and healthcare stakeholders to partner in PCOR/CER via co-learning activities, including trainings, talks/platicas led by CHWs, and a virtual photovoice exhibit with photos and narratives from caregivers of children with asthma and co-occurring health conditions (e.g., nosebleeds, allergies) collected in the project team’s current childhood asthma project
3. Obtain patient- and caregiver-centered input via deliberative democracy forums to identify topics for research and convene a next-step working group to develop designs for PCOR/CER based on prioritized topics

Activities: The Leadership Team will establish a shared governance structure: a CAB that will guide the project’s engagement activities. The CAB will include representation from Latinx and Indigenous Mexican caretakers of children with asthma, CHWs, healthcare providers, and health plan representatives in the Inland Southern California region. The project team will also convene an Education and Outreach Workgroup that will meet regularly to organize and plan co-learning activities, including a research training series, talks/platica series on environmental health and healthcare benefits and services, and virtual photovoice exhibit and gallery representing the lived experiences of caregivers of children with asthma. Throughout engagement activities, attendees will be asked to share their thoughts on potential research topics.

Information gathered during engagement activities, including recommendations for future research, will be used to engage caregivers and healthcare stakeholders in a deliberative process to identify topics related to environment and health. Specifically, the project team will use deliberative methods, an approach that encourages patients and stakeholders to share their experiences and hear diverse perspectives, to collectively decide upon next steps for PCOR/CER focused on environment and child health. The project team has used this method in previous PCORI engagement awards and found it produces informed and well-reasoned input that can inform collective action. The project team will hold four virtual forums with Latinx and Indigenous Mexican caregivers, healthcare stakeholders, environmental justice advocates, and concerned community members. The information gathered will be compiled in a report and shared with a workgroup of caregivers, stakeholders, and researchers who will develop patient-centered and clinical questions and designs for future PCOR/CER.

Projected Outcomes and Outputs: This award will result in short-, medium-, and long-term outcomes.

• Short-term outcomes during the project period include: By the end of the award period, the project team will have conducted a three-part training series on PCOR/CER focused on environment and child health; a four-part talks/platica series on child health in environmental justice communities, asthma and co-occurring child health conditions, healthcare services use, and healthcare benefits for asthma; a virtual photovoice exhibit and gallery of caregivers’ experiences caring for children with asthma and respiratory distress; and a report summarizing information gathered throughout engagement activities and next steps for PCOR/CER.
• Medium-term outcomes (0-2 years post-project period) include: Engagement activities will build the capacity of caregivers and healthcare stakeholders to partner in future PCOR/CER. The report developed by the next-step research workgroup will be used to consider PCORI funding opportunities as well as other federal funding. The project team anticipates that within two years post-project period, they will have begun a CER trail that incorporates the research questions and study designs that emerge from this project.
• Long-term outcomes (3+ years post-project period) include: The project team anticipates that the proposed award will build the capacity of their team and collaborators to engage in PCOR/CER work on environment and child health. They expect to build the capacity and skills of their network of CHWs to partner with physicians, doctors in training, and other healthcare stakeholders (e.g., health plan representatives) on future PCOR/CER.

Patient and Stakeholder Engagement Plan: This project will engage limited English proficient caregivers of children with asthma and related environmentally induced health condition (e.g., nosebleeds, allergies), as well as three primary stakeholder groups: 1) CHWs, 2) clinicians and doctors in training, and 3) health plan representatives. In addition, the project team will engage environmental justice advocates and concerned community members (e.g., teachers, older adults), as well as academic researchers. Engagement activities will bring caregivers of pediatric patients and key stakeholder groups together in neutral spaces where ideas and perspectives can be shared and plans for future research to increase access to health care for low-income minority children with environmentally induced illnesses (e.g., asthma).

Project Collaborators: Engagement activities will be carried out in Inland Southern California by academic investigators at the University of California Riverside (UCR) School of Medicine and UCR Health in collaboration with Conchita Servicio de la Comunidad, a local organization focused on capacity building and engagement of Latinx and Indigenous Latin American communities in research, healthcare services, and public health outreach. The Project Leadership Team will build on their strong connections with healthcare systems, academic institutions, and community organizations to carry out the proposed work.