Background: Research with children who are deaf/hard-of-hearing (CDHH) using the traditional top-down approach has generated important knowledge related to early hearing detection and intervention (EHDI) (e.g., screening, diagnostic and early intervention), and areas central to CDHH (e.g., linguistic, cognitive, psychosocial development). However, without parent input on the research process, the traditional approach potentially overlooks critical questions, effective data collection methods for families across education and income levels, and dissemination of findings to stakeholders. Patient-centered outcomes research (PCOR)/comparative clinical effectiveness research (CER) is warranted given the complex and often intersectional issues specific to families of CDHH in addition to existing family challenges.
Proposed Solution to the Problem: The proposed solution is to build the capacity of parents of CDHH to engage in PCOR/CER by applying established methods for engaging stakeholders and identifying PCOR/CER topics. The Buckeye Center for Hearing and Development (BCHD) project team will recruit parents/caregivers from diverse backgrounds to establish the BCHD Family Research Council (FRC). The FRC will engage in trainings designed to provide them with foundational knowledge about the PCOR/CER process, Ohio’s EHDI program, and research conducted at BCHD. The FRC will engage in a series of engagement sessions designed to generate, refine, and prioritize topics about CDHH. The FRC will provide input on an infographic of the final PCOR/CER agenda. The project team will develop a final report to share with BCHD researchers and other researchers and stakeholders, nationally.
Objectives: (1) Form the BCHD FRC, (2) Provide training that will build EHDI stakeholders’ capacity to meaningfully engage in the research process, (3) Generate and prioritize PCOR/CER topics, and (4), Develop PCOR/CER questions and draft potential studies
Year one: FRC members will participate in workshops on research fundamentals and the Ohio EHDI system and learn about research at BCHD.
Year two: Quarterly virtual meetings will be facilitated by the project lead. The FRC will generate and prioritize PCOR/CER topics relevant to them as parents of children who are DHH. The project team will organize topics, lead a ranking process, and draft a PCOR/CER agenda for stakeholder approval.
Projected Outcomes and Outputs:
Short-term outcomes during the project period: The FRC will be provided with the foundational knowledge necessary to fully engage in all aspects of research.
Medium-term outcomes (0-2 years post-project period): The FRC will generate and prioritize PCOR/CER topics and develop a PCOR/CER agenda. Two FRC members will be invited to co-present at the national EHDI conference. The FRC will be offered the opportunity to engage in small independent PCOR/CER studies at BCHD.
Long-term outcomes (3+ years post-project period): BCHD researchers will be invited to propose studies that align with stakeholder priorities.
Patient and Stakeholder Engagement Plan: A group of 10-12 parents/caregivers of children who are DHH, and 1-2 experienced EI providers who will serve as advisors, will be invited to join the FRC. The FRC will meet for trainings and a series of discussions that will produce a PCOR/CER agenda. The project team will offer online EHDI 101 and Research at BCHD trainings for families, and informally gather additional potential PCOR/CER topics.
Project Collaborators: Nationwide Children’s Hospital, Cincinnati Children’s Hospital Medical Center, and the National Center for Hearing Assessment and Management