Developing a research agenda in partnership with parents of deaf/hard-of-hearing children

Background: Community-based participatory research (CBPR) is an excellent fit for understanding and addressing the unique and diverse needs of deaf or hard-of-hearing (DHH) children and their families. Objectives: We describe lessons learned from a capacity building project initiating an academic-community partnership between a multidisciplinary research team and a small group of parents of DHH children. Trainings and focus group style discussions created a research agenda reflective of families’ priorities. Methods: Processes are described related to the development and composition of a Family Advisory Council, training topics and methods, the process for generating and prioritizing topics, and evaluation procedures. Lessons learned: Takeaways relate to the importance of flexibility, relationship building, CBPR mentoring, and navigating institutional barriers. Conclusions: CPBR is an appropriate and effective framework for engaging families with DHH children in the research process.