ENGAGING ADULTS LIVING WITH COMMUNICATION CHALLENGES IN RESEARCH: EXAMPLES AND PRACTICAL TIPS

Abstract

Abstract This symposium contends that the engagement of older adults living with a variety of communication challenges in research about interventions designed to support them results in better translation and adoption of research findings. While engaging older adults in research often takes time, effort, and systematic tools, the benefits have been recognized by multiple stakeholders including policy makers, funding agencies, practitioners, older adults, and their families. Adults living with communication challenges may have difficulty expressing or comprehending language; however, that does not preclude their engagement in research activities, especially when this research involves interventions that concern them. This symposium will illustrate three exemplars of engaging adults living with communication challenges in research activities across international initiatives. First, qualitative data from 25 interviews from a project designed to engage persons living with stroke-based aphasia in friendship programming with be discussed. Then, mixed methods data from a community-based approach to support adults living with stroke-based aphasia, mild cognitive impairment, and traumatic brain injury will be described including the process of developing and using a multi-stakeholder advisory board. Finally, involving adults living with Frontotemporal Lobar Degeneration (FTLD) in research with a focus on building trust, staying connected between meetings, being transparent about expectations and applying a narrative approach will be described. Our discussion led by Dr. Roger O’Sullivan will focus specifically on the ethical implications of engaging adults living with communication challenges in research.