Engaging Adults Living with Communication Challenges in Research: Examples and Practical Tips

Wednesday, November 2, 2022

2:30 PM – 4:00 PM ET

Location: 203 CC

CE: 1.5

Chair(s)

Natalie Douglas, PhD, CCC-SLP

Associate Professor
Communication Sciences and Disorders
Central Michigan University
Mount Pleasant, Michigan, United States

Slides

Discussant(s)

Roger O'Sullivan, PhD, FGSA, MFPH

Director of Ageing
Ageing
Institute of Public Health in Ireland
Belfast/Dublin, Ireland

Individual Symposium Abstract First Author(s)

Ladan Ghazi Saidi, PhD

Associate Professor
Communication Disorders
Universoty of Nebraska at Kearney
Kearney, Nebraska, United States
Martina Roes, RN, PhD, FGSA, FAAN

Professor for nursing Science and Health care research
Person-Centered-Dementia-Care
German Center for Neurodegenerative Diseases (DZNE)
Witten, Nordrhein-Westfalen, Germany
Natalie Douglas, PhD, CCC-SLP

Associate Professor
Communication Sciences and Disorders
Central Michigan University
Mount Pleasant, Michigan, United States

Slides

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.

Learning Objectives:

After attending this session, participants will discuss the importance of engaging people living with aphasia, dementia, traumatic brain injury and related communication disorders in research activities.
After attending this session, participants will be able to summarize feasible strategies to engage people living with aphasia, dementia, traumatic brain injury and related communication disorders in research activities.

Presentations:

2:30 PM – 4:00 PM ET

Generic and Tailored Interventions for Community Older Adults with Chronic Cognitive Communication Disorders
Individual Symposium Abstract First Author: Ladan Ghazi Saidi, PhD – Universoty of Nebraska at Kearney
2:30 PM – 4:00 PM ET

Involving People with a Frontotemporal Dementia Diagnosis in Dementia Research
Individual Symposium Abstract First Author: Martina Roes, RN, PhD, FGSA, FAAN – German Center for Neurodegenerative Diseases (DZNE)
2:30 PM – 4:00 PM ET

Friendship in Aphasia
Individual Symposium Abstract First Author: Natalie F. Douglas, PhD, CCC-SLP – Central Michigan University