To date, and too often, it is standard practice that researchers develop research questions, determine methodologies, conduct studies, and present findings. This conflicts with the well-known adage ‘nothing about us, without us’. Individuals who use Augmentative and Alternative Communication (AAC) have often been excluded from participating in research (Taylor & Balandin, 2020). Their influence on research has been minimal, typically limited to the role of participants with little direct impact on the project’s direction. Additionally, proxies often provided written consent on behalf of individuals who use AAC, before participating. Over the last 5-10 years, the ‘how’ of doing research together with those who rely on AAC on a day to day basis has slowly come into focus for an increasing number of AAC researchers. Smits et al. (2020) developed the Involvement Matrix, a conversation tool to discuss and explain roles of involvement in a research project. The Involvement Matrix describes five roles: Listener, Co-thinker, Advisor, Partner, and Decision-maker. In different phases of a project (i.e., Preparation, Execution, and Implementation) a person involved can take a different (preferred) role.
Walsh, et al. (2024) collaborated with experienced researchers, parents and people who use AAC in developing a toolkit for including people who use AAC as co-researchers in the research process. Helpful tips and adaptations to qualitative methods are described. But what happens when AAC users get to be involved from the get go? Which research questions will be formulated and more importantly: how does one get there? For other research fields a James Lind Alliance (www.jla.nihr.ac.uk) has given valuable insights forming priority setting partnerships.
The present project is focused on understanding and gaining insight in how people who use AAC can (and want to) take their preferred research role. We strive to understand what is required to achieve genuine partnerships in AAC research, fostering equal collaboration. Based on the toolkit and reports from researchers like Sergeant (2021), we commenced a collaboration between four people who use an Eye Gaze device as one of their modes of communication – all experienced users of AAC and their device, and two researchers who mostly use natural speech for their personal communication yet are trained AAC professionals. How can experienced AAC-users and researchers in the field of AAC work together from the start? This presentation will provide insights in the learning process, both from the side of the persons who use AAC and from the side of the researchers. Furthermore, we will describe the steps that we took together, including which research topics evolved in discussions, and, will discuss insights from this project.
