Background: The goal of augmentative and alternative communication (AAC) is to facilitate participation in life. This includes participation in important life decisions, such as end-of-life decisions which may be relevant even when death is not imminent. Clinical practice guidelines may assist speech-language pathologists (SLPs) in supporting persons in need of AAC to participate actively and autonomously in such decisions. According to the model of evidence-based practice (EBP), clinical practice guidelines should be based not only empirical evidence and clinical expertise, but also the priorities and preferences of the clients who should benefit from the implementation of the guidelines. With appropriate AAC support, persons in need of AAC may be able to participate in research studies that influence practice guidelines.
Aim: The focus of this presentation is to describe how AAC techniques facilitated the application of Q-Methodology in gathering the perspectives of persons with aphasia in a research study that aimed to develop clinical practice guidelines for SLPs who support persons with aphasia to make end-of-life decisions.
Methodology: Q-Methodology provides qualitative and quantitative tools for the scientific study of subjectivity. In this study, the subjective views of eight persons with aphasia and their communication partners regarding the importance of end-of-life decisions, and the helpfulness of communication strategies to support persons with aphasia to make such decisions, were gathered by means of Q-Methodology. The end-of-life decisions and the communication strategies that were ranked by the participants were gathered by reviewing the literature and through focus group discussions with experts in aphasia. The participants were presented with a Q-set of 16 end-of-life decisions to rank in terms of priority. They were also presented with 7 Q-sets of a range of communication strategies to support the different components of the decision-making process to rank in terms of helpfulness. AAC strategies (e.g., multimodal input, pictorial support and gestures) were used to support and verify the understanding and expression of the persons with aphasia.
Results and discussion: Supplementing Q-methodology with appropriate AAC techniques enabled persons with aphasia to successfully share their views and perspectives regarding the types of end-of-life decisions they would prioritise; as well as the communication strategies that they find most helpful in supporting the different components of the decision-making process. It was noteworthy that the views of person with aphasia differed from the views of their communication partners, underlining the importance of obtaining the views of person with aphasia directly rather than by proxy. The views of persons with aphasia identified in this study were synthesized with research evidence on AAC strategies to support complex decision-making by persons with aphasia and clinician expertise regarding the content of the clinical practice guidelines. Based on this synthesis, the guidelines were developed, thereby ensuring that all three sources of information as per the EBP model were considered.
Conclusion: With the help of AAC, persons with aphasia were successfully able to participate in the Q-Methodological procedure in expressing their subjective views and opinions. This method may therefore be considered in future studies to ensure that the views of persons in need of AAC are incorporated in practice guidelines and interventions.
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