A qualitative study of barriers and facilitators to high-tech augmentative and alternative communication tools to enhance communication in patients with tumor-related aphasia.
This is one of the first studies to explore user design and AAC considerations in patients with TRA and highlights the importance of minimizing cognitive burden, supporting care-partner involvement, and designing adaptive AAC tools for the progressive nature of aphasia in neuro-oncology.
Abstract
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Background:
Patients with tumor-related aphasia (TRA) lack tailored communication tools as their language deteriorates. The purpose of this study was to understand barriers and facilitators to the use of augmentative and alternative communication (AAC) tools in this patient population.
Methods:
We interviewed 36 participants: 11 patients, 12 care-partners, 9 speech and language pathologists, and 5 neuro-oncology clinicians (MD/NP). Interview guides were developed from expert input and a scoping review. Domains consisted of experiences with low- and high-tech AAC devices, barriers and facilitators to uptake and sustained use of devices, user design considerations in TRA, and integration of AAC devices into daily life. Patient and care-partner participants were recruited through outpatient clinics and clinician referrals, while purposeful snowball sampling was used for clinicians. Three investigators independently coded all transcripts and iteratively discussed emerging themes using a phenomenological approach.
Results:
The mean age of P/CPs was 61.7 years and 65.2% were female. Among clinicians, the mean age was 41.2 years, mean practice length was 13.2 years, and 76.9% were female. Five themes emerged: 1) AAC tools must minimize cognitive burden, a major barrier in this population, while being adaptive and intuitive to use; 2) Care-partner involvement is critical for AAC uptake, adoption and sustained use; 3) Technology may never fully emulate some social aspects of speech, and this is important to convey to minimize attrition; 4) Low technology literacy may be an important barrier to adoption of high-tech AAC devices; and 5) A critical challenge for deploying large language models into existing devices is maintaining performance across heterogeneous real-world interactions.
Conclusions:
TRA represents a complex clinical challenge where treatment options remain limited. This is one of the first studies to explore user design and AAC considerations in patients with TRA. Findings highlight the importance of minimizing cognitive burden, supporting care-partner involvement, and designing adaptive AAC tools for the progressive nature of aphasia in neuro-oncology. These insights may inform the development and clinical integration of patient-centered AAC technologies tailored to this population.
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