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Source publication
Researcher-initiated research often has little or no input from the groups who will be affected by the results of the research. The aim of this project was to describe practices of embracing patient-partners (i.e., individuals with aphasia and spouses/family members) in research. Six webinars were developed for both researchers and patient-partners...
Context in source publication
Citations
... Sitren and Vallila-Rohter (2019) determined that the success rate of tablet use in persons with aphasia is heterogeneous but is an appropriate goal for intervention use as their results showed PWA gaining independence in tablet use following a short course of technological intervention. Targeting technology use is, furthermore, supported by the growing push to create connections through support groups online, to not only eliminate geographic barriers but also create connections that may have otherwise not been possible (Brice & Hinckley, 2022 AQ23 ; National Aphasia Association, 2022; Pitt et al., 2019 ...
Purpose
Behavioral intervention targeting speech, language, and communication concerns is an established therapeutic approach for patients with communication concerns across a range of acquired neurogenic disorders. The multidimensional factors that contribute to a person's self-identified communication challenges and strengths in their daily communication needs must be considered to provide functional and person-centered care. While assessments grounded in clinician observation or client self-report exist, there is a direct need for a screening tool that comprehensively evaluates the roles of modality (verbal, text, gesture) and environment (in-person, virtual) on self-reported success across communicative demands. In this study, we describe a preliminary approach to monitoring the progression of receptive and expressive communication skills in people with chronic poststroke aphasia in the context of communication practices of the 21st century, culminating in the development and exploratory implementation of a novel clinical instrument: the Communication Success Screener (COMSS).
Method
Thirty-three participants with aphasia due to stroke were recruited to complete and evaluate the COMSS via an online survey. Quantitative responses and open-ended participant feedback were collected to validate and propose adaptations to the COMSS. Group-level analyses and case presentations were used to highlight COMSS features and outcomes.
Results
Participant responses to the COMSS questionnaire suggest that this screening tool creates differentiated communicative success profiles based on self-report. Participant feedback also indicated that the COMSS appropriately evaluates self-reported success across modalities of verbal, text, and gesture in the context of in-person and virtual environments.
Conclusions
The communication concerns experienced by people with aphasia are often heterogeneous and vary as a function of their daily activities of living, preferred language modalities, and environmental supports. We present preliminary feasibility analyses of the COMSS as a potential tool to support the monitoring of functional change by evaluating self-reported communicative success across form, modality, environment, and task demand.
Supplemental Material
https://doi.org/10.23641/asha.24521044
Purpose
Ableism is a pervasive set of beliefs that regard nondisabled bodies and minds as ideal and necessary to live a full life. Ableism manifests for people with aphasia as stigma and discrimination based on their language ability. We assert that ableism contributes to decreased quality of life for people with aphasia and should be actively challenged and disrupted by clinicians and researchers in the field.
Method
We applied the Health Stigma and Discrimination Framework (HSDF) to outline how stigma and discrimination are perpetuated against people with aphasia on the basis of language ability and their downstream health and social consequences. We presented this framework at the Clinical Aphasiology Conference in 2023 and share themes and challenges that arose from this discussion and from our ongoing learning.
Discussion
Applying the HSDF to aphasia outlined potential sequelae of ableism. We identified preliminary foci of future initiatives aimed at challenging ableist beliefs and practices and means to monitor the effectiveness of such interventions. Furthermore, we draw attention to the seeming tension between anti-ableist practices and traditional language rehabilitation goals. We assert that this tension may be a catalyst for fruitful discourse on how clinicians and researchers can resist ableism while honoring the lived experiences of people with aphasia and their goals for language rehabilitation. These discussions may be facilitated by existing models in disability studies (e.g., the political/relational model).
Conclusions
Clinicians and researchers are well positioned to challenge ableism and minimize the resultant health and social impacts for people living with aphasia. Anti-ableist practices are not antithetical to aphasia rehabilitation and can be thoughtfully integrated into rehabilitation practices and discourse.
