“Well, You Are the One Who Decides”

Abstract

Clinical borderlands manifest themselves through encounters between people deemed to be in need of health care and health care providers (Mattingly, 2010). This article addresses the problem of inherent asymmetry in the clinical discourse between clinical providers, such as speech–language pathologists (SLPs), and persons with aphasia. Speech–language pathologists, communicating as experts, tend to dominate the discourse regarding the course of treatment, particularly with clients with aphasia who may lack the necessary communicative skills to participate in decision making. Such patterns of communication were apparent in a study reported here that involved thematic analysis of the views of 12 SLPs regarding involving people with aphasia in shared decision making and in analysis of 33 video recordings of these 12 SLPs and 28 people with aphasia during clinical interactions. Although the SLPs stated that they wanted to involve their clients in decision making and took steps to do so, the discourse sample analysis revealed that the SLPs controlled the interaction through their initiations, topic selection, and presentation of limited choices. Alternatives for supporting greater decision-making participation among people with aphasia with their clinicians are discussed.

Communication strategies to support decision‐making by persons with aphasia: A scoping review

“…The quantitative study compares the performance of PWA on linguistic and non‐linguistic decision‐making tasks (Kim et al., 2020). The two mixed methods design studies examine the decision‐making process between PWA and their SLPs regarding therapy goals (Isaksen, 2018) and the effectiveness of a tool in establishing capacity to give informed consent (Jayes & Palmer, 2014), respectively.…”

“…Of the nine articles in which a description of how PWA were supported in decision‐making is given, three provide a description of how PWA were supported in participating in discharge planning (Brady Wagner, 2018; Kagan et al., 2020; Maxwell et al., 2021) and two (Jayes & Palmer, 2014; Penn et al., 2009) provide a description of how PWA were supported in providing informed consent to participate in research. The support provided to a PWA in the making of a will (Ferguson et al., 2010), in decisions regarding termination of speech–language therapy (Isaksen, 2018), in decisions pertaining to the running of a business (Kagan et al., 2020), and in informed consent for medical treatment (Stein & Brady Wagner, 2006) is described in each of the remaining four articles, repectively.…”

Are People with Aphasia (PWA) Involved in the Creation of Quality of Life and Aphasia Impact-Related Questionnaires? A Scoping Review

“…(2) Equalizing the power position-shift of power: The consistent involvement of PWA in research groups will promote a balance in power relations, between experts and PWA. With the re-establishment of the patient's position, from passive receiver of pre-established scientific input/data to the position of the "expert" directly living with condition, researchers create an atmosphere of acceptance [67]. This approach will reveal different layers of understanding of aphasia as a symptom and the aphasic as the person carrying the symptom.…”

“…This approach will reveal different layers of understanding of aphasia as a symptom and the aphasic as the person carrying the symptom. Regular involvement of PWA promotes patient centeredness and a focus on specific concerns [67]. Involvement of PWA in qualitative participatory health research will promote a more moral/ethical way to empower PWA in an otherwise expert-dominated endeavor [11].…”

“…Dissemination of the research results between the stroke community, all involved agencies (stroke support organizations, aphasia associations, patients' advocates, politicians), and the healthcare rehabilitation specialists' ecosystem will be easily manifested [69]. The exploration of a research topic of mutual interest to both expert scientists and PWA will strengthen the impact of the research [65,67] in both the scientific society and the community and avoid research waste by funding agencies [68]. (4) Best practice in aphasia research and rehabilitation: The consistent involvement of PWA will enhance quality, relevance, and acceptability to all involved stakeholders [18,64].…”