RESUMO
PURPOSE: People with aphasia (PWA) often experience higher levels of anxiety and social isolation than people without aphasia. Although the presence of anxiety is appreciated in PWA, literature examining the etiology and persistent nature of anxiety in PWA is underdeveloped. Safety-seeking behaviors, or maladaptive acts used by individuals to decrease anxiety from a feared outcome, have been reported as key facilitators of long-term anxiety toward feared situations across a variety of clinical populations. The purpose of this viewpoint is to explore the concept of safety-seeking behaviors and discuss their potential relevance to the maintenance of anxiety in PWA. We further discuss the distinction between maladaptive (i.e., safety seeking) and adaptive (i.e., coping) behaviors and how this knowledge may improve the quality of clinical services for PWA. CONCLUSIONS: The present review advocates for further exploration of the safety-seeking behaviors that are used by PWA. Until critical attention is given to this subject, clinicians may remain ill-equipped to identify and depict whether a self-management strategy is facilitative or inhibitive to PWA's communicative participation goals. Critically, a behavior that may be "maladaptive" for one individual may be "adaptive" for another. Future research should seek to identify common behavioral and cognitive strategies that PWA implement to reduce acute perceptions of anxiety. This knowledge may help facilitate holistic aphasia rehabilitation by allowing clinicians to foster conversations around behaviors that inhibit or promote successful communicative participation.
RESUMO
BACKGROUND: Participation in life situations has been identified by people with aphasia (PWA) as an ultimate outcome of rehabilitation and is often measured with patient-reported outcome measures (PROMs) or informant-reported measures. It is known that PWA and informants do not always produce similar scores on measures of activities and participation. However, systematic differences between PWA and informants and the causes of these differences are not well understood. Here, we investigated these differences as a function of language impairment, perceived level of activity and participation success, and depressive symptoms. METHOD: Participants were 29 PWA-informant dyads who completed a performance-based language assessment and three measures related to different aspects of activities and participation. Outcome variables were PWA-informant difference scores in the activities and participation measures. RESULTS: PWA ratings of activities and participation were not statistically significantly associated with performance-based language severity. Hierarchical regression models with both language impairment and informant-reported scores as predictor variables explained 53%-71% of the variance in PWA-informant difference scores (all p < .05). In particular, mild communication challenges were associated with the PWA reporting significantly worse participation than the informant perceived. In contrast, more severe communication challenges were associated with the PWA reporting significantly better participation than the informant perceived. DISCUSSION: These findings highlight the importance of measuring participation by PROM. The PWA's experience of participation is not related to their level of language impairment and is predictably different from their care partners' perspective. As others have also reported, "mild" aphasia is not so mild to the PWA. Similarly, "severe" may not be so severe to the PWA. Further research is needed to connect these findings with counseling and caregiver education. Research on response processes (e.g., response shift) is also warranted.
