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Divergences of perspective between people with aphasia and their family caregivers

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Background: Studies of the relation between family caregivers and care-receivers have identified large divergences between their perspectives. It has been suggested that these divergences may adversely affect the care relationship. However, there has been little research examining the source of these divergences. Aims: The reported mixed-method study aimed to examine the relationship between people with aphasia and their family caregivers in order to identify the sources of observed divergences of perspective. Methods & Procedures: A total of 20 people with aphasia and their main family caregivers, living in the UK, completed an adapted version of the Interpersonal Perception Method questionnaire, which yielded both rating data and qualitative data. Participants rated themselves, each other, and how they thought the other would rate them, on issues regarding communication ability and identity. Outcomes & Results: As expected on the basis of existing research, divergences clustered around the provision of communication support and issues of confidence, independence, embarrassment, and overprotection. A qualitative analysis of the participants' talk during the rating task suggested that a source of these discrepancies is in the conflicting demands which characterise the care relationship, specifically, caregivers' desire to support independence on the one hand but feeling compelled to be protective on the other hand. In response to these demands, caregivers try to create the impression that the disability has less impact than it has, and that they are more in control than they feel they are. Conclusions: We conclude by suggesting that some divergences of perspective may not be adverse overall, but rather may be a result of caregivers' creative adaptations to seemingly irreconcilable demands.

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