People with aphasia: capacity to consent, research participation and intervention inequalities

Abstract

Of 14 randomized controlled trials included in the recent Cochrane review of the evidence relating to information provision after stroke, only one included people with aphasia with the remainder either excluding this patient sub-group (10/14 trials) or failing to report any exclusion criteria. A third of people that experience a stroke will also experience aphasia, affecting their speaking, understanding, reading, and writing. The pervasive supposition that people with aphasia lack the capacity to make decisions for themselves is flawed and has the potential to lead to inequalities in care. We highlight the degree to which people with aphasia have been excluded from full participation in some areas of stroke research and the potential clinical consequences of their systematic exclusion. We emphasize the clinical and ethical need for the provision of more accessible research information and consent processes, illustrate the feasibility of adopting such an approach, and consider the broader benefits to stroke research of inclusive and accessible research approaches.