Facilitating the participation of people with aphasia in research: a description of strategies

Abstract

Background: People with aphasia are often excluded from research because of their communication impairments, especially when an investigation into the communication impairment is not the primary goal. In our research concerning social participation of people with aphasia, we wanted to include people with mild, moderate as well as severe aphasia. Aim: To suggest strategies and techniques for research in people with aphasia based upon experiences in conducting research in this group of people. Methods: We conducted a qualitative study and a quantitative study in people with aphasia concerning their social participation. In these studies different strategies were developed based upon the literature, conversations with people with aphasia and speech and language therapists, to facilitate the inclusion of people with aphasia, even those with severe communication problems. Several strategies were evaluated. The strategies used and our experiences are outlined in this report. Main contribution: It is possible to conduct research in this group. Several strategies were helpful to make this mission possible: the use of pre-structured diaries, the use of in-depth interviews with attention to non-verbal communication, the use of existing measurements, adjusted for people with aphasia by: using pictograms, placing one question per page, bolding the key concepts in the question, using large font, visualizing the answering possibilities in words and in pictures, reducing the question length, and excluding negatives in the question. Conclusion: Research in people with aphasia is possible when using strategies adjusted to the communicative impairment.