Research Report Social participation through the eyes of people with aphasia

Background: Little is known about the way people with aphasia perceive their social participation and its influencing factors. Aims: To explore how people with aphasia perceive participation in society and to investigate influencing factors. Methods & Procedures: In this qualitative study thirteen persons with aphasia and twelve central caregivers kept a prestructured diary over two weeks, followed by a semi-structured interview. Diaries and interviews were transcribed verbatim and analysed by two researchers independently using codes, categories and central themes inductively. Plausibility of the analyses was discussed several times with a third independent senior-researcher. In a focus group interview, the results were discussed with the participants. Outcomes & Results: The number of social activities and the character of these activities are not as important as the perceived engagement in the social activities for the participants. People with aphasia feel isolated but want to feel engaged. They feel burdensome to others and wish to function in an ordinary way. Extracting information from conversations is difficult but they want to know what is going on. Often they are not able to work and they wish to contribute to the community in other ways. Although they often feel stigmatized, they wish to be respected. Often they do not reach that goal. Perceived factors influencing engagement in social participation can be divided into personal, social and environmental factors. The following personal factors are reported: motivation, physical and psychological condition and communication skills. The social factors are: the role of the central caregiver and the characteristics of the communication partner(s), namely willingness, skills and knowledge. The environmental factors refer to quietness and familiarity of the place in which the person with aphasia live. Conclusions: Social participation is a theoretical concept that people with aphasia do not use. Instead, people speak in terms of engagement, involvement, having a feeling of belonging. People with aphasia describe the degree of engagement in activities in social life domains (i.e. the quality of activities) as more important than the quantity of performing activities.