To explore how people with aphasia perceive participation in society and investigate influencing factors.
In this qualitative study 13 persons with aphasia and 12 central caregivers kept a pre-structured diary, followed by a semi-structured interview. Diaries and interviews were transcribed verbatim and analysed by two researchers independently. Plausibility of the analyses was discussed with a third independent senior-researcher. In a focus group interview the results were discussed with the participants (member-check).
The main theme was `being there`: People with aphasia feel isolated but want to feel engaged, feel burdensome and wish to function in an ordinary way. Extracting information 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 stigmatised, they wish to be respected. `Being there` was influenced by several factors; personal factors (motivation, physical and psychological condition and communication skills), social factors (the role of the central caregiver and characteristics of the communication partner(s), namely willingness, skills and knowledge) and environmental factors (quietness and familiarity of the place in which the person with aphasia live).
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 defined as ` being there`. People with aphasia describe the degree of engagement in social activities as more important than the quantity of performing activities.