Background: Re-establishing participation in social life is an important aim of rehabilitation, but instruments to measure participation in people with aphasia are rare.
Aims: To identify and describe measures of social participation that may be specifically useful when measuring participation in people with aphasia.
Methods and procedures: A systematic review of the literature concerning participation instruments was conducted. Then six speech and language therapists evaluated the suitability of selected participation measures for use in people with aphasia and a systematic literature review concerning the feasibility, internal consistency, validity, reliability and responsiveness of the measures selected by the therapists was carried out.
Results: In total 12 instruments measuring aspects of participation were found: seven measured actual performance and five measured actual performance combined with experienced problems. Two were considered unsuitable for people with aphasia, leaving 10. Six speech and language therapists working with people with aphasia scored the 10 selected instruments, and two instruments were judged as possibly suitable for use in people with aphasia: the Community Integration Questionnaire (CIQ) and the Nottingham Extended Activities of Daily Living (NEADL). However, the Community Integration Questionnaire is much closer to the concept of participation. The literature review concerning the psychometric properties of the Community Integration Questionnaire revealed that very little is known about the use of this instrument in people with aphasia.
Conclusion: The Community Integration Questionnaire is possibly suitable for use in people with aphasia when measuring participation, but data on its psychometric properties in people with aphasia are absent.