Challenges in maximising recruitment to a randomised controlled trial through working with a service user group

2006 Conference

This paper concerns a study in which service users with aphasia and/or dysarthria worked alongside researchers, within a participatory action research framework, to design recruitment materials for use in a large RCT (the ACTNoW trial).

Eight service users (with aphasia and/or dysarthria) and two carers were recruited to participate in monthly meetings facilitated by a qualified speech and language therapist and an experienced qualitative researcher. The aims of involvement were to design information and consent materials that would meet ethical requirements, be adaptable and flexible to meet the full range of likely communication impairments and challenges faced by potential recruits, and maximise recruitment to the RCT.

In addition the group assisted in developing qualitative interviewing materials that are accessible and facilitate interviewees with communication impairments, in recruiting and training research staff, and in giving public presentations about the project.

The paper will help understanding of how challenges were met to ensure maximal understanding and participation from group members who themselves displayed a range of communication impairments and to adapt traditional focus group techniques to meet the range of communication needs in the group. In addition the many benefits of involvement and the future role of this user group will be presented for discussion.