Barriers, enablers, practices and outputs of involvement: stroke survivors with aphasia as collaborators in a clinical trial

Introduction:
Patient and Public Involvement (PPI), an essential part of the process by which research is identified, prioritised, designed, conducted and disseminated in the UK (INVOLVE, 2012), aims to capitalise on the unique experiences and expertise that patients and lay members bring. A number of barriers and enablers to PPI have been identified at all stages of the research process (Elberse et al, 2010; Staniszewska et al, 2007). We argue that attention to the specific practices of PPI are crucial to understanding what it means to involve and be involved; drawing on our study of stroke rehabilitation and supported communication (SCIP-R) we examine the experience of collaboration and outline key outputs.

Method:
We take a qualitative approach to data collection and analysis: observational records (field notes), developmental and evaluative discussions and summarising documents, and artefacts from meetings, assessment and training events are included in a thematic analysis. Findings from the perspective of the collaborators – researchers and people with aphasia (PWA) – are reported.

Results:
Practices which address physical and communicative barriers to involvement of PWA range from the configuration of spaces to the provision of pens and paper. The production of knowledge and resources for training was enabled by small group discussions among collaborators. PWA experiences from these activities fed explicitly into materials and procedures for staff training (vignettes; video clips; feedback protocols) and implementation of the intervention (pocket guides; learning logs).

Conclusion:
Each activity associated with identifying, designing and delivering research requires specific attention in order to optimise involvement and collaboration.