Exploring patient and public involvement in stroke research: a qualitative study

PURPOSE: To explore the experiences of patients and carers involved in patient and public involvement (PPI) activities for stroke research.

METHODS: Semi-structured interviews conducted with stroke survivors and carers (n = 11) were analysed using thematic analysis.

RESULTS: Four key themes emerged: impact of PPI on the individual and the research process, credibility and expertise, level of involvement and barriers and facilitators to PPI for stroke survivors and carers. The perceived benefits to the research process included: asking questions, keeping researchers grounded and directing the research agenda. All participants drew upon their experiential expertise in their PPI role, but some also drew upon their professional expertise to provide additional credibility. Stroke survivors and carers can be involved in PPI at different levels of involvement simultaneously and the majority of participants wanted to be more involved. Barriers to involvement included: location, transport and stroke survivors capacity to concentrate and comprehend complex information. Facilitators included: reimbursement for travel and time and professionals effort to facilitate involvement.

CONCLUSIONS: PPI in stroke research benefits stroke survivors and carers and is perceived to benefit the research process. The barriers and facilitators should be considered by professionals intending to engage stroke survivors and carers collaboratively in research.

IMPLICATIONS FOR REHABILITATION: This study has implications for PPI in stroke rehabilitation research, which could also be extrapolated to stroke rehabilitation service development and evaluation. Professionals facilitating PPI need to invest in developing supportive relationships in order to maintain ongoing involvement. Professionals need to be aware of how the varied consequences of stroke might impede participation and strategies to facilitate involvement for all who wish to be involved. For each rehabilitation issue being considered professionals need to decide: (1) how representative of the specific rehabilitation population the PPI members need to be, (2) whether experience alone is sufficient or whether additional professional skills are required and (3) whether training is likely to assist involvement or potentially reduce the lay representation.