Article

This qualitative study 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.

Langue : ANGLAIS