Involving stroke patients and carers in the planning and conduct of a research study exploring the use of art therapy in stroke rehabilitation

Abstract

Background

Demonstrating meaningful Patient and public involvement (PPI) in research is a core requirement by research funders and ethics committees. However PPI amongst older people is relatively neglected. This paper describes the involvement of older people in planning and conducting a research study exploring Art Therapy (AT) in stroke rehabilitation.

Methods

The research team discussed the proposed study in a semi-structured focus group meeting with four stroke survivors (and 2 carers) recently discharged from hospital, and separately with another two stroke survivors.  Following input from PPI in the planning stage; the actual AT study was conducted involving six male stroke patients over six weeks. Weekly on-going input from the study participants themselves informed conduct of subsequent AT sessions. After completing the AT study, another meeting was held with the study participants to inform a future larger study.

Results

The stroke survivors and carers confirmed the relevance and need of a creative research intervention such as AT in stroke rehabilitation. PPI informed the methodology as group interactive AT rather than one-to-one sessions, recommended including a qualitative narrative of the study, and informed practical aspects of the study such as timing, location, facilitation, assessment and evaluation. Post study feedback with the research participants helped identify positive and negative aspects of the conducted study, and shaped a current grant application.

Conclusions

We have demonstrated the value of engaging older people in planning research.  It is feasible, enhances the quality of the research and ensures that the study design meets the participant needs.