Introduction: Involving stroke patients and carers in planning and designing a stroke research trial has several advantages in informing trial methodology, assessment tools, and consent procedures (Ali K 2006). Planning a trial exploring the use of a creative intervention such as Art Therapy (AT) in stroke warrants meaningful patient involvement.
Methods: The research team (4 stroke specialists, 2 stroke survivors, a stroke research nurse, two arts therapists, and a speech and language therapist) designed a study exploring AT in stroke rehabilitation. The study proposal was discussed in a semi-structured focus group meeting (meeting 1) with 4 stroke patients recently discharged from hospital explaining the AT intervention, proposed assessment tools, and follow up measures.
Following completion of the pilot study (6 patients were involved over 6 weeks) (Waller D et al 2013) feedback was obtained from all patients through face to face meetings (4 patients), and telephone interview (2 patients).
Results: Initial study planning meetings with the two stroke survivors shaped the AT intervention as a group interactive session rather than a 1–1 session, and added a qualitative narrative of the study.
Meeting 1 helped select the assessment tools which were finally used (Hospital anxiety and depression scale and Therapy outcome measure) in the study.
Communications following completion of pilot study with the stroke survivors informed another 2-centre study proposal, and a current grant application.
Conclusions: Engaging stroke survivors in planning research trials is feasible, beneficial in selecting appropriate methodology and preparing grant applications.
Funding was provided by the Ageing Research Centre in Sussex.