Title: The Development of a Toolkit to Support the Use of a Programme of Self-directed Upper Limb Exercise after Stroke
Funder: Health Education England

Abstract: Background: There is evidence that to promote recovery in the arm after stroke, many hundreds of repetitions of exercises need to be completed. Delivering this intensity of exercise is challenging within resource limited health systems such as the UK NHS. Effective self-directed exercise may be a way of increasing in-patient rehabilitation intensity in in-patient settings.Research Question: An intervention called GRASP was found in efficacy trials in Canada to improve arm function after stroke: It is a prescribed set of exercises and advice for rehabilitation of the arm. It is available freely online, and has been widely adopted in the UK. Evidence shows in Canada it is rarely used in the way that was originally described in the closely controlled environment of the randomised controlled trial. There is some evidence that suggests this is also the case in the UK. Can we: (i) find out to what extent, and why, UK therapists use and adapt GRASP; and (ii) co-design a toolkit developed to facilitate the implementation of GRASP in the UK without losing its active ingredients? Aim: To support people with stroke to be able to increase the intensity of upper limb exercises they undertake to a therapeutic level. Objectives: 1. To use existing literature to develop a programme theory to explain how the GRASP intervention achieves its outcomes. 2. To understand to what extent, and why, therapists who use GRASP in the UK do not implement it with fidelity to the guidance provided. 3. To identify the barriers and facilitators for people with stroke in using GRASP. 4. To co-design a toolkit that supports delivery of GRASP, with increased fidelity to the components that the programme theory indicates make it effective. Methods Realist methodology provides an overall framework for the study. The first objective will be achieved by conducting a realist review. The second objective will be achieved by undertaking observations and interviews using a teacher-learner cycle approach to determine how self-directed exercise is prescribed on stroke rehabilitation units. The third objective will be completed through interviews with people with stroke and caregivers, familiar with using GRASP. The findings from objectives 2 and 3 will be used to refine the programme theory. In a series of workshops, drawing on the programme theory, key stakeholders will co-design an online toolkit to support the implementation of GRASP with fidelity to its active ingredients, and evidence based tailoring options for different contexts, e.g. for use with people with aphasia, people without family members to help. Finally, the usability and acceptability of the toolkit will be assessed through trialling it in the hospital setting with observations and follow up interviews.Anticipated Impact and Dissemination This research will produce a toolkit to support an existing intervention to promote arm recovery. It will be available online for therapists to use, and will help people who have had a stroke to increase the intensity of arm rehabilitation they receive. This will be disseminated via academic forums, patient facing media forums and conferences.

Lay abstract: Aims About three quarters of people who have a stroke have problems with their arm. It may be weak, un-coordinated and numb. There is good evidence that it takes hundreds of repetitions of exercises to help arm recovery. Some of this practice can be done with the therapists. However, to achieve the amount needed, lots of practice needs to be done independently. This research aims to help people with stroke practise enough exercises to get the best recovery from their arm. Background Unfortunately, sometimes things that work in research do not always work in the same way in everyday practice. An example of this is a programme of exercises called Graded Repetitive Arm Supplementary Programme (GRASP) which the patient does in their own time in hospital. Research has shown GRASP helps arm recovery. It is available as an online booklet that is downloadable. GRASP is commonly used in UK stroke units. However, we know from research done in Canada that when therapists give out GRASP, they do not give it out in the way it was in the original research. They often need to change parts of it to suit the situation they are using it in. There is some evidence this also happens in the UK. We need to work out to what extent UK therapists do this and why. We need to find out what the evidence says made GRASP work in a clinical trial, and importantly the views of the people who actually use GRASP. Then we can work out what is acceptable to adjust when giving out GRASP, to make it more practical for use without losing the parts of it that made it work. Methods Firstly I will look at what the evidence suggests were the important parts of GRASP that made it work in the original trial. Secondly I will observe how and why therapists that use GRASP in the UK choose who they give it to, and how they give it out, compared to the guidance given online. This will be followed up by interviews with the therapists to explore the choices made. Thirdly I will look at what helps people who use GRASP to complete the programme, and the things that make it more difficult, by interviewing people who use it. All this evidence will then be combined to design a toolkit to allow therapists that prescribe GRASP to be able to tailor it to be easy to use in the area where they work, suit the individual with stroke they are working with, and still be effective. Therapists and people with stroke will design the GRASP toolkit together - what it looks like, what it includes, and how to deliver it - so that the toolkit will meet the needs of the people who will be using it. It will be freely available online. This type of study, where the focus is on ensuring good evidence is usable in clinical practice, is an important area of research science. PPI This proposal was developed with the Leeds 'Different Strokes' stroke support group. A PPI group will be set up to support the research, recruiting members from 'Different Strokes'. They will advise throughout the project, on design (e.g. how best to approach patients to participate) and data collection (e.g. reviewing information sheets and consent forms). They will also contribute to data analysis, to provide a patient perspective, and I will involve them in dissemination activities. Dissemination Presentation to the UK Stroke Forum and the UK Stroke Assembly-the largest gathering of stroke survivors and carers. Via social media/stroke forums. Academic publication.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: STROKE