Background: In 2013-2014, our Cochrane systematic review relating to physical rehabilitation after stroke was produced with involvement of stroke survivors, carers and health professionals (“stakeholders”) who made key decisions about the review scope, structure and presentation of results. In 2022-2023, we conducted a major update of this review, again involving key stakeholders to ensure continued relevance and impact of this review. Objective: To describe and reflect on the stakeholder involvement in this Cochrane review of physical rehabilitation after stroke. We will:
• Describe involvement using the ACTIVE framework (who, how, when, level of involvement) and any impact/changes;
• Reflect on what did/did not work well.
Methods: We recruited a group of stakeholders, comprising people with lived experience of receiving or providing physical rehabilitation after stroke in the UK, aiming for a group with a range of different experiences. We held a series of pre-planned meetings, each with a specific goal in relation to informing the review. We held two international webinars to gain international perspectives. Stakeholders provided reflections and feedback.
Results: The stakeholder group comprised three stroke survivors, four carers and seven physiotherapists. To date, we have held four online meetings, supplemented with additional sub-group meetings, recorded presentations and email communication. Two further meetings are planned. A total of 124 people (including patients, carers, professionals and reviewers), from three continents, attended the international webinars. A complex new framework to describe physical rehabilitation following stroke was co-produced. This framework informed the grouping of studies within the review analyses. The group highlighted the need for additional comparisons and subgroup analyses to make the results meaningful and relevant. Wording of key results and implications for practice was co-produced. Barriers and facilitators to successful involvement were identified. For example, online meetings created challenges to equitable participation; use of recorded presentations were an efficient and successful way of keeping stakeholders up-to-date and informed.
Conclusions: Stakeholder involvement influenced the review, ensuring analyses focused on questions that were meaningful and relevant and that results were clearly communicated to end users of research. This example contributes to a growing body of evidence about methods of involving stakeholders in Cochrane reviews.