Background
Fatigue is a common and debilitating symptom which affects over 50% of stroke survivors. However, existing evidence on managing e post-stroke fatigue is limited, and many previous studies have not involved the real experts, those with lived experience.
Aims
As part of a feasibility study, we aimed to provide training to those with lived experience of post-stroke fatigue to enable them to provide peer support to participants in a feasibility trial. others. We refer to peer supporters as ‘buddy facilitators’ (at the suggestion of the PPI members).
Methods
Online training was developed in conjunction with the study team, talking to colleagues about similar endeavours and with input from PPI members. A series of meetings were held, and feedback collected on comments and suggestions for content.
Results
Six people commented on the training as well as the wider study team. Our final programme, to be delivered online, with two facilitators, covered the following areas:
An introduction to peer support, stressing the need for active listening, supporting not advising, coaching not telling.
The benefits of being a buddy,
Responsibilities of being a buddy, such as the time commitment, being mindful of safety as well support for them.
Managing safeguarding and boundaries as well as confidentiality.
Handling difficult conversations and what to do if someone becomes distressed.
Understanding biases and prejudices.
Conclusion
The programme is being evaluated within our current intervention in a feasibility study. This will finish recruiting July 2024.