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Table 1 RUG activity log

From: Value and learning from carer involvement in a cluster randomised controlled trial and process evaluation - Organising Support for Carers of Stroke Survivors (OSCARSS)

RUG activityValue to OSCARSS
Adaptation of the chosen intervention (CSNAT) (within copyright boundaries)Focussed on stroke rather than palliative care (CSNAT-Stroke) and developed a paper action plan
Development of staff training package to implement interventionImproved likelihood of intervention fidelity and increased staff ‘buy-in’ to the approach
Early protocol discussion raised the possibility of carers not identifying as ‘carers’ which may affect recruitmentConsideration of the use of the term ‘carer’ and highlighting awareness of this in recruitment
Participant recruitment: RUG gave advice on possible experiences of carers and suggested ways to approach recruitment to encourage engagement. RUG suggested the first contact with the carer participants should be in person or over the phone to increase recruitment• The protocol was changed so that potential participants were given courtesy calls in advance of postal packs being sent out.
• Recruitment protocol amended so that potential participants were given more time to decide and could be approached later, this was anecdotally reported to have increased recruitment rates
Selection of the primary outcome from a choice of measuresA primary outcome selected that was deemed relevant and important to carers, with language that was accessible and low perceived burden for completion
Developing the participant information sheetAccessible and jargon-free for carer participants
- used as an example for other research
Promotion of the role of the RUG in this study at conferencesOpportunities for the RUG to develop their own skills and knowledge around dissemination
Interpretation and dissemination of the study process and findings.• Actively involved in interpreting qualitative themes in the process evaluation and interpretation of study findings
• Wrote an accessible and jargon-free report on findings for carer participants
• Presented work at conferences internationally and nationally
Publishing the experience of PCPI involvement in the OSCARSS studyThe RUG wanted to tell others about the importance of getting involved in research and the two co-authors have been actively involved in this paper