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Share Stroke Decisions

Funded by: Edinburgh and Lothian Health Foundation

Location: Royal Infirmary of Edinburgh via NHS video conferencing software

Recruitment criteria:

Stroke survivors will be eligible for co-production workshops provided they:

  • Are aged 16 years or over
  • Have experienced a severe stroke within the last 18 months and are either currently receiving stroke related care or treatment in community based services, or have previously received care or treatment from a participating stroke service
  • Are able to attend RIE co-production workshops on line
  • Are able and willing to provide written informed consent
  • Are English-speaking and have access to email
  • Are able to attend the dates of at least three of the five workshop sessions (i.e. four co-production workshops and one pre-meeting)
  • Are able to use online packages e.g. Microsoft Teams Caregivers will be eligible for co-production provided they:
    • Are aged 16 years or over
    • Are a family member/close friend of a stroke survivor who is either currently receiving stroke related care or treatment, or has previously received care or treatment from a participating stroke service; or bereaved in the past five years from stroke
    • Are able·and willing to provide written informed consent
    • Are English-speaking and have access to email
    • Are able to attend the dates of at least three of the five workshop sessions

Recruitment contact:

  • Name: Allan MacRaild, Lead Research Nurse, NHS Lothian, Cerebrovascular Research Group / EMERGE
  • Email: [email protected]
  • Phone: 01314659536

Recruitment End Date: 28/02/2022

Currently making decisions about treatments after severe stroke is very difficult and complex, partly because patients are often too ill to talk about their preferences, families are shocked and upset at the time of a stroke, and some treatments might improve the chances of surviving but leave the patient with severe disability. We want to develop a system to help patients and families make difficult decisions about care, through a process called ‘coproduction’ whereby people affected by stroke, older people and health care professionals meet together, share experiences and jointly design a new process.