Discovery session findings

Last year in the “Recovery” Roundtable workshops it was found that:

  • People’s recovery was hindered by a lack of accessible, engaging information
  • How and when information is delivered is just as important as the type of information

To further explore these findings, we want to ask:

  • How can we better connect support crew with young stroke resources, services and peer support?
  • How can we ensure support crew can easily access what they need at all stages in their journey?

In August/September 2021 a series of Discovery Sessions were conducted with young stroke survivors and support crew to help us to better understand these findings.

Summary of Discovery Sessions

  • We conducted 5 sessions with 17 Young Stroke Survivors and 3 sessions with 8 Support Crew
  • Each session was online and ran for 1.5 hours
  • Each session was co-facilitated by Beverly Ridley and a member of LEWG (Toni Arfaras, Sue Bowden or Nichola Browning)

The findings are outlined below and are grouped as Acute, Peer to Peer and Resources.

  • Lack of information. Includes general information, age-appropriate information, information for support crew and information provided at the hospital and on discharge.
  • Support crew are initially focused on needs of young stroke survivor, not themselves.
  • Researching and advocacy. Many participants were already researching online. This depends on the stage they are in of their stroke journey.
  • Service providers and health professionals were a hit or miss. There was also a lack of access at hospital.

  • Participants felt
    • Isolated
    • Disempowered
    • Lost
    • Confused
    • People did not understand, especially if you look fine
  • Peer to peer connection is so important. Connecting with people with lived experience, as early as possible. To not feel alone. To speak to someone who “gets it”.
  • Often it was difficult finding connections.
  • Hearing other lived experience stories was helpful. Seeing that someone else has gone through something similar.

  • Presentation of information should be consistent and up-to-date and delivered in a timely manner.
  • Use of age-appropriate language.
  • Must be aphasia friendly.
  • Online, interactive information was preferred. Central hub or landing page. Or phone app.
  • Online and interactive resources. Audio or video formats.
  • Present information via social media platforms
  • Good to have emails and subscriptions
  • Search by location
  • Online version of My Stroke Journey
  • Enableme