Recovery topic findings

In September 2020, 24 young stroke survivors took part in a series of Roundtable workshops to discuss the topic of recovery and what it means to them.

Stroke Foundation Young Stroke Project partnered with genyus network to facilitate five Roundable workshops. Each Roundtable workshop was only attended by people with lived experience, including the facilitator Caleb Rixon, Saran Chamberlain (Young Stroke Project coordinator) and up to 5 young stroke survivors.

Three questions were posed and the following provides a snapshot of the discussions.

What has hindered your recovery journey

  • Isolation. Lack of connection with other stroke survivors
  • Confusion. Lots of bits of information from everyone but no cohesion
  • Family and friends were not educated on how to support
  • Disempowerment. Comparing everything to the old me
  • Health professionals not understanding unique needs of young stroke survivors
  • Neglect. The information I could find was aimed at older people
  • Reduction. System weighs on statistics and symptoms, not the whole story of who I am

What has helped your recovery journey?

  • Positive relations health professionals
  • Peer connections or relationships
  • Community participation

What would an ideal recovery look like?

  • Stroke journey in a digital format
  • Having access to content that outlines and demonstrates multiple recovery journeys
  • Having more of a direction once you’re out of the hospital rather than a list of outdated contacts
  • Resources for what is out there for young stroke
  • Connected services once out of hospital