Findings from support crew of young stroke survivors

In February 2021, 14 people with lived experiences of being part of a young stroke survivor’s support crew (carer, family and friends) took part in a series of workshops to discuss the topic of Recovery.

Stroke Foundation Young Stroke Project partnered with genyus network to facilitate three Roundtable workshops. Each Roundtable workshop was only attended by people with support crew of young stroke survivors, including the facilitator Ian Rixon, parent of a young stroke survivor.

The findings are summarised below and will help inform and support the delivery of content by the project

What hindered your journey?

  • Telling the story repeatedly to people who were concerned was difficult as it meant reliving it each time.
  • Not being able to connect with other supporters
  • Frustrations with limitations on being able to help
  • No specific information for young stroke survivors or supporters
  • No guidance in the early days
  • Not enough support from health professionals
  • Rehab was directed to older people or focused on dishcarge

What helped your journey?

  • Hearing everybody’s stories make you feel connected and not alone
  • My own friends have been helpful for my own support and mental health
  • Meeting other support crew of young survivors
  • Support networks for young survivors were super helpful
  • Knowledge = POWER!

What might the ideal “Support Crew” journey involve?

  • Safe space to share openly e.g. specifically for male supporters etc
  • Mental Health plan provided straight away
  • Mental Health support for “Support Crew”
  • Peer connection support
  • One voice of stroke (constant same approach)
  • Being able to meet other people who have gone through it
  • Being linked to peer groups to navigate the journey together
  • More information for me to process at the beginning