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
- 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