Stroke Transitions of Care and Post-Stroke Care Conference

Why lived experience has to be in the room

What made this conference feel different was the emphasis on lived experience. When stroke survivors and caregivers share their stories directly, the conversation shifts.

Instead of speaking in generalities, we talk about:

• what it feels like to be discharged with more questions than answers
• how hard it is to coordinate appointments, therapies, and medications while also trying to rest
• the fear of another stroke in the background of everyday life
• the reality that a caregiver is often expected to become a care coordinator overnight

Those perspectives opened the door to more honest conversations and fresh ideas that better reflect what life after stroke looks like day to day. It also reinforced a core belief we hold at TSF: innovation only works when it’s built around the realities of the people it’s meant to serve.

The biggest takeaway: transitions of care are pivotal moments

If there was one theme that echoed throughout the conference, it was this: transitions of care shape recovery.

Moving from:

• hospital to rehab
• rehab to home
• home into long term outpatient care and daily life

These are not small administrative steps. They are pivotal moments where survivors and caregivers are asked to adapt quickly, often without enough guidance, resources, or support.

Each phase comes with its own challenges. Needs change. The type of support that’s useful in the hospital is not the same as what a family needs two weeks after discharge, or six months later when therapy coverage runs out and progress feels slower. The insights shared at the conference reinforced the urgency of addressing these gaps in more systematic ways, so fewer families fall through the cracks during the moments that matter most.

What this means for The Stroke Foundation

As we grow, The Stroke Foundation is committed to developing support resources that make the transition from hospital to life after stroke more accessible, inclusive, and impactful.

We left the conference with clearer direction and renewed energy around what survivors and caregivers need most:

• practical guidance during major transition points
• support that is consistent, not one time
• resources that reflect real world barriers like insurance limitations, transportation, caregiving strain, and financial stress
• programs designed with survivors and caregivers, not just for them

We also left encouraged by the shared recognition that this is not a “nice to have” area of stroke care. It’s foundational.

Looking ahead: partnerships that move the needle

We’re grateful for the chance to engage with healthcare leaders, researchers, and partners who are thinking deeply about post stroke care. Conferences like this create space for collaboration, and we believe that strong partnerships are essential if we want real change.

We look forward to building relationships that help ensure:

• every survivor has the best chance at independence
• every caregiver feels supported, equipped, and seen

Stay connected

If you’re a survivor, caregiver, clinician, researcher, or organization working on transitions of care and life after stroke, we’d love to connect. The more we learn from one another, the more effective and human centered this work becomes.