While Stroke Onward’s mission is clear and our launch successful, additional initiatives to deepen impact will continue to evolve. We intend to carefully assess how and where we position strategic efforts on a critical path that begins with raising public and professional awareness, and ends with survivor self advocacy to improve access to needed emotional resources at the right time in each individual’s recovery.
Many talented professionals and excellent organizations are engaged with stroke recovery and we are committed to amplify and complement – not duplicate- existing efforts and resources. There are also many lessons to be learned from organizations in other medical fields that have created models that are driving change in resource efficient ways. We intend to work closely with our growing networks as one means to further prioritize, develop, and test our initial ideas. These include:
- Influencing Influencers: Who has the best opportunity to advise survivors and their supporters on the importance of identity and emotional recovery after stroke? When is the right time for survivors to absorb and use that advice? In acute treatment post stroke, focus is squarely on recovering capabilities. Post discharge many survivors disconnect from the medical system, especially those with limited resources. Where and when might we create the greatest impact by delivering the right material to influencers?
- Improving access to resources: Survivors, families and professional caregivers tell us that it’s hard to find good resources to support the post stroke emotional journey. Even those that exist are often “hidden” amidst material dominated by physical recovery; some of the best resources we’ve seen are on websites unrelated to stroke — like grieving a loss or coping with cancer. How helpful might it be to offer online access to a range of support resources from a variety of sources carefully curated from the stroke survivor’s perspective?
- Supporting support groups: Many survivors and caregivers have told us about the power of peer support groups. We are developing a support group discussion guide for Identity Theft; would further resource development have meaningful impact?
- Creating virtual support groups: Not all survivors and supporters can access a local support group. There are excellent online groups for stroke survivors generally. Is there value for one focused strictly on rebuilding identity and the emotional journey after stroke?
- Developing curriculum: Might the greatest impact come from highlighting the importance of identity and the emotional journey in the training programs for professionals who will work with survivors and their families? How might we influence curriculum? For medical school and residency programs? Training for physical, occupational, speech and other therapists? Possibly for continuing education programs?
In the months ahead we will refine our strategy and begin to broaden our activity. If you have thoughts about the greatest need, people we should speak with or any other ideas about how we can best support the survivor community, please reach out and let us know.