The objectives of the mapping project were to:
- Increase understanding of the organizational background of SSOs globally;
- Obtain a snapshot of SSO service delivery, awareness and advocacy activities globally, focused on the 2018 calendar year;
- Obtain data for further analysis of the scale and reach of SSOs and their activities;
- Obtain data for further analysis of SSO capacity to produce evidence of value.
Key messages from the global mapping are:
- There is considerable potential for SSOs to drive improved stroke outcomes globally. The global network is growing, particularly in low- and middle-income countries (LMICs).
- SSOs are mobilizing large numbers of people affected by and engaged with stroke. These organizations have significant numbers of volunteers and members supporting them and benefiting from activities.
- SSOs are engaging beyond their local and geographic boundaries. Membership of other organizations and alliances with shared agendas is common.
- Sustainability of human and financial resources is a major challenge and key barrier to increasing SSO impact. The majority of SSOs do not receive government funding and the lack of paid staff in many SSOs limits their potential for large-scale impact.
- Inadequate national strategies and policies for stroke prevention, treatment and recovery is a major challenge that SSOs face in their work to support people affected by stroke across the stroke care pathway.
- A lack of data on stroke incidence and prevalence, low awareness of stroke symptoms and emergency response, inadequate recognition of rehabilitation, and the limited number of support services are further challenges for SSOs in their work.
- The top three solutions identified by SSOs that would aid in overcoming the challenges they face are increased partnership between SSOs and government, clinicians and academics; improved skills in fundraising; and improved skills in advocacy and campaigning.