Over the past 18 months the Stroke Support Organization (SSO) Committee of WSO has been leading a mapping project of all SSOs known to us globally.
The Stroke Support Organization (SSO) Committee leads the WSO priority to support the development of SSOs globally. In the May 2019 WSO Strategy Review, the SSO Committee proposed a mapping project of all SSOs known to us globally.
The objectives of the mapping project are 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.
The global membership of the WSO includes individuals and societies. Society members of WSO are comprised of regional scientific societies and SSOs. WSO defines SSOs as non-governmental organizations (NGOs) focused on advocacy and long-term stroke support. SSOs range in size, focus and membership and may be run solely by people affected by stroke, health care professionals or by a mix of people with a professional or personal interest in stroke.
Globally SSOs are aiming to drive better outcomes in stroke prevention, treatment and long-term care. WSO recognizes that SSOs are important stakeholders in global health agendas and targets, including the WHO Global Action Plan for the Prevention and Control of NCDs.
We carried out a desk based review and circulated a questionnaire to members and non-members of WSO. Questionnaires were sent to 115 SSOs with an 86% response rate.
The mapping report includes data on the profile and activities of 92 organizations from 58 countries, including all geographical regions of WSO membership. This offers valuable insights into the work of these organizations globally. It is envisaged that this report will be updated at regular intervals and through ongoing promotion and dissemination, will enable further identification of SSOs that are not currently known to WSO but are working to improve stroke outcomes across the world.
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.
We look forward to sharing the full report at the end of February.
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