The SISLE Stroke Survivors’ Group
The research team started to collect quantitative data in April 2019 through our stroke register-based at Connaught Hospital, the main referral hospital for Sierra Leone’s capital Freetown. This register gave us a picture of what some elements of stroke in this country looked like.
We felt it was really important to try and engage with the stroke survivors so that we could understand stroke from their perspective. We aim to co-produce elements of our work as we move forward and provide a platform for peer-support to the survivors as they adapt to their post-stroke life. With help from Chris McKevitt, who had facilitated the King’s College London Stroke Research Patients and Family Group, we were able to transfer the model of a stroke survivors’ group to Sierra Leone.
We first held stroke survivors and carers’ meeting in July 2019, where we described our research activities to the group and talked about the next steps for community engagement. This was the first time most had met another survivor, which led to an in-depth discussion on their experiences of stroke. Towards the end of the meeting, it was decided that a SISLE stroke survivors’ group would be a useful platform for monthly engagement between service users, their carers and the research team. It would provide a forum for peer-support with potential to continue beyond the lifetime of the project.
Over the months that followed, survivors and carers were increasingly interested in raising the awareness and understanding of stroke and post-stroke disability in the Sierra Leone general public. They decided to take part in the World Stroke Organisation’s World Stroke Day on 29th of October 2019 and join other stroke support groups in Virtual Relay raising global awareness.
The Sierra Leonean survivors, members of the SISLE team and the general public met on the city beach in Freetown and walked together to raise awareness of the condition. The event was a success with members of the public getting a chance to meet survivors, and in some cases have some of their preconceptions about stroke challenged.
During the Virtual Relay, Moses, one of the survivors and a church pastor, opened up about his personal mission to improve the knowledge of stroke among people in his congregation. He invited us to his church to help him start a conversation about stroke and looking after one’s health. So one December Sunday morning we joined him in the upper Room Pentecostal Ministries church.
Pastor Moses is in his late forties. He suffered a moderate stroke in June, and he is now well enough to take lead in the main part of his Sunday service. There were approximately 60 adults and 20 children. The service started with singing and dancing and listening to the announcements delivered by the assistant pastors.
When it was time for the sermon, Pastor Moses took to the stage and talked about how important it was to take care of our bodies. He emphasised that if we were to have a healthy and generous spirit we needed to eat healthily, and exercise regularly.
We were invited to the stage to explain about the stroke research in Sierra Leone. People in the congregation were very interested. We were asked many questions.
“What causes stroke?”
“Is trembling a sign of stroke”
“What sort of exercise should we do? “
With the success of the stroke survivors’ group, we are planning to expand our engagement with communities in Freetown. We plan to create two additional groups that will be based in different areas of the city so that people do not have to travel far.
We are hoping to keep running information sessions on stroke with survivors and carers. We want to empower the stroke survivors to reach out into their communities continuing the legacy of SISLE programme.
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This research was funded by the National Institute for Health Research (NIHR) (project reference) using UK aid from the UK Government to support global health research. The views expressed in this publication are those of the author(s) and not necessarily those of the NIHR or the UK Department of Health and Social Care.