The SISLE Stroke Survivors Group
We 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 began to give 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 adapted to their post stroke life. With help from Chris Mckevitt, who had facilitated the Kings 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 a stroke survivors’ and carers’ meeting in July 2019, where we describe 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 survivor’s group would be a useful platform for monthly engagement between study participants 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. With this in mind the survivors decided to take part in the World Stroke Organisation’s World Stroke Day Virtual Relay and join other stroke support groups in raising global awareness. The survivors, members of the SISLE team and the general public, a group of 30 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 towards stroke survivors challenged.
This event also gave us some time to talk further with the group. One of the survivors, Moses, a church pastor wanted to use his sermons to improve the knowledge of stroke in his congregation. We were invited to visit his church and help him begin informing his church about stroke.
We met Pastor Moses, at a mosque situated on Bai Bureh Road, a busy highway in the East of Freetown. We made our way up an unpaved road, at the top of the hill we found the Upper Room Pentecostal Ministries church
Pastor Moses is in his late forties., he suffered a stroke in June, he is now well enough able to take lead in the main part of his Sunday service. His congregation consisted of about 60 adults, and 20 children. The service started with singing and dancing, and 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 is to take care of our bodies. He emphasised that if we are to have healthy and generous spirit we need 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, and the subsequent opportunities, we are planning to expand our engagement work, by creating 2 new survivors’ groups, that will be based in different areas of the city, so that people don’t have to travel far.
We are hoping we can also continue to provide information sessions on stroke and empower the stroke survivors to reach out into their communities. We also hope that with our support these stroke survivor groups will become sustainable and a key part of future dialogue regarding stroke in Sierra Leone.