Accessible and inclusive post-stroke spasticity education in Dominican Republic

08 Jul 2024 Stroke support

The Fundación Dominicana de Accidente Cerebral (Fundace) is the registered stroke support organization in the Dominican Republic. One of its key activities is to facilitate self-help groups for stroke survivors, their families and caregivers.

One topic on the agenda for a recent meeting was ‘Spasticity after a stroke’. Fundace’s founder, Feliz Vinicio Lora facilitated the group and here shares an update on the activity.

The overall goal for the session was to educate patients and families about what spasticity is after a stroke. The specific objectives were to raise awareness and knowledge about the causes of spasticity, the symptoms of spasticity and treatments for spasticity. The two hour session was attended by 27 people between the ages of 15 and 70.

Fundace ensures our self-help groups are as inclusive as possible. They take place in air-conditioned rooms that are physically accessible for survivors of stroke. Information is shared in a slide show and a microphone is used by the facilitator and available for groups members.

The opening of the meeting incudes a prayer, relaxation and an update on Fundace's activities and plans.

The session took an interactive approach starting by encouraging members to share their thoughts and understanding about What is spasticity? What do you understand by spasticity?

Many group members had a vague idea about the subject, but the vast majority did not know how to respond, even those who are living with spasticity.

The presentation began by defining what spasticity is, which is caused by damage to the part of the brain that controls messages to our muscles. This can make muscles contract and feel tight. The presentation also covered possible treatments for spasticity. The difficulties in the daily life of the sufferer and how it affects the family.

After listening to the information about spasticity, we opened the session for questions and answers, and for the sharing of personal and family experiences. We divided the attendees into two groups to socialize about the topic. One group for survivors and the other for relatives. After 20 minutes, we got together and the group members shared that their understanding about spasticity had increased.

Stroke support organizations like Fundace offer important opportunities to share full and accurate information about the effects of stroke, including spasticity, in accessible and inclusive meetings, during which members can ask questions and share their experiences.

WSO, in partnership with Ipsen, is currently sharing a survey on knowledge of post-stroke spasticity and access to treatment. If you or a family member is living with post-stroke spasticity please complete the survey here

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