Objective: To establish a monthly Global Virtual Support Group for Africans impacted by Parkinson’s disease as part of the Transforming Parkinson’s Care in Africa (TraPCAf) community engagement and involvement (CEI) work.

Background: Support for people living with Parkinson’s disease (PwP) and caregivers is lacking across Africa. Support groups provide crucial support that is not available through the health system. Further, the use of technology in supporting PwP is emerging as a viable option in Africa. Given the broad geographical scope of the TraPCAf grant, the team established a Global Virtual Support Group via digital technologies (Zoom) to support PwP across Africa. The goal of the group is to enhance existing support groups, expand reach and empower group leaders from African countries to share knowledge of symptoms, while overcoming geographical and transport barriers to participation.

Method: The Global Virtual Support Group meetings built on pilot meetings in 2023. The TraPCAf team’s strategy in 2024 was to cover 8 topics on Parkinson’s across the year, each led by partners in different African countries. So far, participation has tripled since 2023, with attendance of over 50 people per meeting and an average 30-40% gain in knowledge after each session determined through a post-session survey.

Results: The first professionally organised Global Virtual Support Group strategy has been a success, with a focus on participation, teamwork, high-quality education, and spreading awareness across Africa. By taking ownership of monthly topics, partners not only display knowledge and leadership, but communicate with and inspire local and worldwide communities. This is a promising medium for reaching populations that we may not be able to meet face-to-face, as well as giving additional forums for awareness-raising, education, and support for African Parkinson’s disease communities.

Conclusion: Technology can facilitate engagement with communities who are unable to access face-to-face support, providing a platform for accessible and cost-effective support and care. Support groups and online involvement among African Parkinson’s communities tend to be popular modes of communication and support, offering a long-term answer to interacting with hard-to-reach communities. However, challenges with the digital divide and the team’s reach across the continent exist.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/transforming-parkinsons-care-in-africa-establishing-a-global-virtual-support-group-for-africans-impacted-by-parkinsons-disease/