Is there a place for virtual support groups for Parkinson’s disease in Africa? Lessons from the Covid-19 pandemic

Fothergill-Misbah, Natasha, Price, J., Thomas, O., Okeno, J., Walker, R. and Ebenezer, L. (2021) Is there a place for virtual support groups for Parkinson’s disease in Africa? Lessons from the Covid-19 pandemic. Movement Disorders Clinical Practice, 36 (Supplement 1).

Abstract

Objective: using a case study from Kenya to understand the potential role of virtual support groups for Parkinson’s disease (PD) in Africa.

Background: the Covid-19 pandemic has accelerated the uptake of technology and virtual platforms for people with PD (PwP) and caregivers through online forums/virtual support groups [1]. Sub-Saharan Africa’s recent surge in mobile phone usage and internet coverage means that many Africans have not been excluded from this new way of communicating.

Method: since June 2020, 2 Kenyan PD support groups have hosted biweekly virtual meetings (replacing monthly in-person meetings) via video-conference technology (10-25 people per session). Educational topics covered included saliva/drooling, chewing/swallowing, bladder/bowel problems, sleep, diet/nutrition, stigma, tremor and dystonia, a session for caregivers, and live exercise sessions. Educational components are hosted by 2 UK-based PD advanced nurse practitioners, and exercise sessions by a Kenyan physiotherapist. Every meeting has time for questions and a ‘Top Tips’ infographic for each topic is circulated.

Results: the impressive uptake has demonstrated a need for continued support for PwP and families. Despite challenges with poor internet connectivity and the cost of data bundles, attendance continues to grow. For those unable to join live, video/audio recordings of the educational components are shared via WhatsApp groups. Educational materials in Kenya are lacking, as are nurse specialists, and these sessions appear to provide attendees with valuable knowledge, but also camaraderie and support during a difficult time, combatting social isolation. As one participant described, “It was lovely to see familiar faces and to be part of the community. It has lifted my mum’s spirits”.

Conclusion: notwithstanding challenges, increasing numbers of Africans have access to mobile devices and the internet. Knowledge sharing from high-income countries to low-/middle-income countries is now easier than ever and this opportunity should be seized; the online Kenyan nurse course taking place this year through MDS demonstrates another form of ongoing support and education. The success has shown a need for continued support through the Covid-19 pandemic and beyond, but also the potential for technology to reach PD communities across the continent; Parkinson’s Africa plans to replicate the virtual groups across the continent.

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Contributors

Author: Natasha Fothergill-Misbah

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