Objective: To outline the role of community engagement and involvement (CEI) in global health research to support people with Parkinson’s and their caregivers across Africa.

Background: A crucial component of the NIHR Global Health Research Group ‘Transforming Parkinson’s Care in Africa’ is the role of CEI activities. The goal of the CEI component of the grant is to improve the equality, efficacy and impact of responses and services through ensuring that people with Parkinson’s (PwP) are active stakeholders in the deliberations, design, decision-making, implementation and dissemination of the project. The group includes PwP from across Africa, caregivers of PwPs, healthcare workers, local news media outlets, policy makers and local NGOs.

Method: The CEI component of work is jointly led by the UK host institution and the charity Parkinson’s Africa. The work has 3 overarching goals: (1) to inform the research, data collection and analysis; (2) to support advocacy and awareness raising efforts; and (3) to establish support groups in all sites. CEI work will take place across all 7 countries involved in the grant, which have very different resources, healthcare systems, health and social protection schemes, and policies.

Results: CEI work will involve continent-wide and in-country meetings to discuss data collection tools, analyses and dissemination of findings throughout the grant. Awareness raising efforts have already begun, including the production of a film on stigma in Kenya, and will continue to involve innovative methods to increase the profile of PD in all sites. Finally, a needs assessment of each site is underway to understand local capacity, challenges, and solutions with regards to the establishment or expansion of support groups. This will be followed by action to ensure that groups are fully established wherever the work takes place, particularly in prevalence sites.

Conclusion: CEI will play a crucial role in the success of this research and in building the support available to PwP and their families in Africa. Support groups have been shown to benefit individuals in countries where access to resources is limited [1], and have the potential to play a significant role in the multidisciplinary care of PD across the continent. It is crucial that research is driven by those with lived experience of the condition and that the impact of the work lasts beyond the grant duration.

References: [1] Fothergill-Misbah et al. (2021) ‘The role of support groups in the management of Parkinson’s disease in Kenya: sociality, information and legitimacy’, Global Public Health, 17(8).

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MDS Abstracts - https://www.mdsabstracts.org/abstract/transforming-parkinsons-care-in-africa-community-engagement-and-involvement-activities/