Objective: To establish a support group for people with Parkinson’s disease (PwP) and caregivers in Tanzania as part of the Transforming Parkinson’s Care in Africa (TraPCAf) community engagement and involvement (CEI) work.

Background: Support groups play a crucial role in providing education and support in low- and middle-income countries where health services are constrained [1]. An essential component of TraPCAf is establishing Parkinson’s support groups in all 7 participating countries. One participating site in Tanzania is Kilimanjaro Christian Medical Centre, a referral hospital serving the Hai district. The motivation for establishing the support group was to create a welcoming and informative forum where PwP and caregivers could convene, acquire knowledge, and exchange information and support about Parkinson’s, in addition to their neurological care.

Method: One goal of the support group was involvement of PwPs, caregivers and community health workers in project design and decision-making. To foster community involvement, gauge interest in a support group and increase awareness, a community engagement event was delivered in Machame Hospital, Hai district. PwP, caregivers, healthcare practitioners, and local health workers attended. Attendees expressed a sense of eagerness, enthusiasm, and optimism. Furthermore, a stakeholder workshop was held with decision makers and practitioners in health and social care to build engagement.

Results: The first support group in Tanzania was established in March 2024, signalling the beginning of a new and exciting initiative for much-needed care for PwP and caregivers in the Hai region, with the potential for expansion to other parts of Tanzania. Two local physiotherapists have been appointed as group leaders, responsible for managing and facilitating its activities, ensuring its long-term viability. PwP were provided culturally relevant Parkinson’s information and education in their native language (Kiswahili) and took part in physiotherapist led exercises and small-group work activities on Parkinson’s symptoms.

Conclusion: Support groups are essential in offering care to the community and to improve physical and mental health and quality of life in low-resource countries [1], and they have the potential to play a vital role in the multidisciplinary care of Parkinson’s disease across the continent.

References: [1] Fothergill-Misbah, N., Moffatt, S., Mwithiga, H., Hampshire, K., Walker, R. (2021) ‘The role of support groups in the management of Parkinson’s disease in Kenya: Sociality, information and legitimacy’, Global Public Health, 17(8), pp1773-1783.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/transforming-parkinsons-care-in-africa-establishing-the-first-ever-support-group-for-people-with-parkinsons-disease-and-their-caregivers-in-tanzania/