Objective: Conduct focus groups to better understand the lived experience of Parkinson’s Disease (PD) patients and caregivers in Zambia.

Background: PD is a global neurological disease with burden expected to rise 20-40% in the next 20 years. Symptoms and impacts of PD have been well-characterized in the West, but little research has evaluated the lived experience of PD patients in Africa. Current African PD literature is largely focused on critical needs of capacity building and genetics.

Method: Potential participants were identified from Neurology Clinics at Zambia’s University Teaching Hospital and invited by the clinic nurse or existing PD WhatsApp group. Participation limited to English speakers. Written informed consent was/will be obtained prior to discussion. Three focus groups (caregivers and one each for men and women living with PD) were/will be conducted. A local, trained facilitator led/will lead discussions of personal experience and impacts for persons with PD and caregivers. Audio recordings were/will be transcribed. Drs. Purks and Chishimba will independently qualitatively analyze themes, then compare for consensus to identify core trends.

Results: Of 12 caregivers who accepted an invitation, 9 attended (8 female; aged 19-50s) the over 2-hour focus group held on March 11^th, 2025. Caregivers shared broad PD symptoms: tremor, stiffness, immobility, loss of independence, hypophonia, hypomimia, mood, cognitive, sexual and sleep dysfunction. When voicing their experiences, all caregivers tearfully shared common struggles – neglecting their own needs while mourning their loved one’s decline. Isolation, at times self-imposed, of both PD patients and family unit from the community while preserving loved one’s dignity caused distress. Most feared both disease progression and the future. Caregivers need community awareness and education, free access and supply of PD medications, decentralizing PD care, and more physiotherapy access. Patient focus groups planned for March 18, 2025. Full thematic analyses for all groups forthcoming in April.

Conclusion: Increased PD education, awareness, support, and resources in Zambia are needed. Zambian caregivers highlighted similar PD symptoms to Western countries, voiced high caregiver burden and care gaps in support. This work will gather patient and caregiver perspectives to advance our understanding and care of PD in Zambia, Africa.

References: 1) GBD 2016 Neurology Collaborators. Global, regional, and national burden of neurological disorders, 1990-2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet Neurol. 2019;18(5):459-480. doi:10.1016/S1474-4422(18)30499-X
2) Rizig M, Thomas O. A health literacy campaign for Parkinson’s disease in Africa: a novel campaign to break down language barriers. Lancet Neurol. 2022;21(12):1081-1082. doi:10.1016/S1474-4422(22)00410-0
3) Marras C, Arbatti L, Hosamath A, et al. What Patients Say: Large-Scale Analyses of Replies to the Parkinson’s Disease Patient Report of Problems (PD-PROP). J Parkinsons Dis. 2023;13(5):757-767. doi:10.3233/JPD-225083
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9) Ayele BA, Zewde YZ, Tafesse A, Sultan A, Friedman JH, Bower JH. Non-Motor Symptoms and Associated Factors in Parkinson’s Disease Patients in Addis Ababa, Ethiopia: A Multicenter Cross-Sectional Study. Ethiop J Health Sci. 2021;31(4):837-846. doi:10.4314/ejhs.v31i4.19

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