Objective: To gain a holistic understanding of life with Parkinson’s disease (PD) in six African countries (Egypt, Ethiopia, Ghana, Kenya, Nigeria and Tanzania), through the perspective of people with Parkinson’s (PwP) and caregivers.

Background: Our scientific understanding of how PwP and caregivers negotiate life with PD in Africa is limited. Existing evidence suggests that diagnosis is often delayed (1), stigma is profound (2-4), management is uncertain (5, 6), and caregiver burden is significant (7, 8). However, this so far reflects only certain geographies and is limited to those with a previous PD diagnosis – a privileged population.

Method: Semi-structured in-depth interviews (n=322) were conducted between March 2024-March 2026. Trained qualitative researchers from 10 sites in 6 countries recruited 183 PwP and 139 caregivers through the Transforming Parkinson’s Care in Africa (TraPCAf) study via outpatient clinics and community-based prevalence studies (9). The second avenue offered unique perspectives of those who had not obtained a PD diagnosis until identified through the study. Interviews were conducted in local languages and translated and transcribed for analysis. Data were analysed using thematic analysis and following principles of ‘Big Qual’ (10). An inductive coding framework was developed based on initial data and revised iteratively.

Results: Interviews from Egypt (n=23), Ethiopia (n=40), Ghana (n=76), Kenya (n=58), Nigeria (n=35) and Tanzania (n=70) offer insights into the shared experiences of PwP and caregivers across Africa (for example, challenges accessing medication) and the social and cultural influences unique to each site and country (such as perceived causes of PD symptoms). Overarching themes include ‘the diagnostic journey’, ‘experience of symptoms’, ‘the impact of Parkinson’s’, ‘informal care and social support’, and ‘access to healthcare’. Stigma, gender, age, socioeconomic status, prevalence vs outpatient and urban vs rural living emerge as cross-cutting influences.

Conclusion: This large multi-site qualitative study offers insights into shared and unique challenges of PD across Africa, also giving voice to those who had never received a diagnosis. Such qualitative data are vital in the development of country-specific policy and practice recommendations to improve care.

References: 1. Fothergill-Misbah N, Walker R, Kwasa J, Hooker J, Hampshire K. “Old people problems”, uncertainty and legitimacy: Challenges with diagnosing Parkinson’s disease in Kenya. Social Science & Medicine. 2021;282:114148.
2. Mokaya J, Gray WK, Carr J. Beliefs, knowledge and attitudes towards Parkinson’s disease among a Xhosa speaking black population in South Africa: A cross-sectional study. Parkinsonism & Related Disorders. 2017;41:51-7.
3. Fothergill-Misbah N. The lived experience of stigma and parkinson’s disease in Kenya: a public health challenge. BMC Public Health. 2023;23(1):364.
4. Kaddumukasa M, Kakooza A, Kaddumukasa MN, Ddumba E, Mugenyi L, Sajatovic M, et al. Knowledge and Attitudes of Parkinson’s Disease in Rural and Urban Mukono District, Uganda: A Cross-Sectional, Community-Based Study. Parkinson’s Disease. 2015;2015(196150):1-7.
5. Dotchin C, Walker R. The management of Parkinson’s disease in sub-Saharan Africa. Expert review of neurotherapeutics. 2012;12(6):661-6.
6. Hamid E, Ayele BA, Massi DG, Ben Sassi S, Tibar H, Djonga EE, et al. Availability of Therapies and Services for Parkinson’s Disease in Africa: A Continent-Wide Survey. Movement Disorders. 2021;36(10):1393-2407.
7. Dotchin CL, Paddick SM, Longdon AR, Kisoli A, Gray WK, Dewhurst F, et al. A comparison of caregiver burden in older persons and persons with Parkinson’s disease or dementia in sub-Saharan Africa. International psychogeriatrics. 2014;26(4):687-92.
8. Walga TK. Understanding the Experience and Perspectives of Parkinson’s Disease Patients’ Caregivers. Rehabilitation Research and Practice. 2019;2019:1-9.
9. Walker R, Fothergill-Misbah N, Kariuki S, Ojo O, Cilia R, Dekker MCJ, et al. Transforming Parkinson’s Care in Africa (TraPCAf): protocol for a multimethodology National Institute for Health and Care Research Global Health Research Group project. BMC Neurology. 2023;23(1):373.
10. Brower RL, Jones TB, Osborne-Lampkin LT, Hu S, Park-Gaghan TJ. Big Qual: Defining and Debating Qualitative Inquiry for Large Data Sets. International Journal of Qualitative Methods. 2019;18:1609406919880692.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/lived-experience-of-parkinsons-disease-in-six-african-countries-a-qualitative-multi-site-transforming-parkinsons-care-in-africa-trapcaf-study/