Objective: To explore the experiences of people living with Parkinson’s disease (PWPD) with regards to their diagnostic journeys among public and private hospital settings in Kenya.

Background: Research on Parkinson’s disease (PD) in Kenya (population 51.4 million), is scant [1], while knowledge about PD among the population as well as healthcare professionals is low. This qualitative study examines diagnosis, care and information provision amongst PWPD and their families in Kenya.

Method: Ethnographic methods comprising interviews and observations were applied over 9 months (March – December 2018) across urban and rural areas. Participants included PWPD (N=53), family members and caregivers (N=22), medical consultants in private and public hospitals (N=13), pharmacists (N=28), community health volunteers (N=2) and herbal doctors (N=5).

Results: Obtaining a diagnosis of PD in Kenya is challenging and far from straightforward in all settings. The number of practicing neurologists is very low (N=20), clinics are overwhelmed by neurological cases in private and government hospitals and there are no practicing PD nurse specialists. Interviews with PWPD identified that symptoms of PD are often confused with general ageing or overlooked and PWPD don’t seek medical help until their condition has progressed. As knowledge about the disease is low amongst healthcare professionals, when PWPD do seek help, they are bounced around services, misdiagnosed and some PWPD are never told their diagnosis. Information provision about PD, symptoms and progression at diagnosis is minimal and consequently PWPD have a very poor understanding about their disease.

Conclusion: Diagnostic journeys of PWPD in Kenya are difficult, within private and public settings. Kenya has limited resources to invest into healthcare as well as huge pressures from other non-communicable and communicable diseases. However, as the population ages, the incidence of PD will increase. There is a need to improve knowledge about PD among healthcare professionals and the population so the early symptoms of PD are recognised and accurately diagnosed. More structured neurology services to manage PD including integrated care involving neurologists and PD nurse specialists are also required.

References: 1. The Lancet Neurology: Neurology in sub-Saharan Africa-WHO cares? Lancet neurology. 2006, 5 (8): 637

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MDS Abstracts - https://www.mdsabstracts.org/abstract/diagnostic-journeys-of-people-with-parkinsons-disease-in-kenya-sub-saharan-africa/