Objective: To explore how people with Parkinson’s disease (PWPD) living in Kenya manage and negotiate their treatment and care within a scarce and overwhelmed biomedical health setting.

Background: The prevalence of PD continues to rise globally [1] yet research on PD in sub-Saharan Africa (SSA) is lacking. Existing research in SSA has found that treatment and rehabilitation services for PD are largely unavailable or too expensive for the majority [2, 3]. This qualitative study examines the availability and use of biomedical services and alternative healing landscapes for PD management in Kenya.

Method: Ethnographic methods including interviews and observations were applied over 9 months across urban and rural areas. Participants included patients (N=55), family members (N=22), healthcare professionals (N=13), pharmacists (N=28) and herbal doctors (N=5).

Results: No PWPD had ever seen an occupational therapist or dietician, 2 had accessed a speech and language therapist and 11 a physiotherapist. Thirteen PWPD had sought out religious healing and 8 had taken herbal medicines for PD. The cost of private neurology services was unaffordable for many yet the public neurology clinic was overwhelmed and consultations were described as “prescription only”. Basic medication for PD (levodopa/carbidopa) was largely unavailable. 100 tablets could cost up to $80 and all PWPD had to pay for this out-of-pocket. Treatment costs led many families to destitution and PWPD often spent weeks without any treatment. PWPD described drawing on a therapeutic continuum for the treatment of PD including the use of herbs, leaves, honey, supplements, prayers and healing events. Alternative treatment was expensive but offered PWPD hope of a cure when biomedicine could not.

Conclusion: The therapeutic landscape in Kenya is complex and bewildering. Both PWPD and healthcare professionals experienced a constrained agency, struggling with the constraints of service availability, medication affordability and limited information about PD, resulting in an improvised form of medicine and care. Healthcare professionals withheld prognoses from patients while religious and herbal healers sold promises of a cure, resulting in medical pluralism by PWPD. There is a great need to improve access to biomedical services and affordable medication for PWPD in Kenya and other low resource settings to prevent the suffering of untreated PD.

References: [1] E.R. Dorsey, B.R. Bloem, The Parkinson Pandemic-A Call to Action, JAMA Neurol 75(1) (2018) 9-10. [2] C. Dotchin, R. Walker, The management of Parkinson’s disease in sub-Saharan Africa, Expert review of neurotherapeutics 12(6) (2012) 661-6. [3] J. Mokaya, C.L. Dotchin, W.K. Gray, J. Hooker, R.W. Walker, The Accessibility of Parkinson’s Disease Medication in Kenya: Results of a National Survey, Movement Disorders Clinical Practice 3(4) (2016) 376-381.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/navigating-therapeutic-landscapes-with-parkinsons-disease-in-a-scarce-biomedical-healthcare-setting-the-case-of-kenya/