Living with Parkinson’s disease in Kenya: sociality, improvisation and hope

Abstract

This thesis explores the lived experiences of Parkinson’s disease (PD) in Kenya, sub-Saharan Africa, using ethnographic research. PD is the second most common neurodegenerative disease globally and results in motor and non-motor complications that progress over time, despite effective symptomatic drug therapy. PD increases in prevalence with age, which raises concerns as the population of Africa undergoes demographic transition. To date, most research on PD has focussed on high-income country contexts, so we know very little about how people with PD (PWPD) and their families manage in more resource-constrained settings where medical facilities and information may also be lacking. Based on ten months of fieldwork across multiple sites in urban and rural Kenya, including observations and interviews with 55 PWPD, 23 family members, 23 healthcare professionals and three healers, this thesis makes empirical, theoretical and policy-related contributions. Empirically, it became very clear that awareness about PD is low among both the general population and among healthcare professionals; basic medication and services are unavailable and unaffordable for the majority; the number of neurologists is very low; and palliative care is virtually non-existent. Theoretically, the thesis contributes to debate across three main areas. First, it highlights the importance of sociality and biosociality in navigating care for PWPD and their families, and connections, which sometimes endured beyond death through a form of ‘necrosociality’. Second, uncertainty, improvisation and innovation emerged as defining features of PD management, although structural constraints on agency acted as limits on improvisation. The third theme concerns the importance of hope and faith, which could sometimes be at odds with knowing about PD and preparing for death. This thesis ends with some reflections on policy and practice, including the need for PD awareness efforts, increased speciality neurology training, earlier diagnoses and the registration of effective, affordable medication.