The lived experience of stigma and parkinson’s disease in Kenya: a public health challenge

Abstract

Abstract Background As a disease characterised by non-motor and very visible motor symptoms, Parkinson’s disease has been associated with multiple forms of stigma, while awareness about the disease globally remains low. The experience of stigma relating to Parkinson’s disease from high-income nations is well-documented, while less is known about low- and middle-income countries (LMICs). Literature on stigma and disease from Africa and the Global South has described the added complexities people face resulting from structural violence, as well as perceptions about symptoms and disease associated with supernatural beliefs, which can have significant implications for access to healthcare and support. Stigma is a recognised barrier to health-seeking behaviour and a social determinant of population health. Methods This study draws on qualitative data collected as part of a wider ethnographic study to explore the lived experience of Parkinson’s disease in Kenya. Participants include 55 people diagnosed with Parkinson’s and 23 caregivers. The paper draws on the Health Stigma and Discrimination Framework as a tool to understand stigma as a process. Results Data from interviews identified the drivers and facilitators of stigma, including poor awareness of Parkinson’s, lack of clinical capacity, supernatural beliefs, stereotypes, fear of contagion and blame. Participants reported their lived realities of stigma, and experiences of stigma practices, which had significant negative health and social outcomes, including social isolation and difficulty accessing treatment. Ultimately, stigma had a negative and corrosive effect on the health and wellbeing of patients. Conclusion This paper highlights the interplay of structural constraints and the negative consequences of stigma experienced by people living with Parkinson’s in Kenya. The deep understanding of stigma made possible through this ethnographic research leads us to see stigma as a process, something that is embodied and enacted. Targeted and nuanced ways of tackling stigma are suggested, including educational and awareness campaigns, training, and the development of support groups. Importantly, the paper shows that awareness of, and advocacy for the recognition of, Parkinson’s globally needs to improve. This recommendation is in line with the World Health Organization’s Technical Brief on Parkinson disease, which responds to the growing public health challenge posed by Parkinson’s.