Objective: To gain a holistic understanding of stigma surrounding Parkinson’s disease in Kenya from the perspective of those who are stigmatised, and those who might stigmatise, in order to inform a community-based anti-stigma awareness campaign.

Background: The association between stigma and poor social, health and economic outcomes in people with neurological disorders is a widely recognised global health issue (1). Stigma can have devastating consequences, particularly where symptoms are attributed to supernatural causes (2). Understanding the drivers, facilitators and experiences of Parkinson’s stigma are crucial to build awareness.

Method: Data collection took place in Kilifi, Kenya during January-March 2025. Semi-structured interviews were conducted with people with Parkinson’s (n=6), caregivers (n=3), key stakeholders (n=7) and community members (n=6). Interviews sought to understand the experience and impact of Parkinson’s disease on individuals and the wider community. Secondary aims sought to understand barriers and facilitators to implementing awareness campaigns, and participants’ perceptions of arts as a tool for social change (data not presented here).

Results: Data show poor awareness about Parkinson’s disease across the community. Multiple forms of stigma emerge from the narratives of those with lived experience, including self and enacted stigma. From members of the community and stakeholders (including healthcare professionals and policy makers), data offer insights into people’s perceptions about the symptoms of Parkinson’s, including associations with being drunk or taking drugs, attributing symptoms to other diseases (diabetes, hypertension or stroke), and associations with witchcraft. Participants spoke of the consequences of stigma, including perceived loss of ‘worth’ in the community, loss of income, becoming a burden on families, social isolation and exclusion. As a 67-year-old person with Parkinson’s articulated, “When they see your hands tremor and walking is difficult, you are not a normal person”.

Conclusion: Stigma surrounding Parkinson’s is complex and multi-layered. These data will inform the development of co-produced creative arts as a tool for raising awareness and challenging stigma in Kenya, with the goal of ensuring people with neurological disorders can live safe, dignified, and empowered lives, supported by appropriate policies, laws and practices.

References: (1) Neurological disorders: public health challenges. Geneva: World Health Organization; 2006 (https://iris.who. int/handle/10665/43605, accessed 18 May 2023).
(2) Fothergill-Misbah N. The lived experience of stigma and Parkinson’s disease in Kenya: a public health challenge. BMC Public Health. 2023;23:364. doi: 10.1186/s12889-023-15278-7.

« Back to 2025 International Congress

MDS Abstracts - https://www.mdsabstracts.org/abstract/community-awareness-of-parkinsons-disease-as-a-driver-of-stigma-in-kilifi-kenya/