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

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.

Genetic Testing for Parkinson's Disease and Movement Disorders in Less Privileged Areas: Barriers and Opportunities

“…In a survey of 484 Asian PD patients and caregivers, nearly half of the respondents perceived that PD was because of something the patient had done in the past 20 . Similarly, in Africa, PD is often believed to be a punishment for past wrongdoing, or even witchcraft 21–23 . Meanwhile, in some communities, patients with genetic disorders and their families can be considered “cursed,” with extremely negative social repercussions 19 .…”

“…20 Similarly, in Africa, PD is often believed to be a punishment for past wrongdoing, or even witchcraft. [21][22][23] Meanwhile, in some communities, patients with genetic disorders and their families can be considered "cursed," with extremely negative social repercussions. 19 Many patients, therefore, hesitate to share their genetic results with the extended family and often experience isolation after such disclosure.…”

The rise of Parkinson’s disease is a global challenge, but efforts to tackle this must begin at a national level: a protocol for national digital screening and “eat, move, sleep” lifestyle interventions to prevent or slow the rise of non-communicable diseases in Thailand

“…Non-specialist clinicians may not be expecting what is generally perceived as a condition of the elderly, in these younger subjects. Added to this, in certain world regions, including some countries in Africa and parts of Asia, PD is associated with supernatural beliefs and sufferers may face extreme marginalization, stigmatization and persecution for having the disease, resulting in social isolation, poor attendance at healthcare facilities, lack of access to care, definitive diagnosis, and treatment ( 35 ). In the experience of the largest tertiary for PD management in Thailand, the Chulalongkorn Centre of Excellence for Parkinson’s Disease and Related Disorders (ChulaPD, www.chulapd.org ) in Bangkok, PD patients are generally diagnosed when they have already had symptoms on average for 3–5 years, so they are often very symptomatic ( 12 ).…”

Transforming Parkinson's Care in Africa (TraPCAf): protocol for a multimethodology National Institute for Health and Care Research Global Health Research Group project

“…PD demonstrates significant heterogeneity in its causation (e.g., genetic, and environmental risk factors), access to specialised care and treatments and, inadvertently, quality of life and outcomes. Health disparities can affect patient outcomes negatively, and the social impact may vary across cultures [7,8]. Information regarding the awareness, diagnosis, phenotypic characteristics, epidemiology, prevalence, risk factors, treatment, economic impact and lived experiences of people with PD from the African perspective is relatively sparse in contrast to the developed world, and much remains to be learned from, and about, the continent [7][8][9][10][11][12].…”

“…Until now, there has only been one large scale prevalence study of PD in SSA, based on a house-to-house survey in Hai, Tanzania, in which less than a quarter of people with PD (PwP) had previously been diagnosed [17]. Furthermore, identifying the challenges and needs of PwP and their families in different countries and contexts [7,8] would drive the narrative for local evidence-based policies [3].…”