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

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.

Access to Medicines for Parkinson's Disease in Kenya: A Qualitative Exploration.

BACKGROUND: The accessibility of Parkinson's disease medicines is limited across sub-Saharan Africa, which can have negative health, social and financial consequences for people with Parkinson's disease and their families. However, there is a stark gap in the literature regarding the impact of poor access to medicines on individuals. OBJECTIVES: The study objective was to understand the accessibility of Parkinson's disease medicines in Kenya from the perspective of people with Parkinson's disease, their caregivers and neurologists. METHODS: In-depth qualitative interviews were conducted with 55 people with Parkinson's disease, 23 caregivers and 8 neurologists to understand their experience regarding challenges with accessing Parkinson's disease medicines and the health, social and financial impact of poor availability and affordability. RESULTS: Medicines for Parkinson's disease were deemed to be largely unavailable and unaffordable across Kenya. People with Parkinson's disease, caregivers and neurologists expressed the financial burden caused by long-term treatment in the absence of health insurance coverage. Further, barriers accessing medicines negatively impacted symptom control, social relations, and quality of life. CONCLUSIONS: Access to Parkinson's disease medicines in Kenya is limited, with severe implications for symptom management and quality of life. People with Parkinson's disease should be able to access and afford the medicines they need to manage their condition.

"Life has always been physical physical, now visual": an explorative study on the use of digital health technologies to promote physiotherapy home treatment programs among older people.

BACKGROUND: There has been a recent rise in the use of technology for health promotional practices, which have begun to gain popularity among physiotherapists but not much research has been conducted to explore its many opportunities and challenges among older adults in developing countries. OBJECTIVES: To explore Nigerian-based Physiotherapists' perspectives on how digital health technologies (DHT) can be utilized to promote physiotherapy home treatment programs among Nigerian older people. METHODS: This is a one-on-one semi-structured interview of 12 geriatric physiotherapists (7 Male, 5 female) virtually in the Teams Meeting platform. Data generated were analyzed thematically using the latest version of NVivo software. RESULTS: Three overarching themes were conceptualized including the usage of DHT in Nigeria, challenges to DHT application, and strategies to improve DHT usage. These described a low awareness and usage of DHT despite its recognized need and advantages for promoting home program. The forms of DHT commonly being used are mostly mobile-based through calls or texts, which could be due to barriers to the use of DHT including older people's declining cognition, poverty, and low interest in technology. Some external problems included the physiotherapists' attachment to hands-on practice and low commitment from the informal caregivers. CONCLUSIONS: These findings suggested ways to utilize the DHT in promoting physiotherapy home treatment programs among older people by encouraging technological innovations and raising awareness among physiotherapists, while the physiotherapists need to patiently educate both the older people and involve their informal caregivers.

Mucuna pruriens to treat Parkinson's disease in low-income countries: Recommendations and practical guidelines from the farmer to clinical trials. Paving the way for future use in clinical practice.

Parkinson's disease (PD) is a progressive and disabling neurodegenerative disease that rapidly worsens and results in premature mortality if left untreated. Although levodopa is the gold standard treatment for PD globally, its accessibility and affordability are severely limited in low- and middle-income countries worldwide. In this scenario, Mucuna pruriens (MP), a leguminous plant growing wild in tropical regions, emerges as a potential alternative or adjunct to levodopa-based medications due to its cost-effectiveness and global natural availability. Recent studies have demonstrated that MP can significantly ameliorate motor symptoms, although tolerability may vary. The proposition that MP could play a pivotal role in providing affordable and symptomatic relief for PD in low- and middle-income countries is grounded in its promising therapeutic profile, yet caution is warranted until more comprehensive data on the long-term safety and efficacy of MP become available. This manuscript summarizes the knowledge gained about MP by the authors, focusing on how to cultivate, store, and provide it to patients in the safest and most effective way in clinical trials. We aim to increase clinical trials investigating its safety and efficacy in PD, before promoting individual use of MP on a global scale, particularly in countries where availability and affordability of levodopa-based medications is still limited.

The role of support groups in the management of Parkinson's disease in Kenya: Sociality, information and legitimacy.

Parkinson's disease (PD) is the second most common neurodegenerative disease globally. It is a progressive neurological disorder which can lead to a decline in wellbeing and quality of life for people living with PD (PwP) and their families/caregivers. However, little is known about the experience of PwP in low- and middle-income countries. In high-income countries, the benefits of support groups in providing social support, preventing social isolation and normalising the PD experience have been established. As part of a wider ethnographic study over 10 months, we explored the role of support groups in the management of PD in Kenya, sub-Saharan Africa. Fifty-five PwP and 23 informal family caregivers took part, and observations took place over ten support group meetings. Both positives and drawbacks were identified. The groups played a role in filling in gaps in information and services that the healing landscape in Kenya was unable to provide, while acting as an important source of care and support for PwP and caregivers, enabling 'sociality' and legitimacy. Drawbacks included limited reach and accessibility, 'social comparisons', and seeing the severity of progressed PD in others. Findings suggest PD support groups could become important components within resource-constrained healthcare settings.

Six Action Steps to Address Global Disparities in Parkinson Disease: A World Health Organization Priority.

Importance: The Global Burden of Disease study conducted between 1990 and 2016, based on a global study of 195 countries and territories, identified Parkinson disease (PD) as the fastest growing neurological disorder when measured using death and disability. Most people affected by PD live in low- and middle-income countries (LMICs) and experience large inequalities in access to neurological care and essential medicines. This Special Communication describes 6 actions steps that are urgently needed to address global disparities in PD. Observations: The adoption by the 73rd World Health Assembly (WHA) of resolution 73.10 to develop an intersectoral global action plan on epilepsy and other neurological disorders in consultation with member states was the stimulus to coordinate efforts and leverage momentum to advance the agenda of neurological conditions, such as PD. In April 2021, the Brain Health Unit at the World Health Organization convened a multidisciplinary, sex-balanced, international consultation workshop, which identified 6 workable avenues for action within the domains of disease burden; advocacy and awareness; prevention and risk reduction; diagnosis, treatment, and care; caregiver support; and research. Conclusions and Relevance: The dramatic increase of PD cases in many world regions and the potential costs of PD-associated treatment will need to be addressed to prevent possible health service strain. Across the board, governments, multilateral agencies, donors, public health organizations, and health care professionals constitute potential stakeholders who are urged to make this a priority.

"Old people problems", uncertainty and legitimacy: Challenges with diagnosing Parkinson's disease in Kenya.

Very little is known about the experience of people living with Parkinson's disease (PD) in low- and middle-income countries, such as those in sub-Saharan Africa. The number of specialists in the region is low and awareness is limited among the population and healthcare professionals. Drawing on ten months of ethnographic fieldwork in urban and rural Kenya with 55 people living with PD (PwP), 23 family members and 22 healthcare professionals from public and private clinics, we set out to understand the experience of diagnosis among PwP in Kenya. The diagnostic journeys of our study participants were typically long, convoluted and confusing. Lack of relevant information, combined with comorbidities and expectations about 'normal' ageing, often conspired to delay interactions with health services for many. There often followed an extended period of diagnostic uncertainty, misdiagnosis and even 'undiagnosis', where a diagnostic decision was reversed. Following diagnosis, patients continued to lack information about their condition and prognosis, making it difficult for friends, family members and others to understand what was happening to them. We suggest that awareness of PD and its symptoms needs to improve among the general population and healthcare professionals. However, diagnosis is only the first step, and needs to be accompanied by better access to information, affordable treatment and support.

Could Mucuna pruriens be the answer to Parkinson's disease management in sub-Saharan Africa and other low-income countries worldwide?

Parkinson's disease (PD) is a progressive, disabling, neurodegenerative disease that requires long term care and pharmaceutical treatment. Levodopa remains the gold standard treatment for PD globally, although it is largely unavailable and unaffordable for the majority of patients in many sub-Saharan African and other low-income countries (LICs). We suggest the potential for Mucuna pruriens (MP), a leguminous plant, to replace or supplement levodopa-based medicines in countries where levodopa is unaffordable and inaccessible due to its low costs of preparation and high natural availability. MP has been shown to induce a great improvement of motor symptoms with few adverse events in recent studies. However, caution is important until more robust data on the long-term safety of MP are available. We believe that MP could potentially be part of the answer to affordable, symptomatic treatment of PD in LICs worldwide.