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

Ph. D. Thesis.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.The Economic and Social Research Council (ESRC) Northern Ireland and North East Doctoral Training Partnership (NINE DTP

“Old people problems”, uncertainty and legitimacy: Challenges with diagnosing Parkinson\u27s disease in Kenya

Very little is known about the experience of people living with Parkinson\u27s 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

“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

“Life has always been physical physical, now visual”: an explorative study on the use of digital health technologies to promote physiotherapy home treatment programmes 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

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

Challenges around end-of-life care for people with Parkinson’s disease in Kenya

Objective: To explore how people living with Parkinson’s disease (PwP), and their families, in Kenya negotiate the end of life.Background: Parkinson’s disease (PD) is a progressive condition that can result in significant pain and suffering towards the end of life. End-of-life care in high-income countries (HICs) often takes place in institutional settings, especially considering the prevalence of comorbidities in advanced PD. Yet few healthcare professionals in Kenya receive any palliative care training, while facilities are lacking [2]. There is limited research exploring end-of-life care for PwP in Kenya, sub-Saharan Africa (SSA), or any low-/middle-income setting.Method: ethnographic methods comprising interviews and observations took place over 10 months across Kenya. Participants included PwP (N=55), family members (N=23) and healthcare professionals (N=13).Results: end-of-life care fell on families as hospitals were unaffordable for most and government hospitals had no palliative care facilities. Hope of a miracle recovery through faith/prayer was important for families but could make death more shocking when it came. The study illustrated the societal reluctance to discuss death and dying among families and healthcare professionals due to complex factors at the societal level (cultural “taboo” about death-talk) and individual level (doctors did not want to be seen as “failing” or family members did not want to accept death). Acknowledging that death was near allowed patients to “give up”. Challenges existed around preferred place of death (home, hospice, hospital), which was dependent on social/financial resources, and required improvisation from family and healthcare professionals.Conclusion: the reluctance to discuss death and dying requires consideration when thinking about end-of-life care for PD in SSA. Palliative care requires an acceptance that the end is near and awareness of the proximity of death, although in Kenya, this was perceived as antithetical to care. Perhaps ‘palliative care’ in its current form needs repackaging in Kenya if doctors are to be equipped with the necessary skills to deliver effective end-of-life care. Initiating discussions around death/dying and normalising death talk could improve acceptance. Findings also provide insights into inequalities in access to care for PwP from BAME groups living across HICs and avenues to address existing disparities in uptake of palliative services

The role of community engagement and involvement in Parkinson’s disease research: a case study from Africa

Objective: using a case study from Africa to understand the potential role of community engagement and involvement (CEI) in future research on Parkinson’s disease (PD).Background: the value of CEI in research is becoming increasingly recognised across academic, government and pharmaceutical sectors [1]. CEI builds ongoing, meaningful and collaborative relationships between the community and organisations where research is carried out ‘with’ or ‘by’ members of the public and communities, not ‘to’ or ‘for’ them. CEI ensures what matters to patients, and their families, is researched and can improve the validity and robustness of studies.Method: sixteen people with PD, family members, health workers and support group leaders from Nigeria, Ghana, Kenya, Ethiopia and Uganda came together during a CEI meeting to inform a research grant proposal. The meeting was held via Zoom and lasted over two hours. The role of CEI was to improve the equality, efficacy and impact of responses and services through ensuring the community were active stakeholders in the deliberations, design, decision-making, implementation and dissemination of the project.Results: the meeting allowed participants to discuss their personal challenges with PD, providing a perspective that underscored the importance of giving communities a voice. Common issues across Africa included: poor medication availability, accessibility and affordability; lack of specialist health workers; improper diagnostic methods; lack of PD awareness/educational materials; stigma; lack of support groups; poor awareness of alternative/non-pharmacological therapies; challenges around the end of life; and gender concerns.Conclusion: PD is a complex condition with a wide heterogeneity of disease that is experienced differently depending on sociocultural, political and economic contexts. When exploring PD where previous research is scant, it is important to ensure proposals meet the needs/challenges of the groups they are intended to impact; CEI work should continue throughout the project’s lifecycle. The Covid-19 pandemic has accelerated uptake of technology globally and this meeting demonstrated the possibilities for technology to ensure patients can be involved in research. This CEI session, the first of its kind for PD in Africa, showed how virtual platforms can connect people globally, while demonstrating the willingness of patients to be involved in research

Six action steps to address global disparities in Parkinson Disease: a World Health Organization priority

Special CommunicationLImportance: 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