Enhanced or hindered research benefits? A realist review of community engagement and participatory research practices for non-communicable disease prevention in low- and middle-income countries.

INTRODUCTION: Community engagement and participatory research are widely used and considered important for ethical health research and interventions. Based on calls to unpack their complexity and observed biases in their favour, we conducted a realist review with a focus on non-communicable disease prevention. The aim was to generate an understanding of how and why engagement or participatory practices enhance or hinder the benefits of non-communicable disease research and interventions in low- and middle-income countries. METHODS: We retroductively formulated theories based on existing literature and realist interviews. After initial searches, preliminary theories and a search strategy were developed. We searched three databases and screened records with a focus on theoretical and empirical relevance. Insights about contexts, strategies, mechanisms and outcomes were extracted and synthesised into six theories. Five realist interviews were conducted to complement literature-based theorising. The final synthesis included 17 quality-appraised articles describing 15 studies. RESULTS: We developed six theories explaining how community engagement or participatory research practices either enhance or hinder the benefits of non-communicable disease research or interventions. Benefit-enhancing mechanisms include community members' agency being realised, a shared understanding of the benefits of health promotion, communities feeling empowered, and community members feeling solidarity and unity. Benefit-hindering mechanisms include community members' agency remaining unrealised and participation being driven by financial motives or reputational expectations. CONCLUSION: Our review challenges assumptions about community engagement and participatory research being solely beneficial in the context of non-communicable disease prevention in low- and middle-income countries. We present both helpful and harmful pathways through which health and research outcomes are affected. Our practical recommendations relate to maximising benefits and minimising harm by addressing institutional inflexibility and researcher capabilities, managing expectations on research, promoting solidarity in solving public health challenges and sharing decision-making power.

Views on COVID-19 vaccination among residents of Eldoret, Kenya during the 2021 vaccine rollout.

The Government of Kenya initiated COVID-19 vaccination program in March 2021. However, vaccine uptake remains low, especially in rural areas in Kenya. We interviewed 40 residents of Eldoret town to explore the knowledge, beliefs, and meanings they attach towards vaccines generally, and why they chose to vaccinate or not. Two-thirds of our participants perceived themselves to be at risk of COVID-19 infections. About half demonstrated willingness to be vaccinated and about a third had been vaccinated. All participants were knowledgeable about the broader benefits of vaccination. Yet, widespread beliefs that vaccination programmes target children and pregnant women decreased vaccine acceptance. Also, we found that concerns about vaccine safety, lack of knowledge, misinformation from social media, and conspiracy theories contributed to COVID-19 vaccine hesitancy in Eldoret. Low COVID-19 vaccination rates and hesitancy - even when the vaccines are accessible and free in Kenya - cannot be ignored. The current COVID-19 vaccination prioritisation schedule (distinct from the usual structure where children, childbearing women are prioritised) and beliefs that older people are targeted to test vaccines efficacy must be addressed through improved communication and mass education. More research is needed to investigate the socio-economic, political, and historical factors that influence vaccine hesitancy in Kenya.

Flourishing with chronic illness(es) and everyday stress: Experiences from Soweto, South Africa.

The pursuit of flourishing, or living a good life, is a common human endeavor with different meanings across individuals and contexts. What is needed is a further exploration of the relationship between flourishing and health, particularly chronic illness, which affects individuals across the life course and is affected by experiences of stress derived from social and structural vulnerability. Drawing on data from the Soweto Syndemics study, including a locally derived stress scale and in-depth interviews, we explore the connections between flourishing and health for those living with multiple chronic illnesses in Soweto, South Africa within a syndemic of communicable and non-communicable disease. Rather than drawing on Western-centric notions of flourishing (which place emphasis on an individual's capabilities or capacities to thrive), we draw on previous ethnographic work on flourishing in Soweto, South Africa, which described how ukuphumelela, or "becoming victorious," as a social or communal affair. This conceptualization reflects local values and priorities for people's lives and the ways in which their lives are deeply intertwined with each other. We contribute to a more robust understanding of flourishing in context, of how chronic illness is experienced, and of how the role of a patient is transcended in spaces where individuals are part of a social or faith community. As people living with chronic illness(es) actively pursue the good life, health care systems must consider these pursuits as valid parts of the human experience that also challenge narrow definitions of health.

'We were not allowed to gather even for Christmas.' Impact of COVID-19 on South African young people: Exploring messaging and support.

COVID-19 prevention measures including lockdowns, school closures, and restricted movement disrupted young people's lives. This longitudinal qualitative study conducted in Soweto, South Africa aimed to explore young people's knowledge and perceptions of COVID-19, vaccination, and the impact of infections. A convenience sample of 30 young black people (n = 15 men; n = 15 women, aged 16-21 years) from Soweto participated in 24 focus group discussions (FGDs), conducted in six phases - each phase had four FGDs stratified by gender and age. Young people's understanding of COVID-19 deepened throughout the study, however, did not always translate into adherence (following the government's COVID-19 prevention measures). Although deemed inadequate, TV and radio were preferred over internet COVID-19 information. Parents, teachers, and schools were trusted sources of information. Vaccines and limited access to information attributed to low-risk perception, while new COVID-19 variants attributed to high-risk perception. A low-risk perception and conspiracy theories contributed to non-adherence (disregarding COVID-19 preventative measures provided by the government), particularly among young men. Accessing reliable information that considers young people's lives and their living context is important. Communities, scientists, and policymakers must learn from the COVID-19 experience and implement localised preventive strategies for education, awareness, and economic support in future emergencies.

Coping mechanisms during the COVID-19 pandemic and lockdown in metropolitan Johannesburg, South Africa: A qualitative study.

BACKGROUND: The COVID-19 pandemic has caused prolonged stress on numerous fronts. While the acute health impacts of psychosocial stress due to the pandemic are well-documented, less is known about the resources and mechanisms utilized to cope in response to stresses during the pandemic and lockdown. OBJECTIVE: The aim of this study was to identify and describe the coping mechanisms adults utilized in response to the stressors of the COVID-19 pandemic during the 2020 South African lockdown. METHODS: This study included adults (n = 47: 32 female; 14 male; 1 non-binary) from the greater Johannesburg region in South Africa. Interviews with both closed and open-ended questions were administered to query topics regarding the COVID-19 pandemic. Data were coded and thematically analyzed to identify coping mechanisms and experiences. RESULTS: Adults engaged in a variety of strategies to cope with the pandemic and the ensued lockdown. The ability to access or engage in multiple coping mechanisms were either enhanced or constrained by financial and familial situations. Participants engaged in seven major coping mechanisms: interactions with family and friends, prayer and religion, staying active, financial resources, mindset reframing, natural remedies, and following COVID-19 prevention protocols. CONCLUSIONS: Despite the multiple stressors faced during the pandemic and lockdown, participants relied on multiple coping strategies which helped preserve their well-being and overcome pandemic-related adversity. The strategies participants engaged in were impacted by access to financial resources and family support. Further research is needed to examine the potential impacts these strategies may have on people's health.

Healthy eating and physical activity: Analysing Soweto's young adults' perspectives with an intersectionality lens.

BACKGROUND AND OBJECTIVES: Non-communicable diseases (NCDs) are taking a toll on Africa's youth at younger ages than in other regions. These are attributed to risk factors that usually advance in adolescence, such as unhealthy diets and reduced physical activity. Young adults in South Africa, particularly women, tend to be sedentary, consume energy-dense diets low in micronutrients, and are more likely to develop NCDs much earlier in life than those in high-income countries. With an intersectionality perspective, this study explored young adults' barriers and solutions to addressing these risk factors in Soweto. SETTING: Soweto, Johannesburg, South Africa, is one of the most well-known historically disadvantaged townships known for its established communities, and socioeconomic and cultural diversity. Design: A qualitative investigation utilising focus group discussions (FGDs) with a topic guide. FGDs were transcribed verbatim and thematically analysed using a combination of deductive and inductive approaches. PARTICIPANTS: 15 Men and 15 women 18-24 years of age living in Soweto (n = 30). Results: South African young adults have a basic understanding of the significance of nutrition, exercise, and their ties to health. However, numerous barriers (like taste, affordability and crime) to such behaviours were reported, arising from the participants' personal, domestic, social, and local community levels. Young women experienced sexism and had safety concerns while exercising in the streets, while young men tended to describe themselves as lazy to engage in exercise as they find it boring. CONCLUSIONS: Young adults face a multitude of intersecting barriers, making it difficult to adopt or sustain health-promoting behaviours. It is important that potential solutions focus on the intersections of barriers to healthy eating and physical activity in order to provide more realistic support for such behaviours.

Streamlining Global and Local Data on HIV: Underscoring Role of Institutions and Ethics in Improving Quality of HIV Research.

OBJECTIVES: There are inconsistencies in the South Africa HIV mortality data reported by Institute of Health Metrics and Evaluation (IHME), Joint United Nations Programme on HIV/AIDS (UNAIDS), and Statistics South Africa (StatsSA) platforms. Between 2006 and 2016, these global data sets (IHME and UNAIDS) show that HIV-related mortalities were improving in South Africa, whereas StatsSA argues the opposite. We explain the causes of this differing stands and highlight areas that may be improved to address such inconsistencies. METHODS: This observational analysis uses data from IHME, UNAIDS, and StatsSA platforms. RESULTS: We demonstrate that IHME and UNAIDS data sets are based on a mathematical compartmental model, which is not dynamic to all HIV epidemiological aspects. Such limitation may cause inflated improvement in HIV mortality outcomes that are not in line with HIV mortality evidence recorded at the household level as demonstrated by StatsSA. CONCLUSION: There is a need to streamline the IHME, UNAIDS, and StatsSA data on HIV to improve the quality of HIV research and programming in South Africa.

Making morbidity multiple: History, legacies, and possibilities for global health.

Multimorbidity has been framed as a pressing global health challenge that exposes the limits of systems organised around single diseases. This article seeks to expand and strengthen current thinking around multimorbidity by analysing its construction within the field of global health. We suggest that the significance of multimorbidity lies not only in challenging divisions between disease categories but also in what it reveals about the culture and history of transnational biomedicine. Drawing on social research from sub-Saharan Africa to ground our arguments, we begin by describing the historical processes through which morbidity was made divisible in biomedicine and how the single disease became integral not only to disease control but to the extension of biopolitical power. Multimorbidity, we observe, is hoped to challenge single disease approaches but is assembled from the same problematic, historically-loaded categories that it exposes as breaking down. Next, we highlight the consequences of such classificatory legacies in everyday lives and suggest why frameworks and interventions to integrate care have tended to have limited traction in practice. Finally, we argue that efforts to align priorities and disciplines around a standardised biomedical definition of multimorbidity risks retracing the same steps. We call for transdisciplinary work across the field of global health around a more holistic, reflexive understanding of multimorbidity that foregrounds the culture and history of translocated biomedicine, the intractability of single disease thinking, and its often-adverse consequences in local worlds. We outline key domains within the architecture of global health where transformation is needed, including care delivery, medical training, the organisation of knowledge and expertise, global governance, and financing.

Blended-eLearning Improves Alcohol Use Care in Kenya: Pragmatic Randomized Control Trial Results and Parallel Qualitative Study Implications.

Alcohol use is the 5th most important risk factor contributing to the global burden of diseases, with stigma and a lack of trained health workers as the main barriers to adequate care. This study assesses the impact of providing blended-eLearning courses teaching the alcohol, smoking, and substance involvement screening test (ASSIST) screening and its linked brief intervention (BI). In public and private facilities, two randomized control trials (RCTs) showed large and similar decreases in alcohol use in those receiving the BI compared to those receiving only the ASSIST feedback. Qualitative findings confirm a meaningful reduction in alcohol consumption; decrease in stigma and significant practice change, suggesting lay health workers and clinicians can learn effective interventions through blended-eLearning; and significantly improve alcohol use care in a low- and middle-income country (LMIC) context. In addition, our study provides insight into why lay health workers feedback led to a similar decrease in alcohol consumption compared to those who also received a BI by clinicians. Supplementary Information: The online version contains supplementary material available at 10.1007/s11469-022-00841-x.

Implementing and Sustaining Brief Addiction Medicine Interventions with the Support of a Quality Improvement Blended-eLearning Course: Learner Experiences and Meaningful Outcomes in Kenya.

Quality improvement methods could assist in achieving needed health systems improvements to address mental health and substance use, especially in low-middle-income countries (LMICs). Online learning is a promising avenue to deliver quality improvement training. This Computer-based Drug and Alcohol Training Assessment in Kenya (eDATA-K) study assessed users' experience and outcome of a blended-eLearning quality improvement course and collaborative learning sessions. A theory of change, developed with decision-makers, identified relevant indicators of success. Data, analyzed using descriptive statistics and thematic analysis, were collected through extensive field observations, the eLearning platform, focus group discussions, and key informant interviews. The results showed that 22 community health workers and clinicians in five facilities developed competencies enabling them to form quality improvement teams and sustain the new substance-use services for the 8 months of the study, resulting in 4591 people screened, of which 575 received a brief intervention. Factors promoting course completion included personal motivation, prior positive experience with NextGenU.org's courses, and a certificate. Significant challenges included workload and network issues. The findings support the effectiveness of the blended-eLearning model to assist health workers in sustaining new services, in a supportive environment, even in a LMIC peri-urban and rural settings.

Social risks, economic dynamics and the local politics of COVID-19 prevention in Eldoret town, Kenya.

A steady and consistent national and local government leadership is crucial in times of crisis. The trust in government - which can be so fragile - was strong in Eldoret town, a large municipal in western Kenya widely known for ethnic conflicts. In our interviews with 20 business people and 30 community members from Eldoret town, we found that the trust built early in the pandemic was broken due to individual leaders who eventually dismissed public health promotion and engaged in politics and corruption of funds for COVID-19 relief. When leadership was strong, locals in Eldoret town (and especially business owners) engaged in public health prevention measures for the greater good. But when leadership slipped, people complained and eventually ignored public health prevention measures at home, on the bus, and in businesses around town, causing the intensification of outbreaks. This was most common among those engaged in the formal economy as those in the informal economy were more likely to mistrust the government altogether. We show who falls through the cracks when government policy targets viral threats and suggest how local government and public health agencies might work to control COVID-19 infections while ensuring that all Eldoret residents are cared for.

Effective supervision of doctoral students in public and population health in Africa: CARTA supervisors' experiences, challenges and perceived opportunities.

The quality and success of postgraduate education largely rely on effective supervision. Since its inception in 2008, the Consortium for Advanced Research Training in Africa (CARTA) has been at the forefront of providing training to both students and supervisors in the field of public and population health. However, there are few studies on supervisors' perceptions on effective doctoral supervision. We used a mostly descriptive study design to report CARTA-affiliated doctoral supervisors' reflections and perceptions on doctoral supervision, challenges and opportunities. A total of 77 out of 160 CARTA supervisors' workshop participants responded to the evaluation. The respondents were affiliated with 10 institutions across Africa. The respondents remarked that effective supervision is a two-way process, involving both supervisor and supervisee's commitment. Some reported that the requirements for effective supervision included the calibre of the PhD students, structure of the PhD programme, access to research infrastructure and resources, supervision training, multidisciplinary exposure and support. Male supervisors have significantly higher number of self-reported PhD graduates and published articles on Scopus but no difference from the females in h-index. We note both student and systemic challenges that training institutions may pursue to improve doctoral supervision in Africa.

God, Church water and spirituality: Perspectives on health and healing in Soweto, South Africa.

Faith, belief, and religion can powerfully shape how people live with and heal from illness. Engaging in religious practices, from gathering for services to reading the holy texts and engaging in private prayer, can serve as a critical way of coping or building resilience amidst everyday social, moral, and medical challenges. In this article, we investigate why, what, and how people living with chronic illness in an urban South African township prioritise healing practices of the Church over the Clinic. We conducted 88 in-depth qualitative interviews to understand how people think about health, chronic illness, and healing. Most people described complex socio-spiritual beliefs and practices that many prioritised or practiced apart from biomedical care. This included religious practices, such as prayer and drinking church water, as well as one's spirituality, which was an essential way in which people found healing. Recognising how socio-spiritual practice fosters healing and wellness is critical for thinking about health and healing for Soweto residents.

"Drinking Too Much, Fighting Too Much": The Dual "Disasters" of Intimate Partner Violence and Alcohol Use in South Africa.

The intersecting issues of intimate partner violence (IPV) and alcohol abuse in South Africa are often characterized as "disasters." Ethnographic research among women in Soweto demonstrates the different manifestations of IPV, perceptions of abuse, and coping mechanisms to manage harmful domestic relationships. Findings suggest a consistent relationship between excessive drinking patterns and IPV-most significantly, physical and emotional abuse-while indicating that domestic violence measures should include questions about stress. The authors also argue against pathologizing the relationship between IPV and alcohol abuse, to instead center the structured, sedimented ways that violence within the home has become a "normalized" disaster.

A mixed-methods, population-based study of a syndemic in Soweto, South Africa.

A syndemic has been theorized as a cluster of epidemics driven by harmful social and structural conditions wherein the interactions between the constitutive epidemics drive excess morbidity and mortality. We conducted a mixed-methods study to investigate a syndemic in Soweto, South Africa, consisting of a population-based quantitative survey (N = 783) and in-depth, qualitative interviews (N = 88). We used ethnographic methods to design a locally relevant measure of stress. Here we show that multimorbidity and stress interacted with each other to reduce quality of life. The paired qualitative analysis further explored how the quality-of-life impacts of multimorbidity were conditioned by study participants' illness experiences. Together, these findings underscore the importance of recognizing the social and structural drivers of stress and how they affect the experience of chronic illness and well-being.

Engaging communities in non-communicable disease research and interventions in low- and middle-income countries: a realist review protocol.

INTRODUCTION: Engaging communities and intended beneficiaries at various stages of health research is a recommended practice. The contribution of community engagement to non-communicable disease research in low- and middle-income countries has not yet been extensively studied or synthesised. This protocol describes the steps towards generating an understanding of community engagement in the context of non-communicable disease research, prevention and health promotion using a realist review approach. A realist lens enables a rich explanatory approach to causation while capturing complexity, and an openness to multiple outcomes, including unintended consequences. The review will thus develop an understanding of community engagement without assuming that such practices result in more ethical research or effective interventions. METHODS AND ANALYSIS: We propose a realist approach aiming to examine how, why, under what circumstances and for whom community engagement works or does not work. The iterative review steps include clarifying the review scope; searching for evidence; appraising studies and extracting data; synthesising evidence and drawing conclusions; and disseminating, implementing and evaluating the findings. Principles of meta-narrative review (pragmatism, pluralism, historicity, contestation, reflexivity and peer review) are employed to ensure practicable and contextualised review outputs. The proposed review will draw on theoretical and empirical literature beyond specific diseases or settings, but with a focus on informing non-communicable disease research and interventions in low- and middle-income countries. The synthesis of existing literature will be complemented by qualitative realist interviews and stakeholder consultation. Through drawing on multiple types of evidence and input from both experts and intended beneficiaries, the review will provide critical and pragmatic insights for research and community engagement in low- and middle-income countries. ETHICS AND DISSEMINATION: Ethical approval has been obtained from the University of the Witwatersrand. Dissemination will include traditional academic channels, institutional communications, social media and discussions with a wide range of stakeholders.

Community surveillance and response to maternal and child deaths in low- and middle-income countries: A scoping review.

BACKGROUND: Civil registration and vital statistics (CRVS) systems do not produce comprehensive data on maternal and child deaths in most low- and middle-income countries (LMICs), with most births and deaths which occur outside the formal health system going unreported. Community-based death reporting, investigation and review processes are being used in these settings to augment official registration of maternal and child deaths and to identify death-specific factors and associated barriers to maternal and childcare. This study aims to review how community-based maternal and child death reporting, investigation and review processes are carried out in LMICs. METHODS: We conducted a scoping review of the literature published in English from January 2013 to November 2020, searching PubMed, EMBASE, PsycINFO, Joanna Briggs, The Cochrane Library, EBM reviews, Scopus, and Web of Science databases. We used descriptive analysis to outline the scope, design, and distribution of literature included in the study and to present the content extracted from each article. The scoping review is reported following the PRISMA reporting guideline for systematic reviews. RESULTS: Of 3162 screened articles, 43 articles that described community-based maternal and child death review processes across ten countries in Africa and Asia were included. A variety of approaches were used to report and investigate deaths in the community, including identification of deaths by community health workers (CHWs) and other community informants, reproductive age mortality surveys, verbal autopsy, and social autopsy. Community notification of deaths by CHWs complements registration of maternal and child deaths missed by routinely collected sources of information, including the CRVS systems which mostly capture deaths occurring in health facilities. However, the accuracy and completeness of data reported by CHWs are sub-optimal. CONCLUSIONS: Community-based death reporting complements formal registration of maternal and child deaths in LMICs. While research shows that community-based maternal and child death reporting was feasible, the accuracy and completeness of data reported by CHWs are sub-optimal but amenable to targeted support and supervision. Studies to further improve the process of engaging communities in the review, as well as collection and investigation of deaths in LMICs, could empower communities to respond more effectively and have a greater impact on reducing maternal and child mortality.

Pathways to Care for Patients With Type 2 Diabetes and HIV/AIDS Comorbidities in Soweto, South Africa: An Ethnographic Study.

BACKGROUND: South Africa is experiencing colliding epidemics of HIV/AIDS and noncommunicable diseases. In response, the National Department of Health has implemented integrated chronic disease management aimed at strengthening primary health care (PHC) facilities to manage chronic illnesses. However, chronic care is still fragmented. This study explored how the health system functions to care for patients with comorbid type 2 diabetes (T2DM) and HIV/AIDS at a tertiary hospital in Soweto, South Africa. METHODS: We employed ethnographic methods encompassing clinical observations and qualitative interviews with health care providers at the hospital (n=30). Data were transcribed verbatim and thematically analyzed using QSR NVivo 12 software. FINDINGS: Health systemic challenges such as the lack of medication, untrained nurses, and a limited number of doctors at PHC clinics necessitated patient referrals to a tertiary hospital. At the hospital, patients with T2DM were managed first at the medical outpatient clinic before they were referred to a specialty clinic. Those with comorbidities attended different clinics at the hospital partly due to the structure of the tertiary hospital that offers specialized care. In addition, little to no collaboration occurred among health care providers due to poor communication, noncentralized patient information, and staff shortage. As a result, patients experienced disjointed care. CONCLUSION: PHC clinics in Soweto need to be strengthened by training nurses to diagnose and manage patients with T2DM and also by ensuring adequate medical supplies. We recommend that the medical outpatient clinic at a tertiary hospital should also be strengthened to offer integrated and collaborative care to patients with T2DM and other comorbidities. Addressing key systemic challenges such as staff shortages and noncentralized patient information will create a patient-centered as opposed to disease-specific approach to care.

"Thinking Too Much": A Systematic Review of the Idiom of Distress in Sub-Saharan Africa.

Idioms of distress have been employed in psychological anthropology and global mental health to solicit localized understandings of suffering. The idiom "thinking too much" is employed in cultural settings worldwide to express feelings of emotional and cognitive disquiet with psychological, physical, and social consequences on people's well-being and daily functioning. This systematic review investigates how, where, and among whom the idiom "thinking too much" within varied Sub-Saharan African contexts was investigated. We reviewed eight databases and identified 60 articles, chapters, and books discussing "thinking too much" across Sub-Saharan Africa. Across 18 Sub-Saharan African countries, literature on "thinking too much" focused on particular sub-populations, including clinical populations, including people living with HIV or non-communicable diseases, and women experiencing perinatal or postnatal depression; health workers and caregivers; and non-clinical populations, including refugees and conflict-affected communities, as well as community samples with and without depression. "Thinking too much" reflected a broad range of personal, familial, and professional concerns that lead someone to be consumed with "too many thoughts." This research demonstrates that "thinking too much" is a useful idiom for understanding rumination and psychiatric distress while providing unique insights within cultural contexts that should not be overlooked when applied in clinical settings.