Conceptualizing Community Engagement for Mental and Brain Health Research in Low- and Middle-Income Countries: A Case of Kilifi County, Kenya.

Community engagement (CE) has increasingly been recognized as a critical element for successful health promotion and intervention programs. However, the term CE has been used to mean different things in different settings. In this article, we explore how CE has been conceptualized in the field of mental and brain health in Kilifi County, Kenya. We used ethnographic methods encompassing focused group discussions, key informant interviews, and observations with 65 participants, purposively recruited from Kilifi County. Data were transcribed verbatim and thematically analyzed. Our findings show that community members and stakeholders had diverse perceptions of and experiences with CE. Factors such as trust between researchers and community members, sensitization, and awareness creation were key for acceptance of research projects. Partial involvement in research, lack of access to information, poverty and socio-economic challenges, and financial expectations from researchers hindered CE and led to resistance to participation in research projects. For effective CE, there is a need to work closely with community gatekeepers, create awareness of the research projects, use local languages, and ensure continuous engagement that promotes equitable research participation. Our findings suggest that tacit knowledge, context, and mechanisms for research are all critical features of CE and should be considered to enhance acceptance and sustainability of mental and brain health interventions in Kenya.

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.

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.

Age and gender influence healthy eating and physical activity behaviours in South African adolescents and their caregivers: Transforming Adolescent Lives through Nutrition Initiative (TALENT).

OBJECTIVE: To: (i) understand facilitators and barriers to healthy eating practices and physical activity in younger and older urban adolescent South African boys and girls; and (ii) understand how the views of caregivers interact with, and influence, adolescent behaviours. DESIGN: Semi-structured focus group discussions (FGD) were conducted in July 2018. Data were analysed using thematic analysis. SETTING: Soweto, Johannesburg, South Africa. PARTICIPANTS: Seventy-five participants were stratified into eight FGD as follows: two for young boys and girls (10-12 years); two for older boys and girls (15-17 years); two for caregivers of young adolescents (boys and girls); and two for caregivers of older adolescents (boys and girls). RESULTS: Unlike their caregivers, adolescents were not motivated to eat healthily and failed to appreciate the need to develop consistent patterns of both healthy eating and physical activity for their long-term health. Although adolescents gained independence with age, they commonly attributed unhealthy food choices to a lack of autonomy and, thereby, to the influence of their caregivers. Adolescents and caregivers perceived their engagement in physical activity according to distinct siloes of recreational and routine activity, respectively. Both similarities and differences in the drivers of healthy eating and physical activity exist in adolescents and caregivers, and should be targeted in future interventions. CONCLUSIONS: Our study identified a complex paradigm of eating practices and physical activity in South African adolescents and their caregivers. We also highlighted the need for a new narrative in addressing the multifaceted and interrelated determinants of adolescent health within urban poor settings.

Patients' Experiences of Comorbid HIV/AIDS and Diabetes Care and Management in Soweto, South Africa.

More people with HIV live in South Africa than anywhere else in the world. As people with HIV increasingly confront comorbid conditions, such as Type 2 diabetes, the need for integrated chronic care continues to grow. However, chronic care for patients with multimorbidities is limited in many public hospitals in South Africa. This ethnographic study describes patients' experiences seeking care for comorbid HIV and diabetes at a public tertiary hospital in Soweto, South Africa, and self-management at home. Findings illustrate how fragmented care, multiple clinic appointments, conflicting information, and poor patient-provider communication impeded patients' access to care for their multimorbidities. Socio-economic factors such as poverty, costly transport to the hospital, and food insecurity impeded management of multimorbidities. Integrated care for patients with multimorbidities in Soweto is imperative and must recognize the critical role social and economic conditions play in shaping the experiences of living with HIV, diabetes, and their overlap.

"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.

Young women's perceptions of life in urban South Africa: Contextualising the preconception knowledge gap.

Raising awareness to support improved health and well-being of young women in sub-Saharan Africa is critical, particularly in the preconception period in order to achieve improved health for multiple generations. To inform messaging campaign on preconception health, we conducted eight focus group discussions (FGDs) with young women in Soweto to understand their perceptions and access to health messages. Preconception health was generally not a familiar topic for young women. Participants prioritised information seeking for other pressing challenges they faced such as poverty and unemployment. Within this context, mental health was viewed as important, while physical health only gained importance when illness was present or during pregnancy. Television, radio and community health workers were all viewed as useful communication channels for health messaging. Understanding the importance of preconception health of young adults to benefit from the triple dividend of better health now, better health for the future and for children is a critical knowledge gap for young women. Messages aimed to improve preconception physical and mental health could leverage significant health gains. Health messages should be contextualised within the experiences that young women face and should offer information to help young women cope with their challenges.

Engaging community health workers in maternal and infant death identification in Khayelitsha, South Africa: a pilot study.

BACKGROUND: Engaging community health workers in a formalised death review process through verbal and social autopsy has been utilised in different settings to estimate the burden and causes of mortality, where civil registration and vital statistics systems are weak. This method has not been widely adopted. We piloted the use of trained community health workers (CHW) to investigate the extent of unreported maternal and infant deaths in Khayelitsha and explored requirements of such a programme and the role of CHWs in bridging gaps. METHODS: This was a mixed methods study, incorporating both qualitative and quantitative methods. Case identification and data collection were done by ten trained CHWs. Quantitative data were collected using a structured questionnaire. Qualitative data were collected using semi-structured interview guides for key informant interviews, focus group discussions and informal conversations. Qualitative data were analysed thematically using a content analysis approach. RESULTS: Although more than half of the infant deaths occurred in hospitals (n = 11/17), about a quarter that occurred at home (n = 4/17) were unreported. Main causes of deaths as perceived by family members of the deceased were related to uncertainty about the quality of care in the facilities, socio-cultural and economic contexts where people lived and individual factors. Most unreported deaths were further attributed to weak facility-community links and socio-cultural practices. Fragmented death reporting systems were perceived to influence the quality of the data and this impacted on the number of unreported deaths. Only two maternal deaths were identified in this pilot study. CONCLUSIONS: CHWs can conduct verbal and social autopsy for maternal and infant deaths to complement formal vital registration systems. Capacity development, stakeholder's engagement, supervision, and support are essential for a community-linked death review system. Policymakers and implementers should establish a functional relationship between community-linked reporting systems and the existing system as a starting point. There is a need for more studies to confirm or build on our pilot findings.

'I'd say I'm fat, I'm not obese': obesity normalisation in urban-poor South Africa.

OBJECTIVE: In the past decade, South Africa's obesity epidemic has increased in both children and adults, and being overweight is becoming the norm. Several contributing factors lead to the normalisation of obesity. One of these is the culturally entrenched likeness of larger body sizes or shapes within a milieu of easily accessible unhealthy food and beverages. This qualitative study advances knowledge about the influence of socio-cultural norms and obesogenic environments on weight under estimation and 'obesity normalisation' amongst black South Africans living in an urban setting. DESIGN: A theory-based qualitative study used focus group discussions (FGDs) with a semi-structured interview guide. FGDs were transcribed verbatim and analysed thematically using a constant comparison method. SETTING: Soweto, Johannesburg, South Africa, is a setting which has undergone rapid urbanisation and nutrition transition with ubiquitous availability of processed and fast-foods. PARTICIPANTS: Adults older than 18 years living in Soweto (n 57). RESULTS: There is a wide misperception about obesity amongst black Africans living in an urban setting in Soweto. Participants who admitted to being fat or overweight did not view themselves as such. This could be attributed to unchanging socio-cultural factors that reinforce the acceptability of bigger bodies and living in obesogenic environment. CONCLUSIONS: Without addressing socio-cultural norms that attribute bigger bodies to beauty and wealth, motivating individuals to address weight gain will prove difficult especially for populations living in obesogenic environments. A multi-faceted strategy is required to address obesity in urban South African settings.

Attitudes and perceptions among urban South Africans towards sugar-sweetened beverages and taxation.

OBJECTIVE: A tax on sugar-sweetened beverages (SSB) was introduced in South Africa in April 2018. Our objective was to document perceptions and attitudes among urban South Africans living in Soweto on factors that contribute to their SSB intake and on South Africa's use of a tax to reduce SSB consumption. DESIGN: We conducted six focus group discussions using a semi-structured guide. SETTING: The study was conducted in Soweto, Johannesburg, South Africa, 3 months before South Africa's SSB tax was implemented. PARTICIPANTS: Adults aged 18 years or above living in Soweto (n 57). RESULTS: Participants reported frequent SSB consumption and attributed this to habit, addiction, advertising and wide accessibility of SSB. Most of the participants were not aware of the proposed SSB tax; when made aware of the tax, their responses included both beliefs that it would and would not result in reduced SSB intake. However, participants indicated cynicism with regard to the government's stated motivation in introducing the tax for health rather than revenue reasons. CONCLUSIONS: While an SSB tax is a policy tool that could be used with other strategies to reduce people's high level of SSB consumption in Soweto, our findings suggest a need to complement the SSB tax with a multipronged behaviour change strategy. This strategy could include both environmental and individual levers to reduce SSB consumption and its associated risks.

CARTA fellows' scientific contribution to the African public and population Health Research agenda (2011 to 2018).

BACKGROUND: Since its inception in 2009, the Consortium for Advanced Research Training in Africa (CARTA) program has focused on strengthening the capacity of nine African universities and four research centres to produce skilled researchers and scholars able to improve public and population health on the continent. This study describes the alignment between CARTA-supported doctoral topics and publications with the priorities articulated by the African public and population health research agenda. METHODS: We reviewed the output from CARTA PhD fellows between 2011 and 2018 to establish the volume and scope of the publications, and the degree to which the research focus coincided with the SDGs, World Bank, and African Development Bank research priority areas. We identified nine key priority areas into which the topics were classified. RESULTS: In total, 140 CARTA fellows published 806 articles in peer-reviewed journals over the 8 years up to 2018. All the publications considered in this paper had authors affiliated with African universities, 90% of the publications had an African university first author and 41% of the papers have CARTA fellows as the first author. The publications are available in over 6300 online versions and have been cited in over 5500 other publications. About 69% of the published papers addressed the nine African public and population health research agenda and SDG priority areas. Infectious diseases topped the list of publications (26.8%), followed by the health system and policy research (17.6%), maternal and child health (14.7%), sexual and reproductive health (14.3%). CONCLUSIONS: Investments by CARTA in supporting doctoral studies provides fellows with sufficient training and skills to publish their research in fields of public and population health. The number of publications is understandably uneven across Africa's public and population priority areas. Even while low in number, fellows are publishing in areas such as non-communicable disease, health financing, neglected tropical diseases and environmental health. Violence and injury is perhaps underrepresented. There is need to keep developing research capacity in partner institutions with low research output by training more PhDs in such institutions and by facilitating enabling environments for research.

The policy implementation gap of school oral health programmes in Tshwane, South Africa: a qualitative case study.

BACKGROUND: School going children across the world continue to experience high levels of untreated dental diseases. The South African Oral Health policy documents present measures to address the oral health needs of children in school settings, yet the burden of oral disease in the country is over 50% among primary school children. METHODS: Our study therefore sought to assess the implementation of school oral health programmes in Tshwane in line with policy recommendations using the Walt & Gilson policy analysis triangle. A qualitative explanatory case study was undertaken using a combination of data from direct observations and interviews. The case analysis involved assessing the processes of providing school oral health programmes that were offered at 10 schools in Tshwane. The measuring tools included process maps and an interview guide. RESULTS: The results found that policy implementation was affected by poor prior planning, inadequate resources, poor school infrastructure and lack of support from key stakeholders. Furthermore, inconsistencies in policy interpretation by management, coupled with the fact that the oral hygienists were not conversant with the policy hampered delivery of the policy content. The variations in policy implementation observed were often at the discretion of the oral hygienist in response to contextual challenges. CONCLUSION: There was policy and practice misalignment and variations in the processes of implementing oral health programmes across the 10 schools. Hence regular monitoring, evaluation and root cause analysis is recommended for such programmes in order to make informed decisions on contextually relevant and standardised programme modifications.

Comorbid Suffering: Breast Cancer Survivors in South Africa.

Cycles of chronic illness are unpredictable, especially when multiple conditions are involved, and that instability can transform "normal" everyday life for individuals and their families. This article employs a theory of "comorbid suffering" to interpret how multiple concurrent diagnoses produce webs of remarkable suffering. We collected 50 life stories from breast cancer survivors enrolled in the South Africa Breast Cancer Study. We present three women's narratives who grapple with comorbid suffering and illness-related work, which arise interpersonally when comorbid illnesses affects social interactions. We found that women strive to create a balance between living with comorbid suffering and continuously performing routine activities amid treatment. Discrimination and isolation were underpinned by women's fear of being rejected by their families or how their illnesses created social distance between family members and the wider community. This study therefore illustrates how comorbid suffering requires intensive family commitments amid and beyond illness.

What drives distress? Rethinking the roles of emotion and diagnosis among people with diabetes in Nairobi, Kenya.

Type 2 diabetes mellitus is a condition that both results from and produces social and psychological suffering. As 'diabetes' increases among low income patients in poorer nations, new challenges arise that drive, co-occur, and result from the condition. In this article, we describe how social suffering produces diabetes by way of addressing the varied social, psychological, and biological factors that drive diabetes and are reflected in diabetes experiences among patients seeking care at a public hospital in Nairobi, Kenya. We recruited a non-probability sample to participate in a cross-sectional study of 100 patients (aged 35-65 years), where half of the participants sought care from a diabetes clinic and half sought care from the primary healthcare clinic. We obtained informed consent in writing, and collected life history narratives, surveys, anthropometrics, and biomarkers. This paper evaluates survey data using frequencies and regression tables. We found that social factors as opposed to disease factors were major drivers of psychological distress among those with and without diabetes. Psychological distress was associated with female gender and feelings of financial and personal insecurity. We also found insulin resistance was common among those undiagnosed with diabetes, suggesting that many seeking primary care for other health conditions did not receive a routine diabetes test (most likely because it is an out-of-pocket cost, or other competing social factors) and therefore delayed their diagnosis and care. Thus, social and economic factors may drive not only emotional distress among people with diabetes but also delayed care seeking, testing, and self-care as a result of cost and other social challenges.

When Diabetes Confronts HIV: Biological Sub-citizenship at a Public Hospital in Nairobi, Kenya.

This article investigates how international donor policies cultivate a form of biological sub-citizenship for those with diabetes in Kenya. We interviewed 100 patients at a public hospital clinic in Nairobi, half with a diabetes diagnosis. We focus on three vignettes that illustrate how our study participants differentially perceived and experienced living with and seeking treatment and care for diabetes compared to other conditions, with a special focus on HIV. We argue that biological sub-citizenship, where those with HIV have consistent and comprehensive free medical care and those with diabetes must pay out-of-pocket for testing and treatment, impedes diabetes testing and treatment. Once diagnosed, many are then systematically excluded from the health care system due to their own inability to pay. We argue that the systematic exclusion from international donor money creates a form of biological sub-citizenship based on neoliberal economic policies that undermine other public health protections, such as universal primary health care.

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.

Interdisciplinary perspectives on multimorbidity in Africa: Developing an expanded conceptual model.

Multimorbidity is an emerging challenge for health systems globally. It is commonly defined as the co-occurrence of two or more chronic conditions in one person, but its meaning remains a lively area of academic debate, and the utility of the concept beyond high-income settings is uncertain. This article presents the findings from an interdisciplinary research initiative that drew together 60 academic and applied partners working in 10 African countries to answer the questions: how useful is the concept of multimorbidity within Africa? Can the concept be adapted to context to optimise its transformative potentials? During a three-day concept-building workshop, we investigated how the definition of multimorbidity was understood across diverse disciplinary and regional perspectives, evaluated the utility and limitations of existing concepts and definitions, and considered how to build a more context-sensitive, cross-cutting description of multimorbidity. This iterative process was guided by the principles of grounded theory and involved focus- and whole-group discussions during the workshop, thematic coding of workshop discussions, and further post-workshop development and refinement. Three thematic domains emerged from workshop discussions: the current focus of multimorbidity on constituent diseases; the potential for revised concepts to centre the priorities, needs, and social context of people living with multimorbidity (PLWMM); and the need for revised concepts to respond to varied conceptual priorities amongst stakeholders. These themes fed into the development of an expanded conceptual model that centres the catastrophic impacts multimorbidity can have for PLWMM, families and support structures, service providers, and health systems.

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.

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.