Kansa talk: mapping cancer terminologies in Bagamoyo, Tanzania towards dignity-based practice.

This paper reports and examines the results of qualitative research on the use of local cancer terminology in urban Bagamoyo, Tanzania. Following recent calls to unify evidence and dignity-based practices in global health, this research locates local medical sociolinguistics as a key place of entry into creating epistemologically autonomous public health practices. We used semistructured ethnographic interviews to reveal both the contextual and broader patterns related to use of local cancer terminologies among residents of Dunda Ward in urban Bagamoyo. Our findings suggest that people in Bagamoyo employ diverse terms to describe and make meanings about cancer that do not neatly fit with biomedical paradigms. This research not only opens further investigation about how ordinary people speak and make sense of the emerging cancer epidemic in places like Tanzania, but also is a window into otherwise conceptualisations of 'intervention' onto people in formerly colonised regions to improve a health situation. We argue that adapting biomedical concepts into local sociolinguistic and knowledge structures is an essential task in creating dignity-based, evidence-informed practices in global health.

'There Were Moments We Wished She Could Just Die': The Highly Gendered Burden of Nodding Syndrome in Northern Uganda.

Nodding Syndrome (NS) occurs within a wide spectrum of epilepsies seen in onchocerciasis endemic areas of sub-Saharan Africa. It has debilitating consequences on affected individuals and increases the socio-economic, physical and psychological burden on care-givers and their households, diminishing their standing within the community. Social science research on the disproportionate burden of the disease on females is limited. Based on ethnographic research over 3 years in northern Uganda, we explored the burden of being ill and care-giving for persons with NS from a gendered perspective. We found that NS-affected females were at greater risk of physical and psychological abuse, sexual violence, unwanted pregnancies, sexually transmitted infections and stigma, in a context of deteriorating socio-economic conditions. Primary care-givers of the NS-affected, mostly women, struggled to make ends meet and were subjected to stigma and abandonment. Targeted interventions, including legal protection for affected females, stigma reduction, and psycho-social and financial support are needed.

Understanding Malaria Persistence: A Mixed-Methods Study on the Effectiveness of Malaria Elimination Strategies in South-Central Vietnam.

Despite the scale-up of vector control, diagnosis and treatment, and health information campaigns, malaria persists in the forested areas of South-Central Vietnam, home to ethnic minority populations. A mixed-methods study using an exploratory sequential design was conducted in 10 Ra-glai villages in Bac Ai district of Ninh Thuan province to examine which social factors limited the effectiveness of the national malaria elimination strategy in the local setting. Territorial arrangements and mobility were found to directly limit the effectiveness of indoor residual spraying and long-lasting insectidical treated nets (LLINs). Households (n=410) were resettled in the "new villages" by the government, where they received brick houses (87.1%) and sufficient LLINs (97.3%). However, 97.6% of households went back to their "old villages" to continue slash-and-burn agriculture. In the old village, 48.5% of households lived in open-structured plot huts and only 5.7% of them had sufficient LLIN coverage. Household representatives believed malaria could be cured with antimalarials (57.8%), but also perceived non-malarial medicines, rituals, and vitamin supplements to be effective against malaria. Household members (n = 1,957) used public health services for their most recent illness (62.9%), but also reported to buy low-cost medicines from the private sector to treat fevers and discomfort as these were perceived to be the most cost-effective treatment option for slash-and-burn farmers. The study shows the relevance of understanding social factors to improve the uptake of public health interventions and calls for contextually adapted strategies for malaria elimination in ethnic minority populations in Vietnam and similar settings.

The Community Lab of Ideas for Health: Community-Based Transdisciplinary Solutions in a Malaria Elimination Trial in The Gambia.

Background: Community participation in global health interventions may improve outcomes and solve complex health issues. Although numerous community participatory approaches have been developed and introduced, there has been little focus on "how" and "who" to involve in the implementation of community-based clinical trials where unequal distribution of power between implementers and communities pre-exists. Addressing how to achieve community-based solutions in a malaria elimination trial in The Gambia, we developed the Community Lab of Ideas for Health (CLIH): a participatory approach that enabled communities to shape trial implementation. Methods: As part of transdisciplinary research, we conducted qualitative research with in-depth interviews, discussions, and observations in 17 villages in the North Bank Region of The Gambia between March 2016 and December 2017. We designed an iterative research process involving ethnography, stakeholder-analysis, participatory-discussions, and qualitative monitoring and evaluation, whereby each step guided the next. We drew upon ethnographic results and stakeholder-analysis to identify key-informants who became participants in study design and implementation. The participatory-discussions provided a co-creative space for sharing community-centric ideas to tackle trial implementation challenges. The proposed strategies for trial implementation were continuously refined and improved through our monitoring and evaluation. Results: The CLIH incorporated communities' insights, to co-create tailored trial implementation strategies including: village health workers prescribing and distributing antimalarial treatments; "compounds" as community-accepted treatment units; medicine distribution following compound micro-politics; and appropriate modes of health message delivery. Throughout the iterative research process, the researchers and communities set the common goal, namely to curtail the medical poverty trap by reducing malaria transmission and the burden thereof. This innovative collaborative process built trust among stakeholders and fully engaged researchers and communities in co-creation and co-implementation of the trial. Discussion: The CLIH approach succeeded in touching the local realities by incorporating a spectrum of perspectives from community-members and discerning project-derived knowledge from local-knowledge. This process allowed us to co-develop locally-oriented solutions and ultimately to co-establish an intervention structure that community-members were ready and willing to use, which resulted in high uptake of the intervention (92% adherence to treatment). Successfully, the CLIH contributed in bridging research and implementation.

Complexities in Defining the Unit of Intervention for Reactive Community-Based Malaria Treatment in the Gambia.

With significant declines in malaria, infections are increasingly clustered in households, or groups of households where malaria transmission is higher than in surrounding household/villages. To decrease transmission in such cases, reactive interventions target household members of clinical malaria cases, with the intervention unit (e.g., the "household/s") derived from an epidemiological and operational perspective. A lack of unanimity regarding the spatial range of the intervention unit calls for greater importance to be placed on social context in conceptualizing the appropriate unit. A novel malaria elimination strategy based on reactive treatment was recently evaluated by a cluster randomized trial in a low transmission setting in The Gambia. Transdisciplinary research was used to assess and improve the effectiveness of the intervention which consisted, among others, of reflecting on whether the household was the most adequate unit of analysis. The intervention was piloted on the smallest treatment unit possible and was further adapted following a better understanding of the social and epidemiological context. Intervention units defined according to (i) shared sleeping spaces and (ii) household membership, showed substantial limitations as it was not possible to define them clearly and they were extremely variable within the study setting. Incorporating local definitions and community preference in the trial design led to the appropriate intervention unit-the compound-defined as an enclosed space containing one or several households belonging to the same extended patrilineal family. Our study demonstrates the appropriateness of using transdisciplinary research for investigating alternative intervention units that are better tailored to reactive treatment approaches.

Interventions to increase facility births and provision of postpartum care in sub-Saharan Africa: a scoping review.

BACKGROUND: Most maternal deaths occur during the intrapartum and peripartum periods in sub-Saharan Africa, emphasizing the importance of timely access to quality health service for childbirth and postpartum care. Increasing facility births and provision of postpartum care has been the focus of numerous interventions globally, including in sub-Saharan Africa. The objective of this scoping review is to synthetize the characteristics and effectiveness of interventions to increase facility births or provision of postpartum care in sub-Saharan Africa. METHODS: We searched for systematic reviews, scoping reviews, qualitative studies and quantitative studies using experimental, quasi experimental, or observational designs, which reported on interventions for increasing facility birth or provision of postpartum care in sub-Saharan Africa. These studies were published in English or French. The search comprised six scientific literature databases (Pubmed, CAIRN, la Banque de Données en Santé Publique, the Cochrane Library). We also used Google Scholar and snowball or citation tracking. RESULTS: Strategies identified in the literature as increasing facility births in the sub-Saharan African context include community awareness raising, health expenses reduction (transportation or user fee), non-monetary incentive programs (baby kits), or a combination of these with improvement of care quality (patient's privacy, waiting time, training of provider), and or follow-up of pregnant women to use health facility for birth. Strategies that were found to increase provision of postpartum care include improvement of care quality, community-level identification and referrals of postpartum problems and transport voucher program. CONCLUSIONS: To accelerate achievements in facility birth and provision of postpartum care in sub-Saharan Africa, we recommend strategies that can be implemented sustainably or produce sustainable change. How to sustainably motivate community actors in health interventions may be particularly important in this respect. Furthermore, we recommend that more intervention studies are implemented in West and Central Africa, and focused more on postpartum. In in sub-Saharan Africa, many women die when giving or few days after birth. This happens because they do not have access to good health services in a timely manner during labor and after giving birth. Worldwide, many interventions have been implemented to Increase the number of women giving birth in a health facility or receiving care from health professional after giving birth. The objective of this study is to synthetize the characteristics and effectiveness of interventions that have been implemented in sub-Saharan Africa, aiming to increase the number of women giving birth in a health facility or receiving care from health professional after birth. To proceed with this synthesis, we did a review of studies that have reported on such interventions in sub-Saharan Africa. These studies were published in English or French. The interventions identified to increase the number of women giving birth in a health facility include community awareness raising, reduction of health expenses (transportation or user fee), non-monetary incentive programs (baby kits), or a combination of these with improvement of care quality (patient's privacy, waiting time, training of provider), and or follow-up of pregnant women to use health facility for birth. Interventions implemented to increase the number women receiving care from a health professional after birth include improvement of care quality, transport voucher program and community-level identification and referrals to the health center of mothers' health problems. In sub-Saharan Africa, to accelerate increase in the number of women giving birth in a health facility and receiving care from a health professional after, we recommend interventions that can be implemented sustainably or produce sustainable change. How to sustainably motivate community actors in health interventions may be particularly important in this respect. Furthermore, we recommend the conduct in West and Central Africa, of more studies targeting interventions to increase the number of women giving birth in a health facility and or receiving care from a health professional after birth.

RéSUMé: CONTEXTE: La plupart des décès maternels surviennent pendant les périodes intrapartum et péripartum en Afrique subsaharienne, ce qui souligne l'importance de l'accès à temps aux services de santé de qualité pour l'accouchement et les soins post-partum. L'augmentation des accouchements institutionnels et l'offre de soins post-partum ont fait l'objet de nombreuses interventions dans le monde entier, y compris en Afrique subsaharienne. L'objectif de cette étude est de synthétiser les caractéristiques et l'efficacité des interventions visant à accroître les accouchements institutionnels ou l'offre de soins post-partum en Afrique subsaharienne. MéTHODES: Nous avons recherché des revues systématiques, des revues de portée, des études qualitatives et des études quantitatives utilisant des types expérimentaux, quasi expérimentaux ou d'observation, qui rapportaient sur des interventions visant à accroître les accouchements institutionnels et l'offre de soins post-partum en Afrique subsaharienne. Ces études ont été publiées en anglais ou en français. La recherche a porté sur six bases de données de littérature scientifique (Pubmed, CAIRN, la Banque de Données en Santé Publique, la Cochrane Library). Nous avons également utilisé Google Scholar et le suivi des boules de neige ou des citations. RéSULTATS: Les stratégies identifiées dans la littérature comme accroissant les accouchements intentionnels dans le contexte de l'Afrique subsaharienne comprennent la sensibilisation des communautés, la réduction des dépenses de santé (transport ou frais d'utilisation), des programmes d'incitation non monétaires (kits pour bébés), ou une combinaison de ces éléments avec l'amélioration de la qualité des soins (respect de la vie privée du patient, temps d'attente, formation du prestataire), et ou le suivi des femmes enceintes pour qu'elles utilisent l'établissement de santé pour l'accouchement. Les stratégies qui ont été trouvées pour accroitre l'offre des soins post-partum comprennent l'amélioration de la qualité des soins, l'identification au niveau communautaire et la référence des problèmes post-partum et le programme de bons de transport. CONCLUSIONS: Pour accélérer les réalisations en matière d'accouchement institutionnel et d'offre de soins post-partum en Afrique subsaharienne, nous recommandons des stratégies qui peuvent être mises en œuvre de manière durable ou produire des changements durables. La manière de motiver durablement les acteurs communautaires dans les interventions sanitaires peut être particulièrement importante à cet égard. En outre, nous recommandons que davantage d'études d'intervention soient mises en œuvre en Afrique de l'Ouest et du Centre, et qu'elles soient davantage axées sur les soins post-partum.

Diagnostic Practices and Treatment for P. vivax in the InterEthnic Therapeutic Encounter of South-Central Vietnam: A Mixed-Methods Study.

Malaria elimination in the Greater Mekong Sub-Region is challenged by a rising proportion of malaria attributable to P. vivax. Primaquine (PQ) is effective in eliminating the parasite's dormant liver stages and can prevent relapsing infections, but it induces severe haemolysis in patients with Glucose-6-Phosphate Dehydrogenase (G6PD) deficiency, highlighting the importance of testing enzyme activity prior to treatment. A mixed-method study was conducted in south-central Vietnam to explore the factors that affect acceptability of G6PD testing, treatment-seeking behaviors, and adherence to current regimens. The majority of respondents (75.7%) were unaware of the different parasite species and rather differentiated malaria by perceived severity. People sought a diagnosis if suspected of malaria fever but not if they perceived their fevers as mild. Most respondents agreed to take prescribed medication to treat asymptomatic infection (94.1%) and to continue medication even if they felt better (91.5%). Health professionals did not have G6PD diagnostic tools nor the means to prescribe PQ safely. Adherence to treatment was linked to trust in public providers, who were perceived to make therapeutic decisions in the interest of the patient. Greater focus on providing acceptable ways of assessing G6PD deficiency will be needed to ensure the timely elimination of malaria in Vietnam.

Conceptions within misconceptions: Pluralisms in an Ebola vaccine trial in West Africa.

Ensuring that biomedical information about research procedures is adequately understood by participants and their communities is key for conducting ethical research. This article explores participants' understanding of trial procedures for an experimental vaccine against Ebola virus disease (EVD) in a West African context. We found that some trial participants believed there was a chance of contracting Ebola and other sicknesses from the vaccine, and others believed both the vaccine and the placebo control would be able to prevent other illnesses than EVD. While these beliefs might be understood as misconceptions about the vaccine trial, this paper shows that such a conclusion is problematic because it excludes local explanatory health models and logics of causality. The paper invites bioethicists to work with anthropologists to take seriously different models of health knowledge in global health research. Investigating and addressing such differences could be the key to understanding human subjects' motives for participation, and to creating space for studies of empirical ethics.

Producing routine malaria data: an exploration of the micro-practices and processes shaping routine malaria data quality in frontline health facilities in Kenya.

BACKGROUND: Routine health information systems can provide near real-time data for malaria programme management, monitoring and evaluation, and surveillance. There are widespread concerns about the quality of the malaria data generated through routine information systems in many low-income countries. However, there has been little careful examination of micro-level practices of data collection which are central to the production of routine malaria data. METHODS: Drawing on fieldwork conducted in two malaria endemic sub-counties in Kenya, this study examined the processes and practices that shape routine malaria data generation at frontline health facilities. The study employed ethnographic methods-including observations, records review, and interviews-over 18-months in four frontline health facilities and two sub-county health records offices. Data were analysed using a thematic analysis approach. RESULTS: Malaria data generation was influenced by a range of factors including human resource shortages, tool design, and stock-out of data collection tools. Most of the challenges encountered by health workers in routine malaria data generation had their roots in wider system issues and at the national level where the framing of indicators and development of data collection tools takes place. In response to these challenges, health workers adopted various coping mechanisms such as informal task shifting and use of improvised tools. While these initiatives sustained the data collection process, they also had considerable implications for the data recorded and led to discrepancies in data that were recorded in primary registers. These discrepancies were concealed in aggregated monthly reports that were subsequently entered into the District Health Information Software 2. CONCLUSION: Challenges to routine malaria data generation at frontline health facilities are not malaria or health information systems specific; they reflect wider health system weaknesses. Any interventions seeking to improve routine malaria data generation must look beyond just malaria or health information system initiatives and include consideration of the broader contextual factors that shape malaria data generation.

The masking and making of fieldworkers and data in postcolonial Global Health research contexts.

This paper centres on the roles and contributions of fieldworkers-local data-collectors in Global Health research in postcolonial contexts. It is informed by two separate ethnographies, conducted in two different East African biomedical research institutions. It discusses how common characterisations of fieldworkers as 'low-skilled' and 'local' make them attractive to research institutions in two important ways - as community-embedded data-collectors thus facilitating community participation and as being unlikely to fabricate data because they lack the skills to avoid detection. This paper questions these assumptions. It draws on Daston's idea of the 'scientific persona' and Fanon's concepts of mask-making to explore how fieldworkers construct identities and data within their liminal roles. Fieldworkers create particular pseudo-personae or masks for getting and staying employed. They dumb-down CVs and emphasise their similarities with community members in ways which are partially 'real' but also 'fake'. These constructed identities provide fieldworkers with a persona that allows them to fabricate or modify data without raising suspicions. They frequently engage in practices known as 'genuine fake' data fabrication which is data perceived as factually correct and verifiable yet methodologically incorrect, hence it is real and fake in varying degrees. We understand the 'pseudo' as the blurry space between real and fake where fieldworkers construct their identities and data. Given the seemingly laudable aims of Global Health, we argue that fieldworkers' masking and making up data signal the need for greater attention by those designing its research, to better understand and address why and how these practices unfold.

"Those who died are the ones that are cured". Walking the political tightrope of Nodding Syndrome in northern Uganda: Emerging challenges for research and policy.

BACKGROUND: Nodding Syndrome was first reported from Tanzania in the 1960s but appeared as an epidemic in Northern Uganda in the 1990s during the LRA civil war. It is characterized by repetitive head nodding, often followed by other types of seizures, developmental retardation and growth faltering with onset occurring in children aged 5-15 years. More than 50 years after the first reports, the aetiology remains unknown and there is still no cure. The recent hypothesis that Nodding Syndrome is caused by onchocerciasis also increases the relevance of onchocerciasis control. Northern Uganda, with its unique socio-political history, adds challenges to the prevention and treatment for Nodding Syndrome. This article aims to show how and why Nodding Syndrome has been politicised in Uganda; how this politicisation has affected health interventions including research and dissemination; and, the possible implications this can have for disease prevention and treatment. METHODOLOGY: Ethnographic research methods were used triangulating in-depth interviews, focus group discussions, informal conversations and participant observation, for an understanding of the various stakeholders' perceptions of Nodding Syndrome and how these perceptions impact future interventions for prevention, treatment and disease control. PRINCIPAL FINDINGS: Distrust towards the government was a sentiment that had developed in Northern Uganda over several decades of war and was particularly linked to the political control and ethnic divisions between the north and south. This coincided with the sudden appearance of Nodding Syndrome, an unknown epidemic disease of which the cause could not be clearly identified and optimal treatment had not clearly been established. Additionally, the dissemination of the inconclusive results of research conducted in the area lacked sufficient community involvement which further fueled this political distrust. Disease perceptions revolved around rumours that the entire Acholi ethnic group of the north would be annihilated, or that international researchers were making money by stealing study samples. This discouraged some community members from participating in research or from accepting the mass drug administration of ivermectin for prevention and treatment of onchocerciasis. Such rumour and distrust led to suspicions concerning the integrity of the disseminated results, which may negatively impact future disease management and control interventions. CONCLUSIONS AND RECOMMENDATIONS: Trust must be built up gradually through transparency and by de-politicising interventions. This can be done by engaging the community at regular intervals during research and data collection and the dissemination of results in addition to involvement during service delivery for prevention and treatment. Maintaining a regular feedback loop with the community will help control rumours, build trust, and improve the preparations for adequate dissemination.

A Critical Enquiry into Variability of Insecticidal Net Use in Cambodia: Implications for Assessing Appropriateness of Malaria Elimination Interventions.

Distributing long-lasting insecticidal nets (LLINs) to individuals living in malaria-endemic regions is a cornerstone of global malaria control. National malaria control programs aim to achieve "universal coverage" of at-risk populations to reach LLINs' full potential to reduce malaria, progress of which is then measured by indicators constructed from standardized questionnaires. Through an exploration of variability in LLIN use in Cambodia, we argue that indicators of universal coverage of LLINs are not sufficiently commensurate with the realities they are intended to measure, limiting the suitability of the data to serve program and policy purposes in a malaria elimination era. Reflecting on the various sources of variability in LLIN use, we apply and extend the concept of "appropriateness" as a third prong to the widely used "efficacy" and "effectiveness" criteria for evaluating LLINs as a tool for malaria prevention. Describing first the different dimensions of the intervention and the sociocultural context separately, we will further show how the variability underlying both is affected and induced by inappropriate aspects of the intervention and the measurements of its impact. We consider the gap between "net use" and the numerical representations of such local net use justifies further exploration of potential strategies to improve LLIN use in subgroups where persisting malaria transmission clusters.

Patients' and healthcare providers' perceptions and practices regarding hypertension, pharmacy-based care, and mHealth in Lagos, Nigeria: a mixed methods study.

BACKGROUND: In sub-Saharan Africa, cardiovascular disease is becoming a leading cause of death, with high blood pressure as number one risk factor. In Nigeria, access and adherence to hypertension care are poor. A pharmacy-based hypertension care model with remote monitoring by cardiologists through mHealth was piloted in Lagos to increase accessibility to quality care for hypertensive patients. OBJECTIVES: To describe patients' and healthcare providers' perceptions and practices regarding hypertension, pharmacy-based care, and mHealth and explore how this information may improve innovative hypertension service delivery. METHODS: This study consisted of observations of patient-pharmacy staff interactions and hypertension care provided, four focus group discussions and in-depth interviews with 30 hypertensive patients, nine community pharmacists, and six cardiologists, and structured interviews with 328 patients. RESULTS: Most patients were knowledgeable about biomedical causes and treatment of hypertension, but often ignorant about the silent character of hypertension. Reasons mentioned for not adhering to treatment were side effects, financial constraints, lack of health insurance, and cultural or religious reasons. Pharmacists additionally mentioned competition with informal, cheaper healthcare providers. Patients highly favored pharmacy-based care, because of the pharmacist-patient relationship, accessibility, small-scale, and a pharmacy's registration at an association. The majority of respondents were positive towards mHealth. CONCLUSION: Facilitating factors for innovative pharmacy-based hypertension care were: patients' biomedical perceptions, pharmacies' strong position in the community, and respondents' positive attitude towards mHealth. We recommend health education and strengthening pharmacists' role to address barriers, such as misperceptions that hypertension always is symptomatic, treatment nonadherence, and unfamiliarity with mHealth. Future collaboration with insurance providers or other financing mechanisms may help diminish patients' financial barriers to appropriate hypertension treatment.

Pharmacy-based hypertension care employing mHealth in Lagos, Nigeria - a mixed methods feasibility study.

BACKGROUND: Access to quality hypertension care is often poor in sub-Saharan Africa. Some community pharmacies offer hypertension monitoring services, with and without involvement of medical doctors. To directly connect pharmacy staff and cardiologists a care model including a mobile application (mHealth) for remote patient monitoring was implemented and pilot tested in Lagos, Nigeria. Pharmacists provided blood pressure measurements and counselling. Cardiologists enrolled patients in the pilot program and remotely monitored them, for which patients paid a monthly fee. We evaluated the feasibility of this care model at five private community pharmacies. Outcome measures were retention in care, blood pressure change, quality of care, and patients' and healthcare providers' satisfaction with the care model. METHODS: Patients participated in the care model's pilot at one of the five pharmacies for approximately 6-8 months from February 2016. We conducted structured patient interviews and blood pressure measurements at pilot entry and exit, and used exports of the mHealth-application, in-depth interviews and focus group discussions with patients, pharmacists and cardiologists. RESULTS: Of 336 enrolled patients, 236 (72%) were interviewed at pilot entry and exit. According to the mHealth data 71% returned to the pharmacy after enrollment, with 3.3 months (IQR: 2.2-5.4) median duration of activity in the mHealth-application. Patients self-reported more visits than recorded in the mHealth data. Pharmacists mentioned use of paper records, understaffing, the application not being user-friendly, and patients' unwillingness to pay as reasons for underreporting. Mean systolic blood pressure decreased 9.9 mmHg (SD: 18). Blood pressure on target increased from 24 to 56% and an additional 10% had an improved blood pressure at endline, however this was not associated with duration of mHealth activity. Patients were satisfied because of accessibility, attention, adherence and information provision. CONCLUSION: Patients, pharmacists and cardiologists adopted the care model, albeit with gaps in mHealth data. Most patients were satisfied, and their mean blood pressure significantly reduced. Usage of the mHealth application, pharmacy incentives, and a modified financing model are opportunities for improvement. In addition, costs of implementation and availability of involved healthcare providers need to be investigated before such a care model can be further implemented.

Tuberculosis patients and resilience: A visual ethnographic health study in Khayelitsha, Cape Town.

Khayelitsha, one of the biggest and poorest townships in South Africa, has a well-resourced tuberculosis (TB) programme with an interdisciplinary approach addressing the medical, social, and economic forces impacting TB care. Nevertheless, the area remains burdened with one of the highest TB rates in the world. Using a resilience-based approach, we conducted a critical ethnographic study to develop deeper insights into the complexities of patients' experiences with TB and care. Between October 2014 and March 2015, we approached 30 TB patients, 10 health-care workers, 10 pastors, and 10 traditional healers, using participant observation, in-depth interviews, and focus group discussions. In addition, seven key informants were filmed on a daily basis by the lead researcher. The work reported here (both text and short videos) illustrates the various manifestations of resilience that patients demonstrated and how these impacted on decisions involving treatment seeking and adherence. We have synthesized the data into the following inter-related themes: TB aetiologies and treatment; the embodied experience of TB treatment; alcohol consumption; financial constraints; and support and stigma. The findings from this research highlight patients' strategies for adapting to adversities, such as pausing TB treatment when lacking food to avoid becoming psychotic, consuming alcohol to better cope, obtaining social grants, and avoiding stigmatizing attitudes. Some manifestations of resilience may interact and, inadvertently, undermine TB patients' health. Other aspects of resilience, such as strong community ties, elicited long-term health benefits. TB programs would benefit from a resilience-building approach that builds on pre-existing strengths and vulnerabilities of TB patients and their communities. With the use of short videos, we provided patients with an alternative path for expressing their experiences, which we hope will support synergies between patients, researchers, and policy-makers for improved TB programmes.

"Every day they keep adding new tools but they don't take any away": Producing indicators for intermittent preventive treatment for malaria in pregnancy (IPTp) from routine data in Kenya.

BACKGROUND: Intermittent preventive treatment for malaria in pregnancy (IPTp) is part of a multi-pronged strategy aimed at preventing malaria in pregnancy in areas of moderate to high transmission in sub-Saharan Africa. Despite being formally adopted as a malaria prevention policy over a decade ago, IPTp coverage has remained low. Recent demands for action have incorporated calls to strengthen IPTp monitoring and evaluation systems, including the use of routine data, to measure coverage, track implementation and identify roadblocks to improving uptake. Concerns about the quality of malaria indicators reported through routine information systems are well recognized, but there are few data on the realities of IPTp recording practices in frontline facilities or their entry into District Health Information Software (DHIS2). METHODS: Drawing on fieldwork conducted in two malaria endemic sub-counties in Kenya, we explore how local adaptations and innovations employed by health workers and sub-country managers to cope with a range of health system constraints, shape recording practices and in turn, the measurement of IPTp. Data were collected through observations, interviews, and document reviews. Data analysis and interpretation was guided by thematic analysis approach. RESULTS: Measurement of IPTp was undermined by health system constraints such as stock-out of drugs and human resource shortages. Coping strategies adopted by health workers to address these challenges ensured continuity in service delivery and IPTp data generation but had variable consequences on IPTp data quality. Unclear recording and reporting instructions also led to lack of standardization in IPTp data generation. The use of redundant tools created significant data burdens which undermined service delivery in general. CONCLUSIONS: There is need to integrate monthly reporting forms so as to remove redundancies which exacerbates workload for health workers and disrupts service delivery. Similarly, data collection instructions in registers and reporting forms need to be clarified to standardize IPTp data generation across health facilities. There is also need to address broader contextual factors such as stock-out of commodities and human resource shortages which undermine IPTp data generation process.

Community sensitization and decision-making for trial participation: A mixed-methods study from The Gambia.

BACKGROUND: Ensuring individual free and informed decision-making for research participation is challenging. It is thought that preliminarily informing communities through 'community sensitization' procedures may improve individual decision-making. This study set out to assess the relevance of community sensitization for individual decision-making in research participation in rural Gambia. METHODS: This anthropological mixed-methods study triangulated qualitative methods and quantitative survey methods in the context of an observational study and a clinical trial on malaria carried out by the Medical Research Council Unit Gambia. RESULTS/DISCUSSION: Although 38.7% of the respondents were present during sensitization sessions, 91.1% of the respondents were inclined to participate in the trial when surveyed after the sensitization and prior to the informed consent process. This difference can be explained by the informal transmission of information within the community after the community sensitization, expectations such as the benefits of participation based on previous research experiences, and the positive reputation of the research institute. Commonly mentioned barriers to participation were blood sampling and the potential disapproval of the household head. CONCLUSION: Community sensitization is effective in providing first-hand, reliable information to communities as the information is cascaded to those who could not attend the sessions. However, further research is needed to assess how the informal spread of information further shapes people's expectations, how the process engages with existing social relations and hierarchies (e.g. local political power structures; permissions of heads of households) and how this influences or changes individual consent.

Tuberculosis patients' pre-hospital delay and non-compliance with a longstanding DOT programme: a mixed methods study in urban Zambia.

BACKGROUND: Tuberculosis (TB) remains a major health problem in Zambia, despite considerable efforts to control and prevent it. With this study, we aim to understand how perceptions and cultural, social, economic, and organisational factors influence TB patients' pre-hospital delay and non-compliance with care provided by the National Tuberculosis Programme (NTP). METHODS: A mixed methods study was conducted with 300 TB patients recruited at Kanyama clinic for structured interviews. Thirty were followed-up for multiple in-depth interviews. Six focus group discussions were organised and participant observation was conducted. Ten biomedical care providers, 10 traditional healers, and 10 faith healers were interviewed. Factors associated with non-compliance (disruption of treatment > one week) were assessed by applying logistic regression analyses; qualitative analysis was used to additionally assess factors influencing pre-hospital delay and for triangulation of study findings. RESULTS: TB treatment non-compliance was low (10 %), no association of outcome with cultural or socio-economic factors was found. Only patients' time constraints and long distance to the clinic indicated a possible association with a higher risk of non-compliance (OR 0.52; 95 % CI 0.25, 1.10, p = 0.086). Qualitative data showed that most TB patients combined understandings of biomedical and traditional TB knowledge, used herbal, traditional and/or faith healing, suffered from stigmatizing attitudes, experienced poverty and food shortages, and faced several organisational obstacles while being on treatment. This led in some cases to pre-hospital delay or treatment non-compliance. CONCLUSIONS: Mixed methods analysis demonstrated the importance of in-depth information ascertained by qualitative approaches to understand how cultural, socio-economic and organisational factors are influencing patients' pre-hospital delay and treatment compliance. To strengthen the Zambian NTP, combating stigma is of utmost priority coupled with programmes addressing poverty. Organisational barriers and co-operation between (private) clinics and traditional/faith healers should be considered.

Morals, morale and motivations in data fabrication: Medical research fieldworkers views and practices in two Sub-Saharan African contexts.

Data fabrication, incorrect collection strategies and poor data management, are considered detrimental to high-quality scientific research. While poor data management have been occasionally excused, fabrication constitutes a cardinal sin - scientific misconduct. Scholarly examinations of fabrication usually seek to expose and capture its prevalence and, less frequently, its consequences and causes. Most accounts centre on high-income countries, individual senior researchers and scientists who are portrayed as irrational, immoral or deceptive. We argue that such accounts contain limitations in overlooking data collected in 'the field', in low-income countries, by junior researchers and non-scientists. Furthermore, the processes and motivations for fabrication and subversive practices are under-examined. Drawing on two separate ethnographies, conducted in 2004-2009 in medical research projects in sub-Saharan Africa, this paper investigates fabrication among fieldworkers using data from observations and informal conversations, 68 interviews and 7 Focus Group Discussions involving diverse stakeholders. Based on an interpretative approach, we examined fieldworkers' accounts that fabrications were motivated by irreconcilable moral concerns, faltering morale resulting from poor management, and inadequate institutional support. To fieldworkers, data fabrication constituted a 'tool' for managing their quotidian challenges. Fabrications ranged from active to passive acts, to subvert, resist and readdress tensions deriving from employment inequalities and challenging socio-economic conditions. We show that geographical and hierarchical distance between high-ranking research actors and fieldworkers in contemporary configurations of international medical research can compartmentalise, and ultimately undermine, the relationships necessary to produce high-quality data. In focusing on fieldworkers, we argue for the inclusion of wide-ranging perspectives in examinations of data fabrication.

Factors Associated with Non-Participation and Non-Adherence in Directly Observed Mass Drug Administration for Malaria in The Gambia.

INTRODUCTION: The potential benefits of Mass Drug Administration (MDA) for malaria elimination are being considered in several malaria endemic countries where a decline in malaria transmission has been reported. For this strategy to work, it is important that a large proportion of the target population participates, requiring an in-depth understanding of factors that may affect participation and adherence to MDA programs. METHODOLOGY: This social science study was ancillary to a one-round directly observed MDA campaign with dihydroartemisinin-piperaquine, carried out in 12 villages in rural Gambia between June and August 2014. The social science study employed a mixed-methods approach combining qualitative methods (participant observation and in-depth interviewing) and quantitative methods (structured follow-up interviews among non-participating and non-adhering community members). RESULTS: Of 3942 people registered in the study villages, 67.9% adhered to the three consecutive daily doses. For the remaining villagers, 12.6% did not attend the screening, 3.5% was not eligible and 16% did not adhere to the treatment schedule. The main barriers for non-participation and adherence were long and short-term mobility of individuals and specific subgroups, perceived adverse drug reactions and rumors, inconveniences related to the logistics of MDA (e.g. waiting times) and the perceived lack of information about MDA. CONCLUSION: While, there was no fundamental resistance from the target communities, adherence was 67.9%. This shows the necessity of understanding local perceptions and barriers to increase its effectiveness. Moreover, certain of the constraining factors were socio-spatially clustered which might prove problematic since focal areas of residual malaria transmission may remain allowing malaria to spread to adjacent areas where transmission had been temporarily interrupted.