‘Ni kubahatisha tu!’-‘It’s just a game of chance!’ Adaptation and resignation to perceived risks in rural Tanzania

Many HIV/AIDS prevention interventions have been shown to increase awareness and knowledge but few have been shown to impact on behaviour. This ethnographic study was designed to provide a holistic account of risk perception in order to inform our understandings of how HIV risk is perceived. Through qualitative methods it is both a deductive testing of the risk theories of Douglas and Giddens and an inductive, grounded investigation to identify which risks are prioritised and the discourses which influence risk perceptions in one rural and one neighbouring peri-urban site in north-western Tanzania. Risk perception is framed by multiple, sometimes contradictory, discourses which shape individual perceptions of risk at particular moments. These are defined as a series of ‘risk moments’, each of which is context specific and contingent on dynamic social conditions. Living in a society in flux, where multiple forms of tradition co-exist with modern ideals, rural dwellers’ experiences of past misfortune are often interpreted to inform a future-oriented risk perception. The role of chance and fatalism are dominant public and private discourses, but ones which co-exist with collective and individual capabilities to control risk through reliance on social capital and social networks to create maendeleo(development), despite restricted lifestyle alternatives and vulnerable socio-economic conditions. Responses to some risks are invariable and predictable, such as routinised actions like hand washing. Responses to other risks, such as crop failure, vary according to predictable patterns. These patterns include social position and biography, defined through gender, socio-economic status, partner type and exposure to alternative lifestyle choices through migration. This is one of several ways in which risk perceptions are dominated by social factors. Others are the presumed social causes of many risks, and the social benefits or costs of risk aversion. Conflicting social risks, such as exposure to jealousy and being too trusting, are subject to cautious strategies to manage ambiguous social relations. Within this dynamic social world, characterised by contradictions between adaptation and resignation, risk priorities are constantly re-assessed and management strategies renegotiated as individuals encounter novel circumstances. The results from this research have confirmed this contingent nature of risk perception and contributed to our knowledge of people’s approaches towards health risks and understandings of prevention which may be useful in the design of appropriate behaviour change campaigns

“Not just dogs, but rabid dogs”: tensions and conflicts amongst research volunteers in Malawi

Building trust between researchers and communities involved in research is one goal of community engagement. This paper examines the implications of community engagement for trust within communities, including trust among community volunteers who assist with research and between these volunteers and other community members. We describe the experiences of two groups of community volunteers recruited as part of an HIV and TB intervention trial in Malawi: cluster representatives, recruited both to act as key informants for TB suspects and mortality reporting and to identify and report community concerns, and community counsellors, recruited to provide semi-supervised HIV self-testing. We examine tensions experienced due to playing multiple roles, and the implications of volunteer responsibilities for short- and long-term community relationships. Data was collected through a workshop, in-depth interviews and focus group discussions with volunteers and community members. While the volunteer system initially enhanced trust among volunteers and with the community, relationships deteriorated when cluster representatives assumed an additional supervisory role part-way through the trial. Combined with challenging recruitment targets and unequal power relations between volunteers, this new role damaged trust, with implications for volunteer well-being and social relationships. These experiences suggest researchers should consider potential social implications when designing community engagement systems

Developing a web-based version of an exercise-based rehabilitation program for people with chronic knee and hip pain : a mixed methods study

BACKGROUND: Osteoarthritis is highly prevalent and has enormous personal and socioeconomic impact. Enabling Self-management and Coping with Arthritic Pain through Exercise (ESCAPE-pain) is an integrated rehabilitation program that helps people understand how exercise can improve physical and psychosocial well-being. Unfortunately, its availability is limited. A Web-based version of the program could increase access for more people. Many Web-based resources are developed without end-user input and result in over-complex, unwanted, ineffective products with limited uptake. OBJECTIVE: The objective of this study was to codesign a Web-based version of ESCAPE-pain that people with chronic joint pain find engaging, informative, and useful. METHODS: To establish older persons' Internet use we conducted a postal survey of 200 people. To establish their opinions, likes or dislikes, and requirements for a Web-based version of the ESCAPE-pain program, we conducted two focus groups with 11 people who had participated in a program based on ESCAPE-pain and two with 13 people who had not. Information from the postal survey and focus groups was used to develop an online prototype website. People's opinions of the prototype website were gauged from thematic analysis of eight semistructured "think aloud" interviews. RESULTS: The survey response rate was 42% (83/200), of whom 67% (56/83) were female and mean age was 67 years. Eighty-three percent of the people had used the Internet, 69% described themselves as either very confident or confident Internet users, and 77% had looked online for health information. With regard to participating online, 34% had read a commentary or watched a video of someone else's experience of a health problem and 23% had tracked a health issue. Key qualitative themes emerged that included engagement, acceptability and usability, and structure and content of the program. CONCLUSIONS: Older people use the Internet as a source of health information but have concerns about safe use and quality of information. Users require a credible website that provides personalized information, support, monitoring, and feedback

Control, struggle, and emergent masculinities: a qualitative study of men's care-seeking determinants for chronic cough and tuberculosis symptoms in Blantyre, Malawi.

BACKGROUND: Men's healthcare-seeking delay results in higher mortality while on HIV or tuberculosis (TB) treatment, and implies contribution to ongoing community-level TB transmission before initiating treatment. We investigated masculinity's role in healthcare-seeking delay for men with TB-suggestive symptoms, with a view to developing potential interventions for men. METHODS: Data were collected during March 2011- March 2012 in three high-density suburbs in urban Blantyre. Ten focus group discussions were carried out of which eight (mixed sex = two; female only = three; male only = three) were with 74 ordinary community members, and two (both mixed sex) were with 20 health workers. Individual interviews were done with 20 TB patients (female =14) and 20 un-investigated chronic coughers (female = eight), and a three-day workshop was held with 27 health stakeholder representatives. RESULTS: An expectation to provide for and lead their families, and to control various aspects of their lives while facing limited employment opportunities and small incomes leaves men feeling inadequate, devoid of control, and anxious about being marginalised as men. Men were fearful about being looked at as less than men, and about their wives engaging in extramarital sex without ability to detect or monitor them. Control was a key defining feature of adequate manhood, and efforts to achieve it also led men into side-lining their health. Articulate and consistent concepts of men's bodily strength or appropriate illness responses were absent from the accounts. CONCLUSIONS: Facilitating men to seek care early is an urgent public health imperative, given the contexts of high HIV/AIDS prevalence but increasingly available treatment, and the role of care-seeking delay in TB transmission. Men's struggles trying to achieve ideal images seem to influence their engagement with their health. Ambiguous views regarding some key masculinity representations and the embrace of less harmful masculinities raise questions about some common assumptions that guide work with men. Apparent 'emergent masculinities' might be a useful platform from which to support the transformation of harmful masculinity. Finally, the complex manifestations of masculinity indicate the need for interventions targeting men in health and TB control to assume supportive, multidimensional and long-term outlooks

Addressing Intimate Partner Violence Using Gender-Transformative Approaches at a Community Level in Rural Tanzania: The UZIKWASA program.

Intimate partner violence (IPV) is recognized as an important public health and social problem, with far-reaching consequences for women's physical and emotional health and social well-being, yet little is known about how behavior change campaigns (BCCs) affect this type of behavior and other related abuses in Tanzania and in other sub-Saharan African countries. UZIKWASA is a civil society organization based in Pangani District in coastal Tanzania and since 2009 has conducted BCCs focused on promoting gender justice and effective leadership. As with other complex programs there is a question about how such approaches affect norms and practice in relation to violence against women and girls. Drawing on longitudinal research utilizing more than 1000 community diary entries (hearsay ethnographies) and qualitative methods using 20 in-depth interviews and 16 focus group discussions with women and men, and adolescent girls and boys, this article explores the ways in which UZIKWASA's program effects change. The findings reveal personal and community narratives about gender-based and IPV as forms of retributive justice and assertion of authority by men. Drawing on gender performance as an explanation for violence, the research revealed changes in norms and practice in relation to violence against women and girls. Thus, we argue that UZIKWASA is gender-transformative by addressing gender norms and the critical awareness among leaders and the community of the social construction and reconstruction of gender that creates the context for real impact on changes in behavior

A chronological discourse analysis of ancillary care provision in guidance documents for research conduct in the global south.

INTRODUCTION: Numerous guidelines and policies for ethical research practice have evolved over time, how this translates to global health practice in resource-constrained settings is unclear. The purpose of this paper is to describe how the concept of ancillary care has evolved over time and how it is included in the ethics guidelines and policy documents that guide the conduct of research in the global south with both an international focus and providing a specific example of Malawi, where the first author lives and works, as a case study. METHODS: Discourse analysis was conducted on 34 international ethics guidelines and policy documents. Documents were purposively selected if they contained a set of key terms that reflect the concept of ancillary care. Following a process of inductive discourse analysis, five key interrelated text phrases relating to ancillary care were extracted from the documents. The evolution of these phrases over time was explored as they represented the development of the concept of ancillary care as a component of ethical health research guidance and practice. RESULTS: We found key interrelated phrases that represent discourses regarding the evolution of ancillary care including participant protection; provide care as appropriate; supererogation; patient needs prevail over science; and ancillary care as an obligation. Arguments for the provision of ancillary care were characterised by safeguarding the safety, health rights and well-being of study participants. However, despite the evolution of discourse around ethical obligations to provide ancillary care, this is rarely made explicit within guidance documents, leaving interpretive space for differential application in practice. CONCLUSION: While there have been major changes to the ethics guidance that reflect significant evolution in the ethical conduct of research, the specific vocabulary or language used to explain the ethics of researchers' ancillary care obligations to the health needs of their research participants, lacks clarity and consistency. As a result, the concept of ancillary care continues to be under-represented in local ethical guidelines and regulations, with no clear directives for country-level research ethics committees to apply in regulating ancillary care responsibilities

What do we know about ancillary care practices in East and Southern Africa? A systematic review and meta-synthesis

Background: Despite growing calls for the provision of ancillary care to study participants during medical research, there remains a noticeable gap in ethical guidelines for medical researchers in resource-constrained settings (RCS). We reviewed recent studies to determine the extent to which ancillary care is provided in East and Southern Africa and to examine the ethical justifications researchers provide to support their views on ancillary care obligations. Methods: A systematic search for qualitative and mixed methods studies on ancillary care was conducted across MEDLINE, Embase, African Wide Information, PubMed, CINAHL Plus, and Scopus. The National Institutes of Health (NIH) Department of Bioethics and H3 Africa websites and Google Scholar were further searched. Studies conducted in East and Southern Africa between 2004 and 2020, as well as those that reported on ancillary care provided to study participants were included. All studies included in this review were evaluated for methodological quality as well as bias risk. NVivo version 12 was used for thematic analysis. Results: Overall, 4,710 articles were identified by the initial search. After the data extraction and quality assessment, 24 articles were included. Key areas presented include ancillary care approaches and the themes of researcher motivation for providing ancillary care and expectations of participants in medical research. The review shows that while some international researchers do provide ancillary care to their study participants, approaches are not standardised without consistent guidelines for ethical practice for ancillary care. We found limited empirical studies in RCS that report on ancillary care, hence findings in this review are based on single studies rather than a collection of multiple studies. Conclusions: This paper emphasizes the value of establishing ethics guidelines for medical researchers in RCS who consider provision of ancillary care to their participants, and the need to account for these ethical guidelines in medical research.</ns3:p

Use of qualitative research in World Health Organisation guidelines: a document analysis

Background Guidelines depend on effect estimates, usually derived from randomised controlled trials, to inform their decisions. Qualitative research evidence may improve decisions made but where in the process and the methods to do this have not been so clearly established. We sought to describe and appraise how qualitative research has been used to inform World Heath Organization guidance since 2020. Methods We conducted a document analysis of WHO guidelines from 2020 to 2022. We purposely sampled guidelines on the topics of maternal and newborn health (MANH) and infectious diseases, as most of the qualitative synthesis to date has been conducted on these topics, likely representing the ‘best case’ scenario. We searched the in-built repository feature of the WHO website and used standardised search terms to identify qualitative reporting. Using deductive frameworks, we described how qualitative evidence was used to inform guidelines and appraised the standards of this use. Results Of the 29 guidelines, over half used qualitative research to help guide decisions (18/29). A total of 8 of these used qualitative research to inform the guideline scope, all 18 to inform recommendations, and 1 to inform implementation considerations. All guidelines drew on qualitative evidence syntheses (QES), and five further supplemented this with primary qualitative research. Qualitative findings reported in guidelines were typically descriptive, identifying people’s perception of the benefits and harms of interventions or logistical barriers and facilitators to programme success. No guideline provided transparent reporting of how qualitative research was interpreted and weighed used alongside other evidence when informing decisions, and only one guideline reported the inclusion of qualitative methods experts on the panel. Only a few guidelines contextualised their recommendations by indicating which populations and settings qualitative findings could be applied. Conclusions Qualitative research frequently informed WHO guideline decisions particularly in the field of MANH. However, the process often lacked transparency. We identified unmet potential in informing implementation considerations and contextualisation of the recommendations. Use in these areas needs further methods development

Resource availability and barriers to delivering quality care for newborns in hospitals in the southern region of Malawi: A multisite observational study

Facility-based births have increased in low and middle-income countries, but babies still die due to poor care. Improving care leads to better newborn outcomes. However, data are lacking on how well facilities are prepared to support. We assessed the availability of human and material resources and barriers to delivering quality care for newborns and barriers to delivering quality care for newborns. We adapted the WHO Service Availability and Readiness Assessment tool to evaluate the resources for delivery and newborn care and barriers to delivering care, in a survey of seven hospitals in southern Malawi between January and February 2020. Data entered into a Microsoft Access database was exported to IBM SPSS 26 and Microsoft Excel for analysis. All hospitals had nursery wards with at least one staff available 24 hours, a clinical officer trained in paediatrics, at least one ambulance, intravenous cannulae, foetal scopes, weighing scales, aminophylline tablets and some basic laboratory tests. However, resources lacking some or all of the time included anticonvulsants, antibiotics, vitamin K, 50% dextrose, oxytocin, basic supplies such as cord clamps and nasal gastric tubes, laboratory tests such as bilirubin and blood culture and newborn clinical management guidelines. Staff reported that the main barriers to providing high-quality care were erratic supplies of power and water, inadequacies in the number of beds/cots, ambulances, drugs and supplies, essential laboratory tests, absence of newborn clinical protocols, and inadequate staff, including paediatric specialists, in-service training, and support from the management team. In hospitals in Malawi, quality care for deliveries and newborns was compromised by inadequacies in many human and material resources. Addressing these deficiencies would be expected to lead to better newborn outcomes