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Decentralised and evidence-informed health systems rely on managers and practitioners at all levels having sufficient 'decision space' to make timely locally informed and relevant decisions. Our objectives were to understand decision spaces in terms of constraints and enablers and outline opportunities through which to expand them in an understudied rural context in South Africa. This study examined decision spaces within Mpumalanga Province, using data and insights generated through a participatory action research process with local communities and health system stakeholders since 2015, which was combined with published documents and research team participant observation to produce findings on three core domains at three levels of the health system. Although capacity for decision making exists in the system, accessing it is frequently made difficult due to a number of intervening factors. While lines of authority are generally well-defined, personal networks take on an important dimension in how stakeholders can act. This is expressed through a range of informal coping strategies built on local relationships. There are constraints in terms of limited formal external accountability to communities, and internal accountability which is weak in places for individuals and focused more on meeting performance targets set at higher levels and less on enabling effective local leadership. More generally, political and personal factors are clearly identified at higher levels of the system, whereas at sub-district and facility levels, the dominant theme was constrained capacity. By examining the balance of authority, accountability and capacity across multiple levels of the provincial health system, we are able to identify emergent decision space and areas for enlargement. Creating spaces to support more constructive relationships and dialogue across system levels emerges as important, as well as reinforcing horizontal networks to problem solve, and developing the capacity of link-agents such as community health workers to increase community accountability.

Background The uptake of HIV self-testing (HIVST) could address socio-structural barriers that prevent South African youth from utilizing the testing resources available in their communities. However, to facilitate this, we must tailor components of the HIVST kit and process to ensure that we reach and encourage youth to test. The purpose of this study to elucidate concerns and issues regarding HIVST rollout among South African youth. Methods This study was conducted in two phases: 1) focus group discussions with rural, South African youth aged 18–24 and 2) direct observations of participants completing with an oral HIVST kit and/or a blood based HIVST kit. In phase 2a participants were invited to try both an oral and blood-based HIVST kit. In phase 2b, participants selected the HIVST kit of their choice. Results We enrolled 35 unique participants in phase 1, 20 participants in phase 2a, and 40 participants in phase 2b. While the focus group discussions highlighted hypothetical HIVST use only, participants appreciated the privacy that the HIVST could afford them. However, they expressed concerns about whether HIVST could be trusted due to false positives and negatives, as well as whether a person would be able to emotionally handle the results if they tested alone. They suggested that the kits be used alongside someone who could provide support. In phases 2a and 2b, participants were overwhelmingly positive about both kits regarding ease of use and whether their results could be trusted. The participants, however, experienced more challenges with the blood-based versus oral test. When given the choice in phase 2b, most participants (80%) chose the oral HIVST over the blood-based HIVST. Conclusions During the focus group discussions, participants raised concerns about the validity of HIVST, lack of emotional support when testing alone, and the cost of HIVST kits, all of which could be addressed through current testing campaigns. Most of those who actually tested had positive experiences with HIVST and would recommend it to their friends. When offered a choice, most preferred the oral test. Trial registration NCT03162965 , registered 19th May 2017.

In South Africa, community participation has been embraced through the development of progressive policies to address past inequities. However, limited information is available to understand community involvement in priority setting, planning and decision-making in the development and implementation of public services. This narrative review aims to provide evidence on forms, extents, contexts and dynamics of community participation in primary health care (PHC) and water governance in South Africa and draw cross-cutting lessons. This paper focuses on health and water governance structures, such as health committees, Catchment Management Agencies (CMA), Water User Associations (WUAs), Irrigation Boards (IBs) and Community Management Forums (CMFs). Articles were sourced from Medline (Ovid), EMBASE, Google Scholar, Web of Science, WHO Global Health Library, Global Health and Science Citation Index between 1994 and 2020 reporting on community participation in health and water governance in South Africa. Databases were searched using key terms to identify relevant research articles and grey literature. Twenty-one articles were included and analysed thematically. There is limited evidence on how health committees are functioning in all provinces in South Africa. Existing evidence shows that health committees are not functioning effectively due to lack of clarity on roles, autonomy, power, support, and capacity. There was slow progress in establishment of water governance structures, although these are autonomous and have mechanisms for democratic control, unlike health committees. Participation in CMAs/WUAs/IBs/CMFs is also not effective due to manipulation of spaces by elites, lack of capacity of previously disadvantaged individuals, inadequate incentives, and low commitment to the process by stakeholders. Power and authority in decision-making, resources and accountability are key for effective community participation of marginalized people. Practical guidance is urgently required on how mandated participatory governance structures can be sustained and linked to wider governance systems to improve service delivery.

Interventions to improve HIV service uptake are increasingly addressing inequitable and restrictive gender norms. Yet comparatively little is known about which gender norms are most salient for HIV testing and treatment and how changing these specific norms translates into HIV service uptake. To explore these questions, we implemented a qualitative study during a community mobilization trial targeting social barriers to HIV service uptake in South Africa. We conducted 55 in-depth interviews in 2018, during the final months of a three-year intervention in rural Mpumalanga province. Participants included 25 intervention community members (48% women) and 30 intervention staff/community-opinion-leaders (70% women). Data were analyzed using an inductive-deductive approach. We identified three avenues for gender norms change which, when coupled with other strategies, were described to support HIV service uptake: (1) Challenging norms around male toughness/avoidance of help-seeking, combined with information on the health and preventive benefits of early antiretroviral therapy (ART), eased men's fears of a positive diagnosis and facilitated HIV service uptake. (2) Challenging norms about men's expected control over women, combined with communication and conflict resolution skill-building, encouraged couple support around HIV service uptake. (3) Challenging norms around women being solely responsible for the family's health, combined with information about sero-discordance and why both members of the couple should be tested, encouraged men to test for HIV rather than relying on their partner's results. Facility-level barriers such as long wait times continued to prevent some men from accessing care. Despite continued facility-level barriers, we found that promoting critical reflection around several specific gender norms, coupled with information (e.g., benefits of ART) and skill-building (e.g., communication), were perceived to support men's and women's engagement in HIV services. There is a need to identify and tailor programming around specific gender norms that hinder HIV service uptake.

Despite repeated calls from international governing bodies for benefit sharing in biomedical research as a means of promoting mutual trust and reciprocity, real-world examples of benefit sharing are lacking. Here, we discuss benefit-sharing initiatives instituted as part of human genomics research projects carried out in both semi-rural and urban settings in South Africa. We explore lessons learned from applying different approaches to benefit sharing, as well as recommendations for ways to enhance success for future initiatives. Ultimately, we advocate for the adoption of flexible benefit-sharing models that take into consideration community representation and engagement, benefit management mechanisms, and long-term sustainability. The article reviews benefit-sharing efforts in South African genomics research, highlighting lessons from varied community settings and urging flexible, sustainable models that prioritize engagement, representation, and strong benefit management.

Background While community participation is an established pro-equity approach in Primary Health Care (PHC), it can take many forms, and the central category of power is under-theorised. The objectives were to (a) conduct theory-informed analysis of community power-building in PHC in a setting of structural deprivation and (b) develop practical guidance to support participation as a sustainable PHC component. Methods Stakeholders representing rural communities, government departments and non-governmental organisations engaged through a participatory action research (PAR) process in a rural sub-district in South Africa. Three reiterative cycles of evidence generation, analysis, action, and reflection were progressed. Local health concerns were raised and framed by community stakeholders, who generated new data and evidence with researchers. Dialogue was then initiated between communities and the authorities, with local action plans coproduced, implemented, and monitored. Throughout, efforts were made to shift and share power, and to adapt the process to improve practical, local relevance. We analysed participant and researcher reflections, project documents, and other project data using power-building and power-limiting frameworks. Results Co-constructing evidence among community stakeholders in safe spaces for dialogue and cooperative action-learning built collective capabilities. The authorities embraced the platform as a space to safely engage with communities and the process was taken up in the district health system. Responding to COVID-19, the process was collectively re-designed to include a training package for community health workers (CHWs) in rapid PAR. New skills and competencies, new community and facility-based alliances and explicit recognition of CHW roles, value, and contribution at higher levels of the system were reported following the adaptations. The process was subsequently scaled across the sub-district. Conclusions Community power-building in rural PHC was multidimensional, non-linear, and deeply relational. Collective mindsets and capabilities for joint action and learning were built through a pragmatic, cooperative, adaptive process, creating spaces where people could produce and use evidence to make decisions. Impacts were seen in demand for implementation outside the study setting. We offer a practice framework to expand community power in PHC: (1) prioritising community capability-building, (2) navigating social and institutional contexts, and (3) developing and sustaining authentic learning spaces.

BackgroundSouth Africa is a semiarid country where 5 million people, mainly in rural areas, lack access to water. Despite legislative and policy commitments to the right to water, cooperative governance and public participation, many authorities lack the means to engage with and respond to community needs. The objectives were to develop local knowledge on health priorities in a rural province as part of a programme developing community evidence for policy and planning.MethodsWe engaged 24 participants across three villages in the Agincourt Health and Socio-Demographic Surveillance System and codesigned the study. This paper reports on lack of clean, safe water, which was nominated in one village (n=8 participants) and in which women of reproductive age were nominated as a group whose voices are excluded from attention to the issue. On this basis, additional participants were recruited (n=8). We then held a series of consensus-building workshops to develop accounts of the problem and actions to address it using Photovoice to document lived realities. Thematic analysis of narrative and visual data was performed.ResultsRepeated and prolonged periods when piped water is unavailable were reported, as was unreliable infrastructure, inadequate service delivery, empty reservoirs and poor supply exacerbated by droughts. Interconnected social, behavioural and health impacts were documented combined with lack of understanding, cooperation and trust between communities and authorities. There was unanimity among participants for taps in houses as an overarching goal and strategies to build an evidence base for planning and advocacy were developed.ConclusionIn this setting, there is willingness among community stakeholders to improve water security and there are existing community assemblies to support this. Health and Socio-Demographic Surveillance Systems provide important opportunities to routinely connect communities to resource management and service delivery. Developing learning platforms with government and non-government organisations may offer a means to enable more effective public participation in decentralised water governance.

Background Frontline managers and health service providers are constrained in many contexts from responding to community priorities due to organizational cultures focused on centrally defined outputs and targets. This paper presents an evaluation of the Verbal Autopsy with Participatory Action Research (VAPAR) programme—a collaborative learning platform embedded in the local health system in Mpumalanga, South Africa—for strengthening of rural primary healthcare (PHC) systems. The programme aims to address exclusion from access to health services by generating and acting on research evidence of practical, local relevance. Methods Drawing on existing links in the provincial and national health systems and applying rapid, participatory evaluation techniques, we evaluated the first action-learning cycle of the VAPAR programme (2017–19). We collected data in three phases: (1) 10 individual interviews with programme stakeholders, including from government departments and parastatals, nongovernmental organizations and local communities; (2) an evaluative/exploratory workshop with provincial and district Department of Health managers; and (3) feedback and discussion of findings during an interactive workshop with national child health experts. Results Individual programme stakeholders described early outcomes relating to effective research and stakeholder engagement, and organization and delivery of services, with potential further contributions to the establishment of an evidence base for local policy and planning, and improved health outcomes. These outcomes were verified with provincial managers. Provincial and national stakeholders identified the potential for VAPAR to support engagement between communities and health authorities for collective planning and implementation of services. Provincial stakeholders proposed that this could be achieved through a two-way integration, with VAPAR stakeholders participating in routine health planning and review activities and frontline health officials being involved in the VAPAR process. Findings were collated into a revised theory of change. Conclusions The VAPAR learning platform was regarded as a feasible, acceptable and relevant approach to facilitate cooperative learning and community participation in health systems. The evaluation provides support for a collaborative learning platform within routine health system processes and contributes to the limited evaluative evidence base on embedded health systems research.

Background: Alcohol and other drug (AOD) abuse is a major public health challenge disproportionately affecting marginalised communities. Involving communities in the development of responses can contribute to acceptable solutions. Objectives: To: (1) document forms, processes, and contexts of engaging communities to nominate health concerns and generate new knowledge for action; (2) further build participation in the local health system by reflecting on and adapting the process. Methods: PAR was progressed with 48 community stakeholders across three rural villages in the MRC/Wits Agincourt Health and Socio Demographic Surveillance System (HDSS) in Mpumalanga, South Africa. A series of workshops explored community-nominated topics, systematised lived experience into shared accounts and considered actions to address problems identified. Photovoice was also used to generate visual evidence. Narrative and visual data were thematically analysed, situated within practice frameworks, and learning and adaption elicited. Results: AOD abuse was identified as a topic of high priority. It was understood as an entrenched social problem with destructive effects. Biopsychosocial impacts were mapped and related to unemployment, poverty, stress, peer pressure, criminal activity, corruption, and a proliferating number of taverns. Integrated action agendas were developed focussed on demand, supply, and harm reduction underpinned by shared responsibility among community, state, and non-state actors. Community stakeholders appreciated systematising and sharing knowledge, taking active roles, developing new skills in planning and public speaking, and progressing shared accountability processes. Expectations required sensitive management, however. Conclusion: There is significant willingness and capacity among community stakeholders to work in partnership with authorities to address priority health concerns. As a process, participation can help to raise and frame issues, which may help to better inform action and encourage shared responsibility. Broader understandings of participation require reference to, and ultimately transfer of power towards, those most directly affected, developing community voice as continuous processes within social and political environments.

HIV is an inherently gendered disease in eastern and southern Africa, not only because more women than men are infected, but also because socially constructed gender norms work to increase women's HIV-infection risk. The provision of cash transfers to young women alone in such a context adds another dimension to already existing complex social relations where patriarchal values are entrenched, gender inequality is the norm, and violence against women and girls is pervasive. It raises concerns about complicating young women's relationships with their male partners or possibly even setting them up for more violence. In our attempt to understand how cash transfers influence social relations in the context of a trial among young women in South Africa, we used qualitative data collected during the trial to explore men's perceptions of the impact of cash transfers on male-female relationships, both intimate and platonic, peer relationships. Between April 2012 and August 2015, we conducted focus group discussions (n = 12) and interviews (n = 20) with the male peers and intimate partners of young women aged 13-20 years, who were participating in a phase III randomised controlled trial of CTs for HIV prevention in Mpumalanga, South Africa. A thematic content analysis approach was used to analyse the data. The codebook was developed on the basis of the topic guides, with additional codes added inductively as they emerged from the data. Intimate partners were older (range 20-32 years) and more likely to be working than the male peers. Both intimate partners and male peers were supportive of the CT trial targeting young women; younger peers however expressed some concerns that the money might diminish their power and status in relationships. HIV testing requirements associated with the trial appeared to have improved communication about sex and HIV in intimate relationships, with some women even encouraging their partners to go for an HIV test. CTs provide AGYW with a measure of autonomy and power to contribute in their gendered relationships, albeit in limited ways. However, there is potential for CTs to have a negative impact on male-female relationships if the cash received by AGYW is equal to or greater than the income earned by their male counterparts or sexual partners.