
Around 6,200 per year are born in South Africa with a significant degree of permanent deafness and many more become deaf through childhood illness. Over 95% of deaf children are born into hearing families with no prior experience of deafness. Deafness presents a major risk to the acquisition of language with poor literacy and very low educational attainment. For many families deafness also attracts unwelcome stigma, discrimination and society as a whole has low expectations of deaf people's potential despite a normal range of intelligence. The consequences for personal self actualisation, autonomous citizenship and contribution to broader society are far reaching with the majority of deaf adults struggling for employment, access to education and opportunities to lead a normal life. We will develop a series of social interventions using film and visual media to combat current and future public health burden that arises from these consequences. Our project is focused on building resilience amongst deaf youth through enhancing self esteem, supporting hearing parents to develop their repertoire of emotions based (rather than merely functional) communication and developing practical keep safe resources in a context where deaf young people are especially vulnerable violent crime and abuse. Our chosen medium to achieve these goals is community based participatory film making because the visual is a highly accessible medium for both knowledge acquisition but also knowledge production for those for whom articulation, whether in spoken, signed or written languages, may be severely delayed and because of its non-dependence on the written word. The project will work with deaf children/young people and their families to explore, produce and edit short films that demonstrate personal potential and ambition with the scope to influence wider public attitudes and act as an educational resource. In working with deaf and hearing filmmakers through workshops and community events the children will also acquire new social-relational skills, have the opportunity to restructure challenging daily experiences of being deaf into potentially inspiring futures through sharing and raising their ambitions of what is possible for them and having access to deaf adult role models through these processes. Deaf mentors and parents of deaf children will co-create a new emotions-based workshop curriculum to inspire parental confidence in communication about the non-functional aspects of life so emotional worlds and concepts open up to deaf children/young people as resources to enable them to understand their own development and read the emotional reactions of others - both vital aspects of resilience building. We will create with deaf children/young people a series of interactive films designed to explore keeping safe strategies, prevent abuse, reduce risk and provide deaf young people with a means of knowing of how seek help and support. The community context through which the potential film scenarios are explored, created, filmed, edited and responded to are also learning opportunities for those who will take part in growing their personal and social strategies to combat abuse, neglect and discrimination. All products will be made freely available in multiple languages, including South African Sign Language, through a Web Doc that will be fully update-able and accessible through a variety of low cost digital means. The deaf and hearing team working together combine internationally leading expertise in visual anthropology, deaf studies, social research with deaf people and on the ground NGOs providing family centred intervention free at the point of need, parent-led support groups, deaf film makers and supported by the public health office of Gauteng province. The project is process-evaluated by students in deaf education and Deaf studies in South Africa. The delivery of the project cements a new partnership ready for further research.
In sub-Saharan Africa, and in South Africa in particular, there are significant numbers of people living with HIV/AIDS. Increasingly, there are growing numbers of people who are also living with non-communicable disease such as diabetes and heart disease. Although HIV is infectious and diseases like diabetes are not, they share similarities in that they require lifelong management to ensure health. HIV treatment requires a consistent regimen of antiretroviral therapy (ART), while diabetes may require a change in diet as well as regular medication. For policy makers planning health care in South Africa, it is a big challenge to make sure that the state health system has a cost-effective plan to keep these people on treatment and accessing care throughout their lifetime. Although the South African government has made ART available free of charge, recent studies have indicated that many with HIV stop taking the drugs over time. This problem has worsened as the programme has expanded. This is dangerous for their health and is also worrying from a public health standpoint as it could lead to strains of the disease that are resistant to ART as well as increasing the chance of them passing the virus on. Significantly, some clinics dispensing ART have much higher rates of people continuing to pick up their treatment. This study aims to fill knowledge gaps about the factors that influence whether people stay in care, focusing on the ART programme in the Western Cape Province of South Africa. The results of the research will help us work with policy makers in the Department of Health and leaders of community-based organisations to design a larger project that will involve implementing a country-wide programme to achieve more continuous care for people with chronic lifelong conditions. The study will involve researchers from different disciplines who are trained in medicine, the analysis of health systems and policies, social anthropology, public health and pharmacy. We will adopt a method that analyses existing numerical data monitoring how regularly people are collecting the ART drugs at clinics, and other HIV-related data. This will be used to identify which health facilities are performing better than others in terms of keeping people on treatment and engaged in their clinical care. We will focus our work on facilities serving poor populations who are socially marginalised. We will then go on to do more in-depth research in a few facilities which we have assessed as "good performers" and "bad performers" respectively. We will look in more detail at the information about HIV care and also look at indicators of whether people with diabetes are staying in care, using diabetes as an example for non-communicable disease. We will also collect information by observing practices in clinics, and interviewing staff and patients. Interviews will be conducted with decision-makers in the provincial and national Departments of Health. We will investigate the reasons for differences in performance and identify constraints to positive performance. We suspect that the facilities that are managing to keep patients in care, have more innovative organisational practices and have in addition forged partnerships with community-based organisations. This can then help to better support people to take part in managing their chronic illness themselves as well. Such "self-management" is an important factor in poorer settings where the health system cannot provide intensive support from health professionals. We will identify generic factors that are helping to keep people on ART in care and that, if adopted more generally, could contribute to improving care for other chronic conditions also. We will have a workshop with the Department of Health and other stakeholders to discuss how the lessons learned can improve the programmes for chronic disease at national level. This will assist in the design of a bigger intervention and a further research proposal.
Countries that have reduced malaria incidence to low levels face major challenges when trying to eliminate the disease altogether. In trying to reduce transmission further, considerable resources are required for disease prevention through mosquito vector control, for example by indoor residual spraying (IRS) of all houses. Such mass prevention efforts can lead to reduced compliance in communities and control programs who no longer perceive a risk of malaria, and waning political and donor commitment when the disease burden is low, thereby endangering the sustainability of the elimination effort. Evidence based methods of scaling back blanket IRS have to be developed which ensure that populations are not put at risk when IRS is no longer routinely applied. In this study, targeted focal IRS in response to new cases being reported will be compared with generalised annual IRS of all houses, to determine whether it is as effective, less costly, more acceptable, results in higher coverage and compliance and increased malaria prevention seeking behaviour. A pre-condition for this approach, is a reliable rapid malaria case surveillance system, based on definitive diagnosis of suspected cases. This trial will be carried out in South Africa, which has practised blanket IRS for many decades, where case incidence in many districts is now low enough to be considered pre-elimination, and where a high quality case reporting system is well established. Spray localities will be grouped into clusters of 5,000 to 10,000 persons which will be randomly allocated to either targeted IRS, or to blanket routine IRS. Targeted neighbourhood IRS will be triggered in response to two or more local cases occurring within 4 weeks of each other and residing within 0.5km from one another. Spraying and community awareness activities will be carried out in a radius of 0.5km from each case house. It is postulated that focal spraying will lead to higher quality of IRS application because it can be better supervised and will be seen as protection against real risk of infection due to the occurrence of recent local cases; that it will be more acceptable to householders and hence lead to better co-operation with access to premises and hence higher spray coverage; and that householders will exercise better compliance with not repainting, washing or re-plastering of walls after spraying. As a result we expect that incidence of cases will be no higher in targeted IRS areas than in those receiving mass IRS and that targeted spraying will be more economical and hence more sustainable. The study will measure malaria case incidence, householder acceptability and compliance, spray coverage, and economic costs of the interventions as outcome indicators. There is some evidence from other countries that in very low transmission settings, incident malaria cases occur in hotspots that are stable over time. If such hotspots can be accurately located, they can be singled out for focal interventions such as targeted IRS at the beginning of each season. To investigate whether such hotspots of local transmission exist in South Africa, it is proposed that filter paper blood spots are collected in communities where targeted IRS is carried out, to be tested for the presence of antibody sero-positivity to malarial antigens. The sero-prevalence of 'outbreak' communities will be compared with sero-prevalence of randomly selected communities in which no recent cases have occurred. This comparison will determine whether neighbourhoods with recent cases have historically been exposed to malaria parasites, and are therefore likely to be hotspots of transmission. The existence of such hotspots would strengthen the case for targeted control efforts. For countries that have set elimination of malaria as a policy objective this study will provide evidence upon which sustainable policy decisions about mass vector control can be based during the pre-elimination period.