Let me be quiet' : HIV disclosure, stigma and denial in Imizamo Yethu, Cape Town

Includes abstract. Includes bibliographical references (leaves 81-86)

'Let Me Be Quiet': The Dilemma of HIV Disclosure

This paper argues for a differentiated approach to understanding disclosure of HIV status in a South African township. It suggests that there are two models of disclosure: partial and full. There are benefits for PLHA in both forms of disclosure resulting in improved health and well-being. Disclosure can also play a role in prevention as it can facilitate initiation of safe sex practices. However, the benefits are limited in the partial disclosure as there are challenges related to health-seeking behaviour, stress release and initiation of safe-sex practices. The paper describes partial disclosure as a dilemma between, on one hand, feeling free from secrecy, improved health and well-being and being able to solicit support, and on the other, fear of stigma and discrimination. It argues that a crucial aspect in the choice between partial and full disclosure is how PLHA deal with stigma and self-stigmatisation, related to a conceptualisation of HIV as a disease the bearers bring unto themselves through 'immoral' behaviour. It suggests that those who chose partial disclosure dealt with stigma through managing their disclosure by seeking out people who were unlikely to stigmatise and likely to be supportive. They dealt with self-stigma through 'insisting on innocence', repositioning themselves within the 'guilty'/'innocent' binary as 'innocent' without challenging the discourse of illness as personal responsibility. For the majority of those who disclosed fully, disclosure was experienced as a dilemma in the same way as for those who disclosed partially. In these cases, the dilemma was resolved by confronting stigma and refuting the stigmatising discourses that link HIV with personal responsibility and morality. Some informants who disclosed fully shortly after the diagnosis did not experience self-stigma and did not fear external stigma because they did not associate HIV with personal responsibility. Finally, this paper concludes that improved disclosure rates as well as a change from partial to a more inclusive or full disclosure is essential to realise the full benefits of disclosure, a change that is linked to challenging the conceptualisation of HIV as a condition linked to personal responsibility and 'immorality'

Health promotion via SMS improves hypertension knowledge for deaf South Africans

Abstract Background Signing Deaf South Africans have limited access to health information. As a result, their knowledge about health is limited. Cell phone usage in South Africa is high. This study aimed to assess whether a short message service (SMS)-based health promotion campaign could improve Deaf people’s knowledge of hypertension and healthy living. Additionally, the study aimed to assess the acceptability of using SMSs for health promotion targeting Deaf people. Methods A baseline questionnaire assessed participants’ knowledge about hypertension before an SMS-based information campaign was conducted. After the campaign, an exit questionnaire was conducted, containing the same questions as the baseline questionnaire with additional questions about general acceptability and communication preferences. Results were compared between baseline and exit, using McNemar’s test, paired t-test and Wilcoxon signed-rank test. Focus groups aimed to get further information on the impact and acceptability of SMSs. The focus groups were analysed using inductive thematic analysis. Results The campaign recruited 82 participants for the baseline survey, but due to significant loss-to-follow-up and exclusions only 41 participants were included in the analysis of the survey. The majority (60%) were men. Eighty percent were employed, while 98% had not finished high school. The campaign showed a statistically significant improvement in overall knowledge about hypertension and healthy living amongst participants. Six individual questions out of 19 also showed a statistically significant improvement. Despite this, participants in focus groups found the medical terminology difficult to understand. Several ways of improving SMS campaigns for the Deaf were identified. These included using using pictures, using ‘signed’ SMSs, combining SMSs with signed drama and linking SMS-campaigns to an interactive communication service that would enable the Deaf to pose questions for clarification. Focus groups suggested that participants who were hypertensive during the campaign adopted a healthier lifestyle. Conclusion SMSs were effective in improving Deaf people’s knowledge of hypertension and healthy living. However, SMS-campaigns should be cognizant of Deaf people’s unique needs and communication preference and explore how to accommodate these. Trial registration The research was registered with the Pan African Clinical Trial Registry on December 1, 2015. Identification number: PACTR201512001353476

Rights-based training enhancing engagement of health providers with communities, Cape Metropole, South Africa

From Frontiers via Jisc Publications RouterCommunity participation, the central principle of the primary health care approach, is widely accepted in the governance of health systems. Health Committees (HCs) are community-based structures that can enable communities to participate in the governance of primary health care. Previous research done in the Cape Town Metropole, South Africa, reports that HCs' potential can, however, be limited by a lack of local health providers' (HPs) understanding of HC roles and functions as well as lack of engagement with HCs. This study was the first to evaluate HPs' responsiveness towards HCs following participation in an interactive rights-based training. Thirty-four HPs, from all Cape Metropole health sub-districts, participated in this qualitative training evaluation. Two training groups were observed and participants completed pre- and post-training questionnaires. Semi-structured interviews were held with 10 participants 3–4 months after training. Following training, HPs understood HCs to play an important role in the communication between the local community and HPs. HPs also perceived HCs as able to assist with and improve the quality and accessibility of PHC, as well as the answerability of services to local community needs. HPs expressed intentions to actively engage with the facility's HC and stressed the importance of setting clear roles and responsibilities for all HC members. This training evaluation reveals HPs' willingness to engage with HCs and their desire for skills to achieve this. Moreover, it confirms that HPs are crucial players for the effective functioning of HCs. This evaluation indicates that HPs' increased responsiveness to HCs following training can contribute to tackling the disconnect between service delivery and community needs. Therefore, the training of HPs on HCs potentially promotes the development of needs-responsive PHC and a people-centred health system. The training requires ongoing evaluation as it is extended to other contexts.4pubpu

Comparison of two text message (mHealth) campaigns for the Deaf: Contracted out v. conducted in-house

Cell phone-based health information (mobile health or mHealth) campaigns are an emerging technology. This evaluation focused on the aspect of cost of two health information campaigns, one on hypertension and one on pregnancy. Researchers could either contract out the technical components of the campaigns or attempt to run the campaigns themselves, in-house. The in-house campaigns cost an estimated ZAR13 548.72 v. the private provider quotes which ranged from ZAR27 542.97 to ZAR34 227.59. Running the campaigns in-house was more labour intensive and required more technical expertise, but had a reduced delivery failure rate (9.2% in-house v. 30.0% private provider). Running small to medium SMS (text message) campaigns for evaluative purposes proved advantageous over contracting out to private providers. Larger-scale evaluations and full-scale roll-out will require the services of private providers, but it is still essential that researchers actively engage with and monitor the technical aspects of these campaigns

Rights-Based Training Enhancing Engagement of Health Providers With Communities, Cape Metropole, South Africa

Community participation, the central principle of the primary health care approach, is widely accepted in the governance of health systems. Health Committees (HCs) are community-based structures that can enable communities to participate in the governance of primary health care. Previous research done in the Cape Town Metropole, South Africa, reports that HCs' potential can, however, be limited by a lack of local health providers' (HPs) understanding of HC roles and functions as well as lack of engagement with HCs. This study was the first to evaluate HPs' responsiveness towards HCs following participation in an interactive rights-based training. Thirty-four HPs, from all Cape Metropole health sub-districts, participated in this qualitative training evaluation. Two training groups were observed and participants completed pre- and post-training questionnaires. Semi-structured interviews were held with 10 participants 3–4 months after training. Following training, HPs understood HCs to play an important role in the communication between the local community and HPs. HPs also perceived HCs as able to assist with and improve the quality and accessibility of PHC, as well as the answerability of services to local community needs. HPs expressed intentions to actively engage with the facility's HC and stressed the importance of setting clear roles and responsibilities for all HC members. This training evaluation reveals HPs' willingness to engage with HCs and their desire for skills to achieve this. Moreover, it confirms that HPs are crucial players for the effective functioning of HCs. This evaluation indicates that HPs' increased responsiveness to HCs following training can contribute to tackling the disconnect between service delivery and community needs. Therefore, the training of HPs on HCs potentially promotes the development of needs-responsive PHC and a people-centred health system. The training requires ongoing evaluation as it is extended to other contexts

Improving Knowledge About Pregnancy for Deaf South African Women of Reproductive Age Through a Text Messaging–Based Information Campaign: Mixed Methods Study

BackgroundSigning Deaf South Africans have limited access to health information and, consequently, limited knowledge about health. Maternal and neonatal mortality rates are high. Cell phone use is high, making it a potentially effective way of communicating about maternal and child health. ObjectiveThe primary aim of this study was to assess whether an SMS text messaging–based health information campaign could improve knowledge about pregnancy, antenatal care, and healthy living during pregnancy for signing Deaf South African women of reproductive age. The secondary aim was to evaluate the acceptability of such an intervention. MethodsThis study was designed as a pretest-posttest study. A baseline questionnaire assessed participants’ knowledge about pregnancy, antenatal care, and healthy living during pregnancy before an SMS text messaging–based information campaign was conducted. After the campaign, an exit questionnaire was administered containing the same questions as the baseline questionnaire with additional questions on general acceptability and communication preferences. The results were compared between baseline and exit using the McNemar and Wilcoxon signed rank tests. A focus group aimed to obtain further information on the impact and acceptability of SMS text messages. The focus group was analyzed inductively. ResultsThe study showed a statistically significant improvement in overall health knowledge among participants. Despite this, some participants found the medical terminology challenging to understand. Several ways of improving SMS text messaging campaigns for the Deaf were identified, including using Multimedia Messaging Services with a person signing messages and linking information campaigns to a communication service that would enable Deaf people to pose questions. The focus group also suggested that SMS text messages might play a role in motivating healthy behaviors during pregnancy. ConclusionsThe SMS text messaging campaign effectively improved Deaf women’s knowledge about pregnancy, antenatal care, and healthy living during pregnancy and has the potential to affect health behavior. This contrasts with a similar study on hearing pregnant women. This suggests that SMS text messages may be particularly effective in improving Deaf people’s health knowledge. However, attention should be paid to Deaf participants’ specific needs and communication preferences to optimize impact. The potential of using SMS text messaging campaigns to affect behavior should be studied. Trial RegistrationPan-African Clinical Trials Registry (PACTR) PACTR201512001352180; https://tinyurl.com/3rxvsrb