Wellness programmes for persons living with HIV/AIDS: Experiences from Eastern Cape province,South Africa

Abstract

Columbia University's International Centre for AIDS Care and Treatment Programmes (ICAP) supports the establishment of HIV prevention, care and treatment programmes, in resource-limited countries, through the President's Emergency Plan for AIDS Relief. In South Africa (SA), ICAP has collaborated with the Eastern Cape Department of Health since 2004, to support HIV treatment and care programmes at public healthcare facilities in rural and urban areas. Adherence, psychosocial and other supportive services have been combined into Wellness Programmes that have been situated within hospital-based Wellness Centres in two rural regions, and integrated within primary healthcare facilities in a third. This paper reviews components of wellness services for people living with HIV/AIDS including: voluntary counselling and testing, disclosure and prevention, ongoing counselling, health literacy and peer education, community- and home-based care, adherence support, and associated comprehensive care continuums. It also describes local context in which the Wellness Programmes were established. Finally it describes processes, successes and challenges, with programme development, and useful indicators monitored, lessons learned and strategies to strengthen and expand such programmes. Insights provided may inform other efforts to create sustainable systems of interdisciplinary care and accessible psychosocial support for HIV-infected persons within public facilities in resource-constrained settings.     

‘Taking care’ in the age of AIDS: older rural South Africans’ strategies for surviving the HIV epidemic

Older adults have been largely overlooked in community studies of HIV in highly endemic African countries. In our rural study site in Mpumalanga Province, South Africa, HIV prevalence among those aged 50 and older is 16.5%, suggesting that older adults are at risk of both acquiring and transmitting HIV. This paper utilises community-based focus-group interviews with older rural South African men and women to better understand the normative environment in which they come to understand and make decisions about their health as they age in an HIV endemic setting. We analyse the dimensions of an inductively emerging theme: ku ti hlayisa (to take care of yourself). For older adults, ‘taking care’ in an age of AIDS represented: (1) an individualised pathway to achieving old-age respectability through the taking up of responsibilities and behaviours that characterise being an older person, (2) a set of gendered norms and strategies for reducing one’s HIV risk, and (3) a shared responsibility for attenuating the impact of the HIV epidemic in the local community. Findings reflect the individual, interdependent and communal ways in which older rural South Africans understand HIV risk and prevention, ways that also map onto current epidemiological thinking for improving HIV-related outcomes in high-prevalence settings.     

Community health workers and the response to HIV/AIDS in South Africa: tensions and prospects

After a decline in enthusiasm for national community health worker (CHW) programmes in the 1980s, these have re-emerged globally, particularly in the context of HIV. This paper examines the case of South Africa, where there has been rapid growth of a range of lay workers (home-based carers, lay counsellors, DOT supporters etc.) principally in response to an expansion in budgets and programmes for HIV, most recently the rollout of antiretroviral therapy (ART). In 2004, the term community health worker was introduced as the umbrella concept for all the community/lay workers in the health sector, and a national CHW Policy Framework was adopted. We summarize the key features of the emerging national CHW programme in South Africa, which include amongst others, their integration into a national public works programme and the use of non-governmental organizations as intermediaries. We then report on experiences in one Province, Free State. Over a period of 2 years (2004--06), we made serial visits on three occasions to the first 16 primary health care facilities in this Province providing comprehensive HIV services, including ART. At each of these visits, we did inventories of CHW numbers and training, and on two occasions conducted facility-based group interviews with CHWs (involving a total of 231 and 182 participants, respectively). We also interviewed clinic nurses tasked with supervising CHWs. From this evaluation we concluded that there is a significant CHW presence in the South African health system. This infrastructure, however, shares many of the managerial challenges (stability, recognition, volunteer vs. worker, relationships with professionals) associated with previous national CHW programmes, and we discuss prospects for sustainability in the light of the new policy context.     

Learning from HIV: exploring migration and health in South Africa

Southern Africa is associated with high HIV prevalence and diverse population movements, including temporary, circular movements between rural and urban areas within countries (internal migration), and movements across borders (international migration). Whilst most migration in southern Africa is associated with the search for improved livelihood opportunities in urban areas a small--but significant--number of people are forced to migrate to escape persecution or civil war. This paper utilises recent empirical studies conducted in South Africa to explore linkages between migration into urban areas and health, focusing on HIV. It is shown that the relationship between migration and HIV is complex; that both internal and international migrants move to urban areas for reasons other than healthcare seeking; and that most migratory movements into urban areas involve the positive selection of healthy individuals. Whilst healthy migration has economic benefits for rural sending households, the data uncovers an important process of return migration (internally or across borders) in times of sickness, with the burden of care placed on the rural, sending household. There is an urgent need for a comprehensive response that maintains the health of migrants in urban areas, and provides support to rural areas in times of sickness.     

Learning from HIV: Exploring migration and health in South Africa

Abstract

Southern Africa is associated with high HIV prevalence and diverse population movements, including temporary, circular movements between rural and urban areas within countries (internal migration), and movements across borders (international migration). Whilst most migration in southern Africa is associated with the search for improved livelihood opportunities in urban areas a small – but significant – number of people are forced to migrate to escape persecution or civil war. This paper utilises recent empirical studies conducted in South Africa to explore linkages between migration into urban areas and health, focusing on HIV. It is shown that the relationship between migration and HIV is complex; that both internal and international migrants move to urban areas for reasons other than healthcare seeking; and that most migratory movements into urban areas involve the positive selection of healthy individuals. Whilst healthy migration has economic benefits for rural sending households, the data uncovers an important process of return migration (internally or across borders) in times of sickness, with the burden of care placed on the rural, sending household. There is an urgent need for a comprehensive response that maintains the health of migrants in urban areas, and provides support to rural areas in times of sickness.     

Engagement of non-government organisations and community care workers in collaborative TB/HIV activities including prevention of mother to child transmission in South Africa: Opportunities and challenges

ABSTRACT: BACKGROUND: The implementation of collaborative TB/HIV activities requires interventions beyond facility fences in order to mitigate the impact of the dual epidemic on patients and communities at large. Engagement of Community Care Workers (CCWs) in delivery of integrated TB/HIV services is a potential avenue to enhance universal coverage and treatment outcomes and address human resource for health crisis in sub-Saharan Africa. In South Africa, CCWs are employed by nongovernmental organization (NGO) with Health Department contracts funded by government to provide various TB/ HIV community based activities. Using South Africa as a case, we report on engagement of NGOs and CCWs in the implementation of collaborative TB/HIV/PMTCT activities in rural South Africa, including extent of participation and constraints and opportunities to enhance effective participation. Our mixed method study in Sisonke district, KwaZulu-Natal included facility and NGO audits, a household survey (n=3867), 33 key informants with provincial, district and facility managers, NGOs managers and six CCW focus group discussions. Results: The findings indicate that most contracted NGOs were providing TB or HIV support and care with little support for PMTCT. Only 11% of TB and HIV patients needing care and support at the community level were receiving support from CCWs, while 2% of pregnant women were counseled by CCWs on infant feeding options and HIV testing. Most facilities (83%) did not have referral mechanisms or any linkage with NGOs. Major constraints identified were system-related: structural, organizational and managerial constraints; inadequate CCW training and supervision; limited scope of CCW practice, inadequate funding, and inconsistency in supplies and equipment. Individual and community factors such as lack of disclosure and stigma related to HIV; and cultural beliefs were also identified as constraints. Conclusions: We conclude that sub-optimal NGO/CCW engagement exists in implementation of collaborative TB/HIV/PMTCT activities, despite its potential benefits to enhance provision of integrated TB/HIV/PMTCT services at community level. Effective interventions that address contextual and health systems challenges are required and these interventions should combine systematic skills-building and consistent CCW supervision with a reliable referral and M&E system. Policy review to harmonise and expand the scope of CCW practice with task shifting to include home-based HIV counseling and testing is vital.     

Integrating cervical cancer prevention initiatives with HIV care in resource-constrained settings: A formative study in Durban,South Africa

Cervical cancer screening rates remain suboptimal among women in South Africa (SA), where cervical cancer prevalence is high. The rollout of HIV-related services across SA may provide a means to deliver cervical cancer screening to populations with limited access to health care systems. In this mixed methods study, psychosocial factors influencing cervical cancer prevention and perceptions of the provision of Pap smears in HIV care settings were examined. Structured interviews were conducted with women (n = 67) from a municipal housing estate in Durban, SA. Key informants (n = 12) also participated in semi-structured interviews. Findings revealed that participants had low cervical cancer knowledge, but desired more information. Relevant themes included the normalisation of HIV and beliefs that cervical cancer might be worse than HIV. A comprehensive community clinic was desired by most, even if HIV-positive patients were treated there. This study provides important insight into integrating cervical cancer screening with HIV clinics, which may increase cancer screening among South African women.     

HIV/AIDS prevention for migrants and ethnic minorities: three phases of evaluation.

There are now a number of HIV/AIDS prevention programmes for migrant and ethnic minority communities throughout the world, both 'top down' programmes organised, for example, by governments and large NGOs, and 'bottom up' programmes, organised by migrant groups themselves. Evaluation of such programmes, however, is in most cases sorely lacking. The Swiss 'Migrants Project' is, to the authors' knowledge, the only such programme to have been systematically accompanied by evaluation throughout. This paper describes three phases of evaluation of the Migrants Project (exploratory studies, process, and outcome evaluations). The evaluations have highlighted the need for culturally and linguistically appropriate prevention efforts which use already-existing community structures, as well as the need to identify and train people from within communities to carry out local prevention efforts. Outcome evaluation has shown that: a government sponsored HIV/AIDS prevention programme can meet with acceptance by migrant communities; considerable engagement in prevention activities can be mobilised; and AIDS prevention among such communities can be effective. Such efforts can create levels of sensitivity to HIV issues and of protective behaviour that are equal to those of the host country population. The strategy adopted by the programme is thus supported. Key elements are to avoid potential for stigmatising by: (1) placing HIV/AIDS prevention efforts for migrant populations within an overall national HIV/AIDS prevention strategy; (2) informing and sensitising general populations within migrant communities before initiating more targeted prevention with migrant IDUs, MSM, and CSWs; (3) encouraging, facilitating and guiding health promotion efforts which emerge from within migrant communities themselves.     

Love in Africa

Research reveals how homophobia and stigma link closely to HIV among men who have sex with men in sub-Saharan Africa. This paper considers the varying impact of homophobic stigma on HIV prevention programmes among men who have sex with men in South Africa. It explores how a community-based HIV prevention programme based in the peri-urban townships of Cape Town was ‘translated’ to peri-urban Johannesburg. Drawing on interviews with volunteers and programme facilitators in Johannesburg, it argues that an altered homophobic environment to that found in Cape Town gave different opportunities to engage both with other men who have sex with men and the broader community. It also argues that programme facilitators should be mindful of how varying degrees of homophobic stigma may relate to broader theoretical debates about sexual binary relationships, which can help us understand why particular programmes choose to focus on certain activities rather than others.     

What role can gender-transformative programming for men play in increasing men’s HIV testing and engagement in HIV care and treatment in South Africa?

Men are less likely than women to test for HIV and engage in HIV care and treatment. We conducted in-depth interviews with men participating in One Man Can (OMC) – a rights-based gender equality and health programme intervention conducted in rural Limpopo and Eastern Cape, South Africa – to explore masculinity-related barriers to HIV testing/care/treatment and how participation in OMC impacted on these. Men who participated in OMC reported an increased capability to overcome masculinity-related barriers to testing/care/treatment. They also reported increased ability to express vulnerability and discuss HIV openly with others, which led to greater willingness to be tested for HIV and receive HIV care and treatment for those who were living with HIV. Interventions that challenge masculine norms and promote gender equality (i.e. gender-transformative interventions) represent a promising new approach to address men’s barriers to testing, care and treatment.     

Engaging the capacity of comadronas as HIV prevention providers in rural Guatemala

Abstract

In this study the author address rural Guatemala’s poor maternal health and HIV status by integrating an effective evidence-based HIV intervention (SEPA), with local implementing health partners to extend the capacity of comadronas (traditional Mayan birth attendants) to encompass HIV prevention. I employed a multi-method design consisting of a focus group, an interview, and participant observation to identify important factors surrounding comadrona receptivity towards expanding their capacity to HIV prevention. I analyzed data using thematic analysis and identified four categories: Project logistics, HIV knowledge and risk assessment, condom perceptions, and HIV testing perceptions. I affirm comadrona receptivity toward HIV prevention, and that will guide future cultural adaptation and tailoring of SEPA for comadrona training. I will use my results to create a prototype intervention that could be applied to other similarly underserved indigenous communities.     

Preparing for HPV vaccination in South Africa: key challenges and opinions

This article reports on qualitative research investigating key challenges and barriers towards human papillomavirus (HPV) vaccine introduction in the Western Cape Province, South Africa. A total of 50 in-depth interviews and 6 focus groups were conducted at policy, health service and community levels of enquiry. Respondents expressed overall support for the HPV vaccine, underscored by difficulties associated with the current cervical screening programmes and the burgeoning HIV/AIDS epidemic in South Africa. Overall poor community knowledge of cervical cancer and the causal relationship between HPV and cervical cancer suggests the need for continued education around the importance of regular cervical screening. The optimal target populations for HPV vaccination was influenced by the perceived median age of sexual activity in South African girls (9-15 years), with an underlying concern that high levels of sexual abuse had significantly decreased the age of sexual exposure suggesting vaccination should commence as early as 9 years. Vaccination through schools with the involvement of other stakeholders such as sexual and reproductive health and the advanced programme on immunization (EPI) were suggested. Opposition to the HPV vaccine was not anticipated if the vaccine was marketed as preventing cervical cancer rather than a sexually transmitted infection. The findings assist in identifying potential barriers and facilitating factors towards HPV vaccines and will inform the development of policy and programs to support HPV vaccination introduction in South Africa and other African countries.     

Community-based participatory research (CBPR) in South Africa: engaging multiple constituents to shape the research question

Community engagement is an on-going, arduous, and necessary process for developing effective health promotion programs. The challenges are amplified when the particular health issue or research question is not prominent in the consciousness of the targeted community. In this paper, we explore the community-based participatory research (CBPR) model as a means to negotiate a mutual agenda between communities and researchers. The paper is focused on the (perceived) need for cervical cancer screening in an under-resourced community in Cape Town, South Africa. Cervical cancer is a significant health problem in this community and elsewhere in South Africa. Unlike HIV-AIDS, however, many Black South Africans have not been educated about cervical cancer and the importance of obtaining screening. Many may not consider screening a priority in their lives. Our research included extensive consultations and informal interviews with diverse community and regional stakeholders. Following these, we conducted 27 focus groups and 106 demographic surveys with randomly selected youth, parents, local health care personnel, educators and school staff. Focus group data were summarized and analyzed cross-sectionally. Community stakeholders were involved throughout this research. Our consultations, interviews, and focus group data were key in identifying the concerns and priorities of the community. By engaging community stakeholders, we developed a research framework that incorporated the community's concerns and priorities, and stressed the intersecting roles of poverty, violence, and other cultural forces in shaping community members' health and wellbeing. Community members helped to refocus our research from cervical cancer to 'cervical health,' a concept that acknowledged the impact on women's bodies and lives of HIV-AIDS and STDs, sexual violence, poverty, and multiple social problems. We conclude that the research agenda and questions in community-based health research should not be considered immutable. They need to be open to negotiation, creativity, and constant reinvention.     

Exploring perceptions of HIV risk and health service access among Zimbabwean migrant women in Johannesburg: a gap in health policy in South Africa?

We present qualitative data from a 2005 exploratory study, recently published studies, and an analysis of the Department of Health's strategic plan to highlight the need for a broader policy debate on health-care access for migrants in South Africa. We conducted in-depth interviews with 15 Zimbabwean women living in inner-city Johannesburg to document the special characteristics of this group of migrants, enquiring about their perceptions of HIV risk, and experiences of health services in South Africa. We identified access barriers, namely perceptions of relatively low HIV risk, severely constrained financial circumstances, uncertain legal status, and experiences of unresponsive health workers. We recommend that migrant-health rights be placed on South Africa's policy agenda, migrants be included in HIV prevention programs and that health workers be sensitized to the needs of migrants.     

Empathic response and no need for perfection: reflections on harm reduction engagement in South Africa

Abstract

The importance of community involvement in public health research processes is well established. The literature is, however, less forthcoming about processes of community inclusion in public health project implementation, especially when it comes to projects focusing on key populations. The Step Up Project is the first multi-city harm reduction service provision project for people who inject drugs in South Africa. Since inception, the Project has made concerted efforts to work with and alongside people who actively identify as people who inject drugs. This paper outlines two features in relation to project-beneficiary dynamics that emerged in a qualitative project evaluation conducted by an external researcher and a funder representative. The first was that people accessing the project comfortably expressed criticisms of both themselves and the project, and noted when their behaviour contradicted project ideals. The second was the extent to which engagement with the project was reported to be fostering a renewed sense of personhood and right to exist in the world. These findings are, we suggest, in principle related to two forms of community engagement: consistent empathic response and community advisory groups. This implies that programmes need to focus on their mode of approach as much as on the content of their approach. It further implies that programme impact not be limited to quantitative assessment measures.     

A planning framework for community empowerment goals within health promotion

Health promotion often comprises a tension between 'bottom-up' and 'top-down' programming. The former, more associated with concepts of community empowerment, begins on issues of concern to particular groups or individuals, and regards some improvement in their overall power or capacity as the important health outcome. The latter, more associated with disease prevention efforts, begins by seeking to involve particular groups or individuals in issues and activities largely defined by health agencies, and regards improvement in particular behaviours as the important health outcome. Community empowerment is viewed more instrumentally as a means to the end of health behaviour change. The tension between these two approaches is not unresolvable, but this requires a different orientation on the part of those responsible for planning more conventional, top-down programmes. This article presents a framework intended to assist planners, implementers and evaluators to systematically consider community empowerment goals within top-down health promotion programming. The framework 'unpacks' the tensions in health promotion at each stage of the more conventional, top-down programme cycle, by presenting a parallel 'empowerment' track. The framework also presents a new technology for the assessment and strategic planning of nine identified 'domains' that represent the organizational influences on the process of community empowerment. Future papers analyze the design of this assessment and planning methodology, and discuss the findings of its field-testing in rural communities in Fiji.     

Barriers to post exposure prophylaxis (PEP) completion after rape: a South African qualitative study

Sexual violence and HIV are two serious public health problems in South Africa. Post exposure prophylaxis (PEP) to prevent HIV after rape was introduced into the South African public health services in 2002 but many questions on the completion of PEP medication remain. A qualitative study involving in-depth interviews was conducted with 29 women attending sexual assault services in an urban and a rural site to explore PEP use after rape. It showed how PEP adherence was a complex and challenging experience, with survivors experiencing disruptions in their lives and unable to adhere to the medication adequately. Only nine completed their prescribed drug regimes. Rape stigma and perceptions of rape impacted on adherence, which became a lesser priority if the rape was contested by important others. Being blamed and not receiving social support had profound psychological impact. Stigma of rape and fear of HIV played very powerful roles in debilitating women's ability to take medication to prevent HIV infection. Further research is needed to support the development of interventions that acknowledge the complex barriers to adherence of PEP after rape.     

“People are struggling in this area:” a qualitative study of women’s perspectives of telehealth in rural South Carolina

ABSTRACT

Rural communities face disparities and barriers to health care access that may be addressed through telehealth programs; yet little research is available detailing rural women’s attitudes toward telehealth. Researchers partnered with a women’s reproductive health organization to conduct formative audience research to understand rural women’s perspectives of telehealth in their communities. Qualitative research was conducted to improve understandings of women’s perceptions of telehealth in rural South Carolina. In-depth interviews with 52 women aged 18–44 years were conducted in five rural counties in South Carolina during June – August 2015. Analytical techniques from grounded theory methodology were used throughout data collection and analysis. Participants believed a telehealth intervention would benefit the community by addressing reproductive health barriers, such as cost, transportation, and long wait times at local health care facilities. Participants’ concerns included issues of confidentiality in a small town, discomfort with mediated communication, privacy, and the importance of relationship-centered care, including patient-provider communication and approachability of health care providers. Findings provide insight to design and implement telehealth interventions to improve women’s health in rural communities.     

Health diplomacy and Adapting global health interventions to local needs: findings from project accept (HPTN 043), a community-based intervention to reduce HIV incidence in populations at risk in Sub-Saharan Africa and Thailand

ABSTRACT: BACKGROUND: Study-based HIV prevention interventions, especially those that are conducted on an international or multi-site basis, frequently require site-specific adaptations in order to (1) respond to socio-cultural differences in risk determinants, (2) to make interventions more relevant to target population needs, and (3) in recognition of 'public health diplomacy' issues. We report on the adaptations development, approval and implementation process and describe adaptations from the Project Accept voluntary counseling and testing, community mobilization and post-test support services intervention. METHODS: We reviewed all relevant documentation collected during the study intervention period (e.g. monthly progress reports; bi-annual steering committee presentations) and conducted a series of semi-structured interviews with project directors and between 12 and 23 field staff at each study site in South Africa, Zimbabwe, Thailand and Tanzania during 2009. Respondents were asked to describe (1) the adaptations development and approval process and (2) the most successful site-specific adaptations in terms of facilitating intervention implementation. RESULTS: Across sites, proposed adaptations were identified by field staff and submitted to project directors for review, on a formally planned basis. The cross-site intervention sub-committee then ensured fidelity to the study protocol before approving. Successfully-implemented adaptations included: intervention delivery adaptations (e.g. development of tailored counseling messages for immigrant labour groups in South Africa); environmental and infrastructural adaptations (e.g. use of local community centers as VCT venues in Zimbabwe); religious adaptations (e.g. dividing clients by gender in Muslim areas of Tanzania); economic adaptations (e.g. co-provision of income generating skills classes in Zimbabwe); epidemiological adaptations (e.g. provision of 'youth-friendly' services in South Africa, Zimbabwe and Tanzania), and social adaptations (e.g. modification of terminology to local dialects in Thailand; adjustment of service delivery schedules to suit seasonal and daily work schedules across sites). CONCLUSIONS: Adaptation selection, development and approval during multi-site HIV intervention research studies should be a planned process that maintains fidelity to the study protocol. The successful implementation of appropriate site-specific adaptations may have important implications for intervention implementation, from both a service uptake and a 'public health diplomacy' perspective.