A Practical Guide To Implementing Community-Based HIV-Prevention Services: Experiences shared and lessons learned from South Africa
CHAPTER 1 INTRODUCTION
Why is this guidance document important?
HIV (Human Immunodeficiency Virus) and AIDS (Acquired Immune Deficiency Syndrome) is a global epidemic. Preventing the transmission of HIV is essential in combatting AIDS. It is widely acknowledged that HIV prevention and treatment cannot be realized in government healthcare facilities only. Tackling the HIV epidemic requires a joint response by government in partnership with civil society. Community-based HIV-prevention services can play an important role in the fight against HIV. This guidance document will be an important resource for those wanting to set up community-based HIVprevention services, as part of an integrated publichealth approach.
Scientific evidence tells us which interventions we should implement if we want to reduce HIV transmission, but limited information exists on how to implement these interventions in a communitybased setting. For example, we know that we need to increase access to HIV testing so that we can diagnose those with HIV and link them to treatment. However, practically, how do you go into a community and start offering HIV-testing services (HTS)? How do you get those diagnosed with HIV to link into HIV care and treatment services? This guidance document addresses these and many other questions, as it provides practical and relevant information, drawing on the expertise and proficiencies of the authors, who have direct experience in the implementation of community-based HIV-prevention programs.
The guide encompasses pertinent aspects for the implementation and management of communitybased HIV-prevention services. Although predominantly based on experiences of HIV counseling and testing programs, many of the key principles can be applied across other types of community-based HIVprevention programs that happen outside of health facilities. “ ….. implementing a community HIV-prevention program allows for face-to-face consultation in a setting where individuals feel more comfortable and open to receiving health education and services, on subjects and diseases still somewhat stigmatized. These programs present opportunities for collaboration of health services with community leaders, faith-based and other organizations established in the community. As we move towards a whole society approach for health, community HIV-prevention programs are a good touching base to raise awareness for individuals and communities with regards to their responsibilities in the fight against AIDS.” - Neshaan Peton (Deputy Director HIV Treatment & PMTCT programme, Western Cape Government Department of Health)
What will you learn from this chapter?
How did this guidance document come about?
What makes this guidance document different?
Who will benefit from this guidance document?
Why are community-based HIV-prevention strategies important?
Why is it important to learn from South African experiences?
What is the geographical context?
How do you use this guidance document?
What will you learn from this guidance document?
1. How did this guidance document come about?
The Desmond Tutu TB Centre (DTTC), situated in the Department of Paediatrics, Faculty of Medicine and Health Sciences at Stellenbosch University, has been implementing community-based HIV and tuberculosis (TB) programs since 2008 to improve access to HIV testing and linkage to care, as well as strengthen the integration of HIV and TB services.
Funding was received from PEPFAR (the President’s Emergency Plan for AIDS Relief), through the Centers for Disease Control and Prevention (CDC) to implement these programs. Working in collaboration with the health services, not-for-profit organizations (NPOs) and directly with communities, DTTC has gained experience in stakeholder engagement and learned best practices for collaborating with local organizations. Providing HIV-testing services, using alternative modalities, has provided a wealth of learning around integration of services and linkage to care for improved HIV and TB outcomes. In addition, we have learnt how to manage quality assurance (QA) for community-based HIV testing and gained practice in collecting relevant, high-quality data to monitor and evaluate these programs. In 2016, CDC South Africa approached the DTTC and requested that we consolidate our learnings and best practices into a guidance document to share with others involved in implementing community-based HIVprevention programs. This guidance document is the result of this request. It is a huge privilege to be able to share our experiences.
2. What makes this guidance document different?
This guidance document is different because it provides a practical perspective to implementing community-based HIV-prevention services. All the contributors have had direct experience in implementation at grassroots level and share practical lessons learned on the ground. Although based on specific experiences in a particular setting, the reader can easily adapt the information contained herein and apply it to their specific setting.
This guidance document is not prescriptive nor exhaustive. It aims to stimulate thinking and inspire the reader with practical and creative ways to address many of the challenges that exist when providing community-based HIV-prevention services.
3. Who will benefit from this guidance document?
Anyone can benefit from this guidance document, even though it is aimed at persons planning to implement community-based HIV-prevention services or wanting to carry out related community-based activities. There are many categories of personnel involved in the implementation of different aspects of community-based HIV-prevention programs and activities, including; program managers or coordinators, nurses, HIV counselors, community mobilizers, monitoring and evaluation officers, regulatory officers, quality assurance personnel, community liaison officers, managers and personnel at NPOs, data managers, data developers, human resource managers and trainers. All of these categories of personnel should derive direct benefit from this guidance document.
4. Why are community-based HIVprevention services important?
Many countries, including South Africa, have adopted the Joint United Nations Programme on HIV and AIDS (UNAIDS) ’90-90-90’ target, to end the AIDS epidemic (1). In terms of this target by 2020; 90% of all people living with HIV will know their HIV status, 90% of all people with diagnosed HIV infection will receive antiretroviral therapy (ART) and 90% of these people will be virally suppressed (2).
The vision is that everyone should have access to HIVtesting services (HTS) and each person living with HIV must be on treatment and reach viral suppression, so that no-one is born with or dies because of HIV (1).
See Figure 1.1.
Governments cannot fight the AIDS epidemic alone. Government healthcare facilities cannot test everyone for HIV. They also do not have the resources necessary to test and treat all HIV-infected people.
In addition, not all populations access healthcare facilities optimally (3). Many factors like long waiting times, unfriendly staff and stigma (4 - 7) have been cited as reasons why people do not access healthcare facilities, especially if they do not feel ill and do not recognize signs or symptoms of disease.
Some populations typically do not go to healthcare facilities, this includes men (8) because they regard these as female spaces and adolescents because they feel that health facilities are not youth friendly (9).
However, much of the progress around increasing the number of people who know their HIV status has been achieved inside healthcare facilities. This has been done using a provider-initiated approach (10).
Limited resources and the fact that not everyone feels comfortable when visiting a healthcare facility, provides opportunities for civil society to work with governments and other organizations, for example academic institutions, to bring the HIV epidemic under control. This highlights the important role that community-based HIV-prevention programs play in preventing HIV transmission using both providerand client-initiated approaches to find HIV-infected individuals and link them to care.
To learn more about the UNAIDS target, visit the following website, http://www.unaids.org/en/ resources/documents/2014/90-90-90
5. Why is it important to learn from South African experiences?
Globally, 36.7 million people were living with HIV in 2015 (12), of which 25.6 million were in sub-Saharan Africa (13), arguably the epicentre of the global epidemic. South Africa has the largest HIV burden, with 7 million people living with HIV in 2015, and the largest government antiretroviral program, with 3.3 million South Africans on treatment (14). South Africa has a generalized HIV epidemic because transmission mostly occurs between heterosexual couples (15). Estimated HIV prevalence is 18% among the adult population aged 15-49 years (16).
HIV prevalence is higher among females compared to males and among those who live along the periphery of the cities in informal dwellings compared to those who live in rural areas (17). Much of the HIV burden is among the poorest populations (18).
South Africa’s response to the HIV epidemic has evolved dramatically. Initially, in the 1990s, the South African government denied that HIV caused AIDS. The only way to prevent HIV transmission was to use condoms (19). In the early 2000s, scientific evidence showed that ART could prevent HIVinfected pregnant women from transferring HIV to their unborn babies (20). The health department reacted cautiously, stating that the drugs were toxic and that the health system did not have the resources to roll out a national prevention of motherto-child transmission (PMTCT) program across South Africa (20). Civil society responded by taking the government to the Constitutional Court, which ruled that withholding the provision of PMTCT was a human rights violation (20). PMTCT was slowly rolled out from 2002 onwards (21). Transmission of HIV from mother to child subsequently dropped from 8.5% in 2008 (22) to 2.4% in 2012 (23).
With the appointment of a new President and Health Minister in 2009 (24), the government’s response to the HIV epidemic became more urgent. South Africans were advised to test for HIV and “know their status”. After a national HIV-testing campaign (2010/2011), the proportion of adults ever tested for HIV increased from 43.7% in 2010/11 to 65.2% in 2012 (25), with many adults tested at communitybased HIV-testing services.
Between 2006 and 2011, ART provision was expanded, largely due to increased funding from international donors. This funding was largely distributed through non-governmental organizations (26), highlighting civil society’s role in the expansion of ART coverage in South Africa. The Department of Health also played a role in expanding the ART program, by constantly increasing the eligibility criteria for HIV treatment, making ART available to more and more HIV-infected individuals. The CD4 threshold was continually increased to allow for those with higher CD4 counts to be eligible for treatment (22, 27, 28). In September 2016, South Africa started offering ART to all people living with HIV, regardless of CD4 count (16).
South Africa’s response to the HIV epidemic, initially slow, but becoming progressively more determined, with constant changes in policy and substantial progress made in the prevention and treatment of HIV, together with the continual interactions between government and civil society (29), makes South Africa a unique case study. Experiences shared and lessons learned from the South African experience will be valuable as the global village works toward ending the HIV epidemic by 2020 (30). Civil society needs to continue their role in fighting this epidemic, and to continue to assess the needs of communities and implement programs that make a difference in the lives of individuals infected and affected by HIV.
6. What is the geographical context?
This guidance document uses the experiences gained and lessons learnt during the past nine years, working in community-based HIV-prevention. Most of the contributions come from valuable experience gained in implementing three independent communitybased HIV-prevention projects funded through the CDC namely a community-based TB-HIV Integration project (2008-2012); the Community HIV/AIDS Prevention Project (COMAPP) (2011-2017) and the intervention component of the HIV Prevention Trials Network (HPTN) 071 Population Effects of Antiretroviral Therapy to Reduce HIV Transmission Trial (PopART), which is a combination HIV-prevention package (2014-current). The community-based HIVtesting services referred to in this guidance document were implemented in the Cape Town Metro District and the Cape Winelands District of the Western Cape Province of South Africa.
The Cape Town Metro District, is a PEPFAR priority district because of the estimated 177 285 people living with HIV in the district (16). HIV prevalence amongst women attending antenatal clinics in this district has increased from 18.2% in 2009 to 20.4% in 2014. Across the eight health sub-districts, HIV antenatal prevalence ranges from 8.8% to 34.7% (31). ART coverage is approximately 79% (16). The Cape Winelands is a semi-rural district outside Cape Town. It consists of five health sub-districts, where HIV antenatal prevalence ranges between 5.4% and 19.8% (31).
HIV burden is unequally distributed within health districts. The highest burden is found in urban informal communities, which are densely populated with both formal and informal (shack) dwellings.
These communities are characterized by many social injustices including high levels of poverty, crime, unemployment and substance abuse. It is within these communities that these projects were implemented and where many of the valuable lessons were learned and the many successes realized. The experiences, practices and skills learned within these settings form the basis of the information contained within this guidance document.
7. How do you use this guidance document?
This guidance document is designed to provide the reader with thought-provoking information in a format that is stimulating, inspiring and motivating.
Each chapter contains:
• An Introductory passage that provides an understanding of why the chapter is important within the context of community-based HIVprevention services.
• Contents that show what is included in the chapter.
• Text written from multiple perspectives; including the implementer, the health services, the NPO and the end-user (the client).
• Photographs that illustrate many of the actual activities and interventions discussed.
• Case studies that illustrate actual examples from our experiences.
• Tips that provide useful, practical information.
• Did you know boxes that explain related concepts.
• Links to websites that provide additional reading.
• Cross-referencing between chapters that allows the reader to obtain a complete understanding of a specific topic from various perspectives.
What else does this document contain?
• Tools & training materials form part of the appendices. Users of this guide are welcome to use these tools and adapt them within their own programs.
• Audiovisual representation of the key aspects of each chapter.
8. What will you learn from this guidance document?
The successful implementation of any communitybased service is usually dependant on what we do prior to program implementation, including the way in which we engage with various relevant stakeholders.
Chapter 2: Stakeholder Engagement aims to ensure that the reader understands how to engage with stakeholders, both before and during program implementation, providing important guidance and many tools to ensure successful stakeholder collaboration. Community-based approaches, often led by local NPOs, provide services outside of healthcare facilities, closer to where people live, work and go to school. Chapter 3: Collaborating with not-forprofit organizations provides valuable information around how to collaborate with NPOs to provide HIV-prevention services, in a manner that also builds capacity within the NPO for program sustainability.
No program can be successful without well-trained, highly motivated and healthy staff. Chapter 4:
Creating, Equipping and Sustaining a Team aims to give the reader insight into how to recruit, train, motivate and support staff to build and sustain an effective team that can implement a successful HIV-prevention program.
Community-based HIV services can reduce the cost and time expended on travelling to health services as well as long waiting times in facilities for the client (5). Community-based modalities potentially overcome some of the barriers that prevent people from accessing a healthcare facility. Chapter 5:
Delivering Holistic Client-Centered Services will explore different community-based service delivery modalities, highlighting the advantages and the challenges posed by each modality, in terms of populations reached, HIV yield and linkage to care.
Sharing best practices and providing the reader with useful tips, this chapter also discusses how to integrate related health services into communitybased HIV-testing services (CB HTS). Chapter 6:
Linkage to HIV Care and Treatment addresses the important aspect of linking people diagnosed with HIV in a community setting to HIV care and treatment provided within a healthcare facility. This chapter addresses why linkage to care is a crucial step within the HIV-testing process, it details many of the reasons why people do not link to care and then describes practical ways to improve linkage to HIV care from a community-based HIV-testing service.
In addition to service delivery, many other programmatic aspects form part of a successfully implemented community-based HIV-prevention program.
Quality Assurance (QA) for any HIV-testing program is extremely important and Chapter 7: Quality Assurance for HIV rapid testing provides important strategies and practical activities to enable community-based programs to deliver HIV-testing services that are of high quality and consistently deliver accurate HIV-test results. Data management is also a key aspect of any HIV-prevention program.
Chapter 8: Managing Data provides the reader with all the necessary information to make informed decisions to set up a data-management system that is appropriate and to ensure data collection that is relevant, of high quality and timely. Using case studies, this chapter describes how geographical mapping can be used as an alternative way to represent the data visually. Chapter 9: Monitoring and Evaluation is dedicated to monitoring and evaluation (M&E), which forms an integral part of any program. This chapter provides guidance to how to collect data to monitor HIV-prevention services and evaluate the outcomes.
We trust that this guidance document will provide inspiration and motivation as you successfully implement and manage your community-based HIVprevention program and therefore “Do your little bit of good where you are”.