After persistent calls from activists,1 the Global Plan Towards the Elimination of New HIV Infections Among Children by 2015 and Keeping Their Mothers Alive (the Global Plan) made specific commitments to prioritizing women's health and community engagement as essential facilitators of programs for the comprehensive prevention of vertical transmission (The term “prevention of vertical transmission” is used whenever possible, in keeping with developing usage among communities of people living with HIV).2 The Global Plan placed particular emphasis on engaging women living with HIV.2–4 Although community engagement has been identified as a promising practice for achieving the goals of the Global Plan, its prioritization and integration into national implementations of the Global Plan remains woefully inadequate.
Greater access to treatment within prevention of vertical transmission programs has facilitated a 45% decline in AIDS-related deaths among women of reproductive age and 60% fewer new infections in children (aged 0–14 years) in Global Plan countries; however, pediatric treatment access remains a significant challenge, with 49% of children who needed treatment unable to access it in 2015.4 Critically, the Global Plan resulted in only “marginal progress” toward the prevention of new HIV acquisitions among women.5–7 In particular, the incidence of new HIV acquisitions among adolescent girls and younger women, especially in Eastern and Southern Africa, remains worryingly high.
Women living with HIV face a daunting set of barriers to accessing the treatment, care, and support that they and their children need. Obstacles include stigma, discrimination, increased vulnerability to gender-based violence, human rights violations, physical violence in healthcare settings, and denial or delay of needed services.8,9 As of 2015, more than half of Global Plan priority countries were failing to meet family planning needs “among at least 25% of all married women.”6 Unmet need for family planning is even greater for unmarried and younger women, for whom harmful and outdated gender norms pose additional obstacles to access to reproductive health care.6 Maternal mortality among women living with HIV remains disproportionate10: globally, women living with HIV are 7–8 times more likely to die during pregnancy and the postpartum period than their HIV-negative peers.11 For women living with HIV from key populations, including women who do sex work or women who use drugs, these obstacles increase exponentially. Overall, these persistent impediments adversely affect program uptake and treatment adherence, and they result in loss to follow-up in programs for the prevention of vertical transmission.6
Community engagement has been recognized as a uniquely effective strategy to address these and other challenges, and it has been cited for its potential to foster comprehensive and rights-based programs to prevent vertical transmission. UNAIDS has identified community engagement as a practice that can increase uptake of prevention of vertical transmission services, create an enabling environment for scale-up, and improve the supply of these services.12 For people living with HIV, however, effective community engagement is more than a strategy to achieve clinical benchmarks: it is a manifestation of the right to be involved in decision-making and programming that directly affects their lives (Greater involvement of people living with HIV (GIPA) and meaningful involvement of people living with HIV (MIPA) are principles that aim to realize the rights and responsibilities of people living with HIV, including their rights to self-determination and participation in the decision-making processes that affect their lives.13,14
Communities engage and contribute to prevention of vertical transmission programming in diverse and evolving ways: “there is no one-size-fits-all approach to community engagement.”12 Effective community engagement requires “a rights-based, capacity-building approach and sustained financial and technical investment.”12 This article examines a small selection of community engagement practices in 3 key areas: (1) as an accountability tool, (2) in service delivery, and (3) as a facilitator of human rights.
THE GLOBAL PLAN'S PROMISE OF COMMUNITY ENGAGEMENT
Long before the advent of the Global Plan, networks of women living with HIV had been undertaking successful, yet largely voluntary or underresourced, community engagement activities. Innately aware of the necessity of strong community engagement, networks of people living with HIV played a key role in demanding its prioritization within the Global Plan.1 At the start of the Global Plan in 2011, a study by 3 global networks found that civil society, and particularly women living with HIV, were rarely engaged in national-level planning; when women were engaged, their engagement was frequently tokenistic.15 In this instance, “tokenistic” (or “tokenization”) means that women were not substantively engaged and that their input was not prioritized nor taken seriously. For example, women were invited at short notice and were not supported to engage meaningfully in the planning process. As a result, the effort at engagement did not ultimately lead to the improvements sought by women.
The Global Plan highlighted the critical role of community engagement and the vital role that women living with HIV must play in successful programs for the prevention of vertical transmission. The Global Plan's core principles sought to ensure that “the process of developing and implementing programmes must include the meaningful participation of women, especially mothers living with HIV, to tackle the barriers to services and to work as partners in providing care,” and it called for “greater community engagement in HIV and other health service delivery and program monitoring.”2 To accomplish this, the Global Plan called on countries to “strengthen the capacity of communities, especially networks and support groups of women living with HIV, to increase their ownership of and participation in outreach activities and service delivery.”2 It sought to “involve community at all levels of planning, implementation, and monitoring of programmes to increase the demand for and use of services, as well as follow-up support for programmes for prevention of mother-to-child transmission of HIV and maternal, newborn, and child health services” and to “create a more supportive environment for meeting family planning needs, providing infant care, and reducing HIV-related stigma and discrimination.”12
COMMUNITY ENGAGEMENT: ACCOUNTABILITY IN ACTION
Civil society and networks of people living with HIV have proven adept at monitoring services to prevent vertical transmission and demanding political commitment. Many community-monitored and community-led programs have provided higher quality services with lower absenteeism rates than comparable programs that feature less community accountability. Similarly, sustained community advocacy has proven to be a fundamental strategy for ensuring sufficient political commitment to create enabling environments that reflect the priorities of the communities receiving services for the prevention of vertical transmission.12
At the global level, evidence of the efficacy of community engagement and community-led advocacy to demand engagement has prompted greater inclusion of communities in specific global policy-making structures, including the Global Plan Global Steering Group, the Interagency Task Team for the Prevention and Treatment of HIV Infection in Pregnant Women, Mothers, and Children (IATT), and the Global Validation Advisory Committee (GVAC). (Box 1, Demanding Accountability). In addition, women living with HIV have been engaged in the development of World Health Organization (WHO) guidelines on various aspects of HIV treatment, care, and support.16
BOX 1.Demanding Accountability
The Interagency Task Team for the Prevention and Treatment of HIV Infection in Pregnant Women, Mothers, and Children (IATT) Community Engagement Working Group has expanded the original concept of community accountability as envisioned in the Global Plan, moving from “community charters” to a more comprehensive definition that reflects the diverse range of mechanisms used by community groups and governments to ensure accountability in the provision of services to prevent vertical transmission. Furthermore, the development of 2 proposed indicators for measuring community engagement in services at the national and district levels are intended to encourage improvements in coverage and the quality of service provision. These indicators include the “existence of a national programme review for the annual prevention of mother-to-child transmission progress report that includes community participation” and the “percentage of health facilities with community accountability mechanisms in place to support service improvement efforts” that are in place at the district or provincial level. Several governments have expressed an interest in these indicators, which will soon be piloted in Côte d'Ivoire. However, the successful implementation of these indicators will ultimately depend on political will and governmental support for communities to become fully engaged in accountability and planning.
At the country level, women living with HIV have demanded substantive engagement in policy-making forums (such as technical working groups) and in national planning efforts, including the development of Global Fund concept notes. More governments are including community engagement in their monitoring and evaluation programs as a measure of programmatic success. (Box 2, Mobilizing Community Voices). Despite this initial progress, women living with HIV continue to lack meaningful engagement in many processes, meaning their perspectives and expertise are not prioritized or taken seriously, and their engagement does not result in the improvements urgently sought by women.
BOX 2.Mobilizing Community Voices
World Vision's Citizen Voice and Action (CVA) is a social accountability approach that transforms the dialog between community members and government service providers to improve services such as health and education that impact the daily lives of children and their families. Since 2005, hundreds of local government services have been transformed by the hard work of communities implementing CVA. At the Kasensero Health Centre II in Rakai District in southwestern Uganda, CVA has resulted in improved program quality and uptake. The project included the formation of a family support group at the health center, where mothers living with HIV and their partners meet monthly, and it included health workers providing health education on HIV and prevention of vertical transmission, as well as peer counseling.
The key purpose of this group was to undertake a facilitated assessment of the quality of services and to raise issues critical to community members. The concerns raised in the first implementation included the lack of a maternity unit and placenta pit, as well as the lack of modern lighting system/electricity, which affected patients during the night. In a participatory process, issues raised by the community members were shared with the local government leaders, and action plans were agreed upon. The community process and advocacy resulted in the development of a maternity room and delivery bed at the health facility that could be used to conduct safe deliveries. Furthermore, advocacy resulted in the construction of a placenta pit and the connection of electricity to the health center.
One of the women who participated in the process from the community said “if you had to be attended to in the night, you had to come with your own kerosene lantern, but after the gathering, our leaders were able to know our challenges, and they helped us and connected electricity to the health centre.”
The program had some unanticipated benefits beyond program improvements, for example, increased demand: antenatal clinic attendance increased from an average of 25 women per month to 40 women per month after the CVA gatherings.
The extent and quality of the engagement and involvement of women living with HIV has been most problematic at the country level, where a lack of adequate community engagement has led to low levels of retention in care. For example, participants in research on Option B+ in Uganda and Malawi by the Global Network of People Living with HIV (GNP+) and the International Community of Women Living with HIV (ICW) indicated that the lack of involvement of women living with HIV in the introduction and implementation of Option B+ led to a virtually mandatory program that did not respect the autonomy of women or take into account their perspectives and treatment desires. This, in turn, led to low uptake, poor adherence, and loss to follow-up.17
COMMUNITY ENGAGEMENT: IMPROVING UPTAKE AND ADHERENCE
There is a great deal of evidence that peer support and the engagement of communities in service delivery improve outcomes related to testing, treatment uptake, and adherence to treatment—all of which are essential to preventing vertical transmission of HIV.18 Peer support, which has been identified as a promising practice, includes a variety of community-based services provided by people living with HIV, such as peer counselors and peer support groups. The services provided range from home-based care and support in accessing testing (including at-home testing) to the collection of medicines and counseling for coping with test results and treatment adherence. These community mechanisms are critical for supporting a person's needs in ways that facilities cannot or do not efficiently provide because of their lack of capacity to understand the realities of women living with HIV.19
Community engagement has also had success in addressing seemingly intractable problems such as gender-based violence, which is both a cause and a consequence of HIV. For example, SASA!—a community mobilization intervention in Kampala, Uganda—works with entire communities to facilitate norm and perception changes with the goal of preventing intimate partner violence (IPV) and reducing HIV risk behaviors. A cluster randomized controlled trial found that the SASA! program not only succeeded in lowering acceptance of IPV among men and women and increasing acceptance that women can refuse sex, but that it also lowered the number of experiences of physical and sexual IPV against women.20
Another example is Stepping Stones—a collection of training curricula grounded in local knowledge, experience, and context—that engages specific peer groups within communities to collectively challenge gender norms. In an implementation project in South Africa, the program was shown to be “effective in reducing sexual risk taking and violence perpetration among young, rural African men,” and up to 2 years after Stepping Stones' intervention, participants had 15% fewer new HIV infections compared with a control group.21 Another implementation of Stepping Stones, which combined the gender transformative program with an economic empowerment program, was shown to “strengthen livelihoods, improve gender relations, reduce violence, and improve mental health among young people in South Africa's informal settlements.”22
The importance of community-based and peer support–driven interventions for effective HIV programs is increasingly recognized.21 In Kenya, a randomized evaluation found that community-based care delivered by people living with HIV could replace clinic-based HIV care, as community-based care by people living with HIV resulted in clinical outcomes similar to those of usual care with only half the number of clinic visits.23 Another study found that a model of antiretroviral treatment delivery in western Kenya that shifted patient monitoring and antiretroviral dispensing tasks into the community, where it was facilitated by people living with HIV, was both acceptable and feasible.24
From the start of the HIV epidemic, people living with HIV have organized themselves into networks to provide a wide variety of services, including support groups and treatment literacy, with little financial backing (Box 3, Strengthening Treatment Literacy). This work increased awareness of and demand for vertical transmission services and supported retention in care. Program participants and networks of women living with HIV have emphasized the need to ensure that the programs are led and implemented by mothers living with HIV and that peer support programs are adequately funded to compensate women for their time, labor, and expertise.
BOX 3.Strengthening Treatment Literacy
A bedrock of the HIV response has been community-led treatment literacy programs, which help to reduce stigma, inform and empower those recently diagnosed, and support adherence and retention in care. However, the Global Plan has not facilitated increased funding for such treatment literacy programs, and there is a shortage of up-to-date accessible resources. In direct response to a call by communities for evidence-based resources, GNP+ and ICW (with support of the IATT) recently launched Positive Health, Dignity, and Prevention for Women and Their Babies: A Treatment Literacy Guide for Pregnant Women and Mothers Living With HIV.25 Women living with HIV from 8 countries helped shape the content and design of the guide to ensure a clear, accurate, and accessible tool for use by the community. The guide is made up of a pictorial flipchart, a facilitator manual, and a poster, and it is intended for use by networks of women living with HIV, women's groups, peer educators, and others who wish to provide information and guidance to support women living with HIV before, during, and after their pregnancy. Given the widespread concern regarding low retention levels among pregnant and breastfeeding women, there is an urgent need to ensure greater investment in treatment literacy programs and the rollout of toolkits such as this.
The mothers2mothers (m2m) Mentor Mother Model, particularly when implemented by mothers living with HIV, is recognized as a promising practice that incorporates facility-to-community–based services using peer mentors (Facility-to-community–based services are defined as a “formalized connection between a health facility and the communities it serves to support improved health outcomes.”).26 “Mentor mothers” are placed at health facilities in communities affected by HIV to support uptake and quality of clinical services and to improve linkages to care and treatment. An external evaluation in 2014 of the m2m Mentor Mother Model as implemented under the STAR-EC program in Uganda found that the m2m-supported health facilities had a greater increase in utilization of prevention of vertical transmission services—especially linkages to and retention in care—and a lower final vertical transmission rate than matched control health facilities. Comparable outcome and impact results were observed in Kenya, where women experienced greater psychosocial support, improved breastfeeding results, and increased uptake and adherence rates for prevention of vertical transmission services than those in facilities with no mentor mother program.27
In Malawi, services provided by mentor mothers also have proven to support women with accessing and remaining in care. Despite this, their integration into facilities and the roles they play have been uneven and varied across facilities. It is possible that with better strategic positioning inside facilities and increased integration into health systems, mentor mothers can provide better counseling, education, and support than the rushed services that clients often experience in standard care.28
Additional examples of effective mentor mother programs led by women living with HIV include The Mama's Club in Uganda, a psychosocial support group for women living with HIV that encourages women to discuss experiences of stigma and discrimination and supports them in overcoming barriers to accessing HIV services.29 The Positively UK's Mentor Mother Program, which successfully uses trained volunteers to complement and reinforce medical advice on preventing vertical transmission of HIV, has been found to have a “multidimensional positive impact” on the emotional well-being of mothers living with HIV.30 Evidence of the effectiveness of such mentor mother approaches is encouraging: it underscores the value of models of care that integrate facility-based and community-based service delivery from women living with HIV with lived experience who can provide support and inspiration to those newly diagnosed.
Community Health Workers
Evidence suggests that engaging community health workers leads to outcomes that are equivalent to clinic-based or facility-based interventions and that it may even improve outcomes, such as uptake of prophylaxis or antiretroviral therapy, early testing of infants, initiation of antiretroviral therapy, and the retention in care of both mothers and children living with HIV.31 For example, after the introduction of community health workers, the Tingathe program in Malawi reported improvements in maternal antiretroviral medicine and antiretroviral therapy coverage, DNA polymerase chain reaction testing rates, and antiretroviral therapy initiation among HIV-exposed infants.32
In Zimbabwe, a cohort study following 704 lactating women and their infants for 1–12 months after delivery found notable increases in the uptake of essential services in the group that received support from voluntary village health workers. Mothers living with HIV who were visited by these village health workers were 24% more likely to be registered at an antiretroviral therapy clinic compared with mothers who were not visited; they also were twice as likely to receive cotrimoxazole prophylaxis and 13% more likely to have their infants tested for HIV.33 Similarly, the Community Register Project in Zambia engaged trained voluntary lay workers to follow up with women living with HIV and provide information and adherence support. After 3 years of implementation, “92% of women living with HIV were receiving [antiretroviral medicines], and 9230 infants received early infant diagnosis within the first 12 months of life, up from 442 in 2008.”34 However, volunteer programs such as this have been strongly criticized because they rely on the unpaid labor of women, and frequently in the context of the prevention of vertical transmission, the labor of women living with HIV.35
COMMUNITY ENGAGEMENT: HUMAN RIGHTS
By maintaining a strong focus on women's health, the Global Plan has contributed to a shift in the understanding of the relationship between human rights and successful efforts to prevent the vertical transmission of HIV.33 The shift results from the greater recognition of the role and value of community engagement, particularly from women living with HIV, in the creation of an enabling environment and the identification and documentation of human rights abuses (Box 4, Documenting Stigma)
BOX 4.Documenting Stigma
A key example of community engagement in documentation of human rights abuses is the People Living With HIV Stigma Index,36 developed by ICW and GNP+ as a tool to be used by and for people living with HIV. The Index can be used to document and understand experiences of stigma and discrimination experienced by people living with HIV. Stigma Index data collected in over 65 countries and from structured interviews with more than 65,000 people living with HIV revealed that 10%–40% faced denial of care by health providers.37
The Stigma Index enables people living with HIV, their networks, and their communities to document and aggregate hard-to-quantify lived experiences of stigma and discrimination to strengthen advocacy for improved policy and programs. The findings provide unique insights into the perspectives and understandings of women living with HIV. For example, the Stigma Index conducted in Ghana in 2014 revealed that despite the relative success of Ghana's program to prevent vertical transmission (Ghana has a strong program to end vertical transmission of HIV. By 2015, nearly two-thirds of pregnant women living with HIV were receiving antiretrovirals to stop vertical transmission, up from a quarter in 20094), nearly a quarter of survey participants expressed significant fear of having a child after HIV diagnosis and experienced “sheer uncertainty” regarding how to approach pregnancy and whether to avoid it completely.38
This focus on ensuring that vertical transmission services are delivered within a human rights–based approach—namely that they are grounded in evidence-based strategies, prioritize the participation of affected populations, and are held accountable—have been reflected in key global frameworks, such as the UNAIDS 2016–2021 Strategy,39 WHO guidelines and Elimination of mother-to-child transmission (EMTCT) of HIV and syphilis validation process, the Global Fund Strategy 2012–2016,40 and the new human rights reporting mechanism of the Global Fund. The Global Fund includes an objective on gender equality and human rights, along with a subobjective to “support reproductive, women's, children's, and adolescent health, and platforms for integrated service delivery.”41
For women living with HIV, experiences of stigma, discrimination, abuse, and institutional violence often occur in the context of seeking maternal health care.42,43 Experts have described 7 major categories of disrespect and abuse that women can encounter during maternity care: physical abuse, nonconsenting clinical care, nonconfidential care, undignified care (including verbal abuse), discrimination based on specific patient attributes (HIV status, abandonment, or denial of care), and detention in facilities.44 Key populations—including women who do sex work, women who use drugs, young women, and indigenous women—face compounded and intersecting hardships when seeking access to services to prevent vertical transmission.45 The Global Plan itself failed to account for the unique needs of key populations of women in accessing prevention of vertical transmission services, and the challenges facing these women in particular remains a major gap in efforts to scale-up services, both in terms of focus and investment.2
Networks of women living with HIV, such as ICW, have been at the forefront of efforts to identify, document, and seek justice for human rights violations experienced by women living with HIV. Notably, these networks were the first to identify the practice of forced and coerced sterilization. The Namibia Women's Health Network, an ICW member, brought a globally recognized lawsuit to demand an end to the practice of forced and coerced sterilization on behalf of women who had experienced involuntary sterilization, and it won compensation for them.46 Comparable litigation has been filed in Kenya,47 and recent research by ICW Eastern Africa has found that this practice continues in Uganda.48 Women living with HIV have borne the burden and the risk of calling attention to human rights violations, yet their efforts to address rights violations that undermine the success of the HIV response have not received commensurate support and funding.
Beyond a Solely Clinical Validation of EMTCT: Human Rights, Gender Equality, and Community Engagement
In 2015, the WHO established a process for validating and certifying the work and achievements of countries that have virtually eliminated vertical transmission of HIV.49,50 In addition to focusing on clinical benchmarks that are conventionally the hallmark of validation of disease elimination, WHO approached ICW and GNP+ to develop an innovative set of minimum standards for community engagement, human rights, and gender equality. The objective was to create a tool for evaluating whether countries seeking validation had met a baseline of nonnegotiable human rights standards and to gauge progress made toward achieving gender equality and integrating community engagement in their efforts to end vertical transmission of HIV. Both the tool and the process of data collection were designed to facilitate community engagement in monitoring and evaluation of national programs to prevent vertical transmission.
In 2015, Cuba became the first country to be validated under WHO's validation scheme and to use the tool through a community process to evaluate their program to prevent vertical transmission. WHO noted that the validation process “paid particular attention to the upholding of human rights, in order to ensure that services were provided free of coercion and in accordance with human rights principles.”51 More recently, Armenia, Belarus, the Republic of Moldova, and Thailand have been validated, and approximately 81 more countries are in position to undertake the validation process.
This validation framework represents an important opportunity to protect and promote human rights in prevention of vertical transmission settings. Validation of EMTCT represents the first time these dimensions have been considered as factors in the validation of whether a country has eliminated a disease (ie, smallpox or polio). Supporting civil society—and women living with HIV in particular—with efforts to document human rights abuses and engaging them directly in the validation process is essential to ensuring the integrity of the results and the avoidance of “rubber stamping” human rights violations in the quest for validation. Despite greater recognition of the correlation between human rights and outcomes for the prevention of vertical transmission, there remains a serious lack of human rights reporting mechanisms in programming. Furthermore, resources available to civil society for supporting this essential task are extremely limited.52
A key lesson of the Global Plan is that, simply put, community engagement works well as a strategy to improve health outcomes and quality of health services, and it is worthy of prioritization and urgent investment. The largely untapped potential impact of well-executed and sustainable community engagement, particularly that of women and other people living with HIV, should not be underestimated.53 Community engagement must be amplified to accelerate the progress begun by the Global Plan.
To maintain hard-won successes and fully realize the promise of the Global Plan, governments and other key stakeholders must do the following:
- Prioritize and facilitate community engagement—particularly of women living with HIV (including those from key populations)—in national HIV response planning, implementation, monitoring, and evaluation.
- Increase investment in and support for community-based interventions, expand peer-led programs, and ensure community-led work is adequately compensated and not expected to be voluntary.
- Support the essential role of community and networks of women living with HIV in the documentation of human rights violations.
- Commit to prioritizing human rights and accountability mechanisms, and engage communities in those processes, including the WHO elimination of vertical transmission validation process.
The lived experiences of women living with HIV as recipients of (and participants in) services to prevent vertical transmission provides a framework for best community engagement practices, and they suggest the way forward. Until the use of community engagement efforts as accountability tools, methods of service delivery, and facilitators of human rights receives adequate scale-up and investment, efforts to eliminate vertical transmission of HIV will continue to fall short of Global Plan targets.
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