pdf - complete supplement - Journal of the International AIDS Society

Transcription

PEER-REVIEWD
ONLINE HIV/AIDS JOURNAL
HIV/AIDS JOURNAL
OPEN ACCESS
ONLINE
ONLINE
ONLI
OPEN ACCESS
PEER-REVIEWDHIV/AIDS JOURNAL
N ACCESS
ACCESS
ONLINE
PEER-REVIEWD
AIDS JOURNAL
EN ACCESS
HIV/AIDS JOURNAL PO
OPEN
PEER-REVIEWD
HIV/AIDS JOURNAL
HIV/AIDS JOURNAL PEER-REVIEWD
ONL
NLINE
R-REVIEWD
HIV/AIDS JOUR
ONLINE HIV/A
HIV/AIDS JOURN
OPEN ACCE
HIV/AIDS JOURN
-REVIEWD
PEER-REVIEW
URNAL
HIV/AIDS JOURNAL HIV/AIDS JOURNAL
PEER-REVIEW
Community action to end
paediatric HIV infections
OPEN ACCESS
OPEN ACCESS
PEER-REVIEWD
ONLINE
Guest Editor: Linda Richter
Supplement Editor: Shirin Heidari
HEALTH ACTION
EQUITY COMMUNITY PEERS
CHILDREN
PARTICIPATORY COMPREHENSIVE
ENGAGEMENT
EVIDENCE-BASED
FAMILIES WOMEN
SUPPORTIVE ENVIRONMENT CARE
HIV TRANSMISSION
Volume 15, Supplement 2
July 2012
Scan this QR code with
your mobile device to view
the supplement online
Community action to end
paediatric HIV infections
Guest Editor: Linda Richter
Supplement Editor: Shirin Heidari
Contents
Foreword: Community action to end new paediatric HIV infections
Michel Sidibé and Eric P Goosby
Editorial: Community action: to end paediatric HIV infections
Linda M Richter
Lessons learnt from promising practices in community engagement for the elimination of new HIV infections in children
by 2015 and keeping their mothers alive: summary of a desk review
Laurie Ackerman Gulaid and Karusa Kiragu
The Tingathe program: a pilot intervention using community health workers to create a continuum of care
in the prevention of mother to child transmission of HIV (PMTCT) cascade of services in Malawi
Maria H Kim, Saeed Ahmed, W Chris Buck, Geoffrey A Preidis, Mina C Hosseinipour, Avni Bhalakia, Debora Nanthuru,
Peter N Kazembe, Frank Chimbwandira, Thomas P Giordano, Elizabeth Y Chiao, Gordon E Schutze and Mark W Kline
Community strategies that improve care and retention along the prevention of mother-to-child transmission of
HIV cascade: a review
Yabsera Marcos, Benjamin Ryan Phelps and Gretchen Bachman
Involving fathers in prevention of mother to child transmission initiative – what the evidence suggests
Lorraine Sherr and Natasha Croome
The importance of addressing gender inequality in efforts to end vertical transmission of HIV
Elena Ghanotakis, Dean Peacock and Rose Wilcher
Facilitating HIV testing, care and treatment for orphans and vulnerable children aged five years and younger through
community-based early childhood development playcentres in rural Zimbabwe
Diana Patel, Priscilla Matyanga, Tichaona Nyamundaya, Delia Chimedza, Karen Webb and Barbara Engelsmann
Qualitative interviews with mentor mothers living with HIV: potential impacts of role and coping strategies
Lebohang Dhlamini, Lucia Knight, Heidi van Rooyen, Alastair van Heerden and Mary Jane Rotheram-Borus
Community voices: barriers and opportunities for programs to successfully prevent vertical transmission of HIV identified
through consultations among people living with HIV
Ginna Anderson, Georgina Caswell, Olive Edwards, Amy Hsieh, Beri Hull, Christoforos Mallouris, Naisiadet Mason and Christiana Nöstlinger
Community-based approaches for PMTCT in resource-poor settings: a social ecological review
Joanna Busza, Damilola Walker, Alana Hairston, Alicia Gable, Christian Pitter, Stephen Lee, Leila Katirayi, Rogers Simiyu and Daphne Mpofu
Expanding the role of community mobilisation to accelerate progress towards ending vertical transmission of HIV in Uganda:
the Networks model
Gitau Mburu, Kate Iorpenda and Fred Muwanga
Language, identity and HIV: Why do we keep talking about the responsible and responsive use of language? Language matters
Sophie Dilmitis, Olive Edwards, Beri Hull, Shari Margolese, Naisiadet Mason, Angelina Namiba, Moono Nyambe, Susan Paxton, Silvia Petretti,
Gracia Violeta Ross, Alice Welbourn and Anna Zakowics
The publication of this supplement was supported by The Coalition for Children Affected by AIDS and its funder-members. We are
especially grateful to funding from the Swedish International Development Agency and the Norwegian Agency for Development
Cooperation for their support.
Volume 15, Supplement 2,
July 2012
http://www.jiasociety.org/index.php/jias/issue/view/1459
Sidibé M and Goosby EP. Journal of the International AIDS Society 2012, 15(Suppl 2):17995
http://www.jiasociety.org/index.php/jias/article/view/17995 | http://dx.doi.org/10.7448/IAS.15.4.17995
Foreword
Community action to end new paediatric HIV infections
Rebecca Awiti and her partner live in Nairobi’s Kibera slums. Both are HIV positive like many of their neighbours. Still, they dreamed of having a
healthy child together. Before Rebecca conceived, her doctor referred her to the Prevention of Mother-to-Child Transmission (PMTCT) programme
at Kenyatta National Hospital. Clinicians provided her with antiretroviral therapy, which can prevent babies contracting HIV from their parents 98%
of the time. Today, the couple are proud parents of healthy, HIV-negative four-year-old triplets. Rebecca now also works for a non-profit
organization called Women Fighting AIDS in Kenya (WOFAK).
This special issue of the Journal of the International AIDS Society is dedicated to looking at how community action can contribute to making sure that, by 2015, no children will be born with HIV, including those living in the poorest countries. Preventing
HIV transmission from mother to child is possible, but only if everyone is fully committed to taking joint action and working together, including
affected couples, families and communities. Articles in this issue have been peer-reviewed by academic scholars, and nine HIV-positive women
from different countries were invited to review the articles and provide their perspective.
The world has an unprecedented opportunity to make new HIV infections among children history. In 2010, 390,000 children became newly
infected with HIV globally, and an estimated 37,000 pregnant women died as a result of AIDS-related causes. In contrast, in high-income
countries the number of new HIV infections among children and AIDS-related maternal and infant mortality was virtually zero. However, despite
significant progress in scaling up prevention of mother-to-child transmission interventions, in low- and middle-income countries, few women,
their partners and their children can readily access them. And few parents have the possibility to utilize follow-up care after their babies are
born. This inequity must change. The life of a child and a mother has the same value, irrespective of where they and their families live.
At the 2011 United Nations High Level Meeting on AIDS, world leaders committed to work together to achieve the goal of virtual elimination.
The target of Countdown to Zero: Global Plan Towards the Elimination of New HIV Infections Among Children by 2015 and Keeping their Mothers
Alive represents a 90% reduction in the number of new HIV infections among children and a 50% reduction in AIDS-related deaths among
pregnant women. The full engagement of people living with HIV, their families and communities they live in is essential to reaching these goals.
Empowering and mobilizing communities are key to accelerating the demand for and utilization of PMTCT services. Community engagement and
support can help women and their partners overcome stigma and discrimination, which are often a key barrier to women’s access to care and
their retention in care. For many women, getting to know those who are in similar situations and receiving support from each other can be a
source of inspiration during difficult times. Meaningful participation of communities to end vertical transmission helps women feel more
accepted, empowered and safe. Globally, numerous community-based groups provide support to pregnant women living with HIV, as well as
their families. The type of community support may vary, but the results do not. Women who have the support of their community are far more
likely to seek HIV prevention and care services, both for their benefit and their children’s.
Programmes for orphans and vulnerable children have also built a broad and deep platform within communities to respond to vulnerability of
children and their households and to reduce their likelihood of contracting HIV. These programmes have been integrated into communities and
families, promoting resilience and reducing adversity, and providing services and systems that reach people where they live. The programmatic
platform for vulnerable children has helped to bring HIV prevention, treatment and care closer to those in need.
Community mobilization is critical to ensure that the programmes are relevant to local environments and that all resources are drawn from the
community, including midwives, mentor mothers and other women living with HIV, peer educators and community health workers. Social
accountability mechanisms, such as voluntary agreements between community members and service providers, can improve quality of care.
Experience shows that these mechanisms can empower users and providers to become more actively engaged in how healthcare services are
managed and delivered, while building trust, mutual respect and confidence.
Today, the elimination of new HIV infections among children is no longer a dream; it is within reach. The technologies and tools that have
virtually ended new paediatric infections in other countries can obtain the same results in sub-Saharan Africa. But they can only work if
communities are empowered to shape these services, if they feel supported and if they are recognized as an essential part of the solution.
Michel Sidibé
Executive Director
Joint United Nations Programme on HIV/AIDS
Eric P. Goosby, MD, RADM
Ambassador at Large and US Global AIDS Coordinator
The President’s Emergency Plan for AIDS Relief
US Department of State
1
Richter LM. Journal of the International AIDS Society 2012, 15(Suppl 2):17988
Editorial
Community action to end paediatric HIV infections
Linda M Richter§
§
Corresponding author: Linda M Richter, Human Sciences Research Council, Durban, South Africa. Tel: 27-31-242-5544 ([email protected])
Abstract
Virtual prevention of HIV transmission from parents to children is possible. This is cause for hope and renewed energy for
prevention in general. The Global Plan is the most concerted and ambitious plan to date to protect children and to promote their
care. But the inspiring and much appreciated global targets cannot be achieved, nor will they be realized in spirit in addition to
form, without joint action between health services, affected women, their partners, families and communities and the wider
society. In turn, this engagement is only possible under enabling political, legal, material and social conditions. Much has already
been achieved, and community engagement can everywhere be seen in efforts to increase demand, to supply services and to
create and improve enabling environments. Some of these initiatives are highly organized and expansive, with demonstrated
success. Others are local but essential adjuncts to health services. The nature of this engagement varies because the challenges
are different across countries and parts of countries. To be sustained and effective, community action must simultaneously be
inclusive and supportive for those people who are affected, it must be appreciated and assigned a place within the broad
systemic response, and it must promote and defend social justice.
Keywords: PMTCT; community; engagement; paediatric HIV.
Published 11 July 2012
Copyright: – 2012 Richter LM; licensee International AIDS Society. This is an open access article distributed under the terms of the Creative Commons Attribution
License (http://creativecommons.org/licenses/by-nc/3.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work
is properly cited.
Introduction: virtual prevention of HIV
transmission from parent to child
By the turn of the century, it was clear that the vertical
transmission of HIV to children could effectively be prevented with the appropriate use of short courses of
antiretroviral therapy (ART). In their landmark paper on the
issue, De Cock et al. noted that few other aspects of HIV had,
by that time, demonstrated results as dramatic as perinatal
prevention [1]. This remains true in 2012. They argued that
prevention of infection among children ‘‘requires HIV and
AIDS to be addressed as a disease of the family and the
community and leads to consideration of other interventions,
such as reproductive health care for women and support for
children orphaned by the epidemic’’ [1, p. 1181].
At the time, the critical policy and programme issues
needing to be addressed were highlighted as: increased HIV
counselling and testing, expanded use of the most effective
drug regimens and the prevention of transmission through
breastfeeding. Since then, all three issues have been resolved
to the point of creating conditions feasible for the virtual
prevention of HIV transmission from parent to child through
pregnancy, delivery and infant feeding. More effective drugs
are available, there is more integration among services and
the drug regimens recommended are more comprehensive
and better targeted.
HIV counseling and testing (HCT) no longer depends
only on individuals stepping out of the line to be tested
and risking gossip and stigmatization for doing so. In
2007, the World Health Organization (WHO) recommended
provider-initiated testing and counselling (PITC) [2] to
streamline and normalize the process [3]. PITC also helps
to increase the uptake of prevention of mother-to-child
transmission services (PMTCT) [4], more appropriately called
prevention of vertical transmission (PVT), in order not to
place blame unintentionally on women. Home-based testing
similarly expands services and provides for families to be
tested together [5,6], as does couples testing, guidelines for
which have recently been published by WHO [7].
Up until recently, PMTCT programmes predominantly
focussed on the prevention of HIV transmission to infants.
However, successfully enrolling eligible pregnant women into
treatment and retaining them on treatment is proving to be
the most effective approach to protecting mothers, their
children as well as their partners. The 2012 WHO PMTCT
technical update [8] recommends a single universal regimen
both to treat pregnant women living with HIV and to prevent
transmission to her baby (so-called Option B). This approach
simplifies service delivery, aligns and links with ART programmes enabling women to more easily transition between
services and specifically targets the prevention of maternal
mortality and vertical transmission both of which are
disproportionately attributable to the poor health of pregnant women in need of treatment [9]. Extended prophylaxis
given to infants or the continued treatment of their mothers
also renders breastfeeding safer [10]. Given the dramatically
increased vulnerability of young children whose mothers die
or who suffer serious ill-health, treatment for women not
only protects women’s wellbeing but also safeguards their
1
children [11]. Moreover, providing early treatment reduces
HIV transmission between serodifferent couples [12].
Scientific and technical knowledge and programme evaluations of PVT have increased dramatically, as indicated by an
overview of published literature on the topic between 1990
and 2010 (Figure 1). No other area of HIV prevention appears
so achievable. Yet multiple hurdles remain.
Despite PITC, some 10% to 20% of women refuse testing
and another 20% or so either directly or indirectly avoid PVT
prescriptions, procedures and follow-up [4]. When women
are not fully informed of the benefits, they may perceive PITC
to be coercive [13]. The need or perceived requirement to
get their partners’ consent [14] and the cost of transport and
out-of-pocket expenses are some of the reasons women give
for declining PVT prescriptions and procedures [15]. A recent
review highlights the loss of women between vertically
provided pregnancy- and HIV-related services and stresses
the need for both integration and ‘‘family-focussed care’’
[16]. Together with health service characteristics such as the
availability of test kits and drugs and the negative attitudes of
some healthcare providers towards women living with HIV
[17], progress to prevent HIV infections among young
children and to ensure the wellbeing of their mothers is
slower than was hoped.
We believe that what is needed, in addition to developments already highlighted, is to implement recommendation
by De Cock et al. that HIV and AIDS be addressed as a disease
of the family and the community and that HIV interventions
be integrated across the lifecycle of women, families and
children [1].
Countdown to Zero: the Global Plan
Average number of papers published
Assessments of progress towards the Millennium Development Goals show that the effects of HIV and AIDS are
especially severe for the survival and wellbeing of mothers
and young children [18]. In addition, PVT is central to global
HIV prevention efforts and remains the one area of prevention in which resounding success can be achieved. However,
given current knowledge and technology to prevent almost
all parent to child transmission of HIV, scale up of PVT and
universal access to prevention and treatment has been slow,
140
120
100
80
60
40
20
0
1990–1994
1995–1999
2000–2004
2005–2009
Yearly periods
153 papers were published in 2010. Databases searched were MedLine,
PubMed and PsycLIT, using the terms PMTCT OR prevention of mother to child
transmission OR prevention of mother-to-child transmission AND vertical transmission.
The electronic search yielded 1910 papers, from which 1402 papers with a clinical,
public health or programmatic focus were retained from a hand search.
Figure 1. Average number of clinical, public health and programmatic papers on PVT published every five years from 1990 to 2009.
with especial concern for women and children’s health in the
worst affected countries [19].
Support for a concerted global effort to prevent HIV
transmission from parent to child has been growing [2023].
At the 2011 United Nations General Assembly High Level
Meeting on AIDS, world leaders committed to work together
to achieve this goal. The aims of ‘‘Countdown to Zero: Global
Plan Towards the Elimination of New HIV Infections Among
Children by 2015 and Keeping their Mothers Alive’’ are to
achieve a 90% reduction in the number of new HIV infections
among children and a 50% reduction in AIDS-related deaths
among pregnant women [24]. This is the boldest plan to date
to protect children from HIV and to safeguard their families,
and it offers unprecedented opportunities to change the way
the health sector, donors, governments and others work with
affected people and communities to change the course of the
epidemic.
However, a modelling exercise, published before the
launch of the Plan, laid out how high a mountain had to
be climbed to reach the targets. Based on data from
25 countries with the highest numbers of pregnant women
living with HIV, Mahy et al. estimated that even if: (1) more
effective drug regimens were implemented, (2) the current
unmet need for family planning among women living with
HIV was wholly met and (3) breastfeeding was limited to
12 months to curb HIV transmission, the number of new child
infections averted (reckoned to be 79%) would still fall short
of the target [25]. What is critical, they argued, was for high
coverage to be reached on all aspects of the PVT programme
(with far fewer women lost to follow-up at each stage of
what is called the ‘‘PMTCT cascade’’), safer feeding practices
adopted and implementation of a comprehensive approach.
Such a comprehensive approach must include meeting the
family planning needs of couples affected by HIV and
reducing new HIV infections among women of reproductive
age. That is, giving effect to all four prongs of PVT. These are
(1) primary prevention of HIV among women of reproductive
age; (2) reducing the unmet need for family planning among
women living with HIV; (3) scaling up more efficacious ARV
regimens for women living with HIV and HIV-exposed infants
and (4) expanding treatment and care for women, children
and their families [24].
The challenges to expanding comprehensive approaches,
even in the highest burden regions, differ by country and by
area within countries. Ninety-one percent of pregnant
women living with HIV in 2009 are in 22 countries, all but
one in Africa [23]. However, huge differences exist between
these 22 countries, with some classified as middle-income
(such as India and South Africa) and others low-income
(Malawi and Mozambique); some stable states (for example,
Cameroon and Ethiopia) and others with fragile political
regimes (Democratic Republic of Congo and Zimbabwe).
There are also differences in health service access (at least
one antenatal visit: 97% in Botswana, 39% in Chad), HIV
incidence (1.68 in South Africa, 0.02 in India), unmet need for
family planning (41% in Uganda, 7% in Namibia), coverage
with any ARV regimen (95% in Botswana, 6% in the
Democratic Republic of Congo) and median duration of
breastfeeding in the general population (34 months in
2
Rwanda, 16 in South Africa) [25]. It is obvious that no one
approach will work everywhere.
UNICEF has developed fact sheets on the status of national
PVT responses in these 22 countries as at 2010 [26]. From the
assembled data, it is clear that some countries, such as
Angola, must increase PVT services in antenatal care,
especially in rural areas. Others, such as Nigeria, must
expand the low reach of and access to antenatal services most of which are relatively well provisioned for PVT
programmes especially amongst poor and rural women.
South Africa must bolster the prevention of new HIV
infections among young women and improve the quality of
PVT services, including the retention of women across the
range of vertical prevention services. In all countries, big
gaps, inefficiencies and poor quality services must be
addressed.
As has been recognized for some time, though, to reach
the targets requires actions, not only within and by health
services but also by affected women, their partners, within
families and communities and in the wider society. In turn,
this engagement is only possible under enabling political,
legal, material and social conditions. The choices of women
are affected, and their options limited, by their husbands and
partners, their families and what they perceive other people
think about them and how their neighbours and friends treat
them. In turn, social norms are influenced by laws and
policies, cultural beliefs, economic conditions and the range,
quality and helpfulness of the services they have at their
disposal. The same concentric circles of influence have been
noted in other areas of health intervention, with the
following quotation taken from cardiovascular disease: ‘‘Just
as we have learned that it is difficult to change the behavior
of individuals without changing the communities in which
they live, we may be learning that it is difficult to change the
behavior of whole communities without changing their
broader social environment as well’’ [27, p. 1391].
For these reasons, guidance for global scale-up emphasizes
the importance of supporting community-based programmes
and achieving integration with family planning, as well as
other aspects of sexual and reproductive health and
tuberculosis services, in order to create or enable facilitative
conditions for individual and social actions (demand) to
complement health service provision (supply). These programmes include the following:
1. Developing policy and legal frameworks, guidelines,
tools and competencies to link services to communitybased providers;
2. Defining standard packages of services to improve
maternal, neonatal and child survival and health, at
both health facility and at the community level;
3. Building capacity with technical and financial support
to community-based organizations to deliver PVT and
HIV services at facilities and in communities;
4. Promoting the active engagement of people living with
HIV in advocacy and planning and delivering services;
5. Promoting male-friendly models of delivering HIV
services and the participation of men in PVT and in
HIV care for children; and
6. Developing and implementing policies and programmes to reduce HIV-related violence, stigma and
discrimination in the context of PVT and HIV care for
children, including supporting women to disclose
their HIV status to partners and family members [19,
p. 2223].
There has been no assessment of country responses to these
guidance points or progress in achieving greater women,
family and community involvement in PVT. It is troubling that
recommendations for community action are considerably
diluted in ‘‘Countdown to Zero’’ [24]. They include less
specific strategies, such as developing community charters,
ensuring participation of all stakeholders, maximizing community assets and identifying solutions to stigma.
There is an emerging consensus that many HIV prevention
programmes do not succeed specifically because they do not
engage communities. Instead, they ‘‘are conceived by
external experts and imposed on communities in ‘topdown’ ways. As a result, they fail to resonate with the
worldviews and perceived needs and interests of their target
groupings, or to take adequate account of the complex social
relations into which programmes are inserted’’ [28, p. 1570].
Too often, suggest Campbell and Cornish, target communities
are seen as passive recipients, as ‘‘objects’’ of intervention
[28]. But community engagement and participation is
essential for several reasons: (1) because it is the most
effective way to deliver acceptable messages and services to
‘‘hard-to-reach’’ groups; (2) because it is one of the main
ways of engendering a sense of agency with which to build
individual and collective health promotion; and (3) because
the overall shortage of health workers means that community
volunteers and workers are needed to help deliver HIV
prevention, treatment and care to those who need it.
The AVAHAN experience in India, the largest prevention
programme ever undertaken, demonstrates the value of
involving communities, including the private sector, an oftforgotten constituency in the public domain [29]. At a
broader societal level, laws and policies within which health
services are funded and delivered emanate from social values
and are subject to public opinion which, in turn influences
and is influenced by all forms of media.
Community engagement and action
Given the importance of engaging women, families and
communities to achieve an end to HIV transmission from
parent to child, this special issue takes stock of current
knowledge and good practice in community action to create
an enabling environment, expand access and improve care of
women and children in PVT programmes, as well as to reach
men. The papers review and organize what is known to date,
document examples of community mobilization, and the
reach and effectiveness of community workers linked to
health facilities. They draw attention to gender inequalities,
the ways in which affected groups and their networks can
expand services and the importance of their experiences and
voices to unsettle complacency and compel changes in
attitudes and behaviour.
3
Several things stand out from these papers: firstly, how
determined community groups are to be part of the response
to HIV and how energetic and innovative are their practices.
Secondly, how large-scale some community activities are: for
example, in Uganda, 750 groups of people living with HIV,
working in larger coalitions, assisted 1.3 million people to
access HIV-related health services (Gitau-Mburu, this issue);
mothers2mothers reports having more than 250,000 patient
encounters per month, seeing nearly 24,000 new HIVpositive women per month in 714 sites [30]. Thirdly, how
comprehensive community-based services try to be as they
integrate their activities to meet individual needs and family
concerns (see Kim et al. and Patel et al. this issue), and
fourth, the urgent need that community actors have for
financial, policy, programme and personal support for their
work (see Dhlamini et al., this issue). However, what is also
evident, especially from the review papers, is how little
published research there is and, as a result, how limited our
knowledge and use of community processes in increasing
demand and supply of services and their role in the creation
of an enabling environment.
In addition to the papers, including the reviews and helpful
conceptual frameworks offered by, amongst others, Buzsa
et al. and Gulaid and Kiragu, there are two unique features to
this special issue. Firstly, the joint initiators of the Global
Plan, Dr Michel Sidibe, Executive Director or UNAIDS, and
Dr Eric Goosby, Global AIDS Coordinator responsible for the
implementation of PEPFAR, have provided a foreword. By
doing so, they emphasize the importance of community
engagement and action, and their commitment, within the
Global Plan, to achieve it. It is a massive expression of
support for community action, and it manifests the seriousness of their determination.
The second unique feature is that, in addition to academic
peer-reviewers, nine women living with HIV, recommended
for their professional expertise and personal experiences
by the International Community of Women with HIV/AIDS
(ICW) and the Global Network of People Living with AIDS
(GNP) were invited to review terminology. Their perspectives demonstrated the ways in which language can distort
understanding, fuel discrimination and deeply hurt those
who are directly affected by HIV. Although the comments of
this group of reviewers were discretionary unless independently endorsed by the journal’s standard editorial process,
all authors responded seriously to the issues raised. This is
the first time, of which we are aware, that a scientific journal
has engaged the people at the receiving end of science,
policy and service in a mutual effort to find common ground
and move forward together. In this sense, the special issue
embraces the commitment to include community even
though the common ground between science and experience
is uneven, a consequence of both low use and potential
misunderstanding. The special issue closes with an account of
the experiences of people living with HIV, male and female
recipients of our services, and an annotation by women
living with HIV and their networks on ‘‘Language, Identity
and HIV.’’
Almost all the papers take as their starting point the role of
community engagement in the following areas: expanded
reach and supply of services, increased uptake, enhanced
adherence to treatment and care regimes, improved retention in programmes and better psychosocial wellbeing of
women, children and their families within an enabling
environment. Reviews of published research and of best
practice experience endorse the need for community action
in PVT. They also conclude that the evidence, although
limited, is promising. Community action strategies can
expand the reach of services to women and their families,
increase access, boost adherence and retention, and support
affected children and ensure they receive treatment.
By and large, the mechanisms for community action involve
the engagement, enrolment and collaboration of a diverse
range of community-based volunteers, workers, counselors
and social actors through independent and integrated community- and facility-based programmes. Stand-out examples
from the papers themselves and the work they cite are
couples and home-based testing and prevention programmes
[3133], mentor and peer counselors [34,35]; support groups
and community forums [36] and community-based financing
mechanisms that address barriers due to transport and other
costs [37]. More and more effort is being made [38], with
success [39], to involve men, a strategy strongly endorsed by
affected women (Anderson et al., this issue). Less apparent,
although model studies and programmes can be found, are
efforts to substantially change the social and policy environment through legal reform, mass media, community activism
and demands for and implementation of mechanisms to
increase accountability at the local and international levels.
In a recent review of community accountability mechanisms, Molyneux et al. identify three basic approaches:
committees and groups, report cards and patient charters
[40]. While some impressive findings are reported for
committees and groups, patient charters are less promising,
offering only guidelines rather than consequences for abuses
of patient rights and poor quality of health services. One of
the most impressive effects of the use of report cards to
improve healthcare is given by Björkman and Svensson from
a randomized field experiment in fifty communities in nine
districts in Uganda [41]. Local organizations facilitated
agreements between community members and private and
government health providers on which submitted reports
were based. A pre- and post-survey of 5000 households after
one year suggested that the accountability mechanism was
highly effective. Health workers were rated as making more
effort, there were large increases in utilization and health
outcomes, including in child growth and a reduction of
under-five mortality by 33%.
It is clear that research in this area needs to be done and
project and programme evaluations must be improved to
pass the scrutiny of peers and be published. While there are
many promising practices of the effectiveness of community
action, the evidence base is still very limited.
Quo vadis?
In this special issue, several different conceptual frameworks
are used to review and or describe community approaches.
Busza et al. (this issue) employ a social ecological framework
that links the individual with peers and family, community
4
and the broader social, cultural and economic environment in
overlapping concentric circles. As they indicate, such conceptual frameworks are useful for illustrating the relationships between determinants that are proximal (downstream)
or distal (upstream) to the person as previously described by
Latkin and Knowlton [42].
Gulaid and Kiragu (this issue) use the distinction made by
Rosato et al. between participation, mobilization and empowerment in an analysis of their roles in maternal, newborn
and child health [43]. Rosato et al. see community empowerment being built up through layers of personal and
collective action, starting from the individual, to small mutual
groups, community organizations, partnerships and coalitions
and social and political action. However, they conclude with
several fundamental questions, unanswered also with respect to PVT. Is community participation an essential
prerequisite for better health outcomes or simply a useful
but non-essential companion to the delivery of treatments
and preventive health education? If essential, then is it only
a transitional strategy for the poorest and most deprived
populations but largely irrelevant once healthcare systems
are established; or is it the critical missing component and
the reason we are failing to achieve (in this case) the
Millennium Development Goals 4 and 5 regarding maternal
and child mortality?
Community action is, however, a muddled conceptual and
terminological terrain. Community means many different
things and we speak simultaneously of the international or
donor community and a particular local community; we refer
to community-based, community-oriented and services delivered in, for and by community (as opposed to health
facility). McLeroy et al. refer to four categories of implicit
constructions of community in health projects: community as
setting (usually geographic), community as target (groups as
compared to individuals), community as resource (frequently
in terms of participation and support) and community as
agent (meeting day-to-day needs) [44]. Writing in 1968 of his
attempts to develop a unitary approach to community
intervention, Jack Rothman notes ‘‘It was as if I had packed
a large and assorted pile of conceptual clothing into
a cognitive suitcase and found there was a sock or the end
of a tie sticking out after I had pressed it closed’’ [45, p. 27].
Criticized for ignoring culture as a factor in determining the
shape of community responses [46], Rothman’s conception
remains a cornerstone for understanding community action
[45]. In short, Rothman argued that community action can be
grouped into three approaches or models. The first aims to
improve service delivery through community development,
bringing people together to solve local problems on a
cooperative self-help basis. In this approach, participation,
inclusion and consensus are critical. The second is a
rationalistic approach used in policy and planning as
evidenced, for example, in task shifting arguments for the
role of community action [47,48]. The third approach, social
action, aims to ‘‘aid the oppressed, promote social justice,
and change society’’ adopted, for instance, as the foundation
of many AIDS activist groups [45, p. 27]. In practice, the three
approaches may be interwoven and differentially phased,
with one approach giving way to another [49]. The Treatment
Action Campaign [50], GNP[51] and Physicians for Social
Justice [52], as examples, combine assumptions, goals and
processes of all three approaches, in different ways and at
different times.
These approaches, argues Rothman, ‘‘can all be applied
in a way to pursue social change and human betterment’’
[45, p. 60]. In fact, they have to draw from one another
because each has inherent limitations for which the others
can compensate. Campbell and Cornish also argue for
alignment of different approaches to community action but
draw attention to the contexts in which such action can
flourish [28]. Funding, though needed, may impose expectations and constraints that undermine the participatory ethos
that is necessary for community action. Similarly, mass media
approaches frequently represent the views of western
agencies, for example, of gender or sex work, and may
miss opportunities for affected groups to challenge stigma
and establish their symbolic legitimacy. Lastly, community
action depends also on a relational context, in which
marginalized groups must have opportunities to interact
with powerful local actors in their efforts to protect their
health and receive services.
Campbell and Cornish advocate what they call ‘‘fourth
generation’’ social mobilization, mobilization for supportive
conditions for community action at local, national and
international levels [28]. Here there is a role for donors,
development agencies and governments to consider how
their policies and actions support or sabotage community
action. In addition, they suggest, this will require that
researchers also shift their attention ‘‘upwards’’ to examine,
explicate and hold accountable the international community,
as well as focussing ‘‘downwards on the successes and
failures of marginalized local communities’’ [28, p. 1578].
What is clear is that community engagement and action is
necessary for the Global Plan to succeed. Communities,
holding hands with health services, are needed to contribute
to creating demand for services, to help supply services and
to assist in establishing an enabling environment for both to
occur with maximal effectiveness.
Author’s affiliation
Human Sciences Research Council, South Africa
Competing interests
The author has no competing interests to declare.
Acknowledgements
A special thanks to the reviewers representing communities of women living
with HIV, who have generously given their time to provide valuable input into
language considerations on the manuscripts. The publication of this supplement was supported by The Coalition for Children Affected by AIDS and its
funder-members. We are especially grateful to funding from the Swedish
International Development Agency and the Norwegian Agency for Development Cooperation for their support.
References
1. De Cock KM, Fowler MG, Mercier E, de Vincenzi I, Saba J, Hoff E, et al.
Prevention of mother-to-child HIV transmission in resource-poor countries:
translating research into policy and practice. JAMA. 2000;283(9):117582.
2. World Health Organization, UNAIDS. Guidance on provider-initiated HIV
testing and counseling in health facilities [Internet]. Geneva: World Health
Organization; 2007 [cited 2012 April 12]. Available from: http://www.who.int/
hiv/pub/guidelines/9789241595568_en.pdf
5
3. Leon N, Colvin CJ, Lewin S, Mathews C, Jennings K. Provider-initiated
testing and counselling for HIV: from debate to implementation. SAMJ.
2010;100:2201.
4. Hensen B, Baggaley R, Wong VJ, Grabbe KL, Shaffer N, Lo Y-RJ, et al.
Universal voluntary HIV testing in antenatal care settings: a review of the
contribution of provider-initiated testing & counselling. Trop Med Int Health.
2012;17(1):5970.
5. Njau B, Watt MH, Ostermann J, Manongi R, Sikkema KJ. Perceived
acceptability of home-based couples voluntary HIV counseling and testing in
Northern Tanzania. AIDS Care. 2011;24(4):4139.
6. Sekandi J, Sempeera H, List J, Mugerwa M, Asiimwe S, Yin X, et al. High
acceptance of home-based HIV counseling and testing in an urban community
setting in Uganda. BMC Public Health. 2011;11(1):730.
7. World Health Organization. Guidance on couples HIV testing and counselling, including antiretroviral therapy for treatment and prevention in
serodiscordant couples: recommendations for a public health approach
[Internet]. Geneva: World Health Organization; 2012 [cited 2012 April 12].
Available from: http://whqlibdoc.who.int/publications/2012/9789241501972_
eng.pdf
8. World Health Organization. Use of anteretroviral drugs for treating
pregnant women and preventing HIV infection in infants: programmatic
update [Internet]. Geneva: World Health Organization; 2012 [cited 2012
April 12]. Available from: http://whqlibdoc.who.int/hq/2012/WHO_HIV_2012.
8_eng.pdf
9. Kuhn L, Aldrovandi GM, Sinkala M, Kankasa C, Mwiya M, Thea DM. Potential
impact of new WHO criteria for antiretroviral treatment for prevention of
mother-to-child HIV transmission. AIDS. 2010;24(9):13747.
10. Mofenson LM. Protecting the next eliminating perinatal HIV-1 infection.
N Engl J Med. 2010;362(24):23168.
11. Ronsmans C, Chowdhury ME, Dasgupta SK, Ahmed A, Koblinsky M. Effect
of parent’s death on child survival in rural Bangladesh: a cohort study. Lancet.
2010;375(9730):202431.
12. Cohen MS, Chen YQ, McCauley M, Gamble T, Hosseinipour MC,
Kumarasamy N, et al. Prevention of HIV-1 infection with early antiretroviral
therapy. N Engl J Med. 2011;365(6):493505.
13. Larsson EC, Thorson A, Pariyo G, Conrad P, Arinaitwe M, Kemigisa M, et al.
Opt-out HIV testing during antenatal care: experiences of pregnant women in
rural Uganda. Health Policy Plan. 2012;27(1):6975.
14. Homsy J, King R, Malamba SS, Opio C, Kalamya JN, Mermin J, et al. The
need for partner consent is a main reason for opting out of routine HIV testing
for prevention of mother-to-child transmission in a rural Ugandan hospital.
2007;44(3): 3669.
15. Duff P, Kipp W, Wild T, Okech-Ojony J. Barriers to accessing highly active
antiretroviral therapy by HIV-positive women attending an antental clinic
in a regional hospital in western Uganda. J Acquir Immune Defic Syndr.
2010;13(1):37.
16. Ferguson L, Grant AD, Watson-Jones D, Kahawita T, Ong’ech JO, Ross DA.
Linking women who test HIV-positive in pregnancy-related services to longterm HIV care and treatment services: a systematic review. Trop Med Int
Health. 2012;17(5):56380.
17. Ekouevi DK, Stringer E, Coetzee D, Tih P, Creek T, Stinson K, et al. Health
facility characteristics and their relationship to coverage of PMTCT of HIV
services across four african countries: the PEARL Study. PLoS One.
2012;7(1):29823.
18. Chopra M, Daviaud E, Pattinson R, Fonn S, Lawn JE. Saving the lives of
South Africa’s mothers, babies, and children: can the health system deliver?
Lancet. 2009;374(9692):83546.
19. World Health Organization, UNICEF, IATT. Guidance on global scale-up of
the prevention of mother to child transmission of HIV: towards universal
access for women, infants and young children and eliminating HIV and
AIDS among children [Internet]. Geneva: World Health Organization; 2007
[cited 2012 April 12]. Available from: http://www.unicef.org/aids/files/PMTCT_
enWEBNov26.pdf
20. UNAIDS. We can prevent mothers from dying and babies from
becoming infected with HIV: joint action for results [Internet]. Geneva: Joint
United Nations Programme on HIV/AIDS; 2012 [cited 2012 April 12]. Available from: http://www.unaids.org/en/media/unaids/contentassets/documents/
unaidspublication/2010/20101031_JC1965_PMTC.en.pdf
21. United Nations General Assembly. Declaration of commitment on HIV/
AIDS: global crisis global action [Internet]. New York: United Nations Special
Session on HIV/AIDS; 2001 Jun [cited 2012 April 12]. Available from: http://
www.un.org/ga/aids/coverage/FinalDeclarationHIVAIDS.html
22. United Nations General Assembly. Resolution adopted by the General
Assembly. Political declaration on HIV/AIDS [Internet]. New York: United
Nations General Assembly 87th Plenary Meeting; 2006 Jun [cited 2012 April
12]. Available from: http://data.unaids.org/pub/Report/2006/20060615_HLM_
PoliticalDeclaration_ARES60262_en.pdf
23. World Health Organization. PMTCT strategic vision 20102015: preventing
mother-to-child transmission of HIV to reach the UNGASS and Millennium
Development Goals. Moving towards the elimination of paediatric HIV
[Internet]. Geneva: World Health Organization; 2010 [cited 2012 April 12].
Available from: http://www.who.int/hiv/pub/mtct/strategic_vision.pdf
24. UNAIDS. Countdown to zero: Global plan towards the elimination of
new HIV infections among children by 2015 and keeping their mothers
alive [Internet]. Geneva: Joint United Nations Programme on HIV/AIDS; 2011
[cited 2012 April 12]. Available from: http://www.unaids.org/en/media/
unaids/contentassets/documents/unaidspublication/2011/20110609_JC2137_
Global-Plan-elimination-HIv-Children_en.pdf
25. Mahy M, Stover J, Kiragu K, Hayashi C, Akwara P, Luo C, et al. What will it
take to achieve virtual elimination of mother-to-child transmission of HIV?
An assessment of current progress and future needs. Sex Transm Infect.
2010;86(Suppl 2):ii4855.
26. UNICEF. Preventing mother-to-child transmission (PMTCT) of HIV: factsheets on the status of national PMTCT responses in the most affected
countries, 2010 [Internet]. New York: UNICEF [cited 2012 April 12]. Available
from: http://www.unicef.org/aids/index_preventionyoung.html.
27. Luepker RV, Murray DM, Jacobs DR, Mittelmark MB, Bracht N, Carlaw R,
et al. Community education for cardiovascular disease prevention: risk factor
changes in the Minnesota Heart Health Program. Am J Public Health.
1994;84(9):138393.
28. Campbell C, Cornish F. Towards a ‘‘fourth generation’’ of approaches to
HIV/AIDS management: creating contexts for effective community mobilisation. AIDS Care. 2010;22(Suppl 2):156979.
29. Laga M, Vuylsteke B. Evaluating AVAHAN’s design, implementation and
impact: lessons learned for the HIV prevention community. BMC Public Health.
2011;11 Suppl 6:S16.
30. McColl K. Mentor mothers to prevent mother-to-child transmission of HIV.
BMJ. 2012;344:e1590.
31. Bateganya M, Abdulwadud Omar A, Kiene Susan M. Home-based HIV
voluntary counselling and testing (VCT) for improving uptake of HIV testing.
Cochrane Database Syst Rev [serial on the Internet]. 2010 [cited 2012 March
20]; (7). Available from: http://www.mrw.interscience.wiley.com/cochrane/
clsysrev/articles/CD006493/frame.html.//
32. Burton J, Darbes L, Operario D. Couples-focused behavioral interventions
for prevention of HIV: systematic review of the state of evidence. AIDS Behav.
2010;14(1):110.
33. Farquhar C, Kiarie JN, Richardson BA, Kabura MN, John FN, Nduati RW,
et al. Antenatal couple counseling increases uptake of interventions to prevent
HIV-1 transmission. J Acquir Immune Defic Syndr. 2004;37(5):16206.
34. Chandisarewa W, Stranix-Chibanda L, Chirapa E, Miller A, Simoyi M,
Mahomva A, et al. Routine offer of antenatal HIV testing (‘‘opt-out’’ approach)
to prevent mother-to-child transmission of HIV in urban Zimbabwe. Bull World
Health Organ. 2007;85(11):84350.
35. Futterman D, Shea J, Besser M, Stafford S, Desmond K, Comulada WS,
et al. Mamekhaya: a pilot study combining a cognitive-behavioral intervention
and mentor mothers with PMTCT services in South Africa. AIDS Care.
2010;22(9):1093100.
36. Torpey K, Kabaso M, Kasonde P, Dirks R, Bweupe M, Thompson C, et al.
Increasing the uptake of prevention of mother-to-child transmission
of HIV services in a resource-limited setting. BMC Health Serv Res.
2010;10(1):29.
37. Ekirapa-Kiracho E, Waiswa P, Rahman M, Makumbi F, Kiwanuka N, Okui O,
et al. Increasing access to institutional deliveries using demand and supply side
incentives: early results from a quasi-experimental study. BMC Int Health Hum
Rights. 2011;11(Suppl 1):S11.
38. Mills EJ, Beyrer C, Birungi J, Dybul MR. Engaging men in prevention and
care for HIV/AIDS in Africa. PLoS Med. 2012;9(2):e1001167.
39. Aluisio A, Richardson BA, Bosire R, John-Stewart G, Mbori-Ngacha D,
Farquhar C. Male antenatal attendance and HIV testing are associated with
decreased infant HIV infection and increased HIV-free survival. J Acquir
Immune Defic Syndr. 2011;56(1):7682.
40. Molyneux S, Atela M, Angwenyi V, Goodman C. Community accountability
at peripheral health facilities: a review of the empirical literature and
6
development of a conceptual framework. Health Policy Plan. [cited 2012
January 25]. [Epub ahead of print].
41. Björkman M, Svensson J. Power to the people: evidence from a
randomized field experiment on community-based monitoring in Uganda. Q
J Econ. 2009;124(2):73569.
42. Latkin CA, Knowlton AR. Micro-social structural approaches to HIV
prevention: a social ecological perspective. AIDS Care. 2005;17(Suppl 1):
10213.
43. Rosato M, Laverack G, Grabman LH, Tripathy P, Nair N, Mwansambo C,
et al. Community participation: lessons for maternal, newborn, and child
health. Lancet. 2008;372(9642):96271.
44. McLeroy KR, Norton BL, Kegler MC, Burdine JN, Sumaya CV. Communitybased interventions. Am J Public Health. 2003;93(4):52933.
45. Rothman J. Approaches to community intervention. In: Rothman J, Erlich J,
Tropman J, editors. Strategies of community intervention. 7th ed. Peosta, IA:
Eddie Bowers Publishing Company; 2008. p. 2764.
46. Laing BY. A critique of Rothman’s and other standard community
organizing models: toward developing a culturally proficient community
organizing framework. Community Dev. 2009;40(1):2036.
47. Celletti F, Wright A, Palen J, Frehywot S, Markus A, Greenberg A, et al. Can
the deployment of community health workers for the delivery of HIV services
represent an effective and sustainable response to health workforce
shortages? Results of a multicountry study. AIDS. 2010;24:S4557.
48. Lehman U, van Damme W, Barton F, Sanders D. Task shifting: the answer to
the human resource crisis in Africa? Hum Resour Health. 2009;7(1):49.
49. Rothman J. The interweaving of community intervention approaches. J
Community Pract. 1996;3(34):6999.
50. Treatment Action Campaign. South Africa: Treatment Action Campaign
[Internet] [cited 2012 April 12]. Available from: http://www.tac.org.za/
community/
51. Global network of people living with HIV [Internet]. The Netherlands:
GNP [cited 2012 April 12]. Available from: http://www.gnpplus.net/
52. Physicians for Social Justice [Internet]. Nigeria: Physicians for Social Justice
[cited 2012 April 12]. Available from: http://www.psjnigeria.org.
7
Ackerman Gulaid L and Kiragu K. Journal of the International AIDS Society 2012, 15(Suppl 2):17390
Review article
Lessons learnt from promising practices in community
engagement for the elimination of new HIV infections
in children by 2015 and keeping their mothers alive:
summary of a desk review
Laurie Ackerman Gulaid1 and Karusa Kiragu§,2
§
Corresponding author: Karusa Kiragu, UNAIDS, 20 Avenue Appia, Geneva, Switzerland, Tel: 41 22 791 2167. ([email protected])
Abstract
Introduction: Through The Global Plan Towards the Elimination of New HIV Infections Among Children by 2015 and Keeping their
Mothers Alive, leaders have called for broader action to strengthen the involvement of communities. The Global Plan aspires to
reduce new HIV infections among children by 90 percent, and to reduce AIDS-related maternal mortality by half. This article
summarizes the results of a review commissioned by UNAIDS to help inform stakeholders on promising practices in community
engagement to accelerate progress towards these ambitious goals.
Methods: This research involved extensive literature review and key informant interviews. Community engagement was defined
to include participation, mobilization and empowerment while excluding activities that involve communities solely as service
recipients. A promising practice was defined as one for which there is documented evidence of its effectiveness in achieving
intended results and some indication of replicability, scale up and/or sustainability.
Results: Promising practices that increased the supply of preventing mother-to-child transmission (PMTCT) services included
extending community cadres, strengthening linkages with community- and faith-based organizations and civic participation in
programme monitoring. Practices to improve demand for PMTCT included community-led social and behaviour change
communication, peer support and participative approaches to generate local solutions. Practices to create an enabling
environment included community activism and government leadership for greater involvement of communities.
Committed leadership at all levels, facility, community, district and national, is crucial to success. Genuine community
engagement requires a rights-based, capacity-building approach and sustained financial and technical investment. Participative
formative research is a first step in building community capacity and helps to ensure programme relevance. Building on existing
structures, rather than working in parallel to them, improves programme efficiency, effectiveness and sustainability. Monitoring,
innovation and information sharing are critical to scale up.
Conclusions: Ten recommendations on community engagement are offered for ending vertical transmission and enhancing the
health of mothers and families: (1) expand the frontline health workforce, (2) increase engagement with community- and faithbased organizations, (3) engage communities in programme monitoring and accountability, (4) promote community-driven social
and behaviour change communication including grassroots campaigns and dialogues, (5) expand peer support, (6) empower
communities to address programme barriers, (7) support community activism for political commitment, (8) share tools
for community engagement, (9) develop better indicators for community involvement and (10) conduct cost analyses of various
community engagement strategies. As programmes expand, care should be taken to support and not to undermine work
that communities are already doing, but rather to actively identify and build on such efforts.
Keywords: prevention of mother-to-child transmission of HIV; elimination of HIV infections among children and keeping
mothers alive; promising practices; community health workers; community-based organizations; community-based monitoring;
social and behaviour change communication; greater involvement of people living with HIV; right to health; male engagement.
Received 16 January 2012; Revised 9 May 2012; Accepted 16 May 2012; Published 11 July 2012
Copyright: – 2012 Laurie Ackerman Gulaid and Kiragu K; licensee International AIDS Society. This is an open access article distributed under the terms of the
Creative Commons Attribution License (http://creativecommons.org/licenses/by-nc/3.0/), which permits unrestricted use, distribution, and reproduction in any
medium, provided the original work is properly cited.
Introduction
In 2010, 390,000 children were newly infected with HIV, of
which 90% were in sub-Saharan Africa (SSA) [1]. However,
technology exists to reduce the risk of vertical transmission of
HIV from over 30% to less than 2% and has led to the virtual
elimination of paediatric HIV in industrialized countries. At
the United Nations 2011 High Level Meeting on AIDS, leaders
committed to work towards achievement of this goal globally.
As outlined in The Global Plan Towards the Elimination of
New HIV Infections Among Children by 2015 and Keeping
their Mothers Alive, specific targets include a 90% reduction
in the number of new HIV infections among children and a
1
50% reduction in AIDS-related deaths among pregnant
women.
The United Nations has developed a comprehensive
approach to preventing vertical transmission of HIV, which
includes HIV prevention measures and a range of care services
for mothers and their children. The approach has four
components:
1.
2.
3.
4.
primary prevention of HIV among women of childbearing age;
prevention of unintended pregnancies among women
living with HIV;
prevention of HIV transmission from a woman living
with HIV to her infant by using anti-retroviral (ARV)
prophylaxis or treatment;
provision of appropriate treatment, care and support to
women living with HIV and their children and families.
For each component, PMTCT puts into operation the
concepts of combination prevention and treatment as
prevention for both mothers and children. It also focuses
on the health and wellbeing of families. Further, PMTCT
incorporates an integrated approach to reproductive health,
including the improvement of antenatal, delivery and postnatal care [2,3].
Ending vertical transmission will require women, often
living in resource-poor settings, to stay engaged with the
healthcare system and face a range of complex and sensitive
decisions over an extended period of time. The Global Plan
identifies specific community actions as essential to the
scale up of PMTCT programmes. It calls on communities to
provide services, referrals and linkages, to help plan and
monitor programmes, to create demand and to fight stigma
and discrimination. In order to inform stakeholders on how
to maximize the role of communities, UNAIDS commissioned
this desk review to help identify promising practices and
document lessons learnt.
Methods
This 2011 study comprised a literature review and key
informant interviews. Methods included extensive internet
research through selected word searches related to community engagement and PMTCT. Specific stakeholder websites
were explored, including those of UNAIDS, the United States
President’s Emergency Plan for AIDS Relief (PEPFAR), WHO,
United Nations Population Fund (UNFPA), the United Nations
Children’s Fund (UNICEF) and civil society implementing
partners. Other sites that provided important leads and
resources included the WHO PMTCT Monthly Intelligence
Reports; AIDS Support and Technical Assistance Resources
(AIDSTAR) HIV Prevention Updates; the University of California
at San Francisco’s Women, Children and HIV; the Joint Learning
Initiative on HIV/AIDS; and the Coalition on Children Affected
by AIDS. The types of literature reviewed included journal
articles; published and unpublished reports, evaluations and
reviews; and abstracts, posters and presentations from
international conferences. In proportion with the epidemiology of new HIV infections among children, the focus was
largely on SSA, but case studies were identified from other
regions as well. The available body of evidence on best
practices in community engagement for PMTCT largely comes
from grey literature complemented by a small number of
controlled or quasi-experimental studies. More than 200
documents were reviewed.
To supplement the literature review, information was
collected through e-mail exchanges and telephone and
face-to-face interviews (using a semistructured questionnaire) with key informants from organizations supporting
community engagement for PMTCT. Informants were identified through the literature review and by key contacts at the
global, regional and national level. A total of 35 individuals
representing 26 national and international organizations
were interviewed. The first draft of the paper was reviewed
for technical content by a small group of representatives of
civil society, donor and implementing agencies. This article
summarizes the review report [4].
Four limitations of the study are noted. First, grassroots
initiatives often lack the financial and technical capacity
required for programme monitoring, documentation and
dissemination. Therefore, available evidence is skewed
towards funded activities. Second, PMTCT to date has
focused largely on the provision of ARV prophylaxis, and
less on the other components of comprehensive services to
reduce vertical transmission [2,3]. To augment findings on
the other prongs, leads were sought for promising practices
in community engagement for HIV prevention, family planning, AIDS care and support as well as maternal, neonatal
and child health (MNCH). Third is attributing change. In most
cases, community interventions have been undertaken handin-hand with facility-based activities and it is difficult to
tease out the specific impact of the community component.
Lastly, the nature of community work is fluid and contextspecific and therefore may be challenging to measure and
interpret, especially in terms of its replicability. Despite these
constraints, the available body of evidence provided some
important promising practices and highlighted gaps that
warrant further attention.
Definitions
Community
‘‘Community’’ is a dynamic concept meaning different things
in different contexts and to different people. A landmark
study of 94 definitions in 1955 [5] and a subsequent public
health analysis [6] provided the basis for the definition used
in this review, ‘‘a group of people with diverse characteristics
who are linked by common ties including shared interests,
social interaction and/or geographic location’’.
This definition is deliberately inclusive to embrace the
wide range of communities involved in ending vertical
transmission of HIV, for example current and former PMTCT
clients, networks of persons living with HIV, community
leaders and opinion makers, as well as local non-governmental
organizations.
Community engagement
Loosely defined, ‘‘community engagement’’ is the process of
working collaboratively with and through groups of people
2
PARTICIPATION
MOBILISATION
EMPOWERMENT
Communities are
engaged as passive
or active recipients
of health servies.
Communities are
engaged to support
health programmes
through direction or
facilitation by health
professionals.
Communities are
engaged through a
capacity building process
to plan, implement
and/or evaluate
activities on a sustained
basis to improve their
health.
Figure 1.
Spectrum of community engagement.
with diverse characteristics who are linked by common ties,
social interaction and/or geographic location [7].The spectrum
of community engagement in the health sector encompasses
the three closely related concepts identified above (Figure 1)
[39].
As shown by the arrow, the literature indicates that over
time programmes have moved towards greater community
empowerment through a rights-based approach [8,9].
Although practices reflecting all three concepts are currently
in use for PMTCT scale up, this review focuses on community
mobilization and empowerment. Activities that engage
communities solely as passive audiences for information,
behaviour change or services have been excluded.
Promising practice
For the purposes of this review, a ‘‘promising practice’’ in
community engagement is an approach for which there is
documented evidence in at least one setting of its effectiveness in achieving intended health-related results, usually
increased PMTCT uptake or compliance. Other important
factors taken into consideration are that the practice has
been (or shows potential to be) replicated, scaled up and/or
sustained.
Results
The promising practices identified are organized as shown in
Figure 2 according to their primary intended outcome; that
is, improved supply of PMTCT services; increased uptake of
PMTCT; and, an enabling environment for PMTCT.
Although this diagram simplifies reality by masking the
dynamics and overlap between the three areas,1 it is offered
as a conceptual framework for stakeholders as they respond
to identified gaps in their PMTCT programmes. Below, the
promising practices are described along with examples and a
brief summary of lessons learnt. The examples are by no
means exhaustive, but are offered to illustrate the practice in
operation and some of the results achieved to date.
Outcome area 1: Communities improving the supply
of comprehensive PMTCT services
Communities extending the workforce
Across various sectors, community members have been
engaged in social development either as volunteers or with
remuneration. The benefits of engaging community members
1
For example, peer counsellors often contribute to all three outcomes. They
can extend the supply of essential services (e.g. adherence counselling),
increase the uptake of services (e.g. through follow up) and help to create an
enabling environment by modelling positive living.
as frontline health workers are well documented and include
extending the workforce, bringing services closer to people
and, benefiting from the intimate knowledge these workers
have of their communities. The global community health
worker (CHW) Task Force recently called for one million
salaried CHWs by 2015, and has issued a report providing
cost estimates, a deployment strategy and operational design
towards this goal [10].
WHO lists 313 essential tasks for the continuum of HIV
prevention, care and treatment and notes that over a third
can be performed by frontline health workers [11]. Such
workers (including CHWs, mentor mothers and adherence
counsellors) have been effectively used for PMTCT scale up in
many countries and programmes.
The review finds that:
1.
2.
3.
4.
While there are several ways in which communities
serve as health workers, it is useful to anchor them to a
primary healthcare system that promotes task sharing.
There is need for functional systems to remunerate and
train the workers and provide supportive supervision.
There is need for training to improve service quality,
both for lay staff as well as professional health staff.
Frontline health workers operate most effectively when
communities have a say in their recruitment.
Linking to community- and faith-based organizations
Organized community responses are key to the HIV response.
Community- and faith-based organizations (CBOs/FBOs) are a
crucial source of support for millions of families affected by
AIDS. They span the horizon of HIV needs including prevention, infant feeding, psychosocial and spiritual support,
follow-up and referrals, gender-based inequities, and income
generation. They reach remote areas, bringing services
closer to vulnerable populations. PMTCT can be integrated
effectively into the ongoing work of many CBOs/FBOs,
including both facility and community-based services. The
flexibility of CBOs/FBOs enables them to support implementation of most of the promising practices found through this
review.
Lessons in practice include that:
1.
2.
3.
A first step in developing a community engagement
strategy for ending vertical transmission is to understand existing CBO/FBO activities. This can be accomplished through a participative inquiry and mapping
exercise [1214].
CBO/FBO activities should ideally be linked to health
facilities with an agreement that spells out how each
group operates and how they support one another.
Establishing linkages with CBOs/FBOs that support older
children, women and other family members affected by
AIDS is essential to ensure continued support after their
completion of the PMTCT continuum.
Monitoring PMTCT programmes through civic participation
Poor service quality is a widely acknowledged constraint
to PMTCT and other health services. Many supply-side
strategies, including clinical mentoring, supervision and
the promotion of service standards, are being implemented
3
GOAL: 90% reduction in new HIV infections among children and 50%
reduction in AIDS-related maternal deaths
OUTCOME AREA 1:
Improved supply of
PMTCT services
OUTCOME AREA 2:
Increased uptake of PMTCT
services
OUTCOME AREA 3:
Enabling environment for
PMTCT scale up
Extending the
workforce
Communicating for
social and behaviour
change
Advocating for
PMTCT and the right
to health
Linking with
CBOs/FBOs
Providing peer
support
Promoting community
engagement in policies
and strategies
Monitoring programs
through civic
participation
Maximising assets
and addressing
financial constraints
Figure 2. Community engagement practices by intended outcome.
to improve quality. However, in most resource-poor countries
the institutions assigned to monitor public services face
significant limitations. There is increasing interest and
experience in the role of communities as complementary
monitors for health and other public services. A randomized field experiment in Uganda using community report
cards and locally developed remedial action plans demonstrated that community monitoring can help to reduce clinic
waiting times and absenteeism; improve health facility
cleanliness; increase average service utilization and reduce
under-five mortality [15]. At a national level, both Rwanda
through performance contracts with local authorities [16]
and India through the National Rural Health Mission [17]
are decentralizing monitoring and accountability.
The findings of the review suggest that:
1.
2.
3.
4.
Broad and continuous stakeholder involvement may
promote better appreciation of community demands
and lead to greater implementation of agreed reforms.
In order to monitor services, communities need
access to timely information, including the evaluation
criteria.
Consensus building among health personnel, government authorities and the community around their
respective roles and indicators of progress is critical.
More research and evaluation are needed on userfriendly tools to enhance accountability and on the
sustainability of community-based monitoring.
Outcome area 2: Increasing the uptake of PMTCT services
Some of the demand-side factors that inhibit PMTCT uptake
include inadequate knowledge and misconceptions about
HIV, gender inequities, stigma and financial constraints.
PMTCT programmes are engaging with communities to
address these barriers as follows.
Community-led social and behaviour change
communication
The focus of this practice is on engaging communities to plan
and implement social and behaviour change communication
(SBCC) activities aimed at transforming attitudes to improve
PMTCT uptake and promote behaviours that reduce the risk
of HIV transmission. Examples include conversations taking
place in over 16,000 communities in Ethiopia [38] and Men
Taking Action in Zambia,2 a communication strategy that
was associated with increased HIV counselling and testing
among both PMTCT clients and their partners. Implementers
credited the success of the programme to the engagement
of culturally revered community leaders [18]. Other programmes are addressing stigma and discrimination. For
example, a participatory process undertaken with a rural
community in the Eastern Cape of South Africa led to the
adoption of a community declaration on HIV which among
other actions, resolved ‘‘to disclose HIV status with the
knowledge that we would have support from our
communities’’ and ‘‘not to gossip about or humiliate in any
way, those who are known to have HIV/AIDS’’ [19].
Some of the lessons from community-led SBCC are:
1.
Participatory formative research is essential to ensure
that SBCC messages are relevant.
2
The important and well-documented benefits of male involvement in PMTCT
and recommended approaches and practices, in the context of women’s
choices, rights and what works for them, are the focus of a recent review also
commissioned by WHO and UNAIDS (Ramirez-Ferrero: WHO [37]).
4
2.
3.
4.
Community members need training and ongoing support to master communication strategies that lead to
change.
Communication agents may require some form of
compensation to sustain their activities.
Health facilities must be prepared to respond adequately to demand generated through SBCC.
Providing peer support
The engagement of persons living with HIV to provide peer
support is widely practised within the global HIV response.
Working individually or within a group, peers aim to support
women and their families in a variety of ways throughout the
PMTCT process. Individual peers, such as the mentors
supported in mothers2mothers programmes in nine countries
as of mid-2011, recorded improvements in client retention,
CD4 testing, prophylaxis uptake, treatment initiation, disclosure and infant testing [20]. In Uganda, Network Support
Agents were credited with having mobilized persons living
with HIV to utilize services, including both clinic-based and
supportive services provided by CBOs [21]. In Botswana, a
male-oriented peer education programme was associated in
the first year with more than doubling of the number of men
who knew their status, quadrupling disclosure rates, and a
six-fold increase in the number of men who accompanied
partners to ante-natal care (ANC) [22].
In Ethiopia, a review of a mothers’ support group initiative
reported that 90% of the mothers and babies enrolled
received prophylaxis, compared to a national rate of 53%
[23]. However, being based at health centres limited
participation for women living far away [24]. A more recent
development in PMTCT programmes is the expansion of
support groups for other family members, for example
mother-in-law support groups in Lesotho or family support
groups in Tanzania [25]. An assessment of a couple support
group initiative in Uganda found that among group members,
communication between partners improved and couples
engaged in better birth planning and adherence to ARV
prophylaxis increased [26]. Some support groups take on a
broader mandate. Many have engaged in income-generating
activities to sustain themselves and extend their HIV-related
activities in the community. In Mozambique, a health centrebased mothers’ support group initiated in 2008 evolved into
a national registered association and expanded its efforts to
follow up clients who miss their appointments [27].
Lessons learnt from peer support include:
1.
2.
3.
Peer support has been associated with improved
PMTCT service uptake and adherence as well as
reduced stigma, including self-stigma and positive
living.
When engaging peer counsellors at health facilities,
it is important to address any potential stigma from
healthcare workers, and to formally incorporate
peer counsellors as an integral part of the healthcare
team.
There are many different support group models,
including both clinic and community based.
4.
Support groups can be empowered to take on a
broader mandate in the HIV response self-help and
income generation projects.
Maximizing community assets and addressing
economic constraints
The Global Plan suggests that communities can facilitate
scale up by maximizing local resources in support of PMTCT
programmes. For example in rural Nepal, local women were
supported to develop and implement strategies to reduce
neonatal mortality. ANC visits and facility deliveries increased
while neonatal mortality and maternal mortality both
declined [28]. In Uganda where transport is a major
constraint, local motorcyclists were organized to accept
vouchers in exchange for transport to ANC, deliveries and
postnatal care. Facility deliveries jumped from less than 200
per month to over 500 [29]. Promising transport initiatives
are also being undertaken in South Sudan and Nigeria
[30,31].
Lessons learnt include that:
1.
2.
Community engagement is a process that requires a
participative approach.
Identifying home-grown solutions and mobilizing local
resources helps to guide external funding and ensure
sustainability [32].
Outcome area 3: Creating an enabling environment
for PMTCT scale up
An enabling environment can be developed from two
directions: (a) communities can engage in advocacy to
improve policies and actions around PMTCT, and (b) governments and development partners can promote policies that
encourage community engagement.
Communities advocating for PMTCT, MNCH
and right to health
Community activists have played a key role since the
inception of the HIV response. Two examples follow:
Based in South Africa, the Treatment Action Campaign
(TAC) is a world-renowned coalition that uses a human rightsbased framework combining social mobilization and legal
action to improve access to treatment. TAC’s efforts combine
education, HIV treatment literacy and public marches. TAC
employed existing legal instruments to seek PMTCT services
for women, using the provisions available in South Africa’s
constitution. This led to the landmark court decision that
required the South African government to rollout ARVs for
PMTCT at a national scale [33]. In so doing, TAC demonstrated
civil society’s ability to secure public goods by utilizing the
existing enabling environment.
The National Partnership Platform (NPP) works to
‘‘create space’’ for effective dialogue between civil society,
governments and other stakeholders. The initiative is active
in eastern and southern Africa and comprised of over
55 civil society organizations. In Uganda, the local NPP, in
collaboration with two families and other stakeholders, is
prosecuting the government over two preventable maternal
deaths that occurred in public sector facilities. When court
5
action was delayed, hundreds of advocates took to the
streets in protest. The outcome of the trial is still
unknown, but the case is bringing high-level attention to
the issues of women’s health and health as a basic human
right [34].
Key lessons from community advocacy include:
1.
2.
3.
4.
Education on human rights, PMTCT, MNCH and local
health issues will be needed to empower more
communities as advocates and activists.
Financial and technical investment is required to build
advocacy skills and coordinate organized activism.
Most-at-risk populations, such as poor rural women,
children, injecting drug users, sex workers and others,
are in great need for capacity building in advocacy in
order to strengthen their voices.
Sustained activism is likely to be required, especially at
national and local levels, to ensure the elimination of
new HIV infections in children by 2015 and keeping
their mothers alive.
Promoting policies and strategies that support PMTCT and
community engagement
Most major donors, international partners and governments
are now promoting community engagement for PMTCT in
their technical and funding guidance. In Botswana, the
government implemented an intense Total Community
Mobilisation that helped to lay the groundwork for its
successes today. During this mobilization, about 500,000
community members developed individual action plans, with
assistance from trained field officers. An estimated 60% of
the people reached reported having complied with their
plans [35]. Today, the Government of Botswana cites
community mobilization as one of the main strategies for
the national PMTCT programme [36]. In Rwanda, a similar
programme focuses on male involvement. ‘‘Going for Gold’’ is
grounded in high-level political advocacy and intensive
community mobilization with local authorities, CHWs and
‘‘Male Champions’’. Credited in part to this effort, male
partner testing has rapidly increased from 16% in 2002/03 to
84% in 2009/10 [16].
These and similar findings reveal that:
1.
High-level political leadership is essential to the successful scale up of community engagement and PMTCT.
More effort is needed to generate sufficient political
commitment in all countries working on the Global
Plan.
Conclusions
Ending new HIV infections among children by 2015 and
keeping their mothers alive is possible, but will not be easy. As
reinforced through this review, success will require the
sustained engagement and unique inputs of various communities, from small informal groups at the grassroots level right
up to global coalitions. The good news is that implementers
and experts are conducting many effective community
engagement strategies. What remains is to share, strengthen
and apply these strategies while rapidly scaling up dedicated
resources and community engagement programmes in support of PMTCT, HIV and MNCH. However, as programmes
expand, care should be taken to support and not to undermine work that communities are already doing, but rather to
actively identify and build on such efforts. The following 10
recommendations are offered to facilitate not only achievement of goals of the Global Plan, but also important broader
benefits for women, families and communities.
1. Expand and support the frontline health workforce
for PMTCT scale up: Given the documented benefits
of a community workforce for PMTCT and for health
more broadly, this review strongly supports the call
for 1 million CHWs by 2015.
2. Increase engagement with CBOs and FBOs: To more
fully embrace the potential of existing community organizations in PMTCT scale up, it is recommended that PMTCT implementers identify and more
fully collaborate with local CBOs and FBOs; that
donors increase technical and financial support for
CBOs and FBOs, and that governments support the
engagement and capacity development of CBOs and
FBOs.
3. Bring accountability closer to the level of service
provision: Emerging evidence indicates that community-based monitoring can increase the uptake and
quality of health services, ultimately improving health
outcomes. National and local PMTCT programmes are
encouraged to pursue mechanisms for communitybased monitoring using a rights-based and collaborative approach with community members.
4. Promote community-driven communication: Issues
surrounding ending vertical transmission, HIV, sexual
and reproductive health and MNCH, including gender relations, are deeply rooted in culture and
community. Communities themselves are best positioned to identify, challenge and transform harmful
practices and norms. Governments, implementers
and donors should invest in community-led SBCC
programmes that empower citizens, especially
women living with HIV.
5. Engage persons living with HIV to provide peer
support: Peer support is a key element of many
PMTCT programmes. Qualitative evidence suggests
that peer support can improve self-esteem, encourage positive living and reduce stigma, including selfstigma. This paper recommends building on peer
engagement in locally relevant and sensitive ways to
facilitate PMTCT scale up.
6. Empower communities to maximize their assets and
identify their own solutions for PMTCT scale up:
Programmes can benefit by supporting community
members to identify barriers, mobilize existing
resources and create their own local solutions.
Factors in the success of this approach include
providing communities with the relevant information and opportunities for constructive dialogue as
well as adequate seed resources and technical
support to mount and sustain their responses.
6
7. Support community activism for improved and
sustained political commitment: Community advocates have had a role in advancing the HIV response
since its inception. They have been an outspoken
and effective voice for disenfranchized groups
hard hit by the epidemic. Investment in developing
local advocacy skills and sustaining strategic activism will be vital to meet the goals of the Global
Plan.
8. Develop and share tools to facilitate decision-making
and implementation of locally appropriate community engagement activities: There is an urgent need
for concrete tools to assist country teams in planning, implementing and evaluating their community
engagement strategies and activities.
9. Develop
better
indicators
for
community
engagement: There is a pressing need for better
indicators to describe and measure the process and
results of PMTCT programmes engaging with communities. There is also need to conduct more
evaluation of community engagement practices
especially in terms of health outcomes.
10. Cost analysis: Very little information was found on
the costs associated with community engagement.
Guidance for donors and implementers would be
greatly strengthened by more cost analysis,
especially studies that compare the cost effectiveness of different approaches to community
engagement.
Authors’ affiliations
1
Freelance consultant, Mbabane, Swaziland; 2Karusa Kiragu, UNAIDS
Secretariat, Evidence, Information and Policy Department, Geneva,
Switzerland.
Competing interests
The authors declare that they have no competing interests. Gulaid was a
consultant contracted for this work; Kiragu is a senior advisor at UNAIDS. This
paper was funded by UNAIDS.
Authors’ contributions
Kiragu and Gulaid developed the concept, Gulaid conducted the literature
review, interviews and prepared the manuscript; both authors revised and
finalized the manuscript. Both authors have read and approved the final
manuscript.
Abbreviations
ANC, antenatal care; ARV, anti-retroviral; CBO, Community-based organization;
CHW, community health worker; FBO, faith-based organization; MNCH,
maternal, neonatal and child health; NPP, National Partnership Platform;
PMTCT, prevent mother-to-child transmission (of HIV); SBCC, social and
behaviour change communication; SSA, sub-Saharan Africa; TAC, Treatment
Action Campaign.
Acknowledgements
Georgina Caswell, Program Officer, Global Network of People Living with
HIVAIDS (GNP ), South Africa; Lucy Ghati, Program Officer, National
Empowerment Network of People Living with HIV/AIDS in Kenya (NEPHAK),
Kenya; Geoff Foster, Founder, Family AIDS Caring Trust (FACT), Zimbabwe.
Robin Gorna, Consultant, Mothers2Mothers, South Africa. Alana Hairston
and Damilola Walker, Advisors, Elizabeth Glaser Pediatric AIDS Foundation,
USA; Kate Iorpenda, Senior Advisor Children and Impact Mitigation,
International HIV/AIDS Alliance, UK; Stuart Kean, Senior Policy Advisor
Vulnerable Children and HIV/AIDS, World Vision International, UK; Sally
Smith, Partnership Advisor and Robin Jackson, Senior Advisor, UNAIDS,
Geneva.
References
1. WHO, UNICEF, UNAIDS. Towards universal access; scaling up priority HIV/
AIDS interventions in the health sector. Geneva: WHO, UNICEF, UNAIDS; 2010.
2. WHO and UNICEF with the Inter-Agency Task Team. Guidance on global
scale-up of the prevention of mother-to-child transmission of HIV: towards
universal access for women, infants and young children and eliminating
HIV and AIDS among children. Geneva: WHO; 2007.
3. UNAIDS. Joint action for results outcome framework: we can prevent
mothers from dying and babies from becoming infected with HIV. Geneva:
UNAIDS; 2011.
4. UNAIDS. Promising practices in community engagement for the elimination
of new HIV infections in children by 2015 and keeping their mothers alive.
Geneva: UNAIDS. Forthcoming 2012.
5. Hillery G. Definitions of community: areas of agreement. Soc Forces.
1995;20:11123.
6. Macqueen KM, McLellan E, Metzger DS, Kegeles S, Strauss RP, Scott R, et al.
What is community? An evidence-based definition for participatory public
health. Am J Public Health. 2001;91(12):192938.
7. Principles of Community Engagement (Second Edition): Clinical and Translational Science awards Consortium Community Engagement Key Function
Committee Task Force on the Principles of Community Engagement, NIH
Publication No. 11-7782, June 2011, accessed 2012 June 23. http://www.atsdr.
cdc.gov/communityengagement/pdf/PCE_Report_508_FINAL.pdf.
8. Rosato M, Laverack G, Grabman LH, Tripaghy P, Nair N, Mwansambo C, et al.
Community participation: lessons for maternal, newborn and child health,
Alma Ata: rebirth and revision 5, Lancet. 2008;372:962971
9. Leonard A, Mane P, Rutenberg N. Evidence for the importance of
community involvement: implications for initiative to prevent mother-to-child
transmission of HIV. New York: Population Council and ICRW; 2001.
10. The Earth Institute of Columbia University, One million CHWs: Technical
Task Force Report. New York: Columbia University; 2011.
11. WHO. Task shifting: rational redistribution of tasks among health workforce
teams: global recommendations and guidelines. Geneva: WHO Press; 2008.
12. International HIV Alliance: Frontiers Prevention Project. 100 participatory
tools to mobilize communities for HIV/AIDS, 2006.
13. Blackett-Dibinga K, Sussman L. Strengthening the response for children
affected by HIV and AIDS through community-based management information systems. Joint Learning Initiative on Children and AIDS (JLICA), 2008
Feb 29.
14. Scaling up the response to gender-based violence in PEPFAR: PEPFAR
consultation on gender-based violence, Washington DC: AIDSTAR1; 2010
May 67.
15. Bjorkman M, Svensson J. Power to the people: evidence from a
randomized field experiment on community-based monitoring in Uganda.
World Bank Policy Research Working Paper #4268; 2008.
16. Mugwaneza P. National experience in male involvement in ANC/PMTCT
in Rwanda (PowerPoint), presented at the sub-regional consultation to
discuss strengthening male involvement in the elimination of mother-to-child
transmission of HIV and keeping their mothers alive, Kigali; 2011.
17. Garg S, Laskar AR. Community-based monitoring: key to success of
national health programmes. Indian J Community Med. 2010;35(2):2146.
18. Sinkala M, Nguni CM, Doherty A, Conley K, Kaliyangile C, Chilufya M et al.
Men Taking Action (MTA): a strategy for male partner involvement in PMTCT
services in Zambia (abstract 462 and PPT). HIV/AIDS Implementers Meeting
Kampala, Uganda, June 2008.
19. Parker W, Birdsall K. HIV/AIDS, Stigma and Faith-based Organisations:
a review, Futures Group; 2005.
20. Besser M. Mothers2mothers programme, personal communication; 2011.
21. Kim YM, Lukwago J, Neema S. Final evaluation of the project for expanding
the role of networks of people living with HIV/AIDS. Final Report. New York:
Population Council; 2009 Sep.
22. AED. Trends to watch: male involvement in PMTCT in Botswana,
Washington DC [cited 2011 Aug 11]. Available from: http://coach.aed.org/
Libraries/Prevention/Male_Involvement_in_PMTCT_in_Botswana.sflb.ashx
23. McLaughlin P, Tessema H, Hagos S. Mother-support-group initiation and
scale-up in Ethiopia’s PMTCT program [abstract 1219]. HIV/AIDS Implementers’
Meeting, Windhoek Namibia, June 2009.
24. Hope R, Bodasing U. Ethiopia evaluation of the mothers’ support group
strategy. Washington DC: USAID; 2009 Dec.
25. Sequeira D’Mello BS, Mbatia R, Andrews L, Chen L, Ramadhani A,
Biribonwcha H, et al. Comprehensive PMTCT care and psychosocial support
7
in Tanzania through Family Support Groups [abstract 1500]. HIV/AIDS
Implementers’ Meeting, Windhoek Namibia, June 2009.
26. Muwa B, Mugume A, Buzaalirwa L, Nsabagasani X, Kintu P. The role of
family support groups in improving male involvement in PMTCT Programmes.
Paper presented at the fifth African Population Conference, 2007 Dec 1014;
Arusha.
27. Personal communication, UNICEF, Mozambique; 2011 Sept.
28. USAID and Access. How to mobilize communities for improved maternal
and newborn health; Baltimore, Maryland: JHPIEGO-ACCESS Project; 2009 Apr.
29. Ekirapa-Kiracho E, Waiswa P, Hafizur Rahman M, Makumbi F, Kiwanuka N,
Okui O, et al. Increasing access to institutional deliveries using demand and
supply side incentives: early results from a quasi-experimental study. Int Health
Hum Rights. 2011;11(Suppl 1):S11.
30. International HIV/AIDS Alliance (key informant interview).
31. Silva AL. Maternal health and transport: implementing an emergency
transport scheme in northern Nigeria. London UK: Transaid; 2011. http://
www.afcap.org/Documents/Maternal%20health%20and%20transport%2020implementing%20an%20emergency%20transport%20scheme%20in%20
Northerm%20Nigeria.pdfb
32. Amoaten S. Supporting aid effective responses to children affected by
AIDS: lessons learnt on channelling resources to community based organisations. New York: United Nations Children’s Fund and World Vision; 2011.
33. Heywood M. South Africa’s treatment action campaign: combining law
and social mobilization to realize the right to health, Journal of Human Rights
Practice. 2009;1(1):1436.
34. International HIV/AIDS Alliance (key informant interview) 2011.
35. Humana people to people movement. Botswana: Total Control of the
Epidemic (TCE) [cited 2012 Mar 12]. Available from: http://www.humana.org/
TCE-Countries/tce-in-botswana
36. Department of HIV/AIDS Prevention and Care, Government of Botswana.
Prevention of mother to child transmission [cited 2012 Mar 12]. Available
from: http://www.hiv.gov.bw/prevention_of_mother2child_transmission.php
37. World Health Organization. Male involvement in the prevention of
mother-to-child transmission of HIV. Geneva, WHO, 2012.
38. Federal HIV/AIDS Prevention and Control Office (HAPCO): The Multisectoral HIV/AIDS Response Annual Monitoring & Evaluation Report. 2003 EFY
(July 2010June 2011). Addis Ababa, HAPCO, July 2011.
39. Rifkin SB. ‘‘Lessons from community participation in health programmes: a
review of the post Alma-Ata experience’’. International Health. 2009;1(1):
316. accessed 2012 June 24. http://www.internationalhealthjournal.com/
article/S1876-3413(09)00002-3/fulltext
8
Kim MH et al. Journal of the International AIDS Society 2012, 15(Suppl 2):17389
Research article
The Tingathe programme: a pilot intervention using community
health workers to create a continuum of care in the prevention
of mother to child transmission of HIV (PMTCT) cascade of
services in Malawi
Maria H Kim*§,1, Saeed Ahmed*1, W Chris Buck2, Geoffrey A Preidis1, Mina C Hosseinipour3,4, Avni Bhalakia2,
Debora Nanthuru2, Peter N Kazembe2, Frank Chimbwandira5, Thomas P Giordano6, Elizabeth Y Chiao6,
Gordon E Schutze1 and Mark W Kline1
§
Corresponding author: Maria H Kim, Baylor College of Medicine International Pediatric AIDS Initiative at Texas Children’s Hospital, Baylor College of Medicine,
Houston, TX, USA. Tel: 832-822-1038. ([email protected])
*These authors contributed equally to this work.
Abstract
Introduction: Loss to follow-up is a major challenge in the prevention of mother to child transmission of HIV (PMTCT)
programme in Malawi with reported loss to follow-up of greater than 70%. Tingathe-PMTCT is a pilot intervention that utilizes
dedicated community health workers (CHWs) to create a complete continuum of care within the PMTCT cascade, improving
service utilization and retention of mothers and infants. We describe the impact of the intervention on longitudinal care starting
with diagnosis of the mother at antenatal care (ANC) through final diagnosis of the infant.
Methods: PMTCT service utilization, programme retention and outcomes were evaluated for pregnant women living with HIV
and their exposed infants enrolled in the Tingathe-PMTCT programme between March 2009 and March 2011. Multivariate
logistic regression was done to evaluate maternal factors associated with failure to complete the cascade.
Results: Over 24 months, 1688 pregnant women living with HIV were enrolled. Median maternal age was 27 years (IQR, 23.8 to
30.8); 333 (19.7%) were already on ART. Among the remaining women, 1328/1355 (98%) received a CD4 test, with 1243/1328
(93.6%) receiving results. Of the 499 eligible for ART, 363 (72.8%) were successfully initiated. Prior to, delivery there were
93 (5.7%) maternal/foetal deaths, 137 (8.1%) women transferred/moved, 51 (3.0%) were lost and 58 (3.4%) refused ongoing
PMTCT services. Of the 1318 live births to date, 1264 (95.9%) of the mothers and 1285 (97.5%) of the infants received ARV
prophylaxis; 1064 (80.7%) infants were tested for HIV by PCR and started on cotrimoxazole. Median age at PCR was 1.7 months
(IQR, 1.5 to 2.5). Overall transmission at first PCR was 43/1047 (4.1%). Of the 43 infants with positive PCR results, 36 (83.7%)
were enrolled in ART clinic and 33 (76.7%) were initiated on ART.
Conclusions: Case management and support by dedicated CHWs can create a continuum of longitudinal care in the PMTCT
cascade and result in improved outcomes.
Keywords: prevention of mother to child transmission (PMTCT); early infant diagnosis (EID); paediatric HIV; HIV; task shifting;
community engagement; community health workers; retention; loss to follow up.
Received 17 December 2011; Accepted 16 May 2012; Published 11 July 2012
Copyright: – 2012 Kim MH et al; licensee International AIDS Society. This is an open access article distributed under the terms of the Creative Commons Attribution
is properly cited.
Introduction
In 2011, UNAIDS announced a call to eliminate new
paediatric HIV infections among children by 2015 [1].
Effective medical interventions for prevention of mother to
child transmission of HIV (PMTCT) have been known since
the late 1990s, and in developed countries, almost no new
paediatric HIV infections occur [2,3]. Globally, though, an
estimated 370,000 children acquired HIV in 2009, the vast
majority through vertical transmission [1]. This disparity in
outcomes has not been due to a lack of effective medications
or tools. The World Health Organization (WHO) PMTCT
guidelines detail simple and effective interventions that
make transmission rates of less than 5% feasible, even
among breastfeeding populations [4]. Rather, persistent
poor outcomes in developing countries are the result of
mothers living with HIV and exposed infants not receiving the
full array of available services [58].
Figure 1 provides details on the full PMTCT cascade and
current utilization rates in sub-Saharan Africa. National
guidelines and programs in high burden countries, including
Malawi, often subdivide aspects of this cascade into separate
PMTCT (vertical transmission), antiretroviral therapy (ART),
early infant diagnosis (EID) and paediatric HIV programs,
frequently with different providers and service locations for
1
Figure 1. The PMTCT cascade of services: steps, estimates of coverage in sub-Saharan Africa and CHW responsibilities in the programme.
each component. Resulting poor utilization of available
services, lack of coordination between providers and high
rates of loss to follow-up have led to persistent high infection
rates in exposed children [1,8,9]. It has been shown that,
even with highly efficacious combination antiretroviral
interventions, only marginal reductions in childhood HIV
infections can be achieved without improved retention of
pregnant mothers and infants within the PMTCT cascade of
services [10]. Human resource shortages in high burden
countries further compound programme inefficiencies and
limit the ability of the healthcare system to make improvements. If the goal of eliminating new paediatric infections is
to be reached, interventions to improve health systems
performance and to address human resource needs are
required. Task shifting with the use of community health
workers (CHWs) has been suggested as one strategy to
2
Figure 2. (a) Components of the PMTCT cascade available at programme intervention sites. (b) Curriculum of community health worker
training.
address these challenges within resource-limited settings
[1115].
In March 2009, Baylor College of Medicine Children’s
Foundation Malawi, in collaboration with the Malawi Ministry
of Health (MOH), initiated a pilot community-based intervention in Lilongwe that uses lay CHWs as a bridge linking the
government PMTCT, EID and paediatric HIV programs. Called
Tingathe-PMTCT (meaning ‘‘yes we can’’ in the local Chichewa
language), the intervention was designed to create a new
paradigm in PMTCT service delivery and end the compartmentalization of services into distinct PMTCT, EID and
paediatric HIV subunits [9]. Tingathe CHWs ensured long-
itudinal care throughout the full PMTCT cascade, starting with
diagnosis of the mother at antenatal care (ANC) and ending
with final diagnosis and treatment of the infant. This paper
provides details on the pilot intervention as well as a current
snapshot of our patient cohort. Impact on patient retention,
utilization of services and outcomes was evaluated.
Methods
Intervention setting and patient population
The Tingathe-PMTCT pilot programme took place in Area 25
and Kawale, two large peri-urban communities in Lilongwe.
The estimated population is 310,000 people, with 15,000
3
ANTENTAL
ACCESS Antenatal Care
TEST for HIV infection
and ENROLL into care
DETERMINE ART
eligibility
HIV-infected, pregnant women
1688
ART status at enrolment
1355
Received CD4 testing
1328
Received CD4 result
1268
Eligible for ART by CD4 result
INITIATE ART/ PMTCT
prophylaxis
93.6%
499
Initiated ART
363
72.8%
Number of deliveries/live births
FOLLOW-UP
333
98%
1318
Received PMTCT maternal prophylaxis
1264
Delivered at health center
1273
95.9%
POSTNATAL
ACCESS Postnatal care
TEST for HIV infection
and ENROLL into care
DETERMINE HIV status
of infant
INITIATE ART
Received PMTCT infant prophylaxis
97.5%
1285
Infant enrolled into care
1064
HIV DNA PCR done and CPTstarted
1064
HIV DNA PCR result to care giver
1024
Positive PCR test result
43
4.1%
Infant enrolled in ART clinic
36
83.7%
Infant Initiated on ART
33
76.7%
80.7%
80.7%
96.2%
FOLLOW UP
Abbreviations: ART antiretroviral treatment; DNA, deoxyribonucleic nucleic acid;
PCR, polymerase chain reaction; CPT cotrimoxazole prophylaxis,
Figure 3.
Steps of PMTCT cascade completed by mother-infant pairs in programme intervention.
deliveries/year, 2000 HIV-exposed infants delivered/year and
12% adult HIV prevalence [16]. Over 96% of pregnant women
attend at least one antenatal visit [17] and 99% of ANC
attendees are tested for HIV [18,19].
Routine PMTCT services available at intervention sites
All PMTCT clinical care was provided in accordance with MOH
and WHO guidelines [20,21]. Figure 2a details all components
of the PMTCT cascade available at the intervention sites.
HIV testing, counselling and consent were conducted via optout testing per MOH guidelines.
At the start of our programme, ART eligibility was defined
as WHO Stage 3 or 4 or CD4 5250 cells/mm3 [21]. ART
eligibility changed in August 2010 to CD4 5350 cells/mm3 for
pregnant or lactating women living with HIV.
For women who did not qualify for ART, single dose
nevirapine for the mother and infant and a bottle of
zidovudine (AZT) syrup for the infant was dispensed at the
first ANC visit. AZT was dispensed beginning at 28 weeks, and
mothers returned for monthly refills. A 1-week supply of AZT/
lamivudine (3TC) tail was distributed during labour and
delivery [21].
During the intervention period, the national infant feeding
guidelines recommended exclusive breastfeeding until 6
months of age followed by gradual weaning [22,23]. Universal
ART initiation for HIV-infected infants younger than 1 year of
age was the standard of care.
Preintervention data
We used three sources for preintervention data. The first was
a published report of maternal and infant utilization of
PMTCT, EID and paediatric HIV services at five sites (including
our two intervention sites) within Lilongwe between 2004
and 2008 [19]. This source contained preintervention comparison data for PMTCT prophylaxis, infant PCRs and ART
initiation for HIV-infected infants. For information not
included in this report, we used the 2004 Malawi Demographic and Health Survey, which provided national statistics
for numbers of women accessing ANC, location of delivery
and infant feeding choice after birth [17]. Finally, ANC CD4
log records documented CD4 test dates and whether or
not results were returned to pregnant women. Consistent
records were not kept at A25. At Kawale, records were
available from March to October 2008.
Details of the pilot intervention
Intervention overview
The main focus of this programme was CHW-based patient
case management in both the health facility and community
(Figure 1). The intervention began at ANC when pregnant
women identified as living with HIV were assigned a
dedicated CHW and voluntarily enrolled into the programme.
CHWs ensured that mother-infant pairs received all necessary
PMTCT services. They followed their clients at their homes
and at health centres, from initial diagnosis up until confirmation of definitive HIV-uninfected status after cessation
of breastfeeding or successful ART initiation for HIV-infected
infants. Receipt of PMTCT was recorded only upon confirmation with the mother after delivery to verify that medication
had actually been ingested, not just dispensed [7]. Women
living with HIV who were identified at labour and delivery
4
or after the birth of the infant were also followed up and
provided services but were not included in this cohort.
CHW selection, training and roles
Criterion for CHW selection included living within the
community, completion of primary schooling and ability to
read and write in English and Chichewa, ability to ride a
bicycle and HIV-infected or affected. Both men and women
were recruited. Due to the large volume of applicants, we
first conducted group interviews, inviting those who performed well in these for individual interviews. Once selected,
CHWs earned a stipend for work-related transportation and
food (2.50 USD/day).
A specialized 2-week training, followed by a 2-week on-site
orientation, was developed (Figure 2b). Trainees were monitored closely by supervisors and were only allowed to conduct
unsupervised patient visits after competency had been
verified. CHWs also received half-day quarterly refresher
trainings by Baylor paediatricians.
To help free up clinical staff for essential clinical care,
specific tasks were shifted to CHWs, including patient
registration, nutritional assessments, infant feeding counselling, pill counting and distribution of nutritional supplements.
All CHWs were responsible for both health centre-based tasks
(40% time) and community work (60% time). CHWs generally
followed up to a maximum of 50 mother-infant pairs at one
time.
Community sensitization/education
Prior to the programme intervention, consultative meetings
were conducted with community leaders. CHWs conducted
daily education sessions in the health centres and held
ongoing sensitization meetings in the community. The main
focus of education was promoting the utilization of PMTCT,
EID and paediatric HIV treatment services.
Monitoring, evaluating and supervising CHW activities
An individual patient mastercard was used to facilitate
patient case management, and a patient register was used
to monitor CHW activities. The mother-infant mastercard was
opened on programme entry, updated after every visit and
key data entered into registers weekly. Information from
registers was entered into a Microsoft Access database
bimonthly. CHWs were supervised weekly by site supervisors
and monthly by the programme coordinator. Supervisors also
conducted unscheduled visits with patients to ensure that
they were satisfied with the services being provided. CHWs
received bi-annual performance evaluations.
Programme exit/patient outcomes
Mother-infant pairs exited the programme if they reached one
of the following outcomes: (1) maternal death; (2) miscarriage, stillbirth; (3) infant death; (4) transferred/moved outside the catchment area; (5) lost (patient tracing attempted
but patient could not be found); (6) despite counselling,
patient refused to return for clinical care; (7) infant infected
and successfully enrolled into care and started on ART; and
(8) infant definitively not infected (weaned and repeat PCR
negative).
Statistical analysis
Data from pregnant women and exposed infants enrolled in
the Tingathe-PMTCT programme between March 2009 and
March 2011 were analysed. The closing date for follow-up
was October 31, 2011. Data were de-identified prior to
analysis. Aggregate data were reported as mean with
standard deviation or median with interquartile range (IQR)
based on normality. For the multivariate logistic regression, all outcomes preventing completion of the PMTCT
cascade were grouped together including miscarriage/foetal
demise, maternal/infant death, transferred/moved, lost and
refused ongoing care. To identify factors that predicted noncompletion, unadjusted and adjusted odds ratios and 95%
confidence intervals were obtained using binary and multivariate logistic regression, respectively. All covariates, irrespective of the significance of the binary model, were
entered into the multivariate model by forward stepwise
selection, with entry testing based on the significance of the
score statistic and removal testing based on the likelihoodratio statistic with conditional parameter estimates. Only
covariates with a significant score statistic (pB0.05) were
retained in the final model. Analyses were performed using
IBM SPSS Statistics (version 19; SPSS, Inc., Chicago, IL, USA).
The Malawi National Health Sciences Research Committee
and the Baylor College of Medicine institutional review board
granted ethics approval.
Results
Maternal characteristics at enrolment
Records from 1688 pregnant women living with HIV were
analysed (Table 1). The majority, 92.9%, enrolled during their
second or third trimesters and 76.3% were newly diagnosed
with HIV. At enrolment, 19.7% were on ART.
Service utilization of antenatal components
of the PMTCT cascade
CHWs tracked service utilization by each mother-infant
pair through the PMTCT cascade (Table 2, Figure 3). Of those
mothers not on ART at enrolment, 98% had a CD4 drawn, and
93.6% of these mothers received these results. This compares
to 22.5% who received results before the intervention.
Based on CD4 count, 36.8% of mothers met criteria for
ART eligibility. Of these, 72.8% were successfully initiated on
ART.
Of the 1318 live births, 87.3% received the most ideal
combination of either full combination prophylaxis (47.3%) or
ART (40%). Prior to the intervention, only 8.8% of mothers
received ART.
Prior to delivery, there were 5.7% maternal/foetal deaths/
still births, 8.1% transferred/moved. 3.0% lost and 3.4%
refused ongoing PMTCT services. There were 1.8% women
still recorded as pregnant as of the closing date for data
analysis.
Service utilization of postnatal components
of the PMTCT cascade
Of the 1318 live births, 97.5% received infant PMTCT, and
90.5% received the correct single dose nevirapine plus AZT
tail (see Table 2 and Figure 3).
5
Table 1. Characteristics of mothers at programme enrolment
Total (n 1688)
Median maternal age, years (IQR)
27.0 (23.8 to 30.8)
Trimester of pregnancy, n (%)
First (0 to 13 weeks)
Second (14 to 26)
Third (27 to 40)
Unknown-missing
HIV status at enrolment, n (%)
Already known to be HIV-infected
Newly diagnosed as HIV-infected
107 (6.3)
1025 (60.7)
543 (32.2)
13 (0.8)
400 (23.7)
1288 (76.3)
ART eligibility by CD4 counta, n (%)
On ART
333 (19.7)
ART eligible
499 (29.6)
Does not meet ART criterion
777 (46)
ART eligibility was not determined
WHO stage at programme registration, n (%)
Stage 1/2
Stage 3
Stage 4
Not done
CD4 cells/mm3 for women not on ARTb
79 (4.7)
30 (1.7)
11 (0.7)
8 (0.5)
1639 (97.1)
1355
B200, n (%)
204 (15.1)
200 to 349, n (%)
336 (24.8)
350 to 499, n (%)
]500, n (%)
353 (26.0)
375 (27.7)
CD4 taken but unknown resultc
60 (4.4)
CD4 not taken
27 (2.0)
Partner disclosure status, n (%)d
Partner involved and disclosed
Partner involved but not disclosed
Partner not involved
Missing data
423 (25.1)
Outcomes and continued follow up
Overall, of the initial 1688 women, 1% of mothers died, 4.9%
of pregnancies terminated in miscarriages and stillbirths and
3.7% infants died. Furthermore, 16.8% mother-infant pairs
moved out of the catchment area, 5.0% were lost, 10.8%
refused ongoing care and 16.5% exited the programme
after receiving a definitive HIV-negative diagnosis. Of those
182 mothers who refused care, 31.8% refused care during
pregnancy, 45.6% refused after delivery but before first
PCR and 22.5% refused after the first PCR. There are 672
mother-infant pairs still active in the programme, including
31 mothers who are still pregnant and 641 exposed infants
still being breastfed.
Maternal characteristics at programme enrolment
associated with failure to complete PMTCT cascade
In bivariate analysis, maternal age of at least 20 years, along
with being ART-eligible but not on ART, were associated with
failure to complete the PMTCT cascade, whereas enrolment
later in pregnancy and having a partner who was not
involved (partner dead or separated from mother) were
associated with a higher rate of successful completion of the
cascade (Table 3). On multivariate analyses, two variables
predicted failure to complete the PMTCT cascade, namely,
being ART-eligible but not receiving therapy (odds ratio (OR),
1.69; 95% confidence interval (CI), 1.18 to 2.42) and having a
partner who was involved but not disclosed to (unaware of
the maternal HIV status; OR, 1.54; 95% CI, 1.06 to 2.23). On
the other hand, the strongest predictors of successful
completion of the PMTCT cascade were enrolment in the
third trimester (OR, 0.37; 95% CI, 0.24 to 0.58), having newly
diagnosed HIV infection (OR, 0.50; 95% CI, 0.33 to 0.75) and
having a partner who was not involved (OR, 0.43; 95% CI,
0.24 to 0.78).
1158 (68.6)
106 (6.3)
1 (B0.0)
a
Definition of ART eligibility changed in August 2010 from CD4 5250
cells/mm3 to CD45 350 cells/mm3 for HIV-infected pregnant
women; bCD4 routinely performed only on women not already on
ART at registration; cthe majority of these were CD4 samples that
were clotted or otherwise could not be processed by the laboratory
facility; dpartner disclosed defined as partner having knowledge of
maternal HIV status. Partner non-involved defined as a partner who
is dead or is otherwise separated from the mother.
Abbreviations: IQR, interquartile range; ART, antiretroviral therapy.
DNA PCR testing was performed on 80.7% of the infants.
Of the remaining infants, 3.2% were still awaiting their
first PCR, and 16.1% exited the programme (as a result of
being lost, died, transferred, moved and refused ongoing
care) before first PCR. The median age at first PCR was 1.7
months (IQR, 1.5 to 2.5). The overall MTCT transmission rate
was 4.1%.
Of the 43 infants found to be HIV-infected, 76.7% were
started on ART, with median age at initiation of 4.9 months
(IQR, 4.0 to 6.0). This is in contrast to the preintervention
period where 34.4% on infected infants were started on ART
at a median age of 9.1 months (IQR, 5.4 to 13.8).
Discussion
Ensuring a continuum of care between services in the PMTCT
cascade is essential if the goal of ending new paediatric HIV
infection is to be reached. Our results demonstrate that
coordinated, longitudinal care of mother-infant pairs is
possible in high-burden, resource-limited countries like
Malawi. In this intervention, dedicated CHWs functioning as
case coordinators created a bridge between disparate clinical
services and improved retention and service utilization at
virtually every step within the PMTCT cascade.
Key areas of improvement for mothers included receiving
CD4 counts, being started appropriately on ART if eligible and
receiving proper combination prophylaxis if not eligible for
ART. Prior to our intervention, over 90% of women only
received single dose nevirapine, reflecting the slow adoption
of the 2006 WHO recommendations [20,21]. In our cohort,
the majority of mother-infant pairs received the recommended regimen of either combination prophylaxis or ART,
resulting in a significant reduction in HIV transmission at first
PCR. Enrolment of exposed infants into care, measurement
and receipt of DNA PCR results and, finally, initiation of ART
for infected infants also improved dramatically.
Our results show marked improvement in retention
compared, not only to preintervention data from Malawi
6
Table 2. Steps of the PMTCT cascade completed by mother-infant pairs: preintervention data and programme intervention results
Programme intervention
STEP in PMTCT Cascade
Description
result
ANTENATAL
ACCESS Antenatal Care
Pregnant women accessing antenatal care
96.4% [Ref. 17]a
NA
TEST for HIV infection and
Number of women tested for HIV
99% [Ref. 19]b
NA
ENROLL into care
DETERMINE ART eligibility
HIV-infected pregnant women, n
1688
ART status, n/N (%)
on ART
Unknown
333/1688 (19.7)
Not on ART
Unknown
1355/1688 (80.3)
Needed CD4 testing
Mom received CD4 testing, n/N (%)
CD4 results returned to health centre from
1355
91.3%b,c
Unknown
1328/1355 (98)
1268/1328 (95.5)
22.5%b,c
1243/1328 (93.6)
Unknown
363/499 (72.8)
laboratory, n/N (%)
Mom received CD4 results, n/N (%)
INITIATE ART/PMTCT
prophylaxis
ART eligible by CD4 count, n/N (%)d
Started on ART, n/N (%)
499/1688 (29.6)
Number of live births to date, n
Mom received PMTCT prophylaxis or ART n/N (%)
Nevirapine only
1318
1264/1318 (95.9)
90.6% [Ref. 19]b (meds
39/1318 (2.9)
distributed at ANC only)
Nevirapine and AZT only
Not applicablee
75/1318 (5.7)
Full combination prophylaxis (sdNVP, AZT and
Not applicablee
624/1318 (47.3)
Combivir)
FOLLOW UP
Antiretroviral therapy for mothers health
8.8% [Ref. 19]b
526/1318 (40.0)
None
Unknown/missing data
0.1%
Not applicable
53/1318 (4.0)
1/1318 (0.1)
Hospital/health centre
57.2% [Ref. 17]a
1273/1318 (96.6)
Home
29.4% [Ref. 17]a
36/1318 (2.7)
Traditional birth attendant
Other/unknown/missing data
12.1% [Ref. 17]a
1.2% [Ref. 17]a
2/1318 (0.2)
7/1318 (0.5)
Place of delivery, n/N (%)
POSTNATAL
ACCESS Postnatal Care
Infant received PMTCT prophylaxis, n/N (%)
1285/1318 (97.5)
Nevirapine only
47.2% [Ref. 19]b
89/1318 (6.8)
Neviparine and zidovudine
AZT syrup only
Not applicablee
Not applicablee
1193/1318 (90.5)
3/1318 (0.2)
None
Not applicable
22/1318 (1.7)
52.8% [Ref. 19]b
11/1318 (0.8)
Exclusive breastfeeding
75.2% [Ref. 17]a
1249/1318 (94.8)
Replacement feeding
1.6% [Ref. 17]a
20/1318 (1.5)
Mixed feeding
23.3% [Ref. 17]a
2/1318 (0.2)
Infant feeding choice after birth, n/N (%)
TEST for HIV infection and
ENROLL into care
Infant received PCR test and CPT, n/N (%)f
47/1318 (3.5)
53.6% [Ref. 19]b
1064/1318 (80.7)
Number (%) tested at 52months of age
Unknown
680/1064 (63.9)
Number (%) tested at 53months of age
Unknown
904/1064 (85)
Median infant age at first HIV DNA PCR, months
3 (0.5 to 8.6) [Ref. 19]b
1.7 (1.5 to 2.5)
(IQR)
7
Table 2 (Continued )
Programme intervention
STEP in PMTCT Cascade
DETERMINE HIV status
of infant
Description
result
First DNA PCR test result returned from lab
53.6% [Ref. 19]b
1047/1064 (98.2)
First DNA PCR test results given to the caregiver
Unknown
1024/1064 (96.2)
Median time from first DNA PCR test to results
Unknown
47.5 (29.0 to 63.0)
First DNA PCR result negative
86.2%
1004/1047 (95.9)
First DNA PCR result positive
13.8% [Ref. 19]b
43/1047 (4.1)
Enrolled in ART clinic
29.5% [Ref. 19]b
36/43 (83.7)
Infected children started on ART
34.4% [Ref. 19]b
33/43 (76.7)
Median age at ART initiation months (IQR)
9.1 (5.4 to 13.8) [Ref. 19]b
4.9 (4.0 to 6.0)
given to caregiver, days (IQR)
INITIATE ART
FOLLOW UP
Mother-infant pairs still being followed in
programme intervention
672
a
Malawi countrywide data; bpreintervention data from intervention sites; cdata from Kawale site CD4 logbooks, March to October 2008;
definition of ART eligibility changed in August 2010 from CD45250 cells/mm3 to CD45350 cells/mm3 for HIV-infected pregnant women; eonly
maternal ART and nevirapine for mother and infant were available during the preintervention period; fof the 1318 live births, 212 were
discharged from the programme due to death, moving to another location or refusing ongoing care prior to receiving their first PCR; 42 infants
are still active in the programme and awaiting their first PCR.
Abbreviations: ART, antiretroviral therapy; sd-NVP, single dose nevirapine; AZT, zidovudine; PCR, polymerase chain reaction; CPT, cotrimoxazole
prophylaxis, IQR, interquartile range.
d
but also to reports from other countries within the region.
WHO estimates that in sub-Saharan Africa, only half of
women living with HIV receive any PMTCT intervention,
43% of HIV-exposed infants receive ARV prophylaxis and a
mere 6% to 15% of HIV-exposed infants receive an HIV test
[24,25].
The small percentage of infants receiving HIV testing is an
especially important issue [26]. Improving the continuum of
care within the PMTCT cascade is not only critical for
preventing HIV in exposed infants but also for reducing
mortality in those infants who become infected. The CHER
study demonstrated that HIV-infected infants suffer from
rapid immunologic deterioration, disease progression and
high mortality without early ART initiation [27]. By linking
mothers to infants, our CHWs were able to significantly
improve DNA PCR testing and entry into care and
thereby improve the rate of prompt ART initiation in infected
infants.
CHW case management improved not only programme
implementation but monitoring as well. Several studies have
documented that data collected and reported within national
PMTCT programmes are often inaccurate and incomplete
[28,29]. Some have suggested routine HIV testing of infants
at immunization clinics and inpatient facilities as a means for
improving PMTCT monitoring [30]. While such testing is
important and will provide reliable measures for programme
evaluation, the opportunities for effective interventions have
largely been missed by the time testing takes place. CHW
case management, by contrast, facilitates both service
delivery and programme monitoring.
Though our results demonstrate a marked improvement
over preintervention data, we have not yet achieved the
desired goal of greater than 90% delivery at each step of the
cascade for PMTCT to be optimally effective [10]. Reasons for
attrition included refusal to continue follow-up, movement
from the area and loss to follow up, such that close to a third
of the cohort did not complete the programme.
The population we serve is highly mobile, as demonstrated
by the 16.8% of patients who moved outside the catchment
area. Many mothers within our programme returned to their
home villages for additional support. Though our CHWs were
often aware of the move and were able to keep in touch with
some of their clients, for most, they had no means to
document whether or not mothers successfully entered care
in their new location. A national medical ID system would
assist with this type of tracking [19]. Within the programme,
we are developing improved predelivery counselling to
identify those mothers planning to return to home villages,
exploring strategies with maternal support groups organized
by home villages, and cell-phone text messaging to track
clients if they move outside our direct service areas.
We are conducting qualitative studies to further evaluate
reasons for and possible strategies to mitigate refusal of CHW
follow-up. Refusals occur throughout the cascade. Couples
counselling and testing with enhanced disclosure support
may help reduce refusal during pregnancy. Characterizing and
addressing misconceptions about testing results and the
likelihood of infection may reduce the number of mothers
refusing to get their children tested. Stressing the importance
of follow-up testing after weaning may reduce the number of
patients who default after a negative first PCR. Malawi’s
increasing emphasis on family-centred HIV care may also
encourage partners to attend clinic together, possibly
improving communication and retention in care [31].
Male involvement has been touted as a possible way to
engage more women in PMTCT services. Our findings (Table 3)
8
Table 3.
Maternal characteristics at programme enrolment associated with failure to complete PMTCT cascadea
n/N (%) (n1688)
OR of failure (95% CI)
p-value
AOR of failure (95% CI)b
p-value
0.027
0.056
Maternal age, n (%)
Maternal age B20
35/110 (31.8)
1.00
20 673/1578 (42.6)
1.59 (1.05 to 2.41)
Trimester of pregnancy, n (%)
First
58/107 (54.2)
1.00
Second
480/1025 (46.8)
0.74 (0.50 to 1.11)
0.147
0.79 (0.52 to 1.19)
1.00
0.260
Third
Missing data
164/543 (30.2)
13
0.37 (0.24 to 0.56)
B0.001
0.37 (0.24 to 0.58)
B0.001
0.236
0.50 (0.33 to 0.75)
HIV status at enrolment, n (%)
Already known to be HIV-infected
178/400 (44.5)
1.00
Newly diagnosed as HIV-infected
530/1288 (41.1)
0.87 (0.70 to 1.09)
1.00
B0.001
ART eligibility at enrolment, n (%)
On ART
134/333 (40.2)
1.00
Eligible but not on ART
244/499 (48.9)
1.42 (1.07 to 1.88)
0.014
1.69 (1.18 to 2.42)
1.00
0.004
Not eligible
Missing data
284/777 (36.6)
79
0.86 (0.66 to 1.11)
0.245
1.09 (0.77 to 1.54)
0.632
Partner disclosure status at enrolment, n (%)c
Partner involved and disclosed
177/423 (41.8)
1.00
Partner involved, not disclosed
510/1158 (44.0)
1.09 (0.87 to 1.37)
0.435
1.54 (1.06 to 2.23)
1.00
0.024
Partner not involved
21/106 (19.8)
0.34 (0.12 to 0.58)
B0.001
0.43 (0.24 to 0.78)
0.005
Missing
1
a
Failure to complete PMTCT cascade defined as maternal death, miscarriage, abortion, infant death, transferred out, moved, lost or refusal of
ongoing care prior to the infant’s final HIV-negative diagnosis or if found to be HIV-infected-initiatied on ART; ball five covariates were tested for
entry into the multivariate model, and all covariates except maternal age were retained in the final equation, based on the significance (p-value)
of the Wald score; cpartner disclosed defined as partner having knowledge of maternal HIV status. Partner non-involved defined as a partner
who has died or is otherwise separated from the mother.
Abbreviations: OR, odds ratio; CI, confidence interval; ART, antiretroviral therapy.
suggest that women without any partner involvement were
most likely to complete the cascade, whereas those women
with involved but undisclosed partners were least likely. These
findings not only reemphasize the importance of partner
disclosure but also highlight the potentially obstructive role
that partners may play in accessing services, as observed in
other studies [32], or the value of women’s independence to
make their own decisions.
There are several limitations to our study. The first is a lack
of directly comparable preintervention data. Our prior
referenced study was from the same area and immediately
preceded our intervention, retrospectively analysing all
available records over a 4-year period [19]. By contrast, the
present study only followed up patients enrolled in the
Tingathe programme, which may have introduced measurement bias and favourably skewed outcomes. On the other
hand, the prior study had a much longer follow-up period
and also included infant testing data from the inpatient ward
at Kamuzu Central Hospital and the attached Baylor Centre of
Excellence, which may have inflated the infant follow-up
results. Many of these infants likely fell out of the PMTCT
cascade, but reentered when ill and were identified on
admission at Kamuzu Central Hospital or the Baylor Centre of
Excellence. Despite these qualifications, this report provided
the most direct preintervention data with which to compare
our results. Moving forward, the data presented here
provides a good baseline for similarly designed prospective
programmatic studies.
Our second limitation was that we did not measure ANC
attendance or HIV testing at ANC. As prior studies had
already demonstrated both were over 95% [1719] in our
setting, we did not independently assess this. This limits the
external validity of our study, as ANC attendance and HIV
testing rates are not as robust in many comparable settings.
Third, we noted that some women were lost between HIV
testing and referral to our CHWs. To address this issue, HIV
testing at ANC was largely shifted to our CHWs, so that
registration could be made immediately upon diagnosis. We
do not have good data on how many women may have
refused services between HIV testing and enrolment into our
programme. To address this issue, we have developed an
enrolment register that we are now piloting at our sites. This,
combined with improved documentation of testing within
ANC, will provide us with solid data on this critical service
point in the future [31].
Finally, this programme was not implemented as part of a
controlled trial, and there were other providers of services at
various time points during the intervention. These providers
may also have contributed to the overall improved outcomes
observed.
Changes being made in the Malawi PMTCT guidelines
provide both new opportunities and challenges for effective
9
service delivery. In 2011, Malawi adopted an approach for
PMTCT referred to as Option B, where pregnant and
lactating women living with HIV will automatically be started
on ART for life [33]. This welcome approach simplifies the
maternal assessment, obviating the need for CD4 measurements. However, the efficacy of this simplified approach will
be compromised unless efforts are made to link newly
identified women to ART services and to ensure identification, enrolment into care and testing of exposed infants. This
is especially true as infant feeding guidelines now recommend breastfeeding for all children, including HIV-exposed
infants, through the second year of life [31]. Furthermore, we
need to ensure that pregnant women present earlier to care,
as a significant portion of women in our study presented late.
We also need to prevent women from refusing care and
dropping out, for whatever reason. Ensuring continued
clinical care and follow-up testing after weaning through
this extended period will be a considerable challenge that
may be facilitated by CHW case management.
Conclusions
We believe the Tingathe-PMTCT programme has defined a
new paradigm for PMTCT service delivery. We attempted to
break down the compartmentalization and resulting loss to
follow-up between PMTCT, EID and paediatric HIV services.
We believe that with further refinement, CHWs can help
establish a system in which mothers and infants are
effectively followed up and linked throughout the full PMTCT
cascade. Establishing such systems that ensure continuity of
care will be critical if the goal of ending new paediatric
infections is to be reached.
1
Baylor College of Medicine International Pediatric AIDS Initiative at Texas
Children’s Hospital, Baylor College of Medicine, Houston, TX, USA; 2Baylor
College of Medicine-Abbott Fund Children’s Clinical Center of Excellence,
Lilongwe, Malawi; 3UNC Project, Lilongwe, Malawi; 4University of North
Carolina School of Medicine Chapel Hill, NC, USA; 5Malawi Ministry of Health,
Lilongwe, Malawi; 6Department of Medicine, Baylor College of Medicine,
Houston, TX, USA
Competing interests
The authors declare that they have no competing interests.
MHK and SA conceived and designed the study, helped analyze the data,
interpreted findings and wrote the manuscript. WCB, AB and DN assisted with
the study in the field, contributed to data management and reviewed the
manuscript. GP revised it critically and participated in statistical analysis and
interpretation. MCH, PNK, FC, TPG, EYC, GSC and MWK revised it critically for
important intellectual content. All authors have read and approved the final
manuscript.
Abbreviations
3TC, lamivudine; ANC, antenatal care; ART, antiretroviral therapy; AZT,
zidovudine; CHWs, community health workers; CI, confidence interval; EID,
early infant diagnosis; IQR, interquartile range; OR, odds ratio; PMTCT,
prevention of mother to child transmission of HIV.
Funding sources
The programme was financially supported by the Clinton HIV-AIDS
Initiative (CHAI), Bristol-Myers Squibb Foundation, Abbott Fund, Texas
Children’s Hospital and United States Agency For International Development
(USAID).
Acknowledgements
We thank the Malawi Ministry of Health for their partnership in this
endeavour. We thank the Baylor College of Medicine Children’s Foundation
Malawi data team, clinicians and nurses who participated in data collection,
organization and cleaning. We are grateful to all the HIV-infected women and
children who enrolled in our programme, and the CHWs and clinicians who
helped care for them. Special thanks to Elaine Abrams for her editorial support.
This publication was made possible by support from USAID. The findings and
conclusions in this report are those of the authors and do not necessarily
represent the official position of USAID. This paper was presented in part as a
poster at the International AIDS Society Conference in Rome, July 2011
Abstract #TUPE291.
References
1. UNAIDS. Countdown to zero: global plan towards the elimination of
new HIV infections among children by 2015 and keeping their mothers alive,
20112015. Geneva: UNAIDS; 2011.
2. Mofenson LM. Successes and challenges in the perinatal HIV-1 epidemic in
the United States as illustrated by the HIV-1 serosurvey of childbearing women.
Arch Pediatr Adolesc Med. 2004;158(4):4225.
3. European Collaborative Study. Mother-to-child transmission of HIV in the
era of highly active antiretroviral therapy. Clin Infect Dis. 2005;40(3):45865.
4. WHO. Antiretroviral drugs for treating pregnant women and preventing HIV
infection in infants: recommendations for a public health approach. Geneva:
WHO; 2010.
5. Ahoua L, Ayikoru H, Gnauck K, Odaru G, Odar E, Ondoa-Onama C, et al.
Evaluation of a 5-year programme to prevent mother-to-child transmission of
HIV infection in Northern Uganda. J Trop Pediatr. 2010;56(1):4352.
6. Stringer EM, Ekouevi DK, Coetzee D, Tih PM, Creek TL, Stinson K, et al.
PEARL Study Team. Coverage of nevirapine-based services to prevent motherto-child HIV transmission in 4 African countries. JAMA. 2010;304(3):293302.
7. Mirkuzie AH, Hinderaker SG, Sisay MM, Moland KM, Mørkve O. Current
status of medication adherence and infant follow up in the prevention of
mother to child HIV transmission programme in Addis Ababa: a cohort study.
J Int AIDS Soc. 2011;14:50.
8. Manzi M, Zachariah R, Teck R, Buhendwa L, Kazima J, Bakali E, et al. High
acceptability of voluntary counselling and HIV-testing but unacceptable loss to
follow up in a prevention of mother-to-child HIV transmission program in rural
Malawi: scaling up requires a new way of acting. Trop Med Int Health.
2005;10:124250.
9. Ciaranello A, Park J, Ramirez-Avila L, Freedberg K, Walensky R, Leroy V. Early
infant HIV-1 diagnosis programs in resource-limited settings: opportunities
for improved outcomes and more cost-effective interventions. BMC Med.
2011;9:59.
10. Barker PM, Mphatswe W, Rollins N. Antiretroviral drugs in the cupboard
are not enough: the impact of health Systems’ performance on mother-to-child
transmission of HIV. J Acquir Immune Defic Syndr. 2010;56(2):e458.
11. Zachariah R, Ford N, Philips M, Lynch S, Massaquoi M, Janssens V, et al.
Task shifting in HIV/AIDS: opportunities, challenges and proposed actions for
sub-Saharan Africa. Trans R Soc Trop Med Hyg. 2009;103(6):54958.
12. McCollum ED, Preidis GA, Kabue MM, Singogo EB, Mwansambo C,
Kazembe PN, et al. Task shifting routine inpatient pediatric HIV testing
improves program outcomes in urban Malawi: a retrospective observational
study. PLoS One. 2010;5(3):e9626.
13. Lehmann U, Van Damme W, Barten F, Sanders D. Task shifting: the answer
to the human resources crisis in Africa? Hum Resour Health. 2009;7:49.
14. Callaghan M, Ford N, Schneider H. A systematic review of task-shifting for
HIV treatment and care in Africa. Hum Resour Health. 2010;8:8.
15. Haines A, Sanders D, Lehmann U, Rowe AK, Lawn JE, Jan S, et al. Achieving
child survival goals: potential contribution of community health workers.
Lancet. 2007;369(9579):212131.
16. Lilongwe District Health Office. Semi-permanent data. Lilongwe: Lilongwe
District Health Office; 2008.
17. National Statistical Office (Malawi) and ORC Macro. Malawi Demographic
and Health Survey 2004. Calverton: NSO and ORC Macro; 2005.
18. Moses A, Zimba C, Kamanga E, Nkhoma J, Maida A, Martinson F, et al. UNC
Project Call to Action Program. Prevention of mother-to-child transmission:
program changes and the effect on uptake of the HIVNET 012 regimen in
Malawi. AIDS. 2008;22(1):837.
19. Braun M, Kabue MM, McCollum ED, Ahmed S, Kim M, Aertker L, et al.
Inadequate coordination of maternal and infant HIV services detrimentally
10
affects early infant diagnosis outcomes in Lilongwe, Malawi. J Acquir Immune
Defic Syndr. 2011;56(5):e1228.
20. WHO. Antiretroviral drugs for treating pregnant women and preventing
HIV infection in infants: recommendations for a public health approach.
Geneva: WHO; 2006.
21. Malawi Ministry of Health. Prevention of mother to child transmission of
HIV and paediatric HIV care guidelines. 2nd ed. Lilongwe: Malawi Ministry of
Health; 2008.
22. WHO. HIV and infant feeding: new evidence and programmatic experience:
report of a technical consultation held on behalf of the Inter-agency Task Team
(IATT) on Prevention of HIV Infections in Pregnant Women, Mothers and their
Infants. Geneva: WHO; 2006.
23. Malawi Ministry of Health. Infant and young child nutrition policy and
guidelines. Lilongwe: Malawi Ministry of Health; 2005.
24. WHO. Towards universal access: scaling up priority HIV/AIDS interventions
in the health sector: progress report. Geneva: WHO; 2010.
25. UNICEF. Children and AIDS fifth stocktaking report, 2010. New York:
UNICEF; 2010.
26. Kellerman S, Essajee S. HIV testing for children in resource-limited settings:
what are we waiting for? PLoS Med. 2010;7(7):e1000285.
27. Violari A, Cotton MF, Gibb DM, Babiker AG, Steyn J, Madhi SA, et al. CHER
Study Team. Early antiretroviral therapy and mortality among HIV-infected
infants. N Engl J Med. 2008;359:223344.
28. Mate KS, Bennett B, Mphatswe W, Barker P, Rollins N. Challenges for
routine health system data management in a large public programme to
prevent mother-to-child HIV transmission in South Africa. PLoS One.
2009;4(5):e5483.
29. Stringer EM, Chi BH, Chintu N, Creek TL, Ekouevi DK, Coetzee D, et al.
Monitoring effectiveness of programmes to prevent mother-to-child HIV
transmission in lower-income countries. Bull World Health Organ.
2008;86(1):5762.
30. Rollins N, Mzolo S, Moodley T, Esterhuizen T, van Rooyen H. Universal HIV
testing of infants at immunization clinics: an acceptable and feasible approach
for early infant diagnosis in high HIV prevalence settings. AIDS. 2009;23:
18517.
31. Malawi Ministry of Health. Clinical management of HIV in children and
adults, Malawi integrated guidelines for providing HIV services in: antenatal
care, maternity care, under 5 clinics, family planning clinics, exposed infant/
pre-ART clinics, ART clinics. 1st ed. Lilongwe: Malawi Ministry of Health; July
2011.
32. Bwirire LD, Fitzgerald M, Zachariah R, Chikafa V, Massaquoi M, Moens M,
et al. Reasons for loss to follow-up among mothers registered in a preventionof-mother-to-child transmission program in rural Malawi. Trans R Soc Trop Med
Hyg. 2008;102(12):1195200.
33. Schouten EJ, Jahn A, Midiani D, Makombe SD, Mnthambala A, Chirwa Z,
et al. Prevention of mother-to-child transmission of HIV and the health-related
Millennium Development Goals: time for a public health approach. Lancet.
2011;378(9787):2824.
11
Marcos Y et al. Journal of the International AIDS Society 2012, 15(Suppl 2):17394
Review article
Community strategies that improve care and retention along
the prevention of mother-to-child transmission of HIV cascade:
a review
Yabsera Marcos§, Benjamin Ryan Phelps and Gretchen Bachman
§
Corresponding author: Yabsera Marcos, USAID, Office of HIV/AIDS, 1201 Pennsylvania Avenue, NW, Ste 200, Washington, DC, 20004, USA. Tel: + 1 413 695-7879.
([email protected])
Abstract
Introduction: While biomedical innovations have made it possible to prevent the vertical transmission of HIV from mother to
child, poor retention along the prevention of mother-to-child transmission (PMTCT) cascade continues to limit the impact of
programmes, especially in low-resourced settings. In many of the regions with the highest burden of HIV and the greatest number
of new paediatric cases, the uptake of facility-based care by pregnant women remains low. In such settings, the continuum of care
for pregnant women and other women of reproductive age necessarily relies on the community. There is no recent review
capturing effective, promising practices that are community-based and/or employ community-oriented groups to improve
outcomes for the prevention of vertical transmission. This review summarizes those studies demonstrating that community-based
and community-oriented interventions significantly influence retention and related outcomes along the PMTCT cascade.
Methods: Literature on retention within prevention of vertical transmission programmes available on PubMed, Psych Info
and MEDLINE was searched and manuscripts reporting on key prevention of vertical transmission outcomes were identified.
Short-listed studies that captured significant PMTCT outcome improvements resulting from community-based interventions
or facility-based employment of community cohorts (e.g. lay counsellors, community volunteers, etc.) were selected for review.
Results: The initial search (using terms ‘‘HIV’’ and ‘‘PMTCT’’) yielded 430 articles. These results were further narrowed using
terminology relevant to community prevention of vertical transmission strategies addressing retention: ‘‘community,’’ ‘‘PMTCT
cascade,’’ ‘‘retention,’’ ‘‘loss to follow up’’ and ‘‘early infant diagnosis.’’ Nine of these reported statistically significant improvements
in key prevention of vertical transmission outcomes while meeting other review criteria. Short-listed articles reflect diverse
study designs and a variety of effective interventions. Two interventions occurred exclusively in the community and four effectively
employed community groups within facilities. The remaining three integrated community- and facility-based components. The
outcomes of the included studies focus on knowledge (n 3) and retention along the PMTCT cascade (n6).
Conclusions: This review captures an array of promising community-based and community-oriented interventions that
demonstratively improve key prevention of vertical transmission outcomes. Though the strategies captured here show that such
interventions work, the limited number of rigorous studies identified make it clear that expansion of community approaches and
complementary reporting and related research are sorely needed.
Keywords: HIV; PMTCT cascade; vertical transmission; loss to follow-up; retention; community oriented; community-based.
Received 12 December 2011; Revised 16 March 2012; Accepted 7 May 2012; Published 11 July 2012
Copyright: – 2012 Marcos Y et al; licensee International AIDS Society. This is an open access article distributed under the terms of the Creative Commons Attribution
is properly cited.
Introduction
While biomedical innovations and proven public health strategies have made it possible to almost completely prevent the
vertical transmission of HIV from a mother to her child, approximately 2.5 million children under 15 are currently living
with HIV, and about 1000 children newly acquire the virus on a
daily basis [1,2].The transmission of the virus from HIV-positive
women to their babies can occur during pregnancy, at the time
of delivery or through breastfeeding. Without intervention,
vertical transmission occurs in up to 4 of every 10 deliveries
among HIV-positive women [1]. Without treatment, approximately half of the children who have acquired HIV die before
two years of age, and very few survive their school years [1].
Preventing HIV amongst infants and young children involves a four pronged approach: primary prevention of HIV
among women of reproductive age using health service
delivery points and community structures; providing support
and counselling to women living with HIV to empower them
to make informed decisions about their reproductive life;
ensuring that pregnant women living with HIV are tested and
have access to treatment that will promote their health
and prevent vertical transmission of HIV to their babies; and
integrating HIV care, treatment and support for women living
with HIV and their families [3]. The effectiveness of prevention
of mother-to-child transmission (PMTCT) in low-resource
settings is limited by poor retention along the continuum
1
Figure 1. Outlines the steps of the prevention of mother-to-child transmission of HIV (PMTCT) cascade.
of care, often called the ‘‘PMTCT cascade’’ (Figure 1) [4].
This cascade refers to a stepwise process that a pregnant
woman must navigate to prevent vertical transmission and
ensure that, if her infant acquires HIV, the child receives
appropriate HIV care and treatment. While antenatal care
(ANC) serves as an entry point to identify HIV-positive
pregnant women, dropout rates during the subsequent steps
of the cascade can result in a failure to get needed treatment
to mothers and prevent their infants from acquiring HIV [5].
Cumulative losses in sub-Saharan Africa’s prevention of
vertical transmission programmes are very high. Many
mothers deliver without ever attending ANC or having the
opportunity for HIV testing. Up to 28% who enroll in ANC
are lost prior to delivery, while 8 of every 10 are lost at six
months postpartum [611]. This loss to follow-up (LTFU)
occurs at many steps along the cascade, including when
pregnant women do not return for test results between ANC
and delivery; when pregnant women return for results and
test positive but do not begin prophylaxis to prevent vertical
transmission; and when the infant is not brought in for
diagnosis and care postdelivery [12,13]. When postnatal care
is sought, it is often only after infants living with HIV become
severely ill. Appropriate access of healthcare is often limited
by inadequate understanding of key elements of HIV and
prevention of vertical transmission among expectant mothers
as well as insufficient sensitization of health caregivers or
providers of all levels.
In sub-Saharan Africa, where only 40% of pregnant women
deliver in facilities and only 53% of women living with HIV
receive any facility-based prevention of vertical transmission
services [14,15], the continuum of care for pregnant women
and other women of reproductive age necessarily relies
on the community. Several factors influencing a woman’s
ability to successfully navigate the PMTCT cascade (i.e. social
support, stigma, disclosure of status, partner support, etc.)
cannot be adequately addressed by clinicians in healthcare
settings alone and are arguably better addressed by personnel well-positioned to intervene at a community level [5,16].
In addition, transport between community and facility often
imposes an immense and unaffordable expense (of both
time and money) on pregnant mothers and other caregivers,
making it difficult for mothers to continue using facility-based
prevention of vertical transmission services. Access to healthcare services is further compounded by stigma, which makes
it especially difficult for women to seek and receive the care
they need for themselves and their babies. Often women
face the added burden of travelling to areas where they
will not be recognized so that they may anonymously use
prevention of vertical transmission services.
Because many programmes that aim to prevent vertical
transmission have historically relied on facilities, related
interventions still primarily target facility-based care and
focus on professional, medical staff such as doctors, nurses
and clinical officers. As a result, the vast majority of published manuscripts reporting on successful prevention interventions describe facility-based interventions. There is no
recent review capturing those effective, promising practices
that are community-based or employ community-oriented
groups to improve prevention of vertical transmission outcomes. This review identifies and summarizes those studies
that report on effective interventions occurring in communities and/or employing community groups, with a particular
focus on those achieving statistically significant improvements in retention and related outcomes along the PMTCT
cascade.
Methods
Literature on strategies to improve retention of and services
to mothers and babies within prevention of vertical transmission programmes available on PubMed, Psych Info and
MEDLINE, dated between January 1990 and July 2011,
were searched. McLeroy et al.’s typographies for the term
‘‘community-based’’ were used to set the inclusion criteria
[17]. Interventions occurring in the community and demonstrating significant results were included. Given the limited
number of published studies that captured significant
prevention of vertical transmission outcome improvements
but did not include facility-based components, interventions located in a facility that effectively engaged cohorts
of lay community members (e.g. lay counsellors, community
volunteers, etc.) as agents of change were also included.
Studies within this latter category are referred to as
‘‘community-oriented’’ as opposed to ‘‘community-based.’’
All study designs except for review articles were eligible for
2
inclusion. The review excluded manuscripts if they described
prevention of vertical transmission interventions that were
housed in a facility and did not employ a community cohort
(e.g. lay counsellors, community volunteers). Though many
screened articles discussed community-based and community-oriented prevention of vertical transmission activities
and reported on related outcomes, studies without statistically significant findings were also excluded.
Studies were initially identified using the search terms
‘‘PMTCT’’ and ‘‘HIV.’’ These studies were narrowed using
the following terminology relevant to community PMTCT
strategies addressing retention: ‘‘community,’’ ‘‘PMTCT
cascade,’’ ‘‘retention,’’ ‘‘loss to follow up’’ and ‘‘early infant
diagnosis.’’ The studies identified by these specific terms
were shortlisted and subsequently narrowed by two
independent reviewers using the above criteria in order
to minimize article selection bias. To help ensure the
comprehensiveness of the final lists, bibliographies of the
short-listed manuscripts were screened for additional,
qualifying studies.
Results
The initial search (using terms HIV and PMTCT) yielded 430
articles. Using the above criteria, 27 articles were isolated
from this group (Figure 2). Nine of the twenty-seven studies
reported statistically significant improvements in PMTCT
outcomes, with two occurring exclusively in the community
and four effectively employing community groups within
facilities. Of the nine studies, three had both community and
facility components. Table 1 provides a summary of these
nine studies meeting the above criteria, including study
design, statistical significance of findings and study limitations. The remaining 18 of the 27 included applicable
community-level data and/or made specific, communityfocussed recommendations, but did not report statistically
significant results.
Of the nine articles meeting the criteria for this review,
three focus on the outcome of knowledge on HIV and
prevention of vertical transmission specifically [1820].
These studies focus on ‘‘peer mentors’’ (as defined by the
Mothers2Mothers (M2M) programme) [18], peer educators
430 articles with
keywords
“PMTCT” and
“HIV”
107 articles with keywords “community” or
“PMTCT cascade” or “retention” or “loss to
follow up” or “early infant diagnosis”
27 articles
meeting other
inclusion and
exclusion criteria
9 articles with
18 articles
statistically
without
significant
statistical
PMTCT
significance
outcomes
Figure 2. Schematic representation of the literature search and yield for articles discussing community strategies to address loss to followup along the PMTCT cascade. PMTCT, prevention of mother-to-child transmission of HIV.
3
Citation
Study design/model
Futterman et al. [18], Pilot study of Mamekhaya
South Africa
Pregnant women attending
programme, which combines two maternities invited to
Outcomes
Study limitations
Indicator
Control (n 31)
Intervention (n41)
Significance
Relatively small sample
Knowledge about HIV
Using 14-point scale
Using 14-point scale
p 0.001
size
mothers2mothers peer
participate. Intervention site:
at six months
at six months
mentoring programme with
women received support
postdelivery: score
postdelivery: score
culturally adapted CBI
incorporating educational
from mentor mother and
attended eight sessions of
went from 7.9 to 9.4
went from 9.0 to
13.9
and psychosocial support
Mamekhaya CBI
KAP2002
KAP2004
Significance
Low and erroneous
92.3%
p 0.001
knowledge of importance
48%
82.8%
p 0.001
22.5%
59.5%
p 0.001
4.1%
24.4%
p 0.001
‘‘Poor’’ level of
‘‘Good’’ level of
Significance
knowledge
knowledge
28 out of 63 (44.4%)
6 out of 9 (66.7%)
Orne-Gliemann et al. KAP survey in November
[19], Zimbabwe
Community component
Peer educators conducted
Indicator
2002 and again in July 2004 core community mobilization Women had heard about 73.1%
to evaluate influence of
activities. Influential
MTCT
prevention of vertical
community members
Proportion of women
transmission advocacy and
mobilization campaign on
consulted to assess their
knowledge and inform them
aware of the possibility
to prevent vertical
awareness and knowledge
of as well as recruit them to
transmission of HIV
levels within community.
share information on
Awareness of risk of
Prevention of vertical
available PMTCT services
vertical transmission of
transmission services
of breastfeeding
HIV through
introduced in mid-2001 in
breastfeeding
Buhera district but w/o
Systematic use of
community sensitization
condoms at each sexual
intercourse
Balogun and
Assessing knowledge and
TBAs assist most deliveries
Odeyemi
practices of 108 registered
in Nigeria. The assessment
[20], Nigeria
TBAs in Lagos. Cross-
looked at how TBA
Counselling of clients
sectional survey
knowledge affected the care
exposed to HIV
Indicator
they provided to their clients Referral of clients for HIV 41 out of 63 (65.1%)
postreferral (did they
p 0.042
82 out of 108 (75.9%) p 0.005
testing
Teasdale and Besser
[13], South Africa
Cross-sectional study:
Independent evaluation of
M2M conducted by
Population Council’s
M2M programme is designed Indicator
Take NVP for prevention
to enhance prevention of
No M2M
83%
M2M
93%
Significance
p B0.01
vertical transmission services of vertical transmission
Give infants NVP for
in facilities through mentor
78%
88%
p B0.05
Horizons Programme in 2005 mothers who educate and
to 2006; KwaZulu-Natal,
support pregnant women
transmission
South Africa
and new mothers LWHIV
No follow-up of mothers
make it to the site, etc.)
Table 1. Interventions with community component improving PMTCT outcomes
4
Citation
Torpey et al. [21],
Zambia
Study design/model
Community component
Outcomes
Study limitations
Zambia Prevention, Care,
Healthcare workers (HCWs)
Indicator
Baseline
End of year 1
Significance
and Treatment Partnership
and lay providers conduct
Pregnant women tested
4630 (45%)
6758 (90%)
p B0.01
project designed to build
rapid HIV testing. Community and receiving results
capacity in the healthcare
motivators and lay
Seropositive pregnant
258 of 890 that tested 701 of 1057 that
system to allow for scale up counsellors trained to
women receiving
positive (29%)
of HIV services. In this phase, support and provide
complete course of ARV
interventions were
introduced to 38 prevention transmission services.
prophylaxis
p B0.01
tested positive
(66%)
of vertical transmission sites Traditional and religious
and data collected monthly
leader engagement for
from July 2005 to September community sensitization and
2008
to increase partner
involvement
Faraquhar et al. [22], Determining effect of
Kenya
Partners were involved in
Strength of association
Advocates for no
partner involvement and
counselling as key community Strength of association: women whose partners came to clinic for voluntary counselling breastfeeding (reports
couple’s counselling on
members with potential to
and testing approximately three times more likely to return for follow-up and report
this as a positive
uptake of prevention of
support follow-up and
taking maternal or infant dose of NVP (OR 3.4; 95% CI 1.3 to 9; p 0.009)
outcome). Does not
vertical transmission
interventions
continuation
address social stigma
barriers that those who
did not return with their
partners may have faced
Chandisarewa et al.
[24], Zimbabwe
Pilot study of provider
Community counsellor
Opt in
Opt out
Significance
No significance for sdNVP
initiated routine HIV
trained in routine HIV testing Women tested for HIV
3058 out of 4872
4547 out of 4551
p B0.001
uptake by mother/infant
counselling and testing
policy from June 2005 to
(65.1%)
(99.9%)
487 of 513 (95%)
908 of 926 (98%)
Indicator
pairs though number in
November 2005. Key
Positive women posttest
outcomes from first six
counselled and collecting
months of routine testing
results
compared with prior six
month ‘‘opt-in’’ period
# HIV positive women
identified at ANC
513 out of 3058
(16.8%)
926 out of 4527
(20.4%)
Mother infant pair seen
49 of 186 delivering
105 of 256 delivering p 0.002
at six-week visit
at ANC (26.3%)
at ANC (41%)
Mother/infant pair
185 (36%)
256 (28%)
receiving sdNVP
p B0.001
opt out group is greater
than number in opt in
group
p B0.001
5
Citation
Bekker et al. [25],
South Africa
Study design/model
Community component
Outcomes
Study limitations
Prospective study comparing Community-based counsellor
Indicator
2002/2003
2004/2005
Significance
Captures statistical
mortality, viral suppression
Women living with HIV
114
479
p 0.002
significance for all women
provided programme
and programme retention in support. Counsellors provide
of reproductive age but
starting ART
three consecutive years of
ongoing counselling,
inadequately powered to
community-based ART clinic
psychosocial and support to
demonstrate significance
in Guguletu township
continue full regimen of
among pregnant women
treatment, treatment
readiness groups information
starting ART between
year one and year three.
sessions twice a week and
Study does not specify
home visits
which groups were LTFU
though it discusses low
rates of LTFU: 78 clients
(7%) died, 33 (3%) LTFU
Kurewa et al. [6],
Zimbabwe
Five-year follow-up of
Support groups, health
Indicator
HIV negative women
HIV positive women
Significance
Monitoring can be
mother-child pairs in
education, trained
LTFU in first year
76 (13.4%)
34 (7.3%)
p 0.012
attributed to research
counsellors from community
institution. No
transmission programme
responsible for follow-up
comparison group (e.g.
after missed appointments
women living with HIV
who did not receive the
additional health
education support)
ANC, antenatal care; ART, antiretroviral therapy; CBI, cognitive behavioural intervention; KAP, knowledge attitude practice; LTFU, loss to follow-up; NVP, nevirapine; M2M, mothers2mothers; MTCT Plus,
mother-to-child-transmission plus initiative; PMTCT, prevention of mother-to-child transmission of HIV; sdNVP, single dose nevirapine; TBAs, traditional birth attendants.
6
[19] and traditional birth attendants (TBAs) [20]. The
intervention in these studies focuses on the dissemination
of information about prevention of vertical transmission and
demonstrates an improvement in mothers’ knowledge of HIV
[18], increased awareness of transmission risks, increased
condom use at each sexual intercourse [19] and a greater
appreciation for the importance of HIV testing [20].
The first of the three studies with knowledge-related
outcomes was conducted by the Mamekhaya project in
South Africa and provided cognitive behaviour interventions
along with support to mothers living with HIV using the
M2M model [18]. The pilot evaluation by Futterman et al.
compared two clinics, one where the Mamekhaya intervention was applied and one where existing prevention of
vertical transmission services were offered. M2M mentors
were trained in support and cognitive behaviour interventions and conducted sessions with mothers living with HIV,
with a curriculum including supportive mentorship, coping
with stigma, avoiding negative emotions, infant feeding practices, partner disclosure, safe sex practices, family planning
and pre- and postdelivery care for their infants. The pilot
study revealed that the involvement of mentor mothers in
education and support for HIV-positive women was associated with a higher HIV knowledge score six months
postdelivery, with the intervention group scoring 3.3 points
higher than the control group on a 14-point scale (p B0.001).
The second study reflected a key component of
Zimbabwe’s national initiative for prevention of vertical
transmission, which incorporates education, advocacy and
community mobilization campaigns. Orne-Gliemann et al.
reported on a two-phase PMTCT advocacy and community
mobilization programme in Buhera district [19], where the
strategy included recruiting influential community members
to sensitize others about prevention of vertical transmission
followed by community mobilization by peer educators in
discussion with community stakeholders. Surveys were given
to women attending 10 health centres in the south Buhera
district at baseline in 2002 and then again two years later.
Results showed that women’s awareness of the risk of
vertical transmission from breastfeeding increased from
28.9% in 2002 to 55.3% in 2004 (OR, 4.1; CI, 2.9 to 5.9;
p 0.001), while women’s awareness that vertical transmission is preventable increased from 48.0% in 2002 to 82.8%
in 2004 (OR, 4.9; CI, 3.3 to 7.3; p0.001).
The third study that included knowledge as an outcome is
a cross-sectional survey that demonstrated the relationship of prevention of vertical transmission knowledge and
practice amongst TBAs in Nigeria [20]. Balogun and Odeyemi
reported that, when 108 TBAs in Lagos were interviewed
using a pretested questionnaire, TBA’s prevention of vertical
transmission knowledge levels, though low overall, correlated strongly with appropriate counselling and prevention
of vertical transmission referrals, with 100% of those with
‘‘good’’ prevention of vertical transmission knowledge referring pregnant women to health facilities for HIV testing
compared to 65.1% with ‘‘poor’’ knowledge. Using a Fisher
exact test, the authors report a positive correlation between
TBA knowledge levels and practice (p0.042 and p 0.005
for counselling and referral, respectively).
The remaining six studies captured by this review reported on outcomes related to various steps along the
PMTCT cascade (see Figure 1). In one cross-sectional study by
Teasdale and Besser, the involvement of mentor mothers
in the M2M programme in South Africa was associated with
improved maternal uptake of treatment and higher rates
of prophylaxis for infants. Specifically, facilities employing
mothers from surrounding communities to provide education
and support for HIV-positive pregnant women achieved
significantly improved rates of maternal (93% vs. 83%;
p B0.01) and infant (88% vs. 78%; p B0.05) nevirapine
coverage compared to non-supported sites [13].
In another, Zambia-based study by Torpey et al., community engagement and sensitization by healthcare workers,
lay counsellors and religious leaders focussed on partner
involvement in the prevention of vertical transmission, with
community leaders using community forums to specifically
encourage males to attend ANC. The package of facility- and
community-based interventions, of which male involvement
and community mobilization was a significant component,
resulted in a doubling of pregnant women being testing
for HIV and receiving results (45% up to 90%; p B0.01).
The intervention also led to a higher proportion of women
completing ARV prophylaxis (29% at baseline up to 66% at
one year; pB0.01) [21].
The next article focussed on other key community
members the partners of pregnant women. This Kenyabased study by Faraquhar et al. demonstrated a significant
increase in prophylaxis to prevent vertical transmission as a
result of partner engagement in either individual or couples
counselling. A reported 2836 women enrolled in the study
with 2231 returning to the clinic for a second study visit.
Eighty-nine percent of this group of women reported inviting
their partner to return with them for voluntary counselling
and testing; 308 of these women’s partners accompanied
them to the clinic at their next counselling session and were
also tested. Eighty-three percent of women whose partners
attended couples counselling returned to access nevirapine,
compared to 71% whose partners came for individual
counselling and 56% of women whose partners did not
come for voluntary counselling and testing (p0.02) [22].
Eighty-eight percent of women whose partners attended
couples counselling reported continuing their use of maternal nevirapine compared to 67% whose partners counselled
individually and 45% whose partners did not participate in
voluntary counselling and testing (p0.006). Women whose
partners came to clinic for testing and counselling also
reported administering infant dose of nevirapine with higher
frequency (OR, 3.4; 95% CI, 1.3 to 9; p0.009) [22].
Kurewa et al. [6] reported on a five-year study in
Zimbabwe that set up support groups in addition to
employing trained counsellors from the same communities
as the mothers receiving services. Mothers who missed
appointments for prevention of vertical transmission received supportive visits from these counsellors at their
homes, leading to LTFU rates of 7.3% among mothers living
with HIV in the programme, compared to 13.4% among HIV
negative mothers (p 0.012) [13]. The authors emphasize
the significance of addressing a mother’s needs through
7
complete follow-up and care regardless of mother’s HIV
status. They attribute higher retention rates and higher rates
of nevirapine uptake (in comparison to other studies) to the
additional health education provided and the prolonged
observation and follow-up of clients [23].
Chandisarewa et al. reported on a study in Zimbabwe
that captured a significant effect of opt-out testing in a site
supported by routine lay counsellor-led pretest counselling.
In the study, ‘‘PMTCT counsellors’’ held 15-minute group
education sessions with nearly 9500 pregnant women over a
12-month period, using a structured flip chart to guide
discussion. The session focussed on HIV transmission, PMTCT
prophylaxis and the importance of routine HIV testing for all
pregnant women. In the context of such support, the shift
from opt-in to opt-out testing at the clinic led to a substantial increase in the number of women tested (pB0.001),
the number of women receiving test results (pB0.001),
the number of women living with HIV identified in ANC
(pB0.001) and the number of mother-infant pairs reporting
for six-week postpartum follow-up (p B0.001) [24].
In a South African study reported by Bekker et al., the use
of community-based counsellors and support groups was
positively associated with initiation of women on treatment
as well as a decrease in LTFU [25]. The number of women
living with HIV who initiated antiretroviral therapy (ART) rose
from 114 to 479 over the course of three years (p0.002),
capturing a strongly significant uptake in treatment services
among women in a treatment programme with a dedicated
community component. During the implementation of the
programme, community-based ‘‘therapeutic counsellors’’
living in or near the selected community reinforced the
continued use of services and addressed psychosocial issues,
while holding treatment-readiness group information sessions twice weekly in a local community setting. The number
of pregnancies occurring amongst the participants during the
study period was not reported. However the cohort, largely
composed of women of reproductive age, elegantly captured
the impact of increasing counseling support on women’s
uptake of treatment services. In addition to increased uptake
of services by women in particular, the second and third
years of the study captured a higher median CD4 count
(pB0.001), a lower mean viral load (pB0.001) and a lower
proportion of AIDS diagnoses (pB0.001) among those on
treatment.
As noted in the Methods section, in addition to the nine
articles documenting statistically significant improvements
in important prevention of vertical transmission-related
outcomes, this review identified several papers without
statistically significant outcomes that describe a variety of
prevention of vertical transmission interventions involving
community-level groups of caregivers and/or support units.
These articles, which are not discussed in detail here,
reported several community-level challenges (e.g. barriers
to partner engagement [26,27], attitudes towards community
care providers, stigma [4,16,28]) and included a variety of
community units (e.g. community health workers [29],
peer counsellors [30], volunteers [3133], TBAs [34], traditional chiefs and religious leaders [35] and social workers
[36]). Though these articles capture a broad spectrum of
community agents and outcomes, the findings do not meet
statistical significance.
Discussion
In many of the regions with the highest burden of HIV and
the greatest number of new vertical transmissions, the
uptake of facility-based care by pregnant women remains
low, as does retention in such care. In these same areas,
many of which have facility-based PMTCT uptake of well
under 50% of women living with HIV, community engagement is also limited [14]. Programmes that do not extend
beyond facilities and fail to engage lay staff will not be able
to achieve the level of prevention of vertical transmission
coverage required to approach zero new transmissions of
HIV to children [14,15]. In addition, the women most at risk
of acquiring HIV and most in need of treatment may be the
least able to access services.
Community-based solutions are essential to ensuring
women and their children have access to the full cascade
of prevention of vertical transmission interventions. As literature on community-based prevention of vertical transmission strategies is limited, this review also includes what we
call ‘‘community-oriented’’ prevention of vertical transmission strategies, where community-level units well-positioned
to improve prevention of vertical transmission outcomes
conduct activities that are housed in facilities. By including
both of these categories of interventions, this review summarizes the limited, collective literature describing which
community-based and community-oriented efforts have
demonstrated statistically significant improvements in prevention of vertical transmission outcomes such as the
retention of HIV positive pregnant women and their infants
in care; HIV positive pregnant women continuing their
treatment; mothers giving their HIV exposed infants prophylaxis and, ultimately, survival of both mother and child.
Though this collective literature is unfortunately scarce,
as summarized in the Results section above and in Table 1,
activities captured here improve knowledge of prevention of
vertical transmission, increase uptake of testing and prevention services and promote better rates of disclosure and
retention.
The community groups involved in the achievement of
these outcomes are diverse and include community health
workers, peer counsellors, volunteers, TBAs, mentor mothers,
traditional chiefs and religious leaders. However, unlike more
specialized healthcare providers, these personnel are often
readily available where the need is greatest and can be
efficiently and effectively trained and recruited to implement prevention of vertical transmission interventions. Importantly, as studies included in the review show, these
community groups can effectively engage mother-infant pairs
and partners both at facilities and within the community at
large. In fact, many of the study outcomes summarized in
this review were achieved by integrating both communitybased and facility-based community-oriented strategies
[13,18,21,37].
Though this summary represents a careful search for
published community-based and community-oriented prevention of vertical transmission strategies with significant
8
improvements in outcomes, there are limitations to this
review. One such limitation relates to the continuing
evolution of strategies to prevent vertical transmission.
Most notably, where a number of the included studies
discussed single-dose nevirapine coverage as an outcome,
it is now recognized that such prophylaxis is far inferior
to multidrug prophylaxis, especially highly active ART. It is
possible that the uptake of multidrug regimens and the
implementation of other more progressive components of
the latest international normative guidance on prevention of
vertical transmission are more difficult to achieve than the
outcomes captured in studies included here. Secondly, given
the small evidence base supporting community-based and
community-oriented prevention of vertical transmission
strategies and our omission of a broad spectrum of more
descriptive articles, the groups, outcomes and study methodologies among the articles included are admittedly varied.
In short, the depth and breadth of this review is clearly
limited by the shortage of robust literature on this topic.
However, this is also one of the review’s more important
take-home messages.
Conclusions
The studies included here cover several proven, communitybased and community-oriented strategies that improve
retention along the PMTCT cascade and other key prevention
of vertical transmission-related outcomes. These strategies
make it clear that community interventions can and do work.
However, this review clearly demonstrates that communitylevel activities as well as those conducted by communityoriented health caregivers reaching out from facilities
continue to receive less attention than interventions by
professional providers based in healthcare facilities. As a
result, key community-level and community-oriented strategies for optimal prevention of vertical transmission uptake
and retention remain inadequately discussed and understood, resulting in lost opportunities to protect mothers
and babies from acquiring HIV. Rigorous measurement and
evaluation of ongoing interventions with community components are essential, as is the subsequent sharing of promising
practices through peer-reviewed literature. Such rigor will do
much to ensure that community-based prevention of vertical
transmission interventions live up to their promise in the
years ahead.
Authors’ affiliation
USAID, Office of HIV/AIDS, Washington, DC, USA
Competing interests
BRP, GB and YM conceived the review. YM undertook research and screened
articles relevant to production of the manuscript and drafted the manuscript.
BRP and GB helped to conceive the study, undertook research relevant to
production of the manuscript and drafted the manuscript in addition to editing
and revising all parts. All authors read and approved the final manuscript.
Abbreviations
ANC, antenatal care; ART, antiretroviral therapy; CBI, cognitive behavioural
intervention; KAP, knowledge attitude practice; LTFU, loss to follow-up; NVP,
nevirapine; M2M, mothers2mothers; MTCT Plus, mother-to-child-transmission
plus initiative; PMTCT, prevention of mother-to-child transmission of HIV;
sdNVP, single dose nevirapine; TBAs, traditional birth attendants.
Acknowledgments
The views and opinions expressed in the article are solely those of the authors
and do not necessarily reflect those of the US Agency for International
Development nor those of the US Government.
References
1. UNAIDS. Report on the Global AIDS Epidemic 2010. Geneva: UNAIDS; 2010.
2. Mofensen L. Prevention in neglected subpopulations: prevention of
mother-to-child transmission of HIV infection. Clin Infect Dis. 2010;50(3):
S13048.
3. UNICEF. Preventing Mother-to-Child Transmission (PMTCT) of HIV factsheets on the status of national PMTCT responses in the most affected
countries. New York: UNICEF; 2010.
4. Towle M, Lende DH. Community approaches to preventing mother-to-child
HIV transmission: perspectives from rural Lesotho. Afr J AIDS Res. 2008;7(2):
21928.
5. Theuring S, Mbezi P, Luvanda H, Jordan-Harder B, Kunz A, Harms G. Male
involvement in PMTCT services in Mbeya region, Tanzania. AIDS Behav.
2009;13:S92102.
6. Kurewa EN, Kandawasvika GQ, Mhlanga F, Munjoma M, Mapingure MP,
Chandiwana P, et al. Realities and challenges of a five year follow up of mother
and child pairs on a PMTCT program in Zimbabwe. Open AIDS J. 2011;5:558.
7. Moth IA, Ayayo AB, Kaseje DO. Assessment of utilization of PMTCT services
at Nyanza Provincial Hospital, Kenya. Sahara J. 2005;2(2):24450.
8. Painter Tm, Diaby KL, Matia DM, Lin LS, Sibailly TS, Kouassims MK, et al.
Sociodemographic factors associated with participation by HIV-1-positive
pregnant women in an intervention to prevent mother-to-child transmission
of HIV in Cote d’Ivoire. Int J STD AIDS. 2005;16(3):23742.
9. Jones SA, Sherman GG, Varga CA. Exploring socio-economic conditions and
poor follow-up rates of HIV-exposed infants in Johannesburg, South Africa.
AIDS Care. 2005;17(4):46670.
10. Stringer EM, Sinkala M, Stringer JS, Mzyece E, Makuka I, Goldenberg RL,
et al. Prevention of mother-to-child transmission of HIV in Africa: successes
and challenges in scaling-up a nevirapine-based program in Lusaka, Zambia.
AIDS. 2003;17(9):137782.
11. Stringer JS, Sinkala M, Goldenberg R, Vermund S, Acosta E. Monitoring
nevirapine-based program for prevention of mother-to-child transmission of
HIV-1. Lancet. 2003;362(9384):667.
12. Stringer EM, Chi BH, Chintu N, Creek TL, Ekouevi DK, Coetzee D, et al.
Monitoring effectiveness of programs to prevent mother-to-child HIV transmission in lower-income countries. Bull World Health Organ. 2008;86:5762.
13. Teasdale CA, Besser MJ. Enhancing PMTCT programs through psychosocial
support and empowerment of women: the Mothers2Mothers model of care.
S Afr J HIV Med. 2008;Summer:604.
14. UNICEF. The State of the world’s children 2009, maternal and newborn
health: where we stand. New York: UNICEF; 2009.
15. World Health Organization, Joint United Nations Program on HIV/AIDS and
United Nations Children’s Fund. Towards universal access scaling up priority
HIV/AIDS interventions in the health sector: progress Report 2010. Geneva:
WHO; 2010.
16. O’Gorman DA, Nyirenda LJ, Theobald SJ. Prevention of mother-to-child
transmission of HIV infection: views and perceptions about swallowing
nevirapine in rural Lilongwe, Malawi. BMC Public Health. 2010;10:354.
17. McLeroy KR, Norton BL, Kegler MC, Burdine JN, Sumaya CV. Communitybased interventions. Am J Public Health. 2003;93(4):52933.
18. Futterman D, Shea J, Besser M, Stafford S, Desmond K, Comulada WS,
et al. Mamekhaya: a pilot study combining a cognitive-behavioral intervention
and mentor mothers with PMTCT services in South Africa. AIDS Care. 2010;
22(9):1093100.
19. Orne-Gliemann J, Mukotekwa T, Perez F, Miller A, Sakarovitch C, Glenshaw
M, et al. Improved knowledge and practices among end-users of mother-tochild transmission of HIV prevention services in rural Zimbabwe. Trop Med Int
Health. 2006;11(3):3419.
20. Balogun M, Odeyemi K. Knowledge and practice of prevention of motherto-child transmission of HIV among traditional birth attendants in Lagos State,
Nigeria. Pan Afr Med J. 2010;5:7.
21. Torpey K, Kabaso M, Kasonde P, Dirks R, Bweupe M, Thompson C, et al.
Increasing the uptake of prevention of mother-to-child transmission of HIV
services in a resource-limited setting. BMC Health Serv Res. 2010;10:29.
9
22. Faraquhar C, Kiarie JN, Richardson BA, Kabura MN, John FN, Nduati RW,
23. Arrive E, Kyabayinze DJ, Marquis B, Tumwesigye N, Kieffer MP, Azondekon
A, et al. Cohort profile: the pediatric antiretroviral treatment programs in
lower-income countries (KIDS-ART-LINC) collaboration. Int J Epidemiol. 2008;
37(3):47480.
24. Chandisarewa W, Stranix-Chibanda L, Chirapa E, Miller A, Simoyi M,
Mahomva A, et al. Routine offer of antenatal HIV testing (‘‘opt-out’’ approach)
to prevent mother-to-child transmission of HIV in urban Zimbabwe. Bull World
Health Organ. 2007;85:84350.
25. Bekker L, Myer L, Orrell C, Lawn S, Wood R. Rapid scale-up of a communitybased HIV treatment service: program performance over 3 consecutive years
in Guguletu, South Africa. S Afr Med J. 2006;96:31520.
26. Reece M, Hollub A, Nangami M, Lane K. Assessing male spousal engagement with prevention of mother-to-child transmission (pMTCT) programs in
western Kenya. AIDS Care. 2010;22(6):74350.
27. Sarker M, Sanou A, Snow R, Ganame J, Gondos A. Determinants of HIV
counseling and testing participation in a prevention of mother-to-child
transmission program in rural Burkina Faso. Trop Med Int Health. 2007;12(12):
147583.
28. Nassali M, Nakanjako D, Kyabayinze D, Beyeza J, Okoth A, Mutyaba T.
Access to HIV/AIDS care for mothers and children in sub-Saharan Africa;
adherence to the postnatal PMTCT program. AIDS Care. 2009;21(9):112431.
29. Ivers LC, Jerome J, Cullen KA, Lambert W, Celletti F, Samb B. Task-shifting in
HIV care: a case study of nurse-centered community-based care in rural Haiti.
PLoS One. 2011;6(5):e19276.
30. Shetty AK, Marangwanda C, Stanix-Chibanda L, Chandisarewa W, Chirapa E,
Mahomva A, et al. The feasibility of preventing mother-to-child transmission of
HIV using peer counselors in Zimbabwe. AIDS Res Ther. 2008;5:17.
31. Shetty AK, Mhazo M, Moyho S, Lieven A, Mateta P, Katzenstein DA, et al.
The feasibility of voluntary counseling and HIV testing for pregnant women
using community volunteers in Zimbabwe. Int J STD AIDS. 2005;16:7559.
32. Ford N, Reuter H, Bedelu M, Schneider H, Reuter H. Sustainability of longterm treatment in a rural district: the Lusikisiki model of decentralized HIV/
AIDS care. S Afr J Med. 2006;26:1722.
33. Perez F, Mukotekwa T, Miller A, Orne-Gliemann J, Glenshaw M, Chitsike I,
et al. Implementing a rural program of prevention of mother-to-child transmission of HIV in Zimbabwe: first 18 months of experience. Trop Med Int
Health. 2004;9(7):77483.
34. Wanyu B, Diom E, Mitchell P, Tih PM, Meyer DJ. Birth attendants trained
in ‘‘prevention of mother-to-child HIV transmission’’ provide care in rural
Cameroon, Africa. J Midwifery Womens Health. 2007;52:33441.
35. Zachariah R, Teck R, Buhendwa L, Labana S, Chinji C, Humblet P, et al. How
can the community contribute in the fight against HIV/AIDS and tuberculosis?
An example from a rural district in Malawi. Trans R Soc Trop Med Hyg.
2006;100:16775.
36. Thomson KA, Cheti EO, Teid T. Implementation and outcomes of an active
defaulter tracing system for HIV, prevention of mother to child transmission of
HIV (PMTCT) and TB patients in Kibera, Nairobi, Kenya. Trans R Soc Trop Med
Hyg. 2011;105:3206.
37. Myer L, Rabkin M, Abrams EJ, Rosenfield A, El-Sadr WM. Focus on women:
linking HIV care and treatment with reproductive health services in the MTCTPlus initiative. Reprod Health Matters. 2011;13(25):13646.
10
Sherr L and Croome N. Journal of the International AIDS Society 2012, 15(Suppl 2):17378
Review article
Involving fathers in prevention of mother to child transmission
initiatives what the evidence suggests
Lorraine Sherr and Natasha Croome§
§
Corresponding author: Natasha Croome, Research Department of Infection & Population Health, Royal Free and UC Medical School, UCL, Rowland Hill St., London
NW32PF, United Kingdom. Tel: 44 207 830 2129, Fax: 44 207 794 1224. ([email protected])
Abstract
Introduction: The current UNAIDS goal towards virtual ending or elimination of infants acquiring HIV by 2015 is perhaps the
most achievable goal to date. Yet, models show that delivery of antiretroviral compounds alone will not suffice to achieve this
goal, and a broader community-based approach to pregnancy, families and HIV is needed. Such an approach would highlight the
important role of men in reproduction. Although early studies have shown it is cost-effective to include males, very few
interventions have proceeded to involve men.
Methods: This review utilized systematic review techniques to explore the literature on effective interventions for the inclusion
of men in the prevention of HIV to infants. A key word search of literature sources generated 248 studies for hand sorting and
interrogation. Of these, 13 were found to contain some information on involvement of males in some form of provision. Data
were abstracted from these and form the basis of this review.
Results: Background descriptive studies painted a picture of low male involvement, poor male inclusion and barriers to
engagement at all stages. Yet, pregnancy intentions among men affected by HIV are high and the importance of fathers to family
functioning from relationships, through conception, pregnancy and parenting is well established. Search strategies for
interventions for males in HIV and pregnancy were used to generate studies of sufficient quality to inform strategies on the
future of male involvement. Of the 317,434 papers on pregnancy and HIV, only 4178 included the term male (paternal or father).
When these were restricted to intervention studies, only 248 remained for hand sorting, generating 13 studies of relevance for
data extraction. The results show that all these interventions were concentrated around male partner HIV testing. In general,
male partner testing was low and was amenable to change by offering voluntary counselling and testing (VCT) information,
providing couple-based testing facilities and encouraging male attendance. All interventions used indirect approaches to men via
their pregnant spouse. Non-health facility (clinic or hospital)-based provision (such as testing facilities in the community in bars
and churches) were more effective than healthcare facilities in attracting male participation.
Conclusions: In conclusion, the review showed that approaches to men are limited to HIV testing with little innovative planning
and provision for male treatment and care. As such, initiatives run the risk of alienating rather than including males. Direct
approaches and the provision of male-specific facilities and benefits should be explored.
Keywords: HIV; PMTCT; fathers; male involvement; VCT.
Received 10 January 2012; Revised 1 March 2012; Accepted 7 May 2012; Published 11 July 2012
Copyright: –2012 Sherr L and Croome N; licensee International AIDS Society. This is an open access article distributed under the terms of the Creative Commons
Attribution License (http://creativecommons.org/licenses/by-nc/3.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the
original work is properly cited.
Introduction
The UN aim of virtual elimination of HIV infection to end
infection in newborns is an achievable goal [1]. There is
efficacious treatment for HIV-positive women during childbirth, and the guidelines for infant feeding have shown
dramatic progress to ensure that pregnancy and postpartum
infection is limited. Rollout of such interventions is seen
as highly cost-effective [2]. However, although the goal is
simple, it will not be simply achieved. In order to deliver any
programme of HIV prevention and treatment to pregnant
women with HIV, a comprehensive HIV testing programme
needs to precede so that HIV infection is identified. Once
identified, treatment rollout and full adherence to efficacious
regimens are also preconditions of effectiveness. Both funds
and human resources need to be in place to ensure such
rollout, and recent studies have warned against potential
bottlenecks at this level [3]. A narrow vision of HIV in
pregnancy may result in ineffective rollout. Indeed mathematical modelling has shown that, even with full treatment
availability, not all pregnant women will be reached [4].
It appears that a more comprehensive understanding of
pregnancy within the family and society may be needed to
locate such interventions and enhance their effectiveness.
In this paper, the role of fathers in pregnancy is explored,
including the philosophy and benefits of paternal inclusion as
well as the cost of excluding fathers on family outcomes.
It has long been established that fathers play an important
role in childbirth, yet there is a dearth of literature on
paternal contributions and roles either because they are
excluded or understudied in empirical investigations. As the
1
importance of fathers in child outcomes is documented, the
movement to include fathers in research and programmes
has grown. There are distinct fertility issues for HIV-positive
men [5] and potential interventions [6]. The literature is
examined to summarize what is known of paternal engagement including barriers that exist, the nature and extent of
engagement, facilitators to such engagement and impediments that have been described in the literature. This is
followed by a systematic review of intervention initiatives to
engage fathers in childbirth in the context of HIV.
Fathers play a key role in various stages and phases of
family functioning, from relationship formation to contraception, family planning, pregnancy and support. Fathering is
a crucial component of family and child experience. Yet,
healthcare services do not automatically involve males. In
some settings, fathers are included in antenatal preparation
classes, and in the modern era again in some settings
only fathers have been included in labour and delivery [7].
Emerging literature suggests that male transitioning to
parenthood has psychological challenges [8]. Expectations
and stress levels have been shown to be elevated for men
with implications for bonding with their child [9]. There is no
reason to believe that such generalized findings do not apply
also to fathers affected by HIV. Given the sharp contrast
between paternal engagement at the community level in
comparison to the healthcare level, it is important to
understand why this is so. It may be that pregnancy is
viewed within a gender lens, confining the approaches to the
pregnant woman only. This represents a somewhat simplistic
approach. Such approaches represent a short-sighted vision
and align with a biomedical model, which locates childbirth
in obstetrics, rather than a broader social science model,
which requires a community and social context.
The literature suggests that it makes good sense to
incorporate fathers into pregnancy approaches, as there
appears to be evidence that male partner support is important for optimum outcomes in the realms of infant feeding
[10], HIV test uptake, clinic attendance and continuing to use
treatment services [11]. Conversely, the lack of male support,
or even the fear of negative reactions from male partners,
is associated with lowered HIV test uptake, reduced disclosure and lowered adherence. Some interventions in male
populations have focussed on pregnancy prevention and risk
behaviour reduction [12], and these have often been
effective [13]. Indeed, much of the literature concentrates
on pregnancy prevention rather than pregnancy promotion
[14], perhaps revealing an underlying bias that unintended
pregnancy was of greater importance to study than intended
pregnancy. Indeed, one study exploring fertility desires of
people living with HIV in Nigeria noted that 63.3% desired a
child (some more than one child) and reports ‘‘fertility
desires and intentions of these patients poses a threat to
preventive strategies.’’
In HIV, there are a number of potential male reproduction
concerns. These relate to HIV testing in the first place, the
whole issue of partner or couple testing, male involvement in
planning a pregnancy in the presence of HIV and subsequent
care when the pregnancy is achieved. Male involvement is
not only confined to obstetric care but should also be
extended to family planning, fertility treatment and termination of pregnancy clinics. The issue of discordant and
concordant couples needs to be addressed in terms of
not only conception options but also in HIV transmission
prevention in the pursuance of conception. Male involvement in mode of childbirth, continuing to use treatment
services and feeding decision-making needs to be understood
as well as the factors associated with parenting a child in the
presence of HIV. Couple counselling programmes have been
studied to explore uptake of HIV testing and reduction of
HIV transmission, risk behaviour and abuse [15].
A recent systematic review of pregnancy intention among
fathers identified 14 studies on male perspectives and
pregnancy intentions [16]. All showed consistent high desire
for a child in the presence of HIV. Some studies explored the
effect of disclosure on such desires and showed that lack of
disclosure of HIV status to a partner was associated with
elevated desires for a child [17]. This literature suggests that
male views on parenting are important. It is surprising that
HIV testing of male partners has been neglected for so long.
As far back as 1999 [18], cost-effectiveness analysis showed
considerable benefits for male partner testing, which would
identify HIV positive fathers and thereby intervene to prevent
new transmission to pregnant women and obviate infants
acquiring HIV, which could be heightened if the mother had
newly acquired HIV [19]. Male involvement in pregnancy and
childbirth is seen as an important factor in various domains
[20]. Most of the literature explores the effect on maternal
or infant outcomes, yet there may also be benefits for
the men themselves. Male involvement indices exist [21].
Male involvement may not simply be a function of male
motivation but may relate to service availability, ease of
access, social and cultural norms and provision [22]. The
rapid rollout of HIV testing for woman is often seen as an
indirect test or challenge to men, who are rarely consulted or
involved and feel strongly about HIV testing of their partners.
Kakimoto et al. showed that couple involvement played a key
role in HIV testing acceptance. When a special class to
provide information on HIV testing was set up, which initially
invited pregnant women to attend and then couples, HIV test
acceptance rate of those who attended alone was much
lower than those with partners (18.7% vs. 85.1%) [23]. John
et al., as far back as 2003, used Kenyan data to explore the
impact of couple counselling and noted that, although only
11% received couple counselling, this was effective at
averting a greater number of infants acquiring HIV than
woman only testing and was cost effective [24]. Msuya et al.
in Tanzania found that low partner attendance at HIV testing
was a predictor of failure to return for test results [25]. Kizito
et al. in Uganda [26] looked at 20,738 female antenatal
attendees and noted that only 1.8% of male partners
accepted HIV testing compared to 62.8% uptake for pregnant
women. They found an even lower male uptake of syphilis
testing 82.2% of women compared to 1.1% of men.
Identifying discordancy is a specific HIV prevention opportunity that is missed if partner testing is overlooked.
The benefits of partner testing go beyond prevention of
transmission to infants. Desgrées-Du-Loû et al. showed in
Cote d’Ivoire that partner testing was associated with spousal
2
communication and subsequent condom use [27]. Although
some studies raise fears of abuse and negative outcomes
for women, Semrau et al. in Zambia showed that couple
counselling did not increase the risk of adverse social events
for women [28]. In a systematic review of counselling for
HIV testing in pregnancy, Minnie et al. identified 33 studies,
but none discussed partner testing, other than reference to
desirability of couple testing [29].
Few researchers directly explore HIV treatment of fathers
and the effects on subsequent mortality and both adult
and child outcomes. These data need to be inferred, yet a
recent large scale study in Uganda following up 5974 people
(1373 HIV-positive and 4601 HIV-negative) showed that the
provision of antiretroviral treatment to adults was associated
with a 95% reduction in mortality among participants living
with HIV and an 81% reduction in mortality in their young
children not living with HIV ( B10 years) [30]. Clearly, a
family approach needs to start addressing the role of fathers
and understand paternal need as well as the advantages of
provisions for fathers.
There does not seem to be any global policy on male
involvement in HIV testing in pregnancy or ongoing vertical
transmission provision. Mirkuzie et al. in Ethiopia studied
663,603 pregnant women from 2004 to 2009 where 13.5%
(986) were HIV positive and showed that male testing was
low at only 4.9%, with a worrying decline over time by
14% from 2004 to 2009 [31]. Thus, in the absence of any
direct policy, male testing in HIV pregnancy may represent a
seriously missed opportunity.
Generally, it appears that current HIV testing initiatives are
less successful at reaching men than women. A recent study
in South Africa showed a 3:1 ratio of testing when comparing
females to males [32], even when controlling for pregnancyrelated testing. Were et al. showed that home-based couples
testing increased paternal test uptake [33]. They visited
homes of 730 people living with HIV in their study to offer
counselling and testing to other household members. Of
2373 household members visited at home, 99% accepted
voluntary counselling and testing (VCT). In this study, 120
spouses accepted testing, of whom 57% were found to be
HIV positive 99% of whom had not previously tested.
Studies indicate that HIV testing in antenatal clinics is not
reaching out fully to men. The environment is not conducive,
the way of operationalizing the request or invitation to test is
often mediated through women and is thus an indirect
invitation and may be perceived with lower validity or
desirability by men. Furthermore, using women as a testing
go-between may add an unnecessary burden on their
shoulders. Men report that the antenatal environment is a
women’s environment and not conducive to their attendance
[34]. Qualitative studies point out the contradiction between
male beneficial attitudes towards HIV testing in pregnancy
and the low uptake, suggesting that this implies external
barriers to access [35,36].
Given this general background, this study was set up to
examine interventions to increase male involvement in prevention of infants acquiring HIV during pregnancy so that a
clear understanding of initiatives that are effective can be
fostered. A systematic review was carried out to explore
interventions in prevention of vertical transmission initiatives
or general pregnancy programmes aimed at male involvement around HIV prevention, management or care. The aim
of the review was to identify any interventions (programmes,
community or healthcare based) with a paternal component
and to summarize the knowledge base on the efficacy of such
interventions.
Methods
A systematic review protocol was devised for the identification, retrieval and appraisal of evidence on interventions for
fathers in HIV-related pregnancies.
Search strategy
In December 2011, three electronic databases were
searched: MEDLINE, PsycINFO and the Cochrane data base.
Search terms
Subject subheadings and word truncations were entered
according to database requirements to map all possible key
words. With a combination of ‘‘or’’ and ‘‘and’’ functions, we
conducted a search using the following key terms: AIDS; HIV;
Acquired Immunodeficiency Syndrome, pregnancy, antenatal,
prenatal, prevention of mother to child transmission (PMTCT)
and intervention(s). Secondly, we searched for terms male
(man or men), paternal and father. Search strategies were
then intersected to generate potential papers. Details on the
specific search terms, combinations and papers generated
are set out in Table 1 below.
Inclusion/exclusion criteria
Two hundred and forty-eight papers generated from the
resulting search were hand sorted to establish final inclusion.
Papers were first selected based on relevance to the topic
if they related to any HIV and pregnancy/reproduction or
fertility situation and included male involvement or male
measures. In order to identify high quality, robust evidence,
study design criteria were applied to seek out clinical
trials; comparative studies, studies with control groups;
Table 1.
Search strategy and results
Term
Yield
Papers
1
HIV
2
AIDS
234,235
183,814
3
4
Acquired immune deficiency syndrome
1,2,3 combined with ‘‘or’’ command
81,398
5
Pregnancy
709,589
6
Combined with 4 with ‘‘and’’ command
7
Male
5,867,582
8
Father
27,497
9
Paternal
15,908
10
Combined 7,8,9 with ‘‘or’’ command
5,879,198
11
12
Combined 10 with 6 ‘‘and’’ command
Intervention
273,608
13
Combined 12 with 11 ‘‘and’’ command
248
14
Hand search for relevance and inclusion
13
317,434
14,462
4178
3
interventions (HIV test offering) with prepost or comparison
group measures. Target populations included all those in
pregnancy care or identified through pregnancy where the
issue of HIV infection, HIV testing or HIV prevention
interventions were reported. Types of articles excluded
were reviews, book chapters, dissertations, letters or editorial opinions. Excluded target populations were non-HIV
(including those in high risk groups for HIV). Study types
excluded were case report, studies without intervention or
comparison/control groups or descriptive qualitative studies,
which were retained for examination in terms of core
concepts to inform the discussion but not included in the
data extraction. References from included studies were
followed up to ensure broad coverage and inclusion. NonEnglish articles were also excluded.
Results
From the 248 studies, 13 were found to contain some
information on involvement of males in some form of provision. The data from these 13 were extracted to provide
geographical location of study, sample details, any description of intervention or conditions, specific findings related
to males and outcomes. These studies are summarized in
Table 2 below.
All 13 studies were centred around the issue of HIV testing
of males. Interventions were either specific VCT provision or
evaluations of routine HIV testing offers and invitations on
male uptake and outcome.
On the whole, male attendance was low (16% in Katz et al.
[37,38], 31% Aluisio et al. [39], 12.5% Msuya et al. [40], 22%
Ditekemena et al. [41], 15% Farquhar et al. [42], 2.9% Homsy
et al. [43] and 0.6% Sherr et al. [44]). A randomizedcontrolled trial to improve male HIV testing was conducted
by Ditekemena et al. in the Democratic Republic of Congo.
The study included 2706 pregnant women whose partners
were invited to VCT according to a random schedule varying
location (bars, churches and health centres). Only 591 (22%)
attended 99.6% of whom had an HIV test but were
significantly more likely to do so at bars than at healthcare
centres. Furthermore, couple counselling uptake was greater
at bar and church venues than at healthcare centres. Msuya
et al. in Tanzania followed up 2654 pregnant women and
reported that only 332 (12.5%) males responded to VCT
invitations, many (40%) postdelivery. On the other hand,
Msuya et al. reported that weekend opening did not affect
partner testing uptake and Katz et al. reported that 94% of
men viewed the antenatal setting positively (however, their
sample was drawn from antenatal clinic attendees and may
thus be skewed). Conkling et al. [45] in Kigali and Lusaka
utilized weekend testing to monitor the effects of couple
testing compared to women testing alone. They followed up
3625 women of whom 1619 received couples care and 2006
were tested alone. Weekend test was feasible, and couple
counselling was associated with lower loss to follow-up but
had no effect on nevirapine use.
The studies reported on specific interventions to enhance
uptake of male HIV testing during pregnancy and the
consequences of enhanced male testing. A randomizedcontrolled trial (Mohlala et al. [46]) among a sample of
1000 pregnant women showed that an intervention involving
a written invitation to attend VCT compared to a control
group with general pregnancy information enhanced uptake
of counselling and testing and also reduced subsequent
unprotected sex during pregnancy. A simple invitation
reaching out to male partners enhanced attendance and
HIV testing uptake in Uganda (Byamugisha et al. [47]). Male
involvement was associated with a number of positive shortand long-term pregnancy and relationship outcomes. Aluisio
et al. in Kenya found a significant positive relationship between male attendance and infant outcomes. They followed
up 456 female participants for one year and reported that
140 partners (31%) attended the clinic and such attendance
was associated with reduced HIV acquisition and infant
mortality. Msuya et al. in Tanzania reported that male attendance was associated with numerous positive outcomes
for the subgroup diagnosed with HIV a threefold uptake of
antiretroviral treatment, a fourfold increase in breastfeeding
avoidance and a sixfold increase in continuing to use services
to support feeding choices. Farquhar et al. [42] in Kenya
showed an association between male partner involvement
and intervention uptake, breastfeeding avoidance and condom use. Msuya et al. in Tanzania also found an association
between partner involvement and intervention acceptance,
as well as continuing to use services to support infant feeding
methods. Mohlala et al. in South Africa reassuringly demonstrated no differences in intimate partner violence but
showed reduced sexual risk behaviour for those in the
intervention group. Desgrées-Du-Loû et al. [27] in Cote
d’Ivoire demonstrated an association between partner testing and communication as well as condom use postdelivery.
Twelve of the thirteen studies were conducted in Africa.
The only UK study reported startlingly low inclusion of males
(0.6%) [44]. No data from North or South America, Asia or
Australasia on male involvement and interventions were
identified.
Discussion
The literature and this systematic review show a growing
understanding of male involvement yet point out the need
for much more robust study and inclusion. Involvement of
males has beneficial outcomes for women and children. This
is either through direct or indirect pathways such as support
or increased treatment adherence.
HIV testing of male partners is low
Early data have shown that it is cost-effective to offer HIV
testing to male partners of pregnant women [18] and this has
been well established for over 13 years [19]. This has benefits
for HIV prevention to the pregnant woman, the male partner
and the infant, as well as allowing for early identification and
pathways into treatment for HIV positive males. Yet, this has
not converted into policy at the same pace as maternal HIV
testing. It is also clear that interventions do exist to promote
HIV testing of male partners, and these can be effective.
Outside of pregnancy as well as within antenatal care,
couples counselling and testing is more effective than individual counselling for male HIV testing uptake. Randomized
control data suggest that a specific VCT provision will attract
4
Data extraction of studies of male involvement in HIV and pregnancy
Study
Aluisio et al. [39]
Intervention
HIV-positive pregnant women encouraged
Female participants
456 female participants
Male outcomes
140 male partners attended (31%)
Male partner attendances associations
Male attendance associated with monogamy,
to invite partners to participate in
previous testing, discussions. Continuing to use
antenatal care. Provision of HIV testing
services not associated. Male testing and
(Kenya)
discussion associated with formula feeding.
Lower amount of infants acquiring HIV (40%
reduction)
Ditekemena et al. [41] Pregnant women attending an antenatal
2706 female participants.
591 male partners attended (22%), significantly Not measured
clinic were given an invitation for their
Randomized control trial (RCT)
higher in non-healthcare settings (bars)
male partner for HIV counselling and
(health centre bar or church)
testing (VCT) Democratic Republic of
for partner VCT
Congo (DRC)
Mohlala et al. [46]
All pregnant women were given an
1000 female participants. RCT
Significantly more male partners attended VCT
No effects on intimate partner violence.
invitation for their male partner to join
either a PIS or VCT (South Africa)
to two conditions (VCT or PIS)
session (35%) than PIS (26%). 32% vs. 11%
tested for HIV. Significant effects of VCT group
Reduced unprotected sex in pregnancy
associated with VCT group.
Pregnant women attending vertical
2654 female participants
332 male partners (12.5%) attended HIV-VCT
on unprotected sex in pregnancy.
Msuya et al. [40]
Higher uptake of ART with partner participation
transmission treatment were encouraged
(91% vs. 74%), avoidance of breastfeeding (19%
to inform and invite male partners for HIV-
vs. 6%) and infant testing uptake.
VCT (Tanzania)
Katz et al. [37,38]
Farquhar et al. [42]
Women attending an antenatal clinic were 2104 female participants
1993 women requested male partner
asked to invite their partners to VCT
(Kenya)
attendance; 313 (16%) men attended, 183
individual VCT.
Women attending an antenatal clinic were 2104 female participants
308 male partners participated in VCT (15%), of HIV prevalence was lower among women whose
encouraged to return with their male
whom 116 were couple counselled (38%)
partners for VCT and were offered couple
(2010) [57]
partner attended clinic. Partner involvement
associated with threefold increase of Nevirapine
posttest counselling (Kenya)
Oladokun et al.
Male ANC testing did not relate to disclosure.
use, breastfeeding avoidance and condom use.
Women attending antenatal clinics
51,952 female participants
361 (16.7%) male participants accepted HIV
(Nigeria) were encouraged to invite their
(51,614 accepted HIV testing)
testing
partners for HIV testing via word of mouth.
Byamugisha et al. [47] Women attending an antenatal clinic in
1060 female participants (530
Attending the clinic 86 male partners in the
eastern Uganda were either given a
in each group). Letter to spouse intervention attended (16.2%) and 75 in the
written invitation (intervention) or an
(invitation vs. information)
control group attended (14.2%) HIV testing 82
information sheet (control) to see which
of the 86 male partners in the intervention
partners would attend the clinic and be
group were tested (95%) and 68 out of 75 men
HIV tested
were tested in the control group (91%)
Not measured
Not measured
Table 2.
5
Study
Desgrées-Du-Loû
et al. [27]
Intervention
Homsy et al. [43]
Male outcomes
Male partner attendances associations
HIV-positive, HIV-negative and women
710 female participants 306
41 women had male partners tested (26
High level of communication (irrespective of
who refused an HIV test were offered
HIV-positive women, 352 HIV-
HIV-positivewomen, 14 HIV-negative and 2
HIV status), and increased condom use on
prenatal counselling and HIV testing in
negative women and 52
refusers). Of male partners previously untested: sex resumption after delivery.
Cote d’Ivoire. All female participants were untested women
25% of women living with HIV, 13% HIV-
encouraged to suggest HIV testing to their
partner (Cote d’Ivoire)
negative women and 6% of previously untested
tested for HIV.
Brou et al. (2007) [58] Women attending antenatal care had an
Conkling et al. [45]
Female participants
939 female participants 545
Two-year follow-up: 96.7% of women who
HIV test in Cote d’Ivoire were suggested to tested positive and 393 tested
tested negative disclosed to partner vs. 46.2%
encourage partners to take a HIV test. Over negative
who tested positive. 23.1% of male partners of
the next two years, disclosure to their
HIV negative women test vs. 14.8% of HIV-
partner and the partner having an HIV test
positive women. Male partners of HIV-positive
was measured.
women who disclosed status more likely to test
Not measured
Two clinics (Rwanda and Zambia)
1940 women enrolled in Kigali
(37.7% vs. 10.5%)
HIV prevalence (14%). CVCT associated with
Partner participation was not associated with
compared mother and couple testing.
(984 VCT, 956 couples’
reduced loss to follow-up: Kigali, 31% couples
differences in nevirapine use.
Couples were tested when the woman
voluntary counselling and
vs. 36% (p 0.011); and Lusaka, 22% couples vs.
chose to attend with partner. All women
testing [CVCT]) and 1685
25% (p 0.137). HIV-positive women with
received invitation letter to either couple
women enrolled in Lusaka
follow-up, CVCT had no impact on nevirapine
or antenatal testing.
(1022 VCT, 663 CVCT). 1619
use (86% to 89% in Kigali; 78% to 79% in
couples tested, 2006 women
Lusaka).
Antenatal and postpartum HIV testing of
alone.
3591 pregnant women and 104 Only 2.9% women had male partners tested in
women and accompanying male partners
male tested (2.9%).
(no specific invitation described). (Uganda) Postpartum, 522 women
tested, and 176 males.
Not measured
the antenatal clinic (ANC), 25% on the maternity
ward. 48% (51/107) ANC couple counselling,
72% (130/180) in the maternity ward. Couples
counselled together 2.8% of all persons tested
in ANC, 37% of the maternity ward.
Sherr et al. [44]
HIV test uptake in antenatal care over two 3560 women, (2710 in 2002;
time periods. (United Kingdom)
ART, antiretroviral treatment; PIS, pregnancy information session.
850 in 2004).
0.6% partners offered HIV test.
Not measured
6
male partner attendance and subsequent HIV testing uptake.
These results need to be repeated in other settings to
explore the extent to which they generalize.
Male partner HIV testing benefits
The studies listed a number of benefits associated with
partner testing. Aluisio et al. demonstrated an association
between partner testing and reduced vertical transmission.
Furthermore, infant mortality was lower with male attendance, even when adjusted for maternal viral load and breastfeeding. It seems that male involvement can start addressing
disclosure problems, enhance communication and have added
benefits. The only study that looked at intimate partner
violence showed no increases as a result of partner testing.
Yet, the data are somewhat disappointing in that only 13
studies could be identified, and for many, the ‘‘intervention’’
was the offer of HIV testing in some form or other, enhanced
at times with couple counselling, but very little else was
on offer. The review reveals an enormous gap in provision.
Of the 13 studies, all of them concentrated on HIV testing
and counselling for male partners. No studies were found
with any other constructive intervention for men during the
period of pregnancy.
The qualitative data reveal a number of barriers for men in
terms of involvement in healthcare provision and initiatives
for women and these data should inform future strategies
and policies. Men see the antenatal environment as a
woman’s domain and find it hard to navigate [34]. Indeed,
a randomized-controlled trial providing different venues for
VCT found significantly higher uptake in non-healthcare
locations such as bars and churches. Two studies explored
the feasibility of weekend testing to try and accommodate
conflicting work demands for men. This was found to be
feasible and attracted couples to test [40,45].
Community involvement
Studies exploring community involvement need to differentiate between interventions by community groups, with
community groups, in the community or with the community. Using all these possible definitions, no one study
reflected community involvement as such. All initiatives
seem to emanate from clinic provision, and the models of
intervention were all comparatively simple often involving
invitation letters, location variation or the provision of
educational/information sessions.
Conclusions
More to men’s needs than HIV testing a missed
opportunity
If men are to be involved from a family perspective, the
narrow approach concentrating purely on HIV testing will
need to be dramatically widened. Pregnancy provides an
opportunity for healthcare screening and provision for men
and if they are to be engaged, there ought to be something
provided specifically for them. Support for their HIV-positive
partners is associated with beneficial long-term outcomes,
and interventions to enhance, enable or encourage such
support need to be operationalized and evaluated. Indeed,
lack of support, dialogue and discussion with partners was a
predictor of pregnant females not returning for HIV test
results [25]. Even in low prevalence settings male reach is
low. A study published after the systematic review [55]
invited 1,243 male partners of 2,400 London women
attending ultrasound to undergo testing. 430 (18%) accepted
and although there were no HIV positive tests, 16 other
infections were diagnosed (hepatitis C, hepatitis B and C
trachomatis), clearly pointing to the wider range of health
needs which should be considered. As these infections could
also affect the pregnancy HIV testing only would not have
identified theses infections.
None of the studies mentioned referral to HIV treatment
for positive men to ensure parental survival. Paternal death is
associated with many adverse child development outcomes,
and the ideas around MTCT-Plus [56] should extend to
fathers. No studies even mentioned the need for paternal
treatment, yet many do now identify the importance of
maternal treatment if HIV is identified in pregnancy. Keeping
mothers alive has been shown to be an additional important
component of any strategy for infant wellbeing [48]. Yet, this
should now be extended to keeping fathers alive as well.
Paternal contributions to maternal wellbeing as well as infant
and family development are well established in the broader
literature [49,50] but do not seem to be contained in HIV
provision. Any integration of services must now look to the
benefits for male partners beyond simple establishment of
HIV status.
Future considerations
The studies suggest that men are willing to engage, yet often
feel marginalized or of secondary importance. Indeed, almost
all of the interventions did not directly approach men and
used women as a proxy to invite or take messages to their
partners for attendance and inclusion. Direct approaches may
help to engage men. Home-based couple testing initiatives
with direct invitations to male household attendees showed
an extremely high engagement and uptake rate. No studies
examined female partner perspectives on male involvement
nor addressed any possible negative effects of male involvement, despite the fact that, in the non-HIV literature, these
are considerations [51,52].
There is more to male involvement than HIV testing, and if
virtual elimination of infants acquiring HIV is to be achieved,
wider involvement of fathers at all stages of care, treatment
and provision must be explored. Solid design and evaluation
of strategies are important so as to control for potential bias
associated with measures of men who are already committed
and keen to attend [53]. Staff views, skills and needs to effect
such changes are incompletely understood. As the potential
benefits of integrated care are being considered [54], inclusion of male provision should be actively pursued, in terms
of policy, procedure, funding and environmental changes to
facilitate and welcome men, reach out to appropriate venues
to make services available and to monitor the effects of such
changes on men and women alike.
Authors’ affiliation
Research Department of Infection & Population Health, Royal Free and UC
Medical School, UCL, London, United Kingdom
Competing interests
7
LS devised, researched and wrote the paper. NC contributed to the systematic
review in terms of key word searches, article filtering and data abstraction.
The final paper was jointly edited. All authors have read and approved the final
version.
References
1. UNAIDS. Ten Targets: 2011 United Nations General Assembly Political
Declaration on HIV/AIDS: Targets and elimination commitments, June 2011.
Available from: http://www.unaids.org/en/media/unaids/contentassets/documents/unaidspublication/2011/JC2262_UNAIDS-ten-targets_en.pdf.
2. Shah M, Johns B, Abimiku A, Walker DG. Cost-effectiveness of new WHO
recommendations for prevention of mother-to-child transmission of HIV in a
resource-limited setting. AIDS. 2011;25(8):1093102.
3. Nakakeeto ON, Umaranayake L. The global strategy to eliminate HIV
infection in infants and young children: a seven-country assessment of costs
and feasibility. AIDS. 2009;23(8):98795.
4. Mahy M, Stover J, Kiragu K, Hayashi C, Akwara P, Luo C, Stanecki K, Ekpini R,
Shaffer N. What will it take to achieve virtual elimination of mother-to-child
transmission of HIV? An assessment of current progress and future needs. Sex
Transm Infect. 2010;86(Suppl 2):ii4855.
5. Fakoya A, Lamba H, Mackie N, Nandwani R, Brown A, Bernard E, et al.
British HIV Association, BASHH and FSRH guidelines for the management of
the sexual and reproductive health of people living with HIV infection 2008.
HIV Med. 2008;9(9):681720.
6. Sauer MV, Wang JG, Douglas NC, Nakhuda GS, Vardhana P, Jovanovic V, et al.
Providing fertility care to men seropositive for human immunodeficiency virus:
reviewing 10 years of experience and 420 consecutive cycles of in vitro
fertilization and intracytoplasmic sperm injection. Fertil Steril. 2009;91(6):
245560.
7. Ratnaike D. Fathers: present, or just in the room? RCM Midwives.
2007;10(3):106.
8. Genesoni L, Tallandini MA. Men’s psychological transition to fatherhood: an
analysis of the literature, 19892008. Birth. 2009;36(4):30518.
9. Johnson MP. The implications of unfulfilled expectations and perceived
pressure to attend the birth on men’s stress levels following birth attendance:
a longitudinal study. J Psychosom Obstet Gynaecol. 2002;23(3):17382.
10. Cames C, Saher A, Ayassou KA, Cournil A, Meda N, Simondon KB.
Acceptability and feasibility of infant-feeding options: experiences of HIVinfected mothers in the World Health Organization Kesho Bora mother-to-child
transmission prevention (PMTCT) trial in Burkina Faso. Matern Child Nutr.
2010;6(3):25365.
11. Montgomery ET, van der Straten A, Chidanyika A, Chipato T, Jaffar S,
Padian N. The importance of male partner involvement for women’s
acceptability and adherence to female-initiated HIV prevention methods in
Zimbabwe. AIDS Behav. 2011;15(5):95969.
12. Jewkes R, Nduna M, Levin J, Jama N, Dunkle K, Puren A, et al. Impact of
stepping stones on incidence of HIV and HSV-2 and sexual behaviour in rural
South Africa: cluster randomised controlled trial. BMJ. 2008;337:a506.
13. Exner TM, Mantell JE, Adeokun LA, Udoh IA, Ladipo OA, Delano GE, et al.
Mobilizing men as partners: the results of an intervention to increase dual
protection among Nigerian men. Health Educ Res. 2009;24(5):84654.
14. Kraft JM, Harvey SM, Thorburn S, Henderson JT, Posner SF, Galavotti C.
Intervening with couples: assessing contraceptive outcomes in a randomized
pregnancy and HIV/STD risk reduction intervention trial. Womens Health
Issues. 2007;17(1):5260.
15. Roth DL, Stewart KE, Clay OJ, van Der Straten A, Karita E, Allen S. Sexual
practices of HIV discordant and concordant couples in Rwanda: effects of a
testing and counselling programme for men. Int J STD AIDS. 2001;12(3):1818.
16. Sherr L. Fathers and HIV: considerations for families. J Int AIDS Soc.
2010;13(Suppl 2):S4.
17. Oladapo OT, Daniel OJ, Odusoga OL, Ayoola-Sotubo O. Fertility desires and
intentions of HIV-positive patients at a suburban specialist center. J Natl Med
Assoc. 2005;97(12):167281.
18. Postma MJ, Beck EJ, Hankins CA, Mandalia S, Jager JC, de Jong-van den
Berg LT, et al. Cost effectiveness of expanded antenatal HIV testing in London.
AIDS. 2000;14(15):23839.
19. Postma MJ, Beck EJ, Mandalia S, Sherr L, Walters MD, Houweling H, et al.
Universal HIV screening of pregnant women in England: cost effectiveness
analysis. BMJ. 1999;318(7199):165660.
20. Bond MJ. The missing link in MCH: paternal involvement in pregnancy
outcomes. Am J Mens Health. 2010;4(4):2856.
21. Byamugisha R, Tumwine JK, Semiyaga N, Tylleskär T. Determinants of
male involvement in the prevention of mother-to-child transmission of
HIV programme in Eastern Uganda: a cross-sectional survey. Reprod Health.
2010;7:12.
22. Aarnio P, Olsson P, Chimbiri A, Kulmala T. Male involvement in antenatal
HIV counseling and testing: exploring men’s perceptions in rural Malawi. AIDS
Care. 2009;21(12):153746.
23. Kakimoto K, Kanal K, Mukoyama Y, Chheng TV, Chou TL, Sedtha C.
Influence of the involvement of partners in the mother class with voluntary
confidential counselling and testing acceptance for prevention of mother to
child transmission of HIV programme (PMTCT programme) in Cambodia. AIDS
Care. 2007;19(3):3814.
24. John FN, Farquhar C, Kiarie JN, Kabura MN, John-Stewart GC. Cost
effectiveness of couple counselling to enhance infant HIV-1 prevention. Int J
STD AIDS. 2008;19(6):4069.
25. Msuya SE, Mbizvo E, Uriyo J, Stray-Pedersen B, Sam NE, Hussain A.
Predictors of failure to return for HIV test results among pregnant women in
Moshi, Tanzania. J Acquir Immune Defic Syndr. 2006;43(1):8590.
26. Kizito D, Woodburn PW, Kesande B, Ameke C, Nabulime J, Muwanga M,
et al. Uptake of HIV and syphilis testing of pregnant women and their male
partners in a programme for prevention of mother-to-child HIV transmission in
Uganda. Trop Med Int Health. 2008;13(5):6802.
27. Desgrées-Du-Loû A, Brou H, Djohan G, Becquet R, Ekouevi DK, Zanou B,
et al. ANRS 1201/1202/1253 Ditrame Plus Study Group. Beneficial effects of
offering prenatal HIV counselling and testing on developing a HIV preventive
attitude among couples, Abidjan, 20022005. AIDS Behav. 2009;13(2):34855.
28. Semrau K, Kuhn L, Vwalika C, Kasonde P, Sinkala M, Kankasa C, et al.
Women in couples antenatal HIV counseling and testing are not more likely to
report adverse social events. AIDS. 2005;19(6):6039.
29. Minnie KS, van der Walt SJ, Klopper HC. A systematic review of counselling
for HIV testing of pregnant women. J Clin Nurs. 2009;18(13):182741.
30. Mermin J, Were W, Ekwaru JP, Moore D, Downing R, Behumbiize P, et al.
Mortality in HIV-infected Ugandan adults receiving antiretroviral treatment and
survival of their HIV-uninfected children: a prospective cohort study. Lancet.
2008;371(9614):7529.
31. Mirkuzie AH, Hinderaker SG, Mørkve O. Promising outcomes of a national
programme for the prevention of Mother-to-Child HIV transmission in Addis
Ababa: a retrospective study. BMC Health Serv Res. 2010;10:267.
32. Snow RC, Madalane M, Poulsen M. Are men testing? Sex differentials in
HIV testing in Mpumalanga Province, South Africa. AIDS Care. 2010;22(9):
10605.
33. Were WA, Mermin JH, Wamai N, Awor AC, Bechange S, Moss S, et al.
Undiagnosed HIV infection and couple HIV discordance among household
members of HIV-infected people receiving antiretroviral therapy in Uganda.
J Acquir Immune Defic Syndr. 2006;43(1):915.
34. Falnes EF, Moland KM, Tylleskär T, de Paoli MM, Msuya SE, Engebretsen
IM. ‘‘It is her responsibility’’: partner involvement in prevention of mother to
child transmission of HIV programmes, northern Tanzania. J Int AIDS Soc.
2011;14(1):21.
35. Theuring S, Mbezi P, Luvanda H, Jordan-Harder B, Kunz A, Harms G. Male
involvement in PMTCT services in Mbeya Region, Tanzania. AIDS Behav.
2009;13(Suppl 1):92102.
36. Auvinen J, Suominen T, Välimäki M. Male participation and prevention of
human immunodeficiency virus (HIV) mother-to-child transmission in Africa.
Psychol Health Med. 2010;15(3):288313.
37. Katz DA, Kiarie JN, John-Stewart GC, Richardson BA, John FN, Farquhar C.
Male perspectives on incorporating men into antenatal HIV counseling and
testing. PLoS One. 2009;4(11):e7602.
38. Katz DA, Kiarie JN, John-Stewart GC, Richardson BA, John FN, Farquhar C.
HIV testing men in the antenatal setting: understanding male non-disclosure.
Int J STD AIDS. 2009;20(11):7657.
39. Aluisio A, Richardson BA, Bosire R, John-Stewart G, Mbori-Ngacha D,
Farquhar C. Male antenatal attendance and HIV testing are associated with
decreased infant HIV infection and increased HIV-free survival. J Acquir
40. Msuya SE, Mbizvo EM, Hussain A, Uriyo J, Sam NE, Stray-Pedersen B. Low
male partner participation in antenatal HIV counselling and testing in northern
Tanzania: implications for preventive programs. AIDS Care. 2008;20(6):7009.
41. Ditekemena J, Matendo R, Koole O, Colebunders R, Kashamuka M, Tshefu
A, et al. Male partner voluntary counselling and testing associated with the
antenatal services in Kinshasa, Democratic Republic of Congo: a randomized
controlled trial. Int J STD AIDS. 2011;22(3):16570.
8
43. Homsy J, Kalamya JN, Obonyo J, Ojwang J, Mugumya R, Opio C, et al.
Routine intrapartum HIV counseling and testing for prevention of mother-tochild transmission of HIV in a rural Ugandan hospital. J Acquir Immune Defic
Syndr. 2006;42(2):14954.
44. Sherr L, Fox Z, Lipton M, Whyte P, Jones P, Harrison U. Camden and
Islington Steering Group. Sustaining HIV testing in pregnancy evaluation of
routine offer of HIV testing in three London hospitals over 2 years. AIDS Care.
2006;18(3):1838.
45. Conkling M, Shutes EL, Karita E, Chomba E, Tichacek A, Sinkala M, et al.
Couples’ voluntary counselling and testing and nevirapine use in antenatal
clinics in two African capitals: a prospective cohort study. J Int AIDS Soc.
2010;13:10.
46. Mohlala BK, Boily MC, Gregson S. The forgotten half of the equation:
randomized controlled trial of a male invitation to attend couple voluntary
counselling and testing. AIDS. 2011;25(12):153541.
47. Byamugisha R, Åstrøm AN, Ndeezi G, Karamagi CA, Tylleskär T, Tumwine JK.
Male partner antenatal attendance and HIV testing in eastern Uganda: a
randomized facility-based intervention trial. J Int AIDS Soc. 2011;14:43.
48. JLICA. Home truths: facing the facts on children, AIDS, and poverty;
[cited 10 February 2009]. Available from: http://www.jlica.org/protected/pdffeb09/Final%20JLICA%20Report-final.pdf.
49. Cabrera NJ, Tamis-LeMonda CS, Bradley RH, Hofferth S, Lamb ME.
Fatherhood in the twenty-first century. Child Dev. 2000;71(1):12736.
50. Magill-Evans J, Harrison MJ, Rempel G, Slater L. Interventions with fathers
of young children: systematic literature review. J Adv Nurs. 2006;55(2):24864.
51. Piotrow P, Kincaid L, Hindin M, Lettenmaier CL, Kuseka I, Silberman T, et al.
Changing men’s attitudes and behavior: the Zimbabwe Male Motivation
Project. Stud Fam Plann. 1992;23:36575.
52. Sternberg P, Hubley J. Evaluating men’s involvement as a strategy in sexual
and reproductive health promotion. Health Promot Int. 2004;19:38996.
53. Montgomery E, van der Straten A, Torjesen K. ‘‘Male involvement’’ in
women and children’s HIV prevention: challenges in definition and interpretation. J Acquir Immune Defic Syndr. 2011;57(5):e1146.
54. Tudor Car L, van-Velthoven MH, Brusamento S, Elmoniry H, Car J, Majeed
A, et al. Integrating prevention of mother-to-child HIV transmission (PMTCT)
programmes with other health services for preventing HIV infection and
improving HIV outcomes in developing countries. Cochrane Database Syst Rev.
2011;(6):CD008741.
55. Dhairyawan R, Creighton S, Sivyour L, Anderson J. Testing the fathers:
carrying out HIV and STI tests on partners of pregnant women. Sex Transm
Infect. 2012 April;88(3):1846.
56. Myer L, Rabkin M, Abrams EJ, Rosenfield A, El-Sadr WM. Columbia
University MTCT-Plus Initiative. Reprod Health Matters. 2005 May;13(25):
13646.
57. Oladokun RE, Awolude O, Brown BJ, Adesina O, Oladokun A, Roberts A,
Odaibo G, Osinusi K, Olaleye D, Adewole IF, Kanki P. Service uptake and
performance of the prevention of mother-to-child transmission (PMTCT)
programme in Ibadan, Nigeria. Afr J Med Med Sci. 2010;39(2):817.
58. Brou H, Djohan G, Becquet R, Allou G, Ekouevi DK, Viho I, Leroy V,
Desgrées-Du-Loû A. ANRS 1201/1202/1253 Ditrame Plus Study Group.
When do HIV-infected women disclose their HIV status to their male partner
and why? A study in a PMTCT programme, Abidjan. PLoS Med. 2007
December;4(12):e342.
9
Ghanotakis E et al. Journal of the International AIDS Society 2012, 15(Suppl 2):17385
Review article
The importance of addressing gender inequality in efforts to end
vertical transmission of HIV
Elena Ghanotakis§1, Dean Peacock2 and Rose Wilcher3
§
Corresponding author: Elena Ghanotakis, Elizabeth Glaser Pediatric AIDS Foundation, 1140 Connecticut Ave. NW, Suite 200, Washington, DC 20036, USA. Tel: 202448-8481. ([email protected])
Abstract
Issues: The recently launched ‘‘Global Plan towards the Elimination of New HIV Infections among Children by 2015 and Keeping
their Mothers Alive’’ sets forth ambitious targets that will require more widespread implementation of comprehensive
prevention of vertical HIV transmission (PMTCT) programmes. As PMTCT policymakers and implementers work toward these
new goals, increased attention must be paid to the role that gender inequality plays in limiting PMTCT programmatic progress.
Description: A growing body of evidence suggests that gender inequality, including gender-based violence, is a key obstacle to
better outcomes related to all four components of a comprehensive PMTCT programme. Gender inequality affects the ability
of women and girls to protect themselves from HIV, prevent unintended pregnancies and access and continue to use HIV
prevention, care and treatment services.
Lessons Learned: In light of this evidence, global health donors and international bodies increasingly recognize that it is critical
to address the gender disparities that put women and children at increased risk of HIV and impede their access to care. The
current policy environment provides unprecedented opportunities for PMTCT implementers to integrate efforts to address
gender inequality with efforts to expand access to clinical interventions for preventing vertical HIV transmission. Effective
community- and facility-based strategies to transform harmful gender norms and mitigate the impacts of gender inequality on
HIV-related outcomes are emerging. PMTCT programmes must embrace these strategies and expand beyond the traditional
focus of delivering ARV prophylaxis to pregnant women living with HIV. Without greater implementation of comprehensive,
gender transformative PMTCT programmes, elimination of vertical transmission of HIV will remain elusive.
Keywords: gender inequality; HIV; PMTCT.
Received 15 February 2012; Revised 13 April 2012; Accepted 7 May 2012; Published 11 July 2012
Copyright: – 2012 Ghanotakis E et al; licensee International AIDS Society. This is an open access article distributed under the terms of the Creative Commons
Issues
Considerable progress has been made by prevention of
vertical HIV transmission programmes (commonly known as
and herein referred to as PMTCT programmes) in recent
years. Between 2001 and 2010, the estimated annual HIV
incidence among children declined from 500,000 to 390,000
[1]. These gains are attributed primarily to achievements in
PMTCT service coverage. For example, in low- and middleincome countries, the estimated percentage of HIV-positive
pregnant women receiving antiretroviral drugs (ARVs) for
PMTCT increased from 15% in 2005 to 53% in 2009 [2]. In
light of this progress, UN agencies, donors, government
leaders and development partners recently launched the
‘‘Global Plan towards the Elimination of New HIV Infections
among Children by 2015 and Keeping their Mothers Alive.’’
The plan sets global targets of less than 5% transmission of
HIV from mother to child and a 90% reduction of HIV among
young children [3].
Achieving these targets will require implementation of
all four programmatic elements of a comprehensive PMTCT
strategy, including primary prevention of HIV in women of
reproductive age, reducing unmet need for family planning
among women living with HIV, scaling up more efficacious
ARV regimens for women living with HIV and HIV-exposed
infants and expanding treatment and care to women,
children and their families (Figure 1) [3]. To date, however,
most PMTCT efforts have focussed primarily on prong
3 providing ARVs to pregnant women living with HIV
[4,5]. Moreover, formidable challenges related to each of
the four prongs of the PMTCT framework still exist (Table 1).
Reorienting PMTCT programmes in two key ways could
accelerate progress towards the goal of ending vertical
transmission of HIV. First, more widespread implementation
of comprehensive PMTCT programmes that address all four
prongs must be achieved. Second, increased attention must
be paid to the role that gender inequality plays in limiting
PMTCT programmatic progress.
A growing body of evidence suggests that gender inequality, including gender-based violence (GBV), is a key obstacle
to better outcomes related to all four prongs. Gender
inequality affects women’s and girls’ ability to protect
themselves from HIV, control their fertility and access and
adhere to HIV prevention, care and treatment services [14].
1
Figure 1.
Primary
prevention of
HIV among
women of
childbearing
age
Prevention of
unintended
pregnancies
among
women living
with HIV
Prevention of
transmission
from HIVpositive
women to
their infants
Provision of
treatment,
care and
support to
HIV-positive
women and
their children
and families
Prong 1
Prong 2
Prong 3
Prong 4
Four-prong strategy for prevention of vertical HIV transmission.
As HIV policymakers and PMTCT implementing partners
work towards elimination targets, addressing gender inequality should be central to these efforts. Yet, gender inequality
has not been prioritized in the context of PMTCT programme
implementation. This paper reviews evidence of the relationship between gender inequality and each of the four prongs
of the comprehensive PMTCT framework. We then provide
examples of evidence-informed practices for addressing
gender inequality that also have potential to enhance PMTCT
programme outcomes.
Table 1.
Gender inequality and its impact on PMTCT
programmes
The World Health Organization (WHO) defines gender as
society’s collective ideas about the appropriate roles, rights,
duties, responsibilities, accepted behaviours, opportunities
and the status of women and men in relation to one another
[14]. While societal perceptions of gender vary within and
between cultures and can change over time, women tend to
be disproportionately harmed by gender norms. These norms
often confer greater access to resources, power and influence
PMTCT programmatic shortcomings and challenges
Prong 1: Primary prevention of HIV among
women of childbearing age
Women of reproductive age shoulder a growing and disproportionate burden of the
epidemic; in sub-Sahara Africa, women account for 61% of people living with HIV [1].
Among young people aged 15 to 24 years, HIV prevalence is on average three times
greater among young women than young men [6].
Prong 2: Prevention of unintended pregnancies
among women living with HIV
Studies from South Africa, India, Rwanda and Cote D’Ivoire suggest that the rates of
unintended pregnancy among women living with HIV may be higher than in the
general population [710].
Studies examining data from Kenya, Malawi and Uganda reported low levels of
contraceptive use among HIV-positive women who expressed not planning to have
more children [11,12].
Abundant evidence of the powerful contribution contraception can make in
preventing vertical transmission exists, yet critical linkages between voluntary family
planning services and HIV programmes are not widely implemented [13].
Prong 3: Prevention of transmission from
Only 26% of an estimated 125 million pregnant women were tested for HIV in
2009 [2].
47% of an estimated 1.4 million pregnant women living with HIV did not receive
HIV-positive women to their infants
ARVs to prevent vertical transmission in low and middle income countries in
2009 [2].
Prong 4: Provision of treatment, care and
support to HIV-positive women, their children
and families
An estimated 15% of pregnant women living with HIV received ARVs for their own
health in 2009 [2].
Of the 1.4 million infants born to mothers living with HIV, only 35% received ARV
prophylaxis in 2009 [2].
Only 15% of infants born to mothers living with HIV were reported to have received
testing for HIV within the first two months of life [2].
Only 28% of children less than 15 years in need of ARV therapy received it in
2009 [2].
Abbreviations: PMTCT, prevention of vertical HIV transmission; ARV, antiretroviral.
2
Table 2.
Summary of the impact of gender inequality on prongs of the PMTCT strategy
Element 1: Primary prevention of HIV among women of
childbearing age
Traditional perceptions of masculinity often encourage sexual risk-taking by
men, which increases risk of HIV for themselves and their partners and
discourage health seeking behaviours amongst men, including testing and
uptake of treatment.
Women, especially in relationship dynamics of younger women partnering
with older men, often lack the power to insist on safe sex practices, including
faithfulness and condom use, and thus protect themselves from HIV.
Gender-based violence is widespread and increases risk of HIV in women.
Men who commit intimate partner violence are more likely to engage in
transactional sex, commit sexual violence, have multiple partners and have
STIs, including HIV.
Gender-based violence increases during pregnancy when women are more
physiologically vulnerable to HIV.
Prong 2: Prevention of unintended pregnancies among
Restrictions on women’s mobility and lack of access to transportation and
financial resources may limit their ability to seek contraceptive services.
Men often make decisions about childbearing, family size, contraceptive use
and the timing and conditions of sex.
The social and economic status of women is often defined by their ability to
bear children.
HIV-positive women tend to rely on condoms for pregnancy prevention, yet
may lack the power to negotiate condom use.
Prong 3: Prevention of transmission from
Restrictions on women’s mobility and lack of access to transportation and
financial resources may limit their ability to seek PMTCT services.
HIV-positive women to their infants
Men are often the decision-makers regarding women’s health and whether
they access services, including PMTCT services.
Prong 4: Provision of treatment, care and support to
Fear of negative reactions from partners is a major reason for women’s
refusal of HIV testing and disclosure, especially among pregnant women.
HIV-positive women and their children and families
Women in ANC experience high rates of disclosure-related intimate partner
violence.
Women face challenges adhering to ARVs in the absence of disclosure of HIV
status to their partners.
Intimate partner violence has been attributed to causing women not to take
or adhere to ARVs.
Abbreviations: PMTCT, prevention of vertical HIV transmission; ARV, antiretroviral, STIs, sexually transmitted infections; ANC, antenatal care.
to men, thereby creating and perpetuating inequalities
between women and men [15]. Several dimensions of gender
inequality, including GBV, have been identified as propagating the spread of HIV in general and undermining efforts to
prevent vertical transmission in particular (Table 2).
Prong 1: primary prevention of HIV among women of
childbearing age
In many countries, traditional perceptions of masculinity enable and often encourage men to dominate sexual
decision-making, engage in risky sexual behaviours, perpetrate violence against women and refrain from seeking
healthcare services all of which place men and their female
partners at risk of HIV [16]. Women, on the other hand, often
have limited ability to negotiate safer sexual practices and
protect themselves from HIV due to gender-based power
inequities [17]. This power dynamic is accentuated in cases
where older men, who are more likely than younger men to be
living with HIV, have sexual relations with younger women
[1,1820]. An analysis of more than 40 studies from subSahara Africa suggests that a substantial proportion of
adolescent girls have male sexual partners 5 to 10 years older
than themselves [21]. A study from Uganda suggests that the
risk of acquiring HIV doubles for girls aged 15 to 19 years who
have male partners 10 or more years older [20].
GBV1 is one of the most damaging forms of gender
inequality [22] and is another major driver of HIV among
women of childbearing age. Most often carried out by an
intimate partner, GBV is widespread in many countries
hardest hit by HIV [2325]. Data from several countries
suggest that the risk of acquiring HIV is up to seven times
higher for women with violent or controlling intimate
3
partners [2628]. Studies from South Africa, India, Rwanda
and Uganda have found that violent men tend to have
multiple sexual partners, engage in transactional sex, use
condoms less frequently and are more likely to commit
sexual violence and to have sexually transmitted infections,
including HIV [2933]. Data also suggest that violence and
forced sex are common features of older male/younger
female relationships [20,33].
Pregnancy is a period during which women often experience increased physical and sexual violence from their
intimate partners [34,35]. A review of African studies on
intimate partner violence (IPV) against pregnant women
found that the prevalence of IPV during pregnancy ranges
from 2% to 57%, with an average prevalence of 15% [36].
Pregnancy is also a time when women are physiologically at
increased risk of HIV [37,38]. Acquiring HIV during pregnancy,
in turn, may increase risk of vertical HIV transmission due
to increased maternal viral load [14].
Prong 2: prevention of unintended pregnancies among
Preventing unintended pregnancies among women living
with HIV requires that women are able to make decisions
about how many children to have, access family planning
services when pregnancy prevention is desired, and initiate
and continue use of a contraceptive method as long as they
wish to avoid pregnancy. Many women, regardless of HIV
status, are often unable to use contraception for a variety of
reasons rooted in gender inequality [39,40]. Restrictions on
women’s mobility and lack of access to transportation and
financial resources may limit their ability to seek contraceptive services. In addition, husbands, who tend to desire
more children than their wives, often hold greater decisionmaking power about childbearing, contraceptive use and the
timing and conditions of sex [41,42]. Women may also not try
to space or limit births because their social and economic
status is defined by their ability to bear children [43].
These gender-based obstacles to contraceptive use have
important implications for women with HIV. Several studies
have found that HIV-positive women are less likely to report
wanting more children than HIV-negative women [4446].
However, the childbearing intentions of HIV-positive men
and women often differ, with HIV-positive men reporting
greater fertility desires than HIV-positive women [4749].
In addition, compared to HIV-negative women, women with
HIV who use contraception are more likely to rely on male
condoms for pregnancy prevention [5052]. However, condoms are associated with higher pregnancy rates than other
non-barrier contraceptive methods because they must be
used correctly and consistently during every act of sexual
intercourse [53]. Correct and consistent condom use, in turn,
requires the cooperation of male partners. Where gender
inequality limits HIV-positive women’s decision-making
power and ability to negotiate the conditions of sex, discordance about fertility desires and a reliance on condoms
for pregnancy prevention among HIV-positive or serodiscordant couples may contribute to unintended pregnancies.
Prong 3: prevention of HIV transmission from HIV-positive
women to their infants and Prong 4: provision of treatment,
care and support to HIV-positive women and their children
and families2
For pregnant women living with HIV, gender inequality
often impedes their ability to access and continue using
PMTCT services and HIV treatment and care [5457]. In many
settings, traditional gender roles confer power on men to
make decisions related to women’s participation in PMTCT
programmes, including whether women undergo HIV testing,
return for follow-up appointments and adhere to ARV
regimens [14,55,57,58]. Up to 75% of women in some
countries say that their husbands alone make health
decisions for their families [14].
Male partners’ influence on women’s uptake of HIV
testing, especially in the context of antenatal services, is
well-documented [59]. Women’s perception of their husbands’ approval of HIV testing has been identified as one of
the strongest predictors of women’s willingness to accept
HIV testing [54]. Likewise, opposition from male partners is
associated with low HIV testing uptake as well as failure to
return for test results [57,59].
For women who undergo HIV testing, disclosure of HIV
status to partners is important for ensuring they are able
to access a range of HIV prevention, treatment and care
services [60]. However, between 16% and 86% of women in
developing countries choose not to disclose their HIV status
to their partners [60]. Studies from Tanzania, South Africa
and Kenya revealed that between 16% and 51% of women
in these countries did not disclose their HIV status to
their partners for fear of violence [60]. A review by WHO
that included 10 studies in developing countries published
between 1990 and 2001 found that women’s reported rates
of violence as a reaction to disclosure ranged from 3.5% to
14.6% [60]. The highest rates of disclosure-related violence
were reported among women attending antenatal services
[60]. However, this analysis only included women who chose
to disclose and was hampered by underreporting of violence
and inconsistent measures of violence.
Women who do not disclose their HIV status to partners
and families may experience difficulty adhering to ARV
prophylaxis and ongoing treatment [12]. Because these
women have to hide their HIV status and their ARV medicines, they may not access treatment at all or they may miss
doses and appointments for medication refill [52,53]. Women
participating in a study in Malawi reported that domestic
violence at the hands of their husbands and intimate
partners, and the fear of such violence, had a negative
impact on their ability to start and continue using ARVs [52].
Description
As evidence of the link between gender inequality and HIV
accumulates, global health donors and international bodies
increasingly recognize that addressing gender disparities
that put women and children at increased risk for HIV
and impede access to HIV services is an essential part of
global health programming. Gender equality is not only the
focus of Millennium Development Goal (MDG) 3 but also
widely acknowledged to be a key driver of all the MDGs [61].
4
In 2009, UNAIDS published the ‘‘UNAIDS Action Framework:
Addressing Women, Girls, Gender Equality and HIV’’ in an
attempt to intensify support for a ‘‘gender transformative
AIDS response.’’ Shortly thereafter, UNAIDS released the
accompanying ‘‘Agenda for Accelerated Country Action for
Women, Girls, Gender Equality and HIV 20102014,’’ which
provided clear targets and timeframes for advancing efforts
to remedy gender inequality. The Global Fund to Fight AIDS,
Tuberculosis, and Malaria has developed two complimentary
strategies to articulate its commitment to addressing gender
issues: (1) The Gender Equality Strategy and (2) Sexual
Orientations and Gender Identity Strategy. Together, these
strategies encourage funding of proposals that address the
gender dimensions of HIV, tuberculosis and malaria.
The US Government, one of the largest funders of HIV
programmes, has also recently increased its commitment to
address gender inequality through global health and development programmes. In 2012, the US Agency for International Development (USAID) released a newly updated policy
on Gender Equality and Female Empowerment. This policy
demands that approaches and actions to advance gender
equality and empower women and girls are integrated into
all USAID investments, including investments in HIV and AIDS.
Concurrently, a ‘‘focus on women, girls, and gender equality’’
remains a cross-cutting principle of the US Global Health
Initiative (GHI). As a flagship programme of the GHI, the US
President’s Emergency Plan for AIDS Relief (PEPFAR) has also
expanded its commitment to addressing gender, prioritizing
the following strategies: increase gender equity to HIV and
AIDS programmes and services; reduce violence and coercion; address male norms and behaviours; increase women’s
legal protection; and increase women’s access to income and
productive resources.
The policy environment at country level is also becoming
more attuned to the intersections between gender inequality
and HIV. A review of 20 National HIV Strategic Plans of
southern and eastern African countries found that these
plans frequently include language emphasizing the importance of addressing gender equality in the context of HIV.
However, the review also found that the plans do not
operationalize this language with gender-specific interventions or comprehensive strategies that target the underlying
gender inequalities [62].
The need for approaches that seek to overcome genderbased obstacles to preventing vertical HIV transmission is
evident. The current supportive policy environment provides
unprecedented opportunities to better integrate the medical
and socio-cultural aspects deemed critical to the success of
comprehensive PMTCT programmes.
Taking action: evidence-informed interventions
for addressing gender inequality in PMTCT
programmes
Effective strategies to transform harmful gender norms and
mitigate the impacts of gender inequality on HIV programming are emerging. Global research has shown that programmes that target transformation of gender roles and
promote gender equitable relationships between men and
women have better health outcomes than programmes that
do not take gender inequalities into account [63].
Gender-based interventions can be implemented at the
community or facility level. Community-based HIV programmes that seek to address gender inequality tend to
take one of three programmatic approaches: empowering
women and girls; engaging men and boys to promote gender
equality; or working with men/boys and women/girls together. At the facility level, interventions that include men
such as couples counselling, gender sensitization of healthcare providers and IPV screening also have demonstrated
potential to enhance health outcomes by addressing harmful
norms and inequalities. We provide examples of communityand facility-based interventions that seek to transform
gender relations as a means to achieve HIV or reproductive
health-related outcomes. We include community-based
interventions that were rigorously evaluated for their impact
on both HIV/reproductive health- and gender-related outcomes. Few facility-based gender transformative interventions have been rigorously evaluated for their impact on
gender outcomes, so we describe promising interventions
that warrant further investigation.
Community-based interventions
Several community-based HIV and reproductive health
interventions hold promise as effective approaches to
addressing gender inequality and enhancing PMTCT programming (Table 3). While these programmes have not been
scaled up and data on their long-term impact is lacking, the
interventions were rigorously evaluated in the pilot phase
and have achieved promising outcomes relevant to the four
prongs of a comprehensive PMTCT strategy.
Empowerment of women and girls
Decreasing women’s vulnerability to HIV through empowerment initiatives can take many forms. Most of these
initiatives seek to improve women’s access to information,
education, services and technologies; strengthen skills to
communicate and negotiate safer sex; and/or increase control over financial and material resources. Ultimately, these
efforts aim to tackle gender-based inequalities that place
women at increased risk of HIV in the first place.
The Intervention with Microfinance for AIDS and Gender
Equality (IMAGE) Project from South Africa was a multifaceted women’s empowerment intervention that sought to
reduce gender-based violence and HIV in communities by
offering women microfinance loans paired with a year-long
participatory gender-training programme, ‘‘Sisters for Life.’’
The training programme included six months of a structured
participatory group curriculum focussed on building women’s
understanding of HIV, gender norms, domestic violence and
sexuality, followed by a six-month community mobilization
phase [64]. Evaluation results suggest the intervention was
effective in achieving a number of outcomes directly relevant
to PMTCT programmes [64]. After 24 months, the experience
of violence was reduced by 55% in programme participants,
while it remained constant or increased in control groups
[64]. The project also positively impacted HIV-related
communication, increased women’s autonomy in decisionmaking, improved uptake of voluntary HIV counselling and
5
Table 3.
Summary of evidence-informed gender transformative interventions
Intervention/programmatic example
Empowerment of women and girls
The IMAGE Project (South Africa/
Evaluation design and key outcomes
Community randomized control trial:
N 5400)
Relevance to PMTCT programming
contribute to HIV prevention in women of
experience of violence while it remained
reproductive age and better access and
constant or increased in control groups
Increased positive HIV-related
adherence to services.
communication
A reduction in violence against women can
55% reduction in direct participants’
Increased positive HIV-related
communication can support HIV disclosure
Increased female autonomy in decisionmaking
and subsequent access to services.
Increased autonomy in women can help
Improved uptake of voluntary HIV
women negotiate safe sex to prevent HIV
counselling and testing
and unintended pregnancies in addition to
Decreased unprotected sex with a non-
helping women access HIV services.
spousal partner
Engaging men and boys
Programme H (Brazil/N780)
Quasi-experimental design:
Improved gender equitable attitudes,
beliefs
women at increased risk of HIV and
Increased recognition of women as having
unintended pregnancy and foster greater
sexual rights and agency in male
participants
Positive changes in gender attitudes in men
can reduce harmful behaviours that place
access to services.
Increased condom use can contribute to
Increased HIV testing
primary prevention of HIV and fewer
Increased condom use
unintended pregnancies.
Malawi Male Motivator Project
Randomized controlled trial:
(Malawi/N 400)
Increased contraceptive use
sexual rights and agency can enable
Improved communication within couples
women to protect themselves from HIV and
Increased recognition of women as having
unintended pregnancy.
The increase in HIV testing by men can
facilitate better uptake and adherence to
clinic-based PMTCT services.
Better communication between spouses
about reproductive health and increased
contraceptive use can reduce unintended
pregnancies.
Working with women/girls and men/
boys together
Stepping Stones (South Africa/
Cluster randomized control trial:
N 2794)
behaviours in men can contribute to
primary prevention of HIV in women of
higher condom use, less transactional sex,
reproductive age and prevention of
less perpetration of sexual violence and
substance abuse)
Improvements in gender-norm risk
Reduced gender norm-related risk
behaviours in men (fewer sexual partners,
unintended pregnancies.
Women exposed to the intervention had
Less perpetration of violence can
contribute to primary prevention and
33% reduction in HSV-2 incidence
better access and adherence to services.
Fewer herpes infections can contribute to
prevention of HIV in women of
reproductive age.
IMAGE, Intervention with Microfinance for AIDS and Gender Equality; PMTCT, prevention of vertical HIV transmission; HSV-2, herpes simplex
virus type 2.
testing and decreased unprotected sex with a non-spousal
partner. Notably, the average age of participants was 42
years; thus, many of the women were outside the high-risk
age group for HIV and the reproductive age group typically
served by PMTCT programmes. Questions remain as to
whether the IMAGE programme would have a similar impact
if implemented as part of a PMTCT programme strategy.
However, a secondary analysis of IMAGE data examining
6
HIV risk behaviours among young female participants aged
15 to 35 years offers encouraging evidence. Compared with
controls, young participants reported higher levels of HIVrelated communication, greater uptake of VCT and less
unprotected sex after two years of follow-up [65].
Working with men and boys for gender equality
Increasingly, research suggests that constructively engaging men as supportive partners for women’s health and
working with them to challenge attitudes and behaviours
that perpetuate gender inequality can improve HIV and
reproductive health outcomes for women and men. In the
context of PMTCT, male involvement strategies have largely
focussed on encouraging male partners to learn their HIV
status and increasing men’s support for their female partner’s
participation in prong 3 PMTCT services. They have not
sought to address the underlying inequalities that hamper
women’s participation in PMTCT services in the first place.
While no community-based men’s engagement interventions have been evaluated for their impact on women’s
uptake of PMTCT services, Programme H and the Malawi
Male Motivators project are examples of gender transformative approaches for constructively engaging men, which
may have the potential to positively influence PMTCT
outcomes.
Programme H is a community-education and social marketing campaign to promote gender-equitable attitudes and
action among young men in relation to sexual and reproductive health, including HIV prevention, care, treatment
and support, gender-based violence and fatherhood [66]. The
programme includes a series of group educational activities
and videos, critical reflection, social marketing to change
community norms and advocacy efforts.
In an evaluation of the programme in three low-income
communities in Brazil, with assessments before the intervention and six and twelve months postintervention, Programme H increased men’s support for gender equality as
well as their uptake of HIV prevention services and use of
condoms [66]. The programme thus has potentially important
implications for PMTCT programming insofar as it reduces
harmful behaviours that place women at increased risk of HIV
and unintended pregnancy and fosters increased uptake of
clinical services.
A men’s engagement intervention that has proven effective in increasing contraceptive uptake is the Malawi Male
Motivator Project [67]. This project, which sought to increase
contraceptive use among married couples, consisted of a
peer-delivered educational intervention targeting husbands
that included information about family planning, discussions
about impact of gender roles on outcomes and an emphasis
on joint decision-making about fertility and contraceptive
desires. The evaluation found significant increases in contraceptive use in the intervention arm compared to the control
arm; increased ease and frequency of communication within
couples were the only significant predictors of contraceptive
uptake. While not designed specifically for HIV-positive
couples, this gender-based family planning intervention holds
promise as an effective strategy for improving the quality of
women and men’s relationships and reducing unintended
pregnancies among married women with HIV.
Working with men and women together
Changing harmful gender norms and promoting gender
equality may require working together with men and women
to create collective understanding of how people are shaped
by these norms and to identify shared values to overcome
them. A recent review of the strengths and limitations of
approaches that either focus on women’s empowerment or
work with men for gender equality concluded that policymakers needed ‘‘to increasingly consider synergistic and
integrated approaches that simultaneously target men and
women for gender-transformative work’’ [68].
Stepping Stones is a participatory gender-focussed programme that brings together men and women in a community to discuss and analyze factors that increase their
vulnerability to HIV and take actions to address these factors.
It features the use of 18 workshops that convene different
combinations of four groups of older and younger men
and women and also includes intergenerational, community
dialogues to challenge harmful gender norms that exist in
communities.
Stepping Stones was evaluated in a rigorous cluster randomized controlled trial in South Africa [69]. Its promising
findings, which are relevant to all components of PMTCT
programming, include statistically significant reductions in
a number of gender norm-related risk behaviours among
men, including men reporting fewer sexual partners, higher
condom use, less transactional sex, less substance abuse
and less perpetration of IPV. Moreover, the impact of the
programme on perpetration of IPV was strengthened over
the two-year follow-up period. While there was no evidence
that Stepping Stones directly lowered the incidence of HIV
in intervention participants, it was associated with a 33%
reduction in the incidence of herpes simplex virus type 2
(HSV-2) over a two-year period. Given that IPV and HSV-2 are
risk factors for HIV acquisition, the Stepping Stones programme holds promise as a gender transformative approach
that could contribute to better PMTCT outcomes. However,
despite these encouraging findings, it should be noted that
the programme did not produce desired behaviour changes
among women. The evaluation found more transactional sex
among women in the intervention arm at 12 months and a
suggestion of more unwanted pregnancies at 24 months.
Facility-based interventions
Few interventions at the facility level have been rigorously
evaluated for their gender transformative impact. However,
couples HIV testing and counselling (HTC) and IPV screening
show promise for improving PMTCT outcomes through
attention to issues of gender inequality.
Several studies have documented the positive impact of
couples HTC on uptake of HIV testing and other PMTCT
services [70,71]. However, no consistent guidance exists on
the components of couples HTC and which ones have the
greatest impact. The scope of couples HTC can range from
simply testing male partners for HIV in PMTCT services, to
efforts to enhance communication dynamics within couples,
to gender transformative counselling where providers are
7
sensitized to the links between gender inequality and HIV
and trained to challenge harmful gender norms, attitudes
and behaviours in the couples they counsel. More research is
needed to examine the nuances of how PMTCT outcomes
and gender relations are affected by couples HTC. In addition,
particular attention needs to be paid to potential negative
consequences of promoting couples HTC and involving men
in other clinic-based activities. In the absence of evidenceinformed guidance for and sophisticated measures of engaging male partners in clinic-based interventions for women’s
HIV prevention, concerns have been raised that such efforts
may have unintended consequences, such as reinforcing
men’s roles as decision-makers, disempowering women or
promoting IPV [72]. Indeed, one randomized controlled trial
found that male involvement in PMTCT services had a
negative impact on women’s uptake of PMTCT services and
antenatal care [73].
Given the increase in reported IPV during pregnancy, the
links between IPV and women’s risk of HIV and IPV as a
barrier to uptake of services, several studies have highlighted
the importance of IPV screening in the context of HIV
programmes [74,75]. While little data exist on the feasibility
and impact of IPV screening in PMTCT care settings, HTC has
been deemed an appropriate and accessible venue for IPV
screening and counselling in resource-poor settings [76,77].
A pilot intervention aimed at addressing IPV among pregnant
women in Peru found that simply asking women about
abuse and offering a referral could potentially interrupt and
prevent further abuse [78]. IPV screening may also provide an
opportunity to engage clients in discussions around gender
inequality in relationships and related HIV risks [77]. However, further research is needed to determine the impact of
IPV screening on reducing women’s experience of violence
and on increasing women’s access, uptake and continued use
of PMTCT services.
Lessons Learned
International commitment to end paediatric AIDS is greater
than ever. However, to successfully implement a comprehensive PMTCT approach, programmes must address the
underlying gender inequalities that make women and
children vulnerable to HIV and often prevent them from
accessing and continuing to use services.
A growing body of evidence indicates that health programmes that seek to transform gender roles and promote
gender equitable relationships between men and women are
more effective than gender-neutral programmes or programmes that do not take gender inequality into account
[63]. In the context of PMTCT programmes, promoting
gender equality in conjunction with facility-based medical
interventions has the potential to produce gains on all four
PMTCT prongs. It can enable PMTCT programmes to expand
beyond the traditional focus of delivering ARV prophylaxis to
pregnant women living with HIV and also work towards
enabling women to protect themselves from HIV, control
their fertility and access and continue to use a full continuum
of HIV prevention, care and treatment services.
Several community-based programmes that were designed
to challenge gender inequality have proven effective at
enhancing HIV and reproductive health-related outcomes
and, therefore, have potential to improve PMTCT programme
outcomes. Yet, these interventions have limitations, and
more research to understand the impact of these interventions in the context of PMTCT programmes is needed.
Nonetheless, by integrating these underutilized approaches
into national HIV plans and advocating for their implementation, there is promise that governments and donors can
achieve better results. Where these approaches take root,
they should be accompanied by rigorous evaluations so that
the evidence-base of effective gender-integrated PMTCT
programme strategies can expand.
The ‘‘Global Plan towards the Elimination of New HIV
Infections among Children by 2015 and Keeping Their
Mothers Alive’’ acknowledges the importance of placing
women at the centre of the response, meaningfully engaging
men and addressing structural barriers that impede service
access, uptake and retention. Gender must become a fundamental consideration as countries develop plans for
accelerated action towards the Global Plan goals so that
gender-based obstacles to PMTCT progress are identified
and steps to overcome them are outlined. Without more
widespread implementation of comprehensive, gender transformative PMTCT programmes, elimination of vertical transmission of HIV will remain elusive.
1
Elizabeth Glaser Pediatric AIDS Foundation Washington, DC, USA; 2Sonke
Gender Justice Network, Cape Town, South Africa; 3FHI 360, Research Triangle
Park, NC, USA
Competing interests
The authors have no competing interests to declare.
E. Ghanotakis and R. Wilcher conceptualized the paper and were the lead
writers. D. Peacock contributed original ideas and provided detailed comments
on the papers. All authors have read and approved the final version.
Abbreviations
ARV, antiretroviral; GBV, gender-based violence; HSV-2, herpes simplex virus
type 2; HTC, HIV testing and counselling; IMAGE, Intervention with Microfinance for AIDS and Gender Equality; IPV, intimate partner violence; PMTCT,
prevention of vertical HIV transmission; USAID, US Agency for International
Development.
Acknowledgements
The authors would like to thank Willard Cates Jr of FHI 360 and Christian Pitter
and Alicia Gable of the Elizabeth Glaser Pediatric AIDS Foundation for their
review and feedback on this manuscript.
Funding sources
RW is supported by FHI 360 with funds from the United States Agency for
International Development (USAID), Cooperative Agreement Number GHO-A00-09-00016-00, although the views expressed in this publication do not
necessarily reflect those of FHI 360 or USAID.
EG is supported by the Elizabeth Glaser Pediatric AIDS Foundation, although
the views expressed in this publication do not necessarily reflect those of the
Foundation.
Notes
1. The United Nations Declaration on the Elimination of Violence Against
Women defines violence against women and girls as any form of gender
based violence that results in, or is likely to result in, physical, sexual, or
psychological harm or suffering to women, including threats of such acts,
coercion or arbitrary deprivation of liberty, whether occurring in public or
private life. The definition differentiates between three forms of sexual,
8
physical and psychological violence that occur in the family, the general
community and perpetrated or condoned by the state wherever it occurs.
2. Given the increasing trend towards integration of HIV care and treatment
services and PMTCT programming, we have combined prongs 3 and 4 in
this section.
References
1. UNAIDS. UNAIDS World AIDS Day Report. Geneva: UNAIDS; 2011.
2. World Health Organization, Joint United Nationals Programme on HIV/AIDS
and United Nations Children’s Fund. Towards universal access: scaling up
priority HIV/AIDS interventions in the health sector progress report. Geneva:
WHO; 2010.
3. UNAIDS. Global plan towards the elimination of new HIV infections among
children by 2015 and keeping their mothers alive. Geneva: UNAIDS; 2011.
4. Wilcher R, Petruney T, Reynolds HW, Cates W. From effectiveness to impact:
contraception as an HIV prevention intervention. Sex Transm Inf. 2008;84:
ii5460.
5. Betancourt TS, Abrams EJ, McBain R, Smith Fawzi MC. Family-centred
approaches to the prevention of mother to child transmission of HIV. J Int AIDS
Soc. 2010;13(Suppl 2):S2.
6. Gouws E, Stanecki KA, Lyerla R, Ghys PD. The epidemiology of HIV infection
among young people aged 1524 years in southern Africa. AIDS. 2008;
22(Suppl 4):S516.
7. Rochat TJ, Richter LM, Doll HA, Buthelezi NP, Tomkins A, Stein A. Depression
among pregnant rural South African women undergoing HIV testing. JAMA.
2006;295(12):13768.
8. Suryavanshi N, Erande A, Pisal H, Shankar AV, Bhosale RA, Bollinger RC, et al.
Repeated pregnancy among women with known HIV status in Pune, India.
AIDS Care. 2008;20(9):11118.
9. Bangendanye L. Pregnancy, pregnancy desires and contraceptive use among
HIV-infected women: findings from a survey of women enrolled in PMTCT in
Rwanda. 3rd Annual Pediatric Conference on the Infected and Affected by HIV
and AIDS; Kigali, Rwanda; 2007.
10. Desgrees-Du-Lou A, Msellati P, Viho I, Yao A, Yapi D, Kassi P. Contraceptive
use, protected sexual intercourse and incidence of pregnancies among African
HIV-infected women. DITRAME ANRS 049 Project, Abidjan 19952000. Int J
STD AIDS. 2002;13(7):4628.
11. Homsy J, Bunnell R, Moore D, King R, Malamba S, Nakityo R, et al.
Reproductive intentions and outcomes among women on antiretroviral
therapy in rural Uganda: a prospective cohort study. PLoS One. 2009;4(1):
e4149.
12. Anand A, Shiraishi RW, Bunnell RE, Jacobs K, Solehdin N, Abdul-Quader AS,
et al. Knowledge of HIV status, sexual risk behaviors and contraceptive need
among people living with HIV in Kenya and Malawi. AIDS. 2009;23(12):
156573.
13. Wilcher R, Cates W. Reproductive choices for women with HIV. Bull World
Health Organ. 2009;87(11):8339.
14. WHO. Integrating Gender into HIV/AIDS Programmes in the Health Sector.
Geneva: WHO; 2009.
15. Gupta GR, Ogden J, Warner A. Moving forward on women’s gender-related
HIV vulnerability: the good news, the bad news and what to do about it.
Glob Public Health. 2011;6(Suppl 3):S37082.
16. Greig A, Peacock D, Jewkes R, Msimang S. Gender and AIDS: time to act.
AIDS. 2008 Aug;22(Suppl 2):S3543.
17. Caro D. A manual for integrating gender into reproductive health and HIV
programs: from commitment to action. 2nd ed. Washington DC: USAID; 2009.
18. Clark S, Bruce J, Dude A. Protecting young women from HIV/AIDS: the case
against child and adolescent marriage. Int Fam Plan Perspect. 2006;32(2):
7988.
19. Leclerc-Madlala S. Age-disparate and intergenerational sex in southern
Africa: the dynamics of hypervulnerability. AIDS. 2008;22(Suppl 4):S1725.
20. Clark S. Early marriage and HIV risks in Sub-Saharan Africa. Stud Fam Plan.
2004;35(3):14960.
21. WHO. The global coalition on women and AIDS. Violence against women
and HIV/AIDS: critical intersections, intimate partner violence and HIV/AIDS.
Geneva: WHO Information Bulletin Series Number 1; 2004. 3 p.
22. WHO [Internet]. What do we mean by ‘‘sex’’ and ‘‘gender’’? Geneva: WHO;
2004 [cited 2012 June 14]. Available from: http://www.who.int/gender/
whatisgender/en/.
23. Garcia-Moreno C, Jansen HA, Ellsberg M, Heise L, Watts CH. Prevalence of intimate partner violence: findings from the WHO multi-country
study on women’s health and domestic violence. Lancet. 2006;368(9543):
12609.
24. Hindin M, Kishor S, Ansara D. Intimate partner violence among couples in
10 DHS countries; predictors and health outcomes. DHS Analytical Studies No.
18. Calverton, Maryland: Macro International; 2008.
25. Jewkes R, Dunkle K, Nduna M, Shai N. Intimate partner violence,
relationship power inequity, and incidence of HIV infection in young women
in South Africa: a cohort study. Lancet. 2012;376(9734):418.
26. Decker MR, Seage GR III, Hemenway D, Raj A, Saggurti N, Balaiah D.
Intimate partner violence functions as both a risk marker and risk factor for
women’s HIV infection: findings from India husband-wife dyads. J Acquir
27. Dunkle K, Jewkes R. Effective HIV prevention requires gendertransformative work with men. Sex Transm Infect. 2007;83(3):1734.
28. Dunkle K, Jewkes R, Brown H, Gray G, McIntryre J, Harlow S. Gender-based
violence, relationship power, and risk of HIV infection in women attending
antenatal clinics in South Africa. Lancet. 2004;363(9419):141521.
29. Ntaganira J, Muula AS, Masaisa F, Dusabeyezu F, Siziya S, Rudatsikira E.
Intimate partner violence among pregnant women in Rwanda. BMC Womens
Health. 2008;8:17.
30. Jewkes R, Sikweyiya Y, Morrell R, Dunkle K. The relationship between
intimate partner violence, rape and HIV amongst South African men: a crosssectional study. PLoS One. 2011;6(9):e24256.
31. Decker MR, Seage GR III, Hemenway D, Gupta J, Raj A, Silverman JG.
Intimate partner violence perptration, standard and gendered STI/HIV risk
behavior, and STI/HIV diagnosis among a clinic based sample of men. Sex
Transm Infect. 2009;85(7):55560.
32. Karamagi CA, Tumwine JK, Tylleskar T, Heggenhougen K. Intimate partner
violence against women in eastern Uganda: implications for HIV prevention.
BMC Public Health. 2006;6:284.
33. Jewkes R, Dunkle K, Nduna M, Levin J, Jama N, Khuzwayo N. Factors
associated with HIV sero-status in young rural South African women: connections between intimate partner violence and HIV. Int J Epidemiol. 2006;
35(6):14618. Epub 2006 Sep 28.
34. Martin S, Harris-Britt A, Yun L, Moracco K, Kupper L, Campell J. Changes in
intimate partner violence during pregnancy. J Fam Violence. 2004;19(4):
201210.
35. Nasir K, Hyder A. Violence against pregnant women in developing
countries. Eur J Public Health. 2003;13(2):1057.
36. Shamu S, Abrahams N, Temmerman M, Musekiwa A, Zarowsky C. A
systematic review of african studies on intimate partner violence against
pregnant women: prevalence and risk factors. PLoS One. 2011;6(3):
e17591.
37. Gray RH, Li X, Kigozi G, Serwadda D, Brahmbhatt H, Wabwire-Mangen F,
et al. Increased risk of incident HIV during pregnancy in Rakai, Uganda; a
prospective study. Lancet. 2005;366(9492):11828.
38. Moodley D, Esterhuizen TM, Pather T, Chetty V, Ngaleka L. High HIV
incidence during pregnancy; compelling reason for repeat HIV testing. AIDS.
2009;23:12559.
39. McCleary-Sills J, McGonagle A, Malhotra A. Addressing the demand side
gender barriers to accessing contraception and abortion: action areas for
moving forward. Washington, DC: International Center for Research on
Women; 2010.
40. Rottach E, Schuler SR, Hardee K. Gender perspectives improve reproductive health outcomes: new evidence. Washington, DC: Population Reference
Bureau; 2009.
41. Bankole A, Singh S. Couples’ fertility and contraceptive decision-making in
developing countries: hearing the man’s voice. Int Fam Plan Perspect.
1998;24(1):1524.
42. Blanc AK. The effect of power in sexual relationships on sexual and
reproductive health: an examination of the evidence. Stud Fam Plann.
2001;32(3):189213.
43. Konje JC, Ladipo OA. Barriers to uptake and use of modern methods of
contraception in developing countries. Int J Gynaecol Obstet. 1999;65(3):
28794.
44. Kaida A, Laher F, Strathdee SA, Janssen PA, Money D, Hogg RS, et al.
Childbearing intentions of HIV-positive women of reproductive age in Soweto,
South Africa: the influence of expanding access to HAART in an HIV
hyperendemic setting. Am J Public Health. 2011;101(2):3508.
45. Elul B, Delvaux T, Munyana E, Lahuerta M, Horowitz D, Ndagije F, et al.
Pregnancy desires, and contraceptive knowledge and use among prevention of
9
mother-to-child transmission clients in Rwanda. AIDS. 2009;23(Suppl 1):
S1926.
46. Taulo F, Berry M, Tsui A, Makanani B, Kafulafula G, Li Q, et al. Fertility
intentions of HIV-1 infected and uninfected women in Malawi: a longitudinal
study. AIDS Behav. 2009;13(Suppl 1):207.
47. Nattabi B, Li J, Thompson SC, Orach CG, Earnest J. A systematic review of
factors influencing fertility desires and intentions among people living with
HIV/AIDS: implications for policy and service delivery. AIDS Behav. 2009;
13(5):94968.
48. Cooper D, Moodley J, Zweigenthal V, Bekker LG, Shah I, Myer L. Fertility
intentions and reproductive health care needs of people living with HIV in
Cape Town, South Africa: implications for integrating reproductive health and
HIV care services. AIDS Behav. 2009;13(Suppl 1):3846.
49. Nakayiwa S, Abang B, Packel L, Lifshay J, Purcell DW, King R, et al. Desire for
children and pregnancy risk behavior among HIV-infected men and women in
Uganda. AIDS Behav. 2006;10(4 Suppl):S95104.
50. Kaida A, Laher F, Strathdee SA, Money D, Janssen PA, Hogg RS, et al.
Contraceptive use and method preference among women in Soweto,
South Africa: the influence of expanding access to HIV care and treatment
services. PLoS One. 2010;5(11):e13868.
51. Heys J, Kipp W, Jhangri GS, Alibhai A, Rubaale T. Fertility desires and
infection with the HIV: results from a survey in rural Uganda. AIDS. 2009;
23(Suppl 1):S3745.
52. Johnson KB, Akwara P, Rutstein SO, Bernstein S. Fertility preferences
and the need for contraception among women living with HIV: the basis for a
joint action agenda. AIDS. 2009;23(Suppl 1):S717.
53. Cates W Jr, Steiner MJ. Dual protection against unintended pregnancy and
sexually transmitted infections: what is the best contraceptive approach? Sex
Transm Dis. 2002;29(3):16874.
54. Bajunirwe F, Muzoora M. Barriers to the implementation of programs for
the prevention of mother-to-child transmission of HIV: a cross-sectional survey
in rural and urban Uganda. AIDS Res Ther. 2005;2:10.
55. Chinkonde JR, Sundby J, Martinson F. The prevention of mother-to-child
HIV transmission programme in Lilongwe, Malawi: why do so many women
drop out. Reprod Health Matters. 2009;17(33):14351.
56. Human Rights Watch [Internet]. Hidden in the mealie meal. Gender-based
abuses and women’s HIV treatment in Zambia. 2007 Dec [cited 2011 Oct 27];
19(18A). Available from: http://www.unhcr.org/refworld/docid/4768e6292.
html.
57. Sarker M, Sanou A, Snow R, Ganame J, Gondos A. Determinants of HIV
counseling and testing participation in a prevention of mother-to-child
transmission programme in rural Burkina Faso. Trop Med Int Health. 2007;
12:147583.
58. Biratu BT, Lindstrom DP. The influence of husbands’ approval on women’s
use of prenatal care: results from Yirgalem and Jimma towns, south west
Ethiopia. Ethiop J Health Dev. 2006;20(2):8492.
59. Maman S, Groves A, King E, Pierce M, Wyckoff S. HIV testing during
pregnancy: a literature and policy review. New York: Open Society Institute;
2008.
60. WHO. Gender dimensions of HIV status disclosure to sexual partners: rates,
barriers and outcomes, a review paper. Geneva: WHO; 2004.
61. Gender equity is the key to maternal and child health. Lancet. 2010;
375(9730):1939.
62. Chrone E, Gibbs A, Willan S. From talk to action: framework on women,
girls and gender equality in national strategic plans on HIV and AIDS in
southern and eastern Africa. Heard. 2011.
63. Barker G, Ricardo C, Nascimento M. Engaging men and boys in changing
gender-based inequity in health: evidence from programme interventions.
Geneva: WHO; 2007.
64. Pronyk PM, Hargreaves JR, Kim JC, Morison LA, Phetla G, Watts C, et al.
Effect of a structural intervention for the prevention of intimate-partner
violence and HIV in rural South Africa: a cluster randomised trial. Lancet.
2006;368(9551):197383.
65. Pronyk PM, Kim JC, Abramsky T, Phetla G, Hargreaves JR, Morison LA, et al.
A combined microfinance and training intervention can reduce HIV risk
behaviour in young female participants. AIDS. 2008;22(13):165965.
66. Pulerwitz J, Michaelis A, Verma R, Weiss E. Addressing gender dynamics
and engaging men in HIV programs: lessons learned from Horizons Research.
Public Health Rep. 2010;125(2):28292.
67. Shattuck D, Kerner B, Gilles K, Hartmann M, Ng’ombe T, Guest G.
Encouraging contraceptive uptake by motivating men to communicate about
family planning: the Malawi Male Motivator Project. Am J Public Health.
2011;101(6):108995.
68. Dworkin SL, Dunbar MS, Krishnan S, Hatcher AM, Sawires S. Uncovering
tensions and capitalizing on synergies in HIV/AIDS and antiviolence programs.
Am J Public Health. 2011;101(6):9951003.
69. Jewkes R, Nduna M, Levin J, Jama N, Dunkle K, Puren A, et al. Impact of
stepping stones on incidence of HIV and HSV-2 and sexual behavior in rural
South Africa: cluster randomized controlled trial. BMJ. 2008;337:a506.
71. Msuya SE, Mbizvo EM, Hussain A, Uriyo J, Sam NE, Stray-Pedersen B. Low
male partner participation in antenatal HIV counseling and testing in northern
Tanzania: implications for preventative programs. AIDS Care. 2008;20(6):
7009.
72. Montgomery E, Van der Straten A, Torjesen K. ‘‘Male involvement’’ in
women and children’s HIV prevention: challenges in definition and interpretation. J Acquir Immune Defic Syndr. 2011;57(5):e1146.
73. Becker S, Mlay R, Schwandt H, Lyamuya E. Comparing couples’ and
individual voluntary counseling and testing for HIV at antenatal clinics in
Tanzania: a randomized trial. AIDS Behav. 2010;14:55866.
74. Jasinski JL. Pregnancy and domestic violence: a review of the literature.
Trauma Violence Abuse. 2004;5(1):4764.
75. Maman S, Mbwambo JK, Hogan NM, Kilonzo GP, Campbell JC, Weiss E,
et al. HIV-positive women report more lifetime partner violence: findings from
a voluntary counseling and testing clinic in Dar es Salaam, Tanzania. Am J Public
Health. 2002;92(8):13317.
76. Prabhu M, McHome B, Ostermann J, Itemba D, Njau B, Thielman N;
KIWAKKUKI-Duke VCT Study Group. Prevalence and correlates of intimate
partner violence among women attending HIV voluntary counseling and
testing in northern Tanzania, 20052008. Int J Gynaecol Obstet. 2011;
113(1):637. Epub 2011 Jan 22.
77. Christofides N, Jewkes R. Acceptability of universal screening for intimate
partner violence in voluntary HIV testing and counseling services in
South Africa and service implications. AIDS Care. 2010;22(3):27985.
78. Cripe SM, Sanchez SE, Sanchez E, Ayala Quintanilla B, Hernández
Alarcon C, Gelaye B, et al. Intimate partner violence during pregnancy: a pilot
intervention program in Lima, Peru. J Interpers Violence. 2010;25(11):
205476. Epub 2010 Feb.
10
Patel D et al. Journal of the International AIDS Society 2012, 15(Suppl 2):17404
Research article
Facilitating HIV testing, care and treatment for orphans and
vulnerable children aged five years and younger through
community-based early childhood development playcentres in
rural Zimbabwe
Diana Patel§,1, Priscilla Matyanga1, Tichaona Nyamundaya2, Delia Chimedza1, Karen Webb1
and Barbara Engelsmann1
§
Corresponding author: Diana Patel, Organisation for Public Health Interventions and Development, 3 Rowland Square, Milton Park, Harare, Zimbabwe. Tel: 263772412795 ([email protected])
Abstract
Introduction: Early diagnosis of children living with HIV is a prerequisite for accessing timely paediatric HIV care and treatment
services and for optimizing treatment outcomes. Testing of HIV-exposed infants at 6 weeks and later is part of the national
prevention of mother to child transmission (PMTCT) of HIV programme in Zimbabwe, but many opportunities to test infants and
children are being missed. Early childhood development (ECD) playcentres can act as an entry point providing multiple health and
social services for orphans and vulnerable children (OVC) under 5 years, including facilitating access to HIV treatment and care.
Methods: Sixteen rural community-based, community-run ECD playcentres were established to provide health, nutritional and
psychosocial support for OVC aged 5 years and younger exposed to or living with HIV, coupled with family support groups (FSGs)
for their families/caregivers. These centres were located in close proximity to health centres giving access to nurse-led
monitoring of 697 OVC and their caregivers. Community mobilisers identified OVC within the community, supported their
registration process and followed up defaulters. Records profiling each child’s attendance, development and health status
(including illness episodes), vaccinations and HIV status were compiled at the playcentres and regularly reviewed, updated and
acted upon by nurse supervisors. Through FSGs, community cadres and a range of officers from local services established
linkages and built the capacity of parents/caregivers and communities to provide protection, aid psychosocial development and
facilitate referral for treatment and support.
Results: Available data as of September 2011 for 16 rural centres indicate that 58.8% (n410) of the 697 children attending the
centres were tested for HIV; 18% (n 74) tested positive and were initiated on antibiotic prophylaxis. All those deemed eligible
for antiretroviral therapy were commenced on treatment and adherence was monitored.
Conclusions: This community-based playcentre model strengthens comprehensive care (improving emotional, cognitive and
physical development) for OVC younger than 5 years and provides opportunities for caregivers to access testing, care and
treatment for children exposed to, affected by and infected with HIV in a secure and supportive environment. More research is
required to evaluate barriers to counselling and testing of young children and the long-term impact of playcentres upon specific
health and developmental outcomes.
Keywords: HIV and AIDS; orphans and vulnerable children; community based interventions; paediatric HIV; care and support;
PMTCT; capacity building; early childhood development; participatory methods.
Copyright: – 2012 Patel D et al; licensee International AIDS Society. This is an open access article distributed under the terms of the Creative Commons Attribution
is properly cited.
Introduction
The HIV/AIDS epidemic in Zimbabwe continues to result in
increasing numbers of children affected and infected by HIV
and AIDS, a situation exacerbated by high levels of poverty and
malnutrition. Children living with HIV comprise 10% of all
those infected in Zimbabwe [1], with HIV-related deaths
accounting for 40.6% of all deaths among children under
5 in Zimbabwe [2]. With an estimated 1.3 million orphans,
Zimbabwe has one of the highest prevalence of orphaning in
the world, with an estimated 77% being orphaned by AIDS [3].
While the significant increases in survival for HIV-infected
children who have early access to diagnosis and treatment
are known [4], early infant diagnosis (EID) programmes have
been a challenge to implement in low-resource settings [5].
Improved coordination between prevention of vertical
transmission, childhood malnutrition [6] and other maternal,
newborn and child health (MNCH) services is required to
increase access to paediatric HIV diagnosis, improve patient
retention and reduce delays in initiating antiretroviral
therapy (ART) [7]. Culturally sensitive efforts to identify and
1
address the reasons for poor uptake and loss to follow up of
EID are required for optimal outcomes for HIV-exposed
children [8,9]. Children affected by HIV also face multiple
risks to their education and psychosocial wellbeing in their
families and communities [10].
The Organisation for Public Health Interventions and
Development (OPHID) is a local trust that develops and
implements innovative approaches and strategies to
strengthen MNCH services in Zimbabwe, providing enhanced
access for communities to comprehensive prevention of
mother to child transmission (PMTCT) and HIV treatment and
care. OPHID has been working closely with the Ministry of
Health and Child Welfare since 2001 to support the national
PMTCT programme in three provinces of Zimbabwe. Within
this work, there is considerable scope for community
involvement, not only in promoting uptake of ANC care
and HIV testing and treatment, and assisting in adherence to
ARV prophylaxis, but also in accessing postnatal PMTCT
services and minimising stigma and discrimination attached
to HIV and AIDS in the community. In Zimbabwe, communitybased support to date has largely focussed on orphans and
vulnerable children (OVC) aged from 7 to 18 years [11,12].
Published data [13,14] as well as OPHID observations from
programme implementation underscored that little attention
was focused on the health, development and psychosocial
needs of children under 5 years affected and infected by HIV
in their rural communities.
The community-based community-run approach
Towards the end of 2009, seeing it as a natural progression in
postnatal HIV prevention and care, OPHID seized the
opportunity to extend the PMTCT continuum of care and
treatment to rural children under 5 years of age affected and
infected by HIV, their families and carers. An informal
inventory of needs among this group indicated that many
children have limited or no access to: paediatric HIV testing
and treatment; adequate nutrition; psychosocial and early
learning support; secure and supportive adult caregiver
relationships; social protection; birth registration required
also for school enrolment; and vaccinations. The resulting
community project to support the wellbeing of children
under the age of 5 years living with and affected by HIV and
AIDS was developed in partnership with the Ministry of
Health and Child Welfare. Activities were designed in
accordance with existing policy and conducted under the
supervision of the Ministry of Public Services, Labour and
Social Welfare.
The objectives of the project were to provide health care,
social protection and psychosocial support services to
children aged younger than 5 years affected and infected
by HIV through the formation of community-based and
community-run playcentres; to follow up and increase access
to care, treatment and support to HIV-exposed and HIVinfected children; to build the capacity of parents, caregivers
and families to provide HIV care and support to children
below the age of 5 years affected and infected by HIV; and
to strengthen the capacity of the surrounding communities
supporting the playcentres in HIV prevention, care and
support to children affected and infected by HIV.
The aim of the paper is to provide a description of the
design and implementation of OPHID’s community-based
early childhood development playcentre project in order to
highlight the benefit of using transparent, participatory
approaches in programmes intended to support vulnerable
children in HIV-affected communities. The scope of the
results is limited to routinely collected programmatic data.
Nonetheless, it is useful to inform considerations for future
community-based programmes seeking to provide comprehensive HIV prevention, treatment, care and support to
vulnerable children 5 years and younger in rural low- and
middle-income high HIV prevalence settings, as well as future
areas of research.
Methods
The project was developed as an addition to ongoing
activities by PMTCT programme partners in response to
expanded access to paediatric testing and treatment of HIV
and in the absence of data on high quality community-based
intervention studies to support the psychosocial and health
needs of children affected by HIV [10,12,15]. Accordingly, the
playcentre project was developed through experience as an
extension of existing activities and not designed with an
intervention protocol as a piece of operational research. All
data collected during the course of the project were done
through routine registers. The methods and results describe
important stages of development and trends captured
through OPHID’s implementation experience.
Project design intended to build ownership of playcentres
at all levels
For the project to be relevant to the needs of the
communities, sustainable and have maximum impact on
ending and treating paediatric HIV, it was important to
facilitate national, provincial, district and community ownership of the playcentre project. Support for the playcentre
model was first obtained from the relevant Government
Ministries at national and provincial levels. OPHID project
coordinators then carried out sensitization meetings in three
districts with the relevant district and local government
offices.
Once district-level support had been obtained, rapid
assessments in the form of interviews and focus group
discussions (FGDs) were conducted at local levels to identify
the appropriate psychosocial support (PSS) services that
needed to be established. Rapid assessments also identified
existing OVC services in the district for the under-fives and
their geographical coverage; gaps in existing programme
coverage; and inventoried any existing community-based
initiatives and support structures for OVC under-five. The final
purpose of these assessments was to identify existing community structures that could be used to set up the play centres.
Community Nursing Sisters, Child and Social Welfare
Officers, council representatives and local leaders, who had
been sensitized, participated in the identification of appropriate central community spaces for the location of the
playcentres. The preferred sites were in close proximity to
the health centres. Terms of reference were drawn up for the
group facilitators, child-minders and community mobilisers
2
for each playcentre and suitable individuals from the
community were identified to participate in playcentre
development and daily operations, for example, people living
with HIV (PLHIV), members of women’s clubs and church
groups, village health workers, community-based carers and
youth and peer educators. Once the sites were agreed upon
by the community, sensitization meetings were held with the
surrounding communities with the support and assistance of
local gatekeepers, chiefs, headmen, councillors and even the
police. These meetings targeted parents and caregivers of
OVC younger than 5 years of age and focussed on the
importance of following up and supporting the children from
the PMTCT programme and other vulnerable children in the
community.
Selection and training of community cadres
Final selection of the community cadres was made with the
assistance of the Community Sister and the clinic nurses from
the clinics adjacent to the playcentre sites. Interviews were
conducted to select the cadre, reviewing literacy levels and
an understanding of the concept of volunteerism and passion
and suitability for working with small children, and OVC in
particular. Many of those selected were people living with
HIV. Training workshops were conducted by OPHID’s two
project coordinators and the EGPAF project officer with
assistance from the community nursing sisters utilising the
National Psychosocial Support Guidelines for Children Living
with HIV and AIDS 2009 [1] and the National Psychosocial
Support Training Manual for Children Living with HIV
and AIDS 2009 [16]. Each team agreed upon the times and
days of operation of their playcentres, usually three mornings
a week. The community volunteers were given a small
monthly incentive. Each cadre was supplied with a uniform and aprons and hats were provided for the children,
and these proved to be important symbols of playcentre
ownership.
Setting up and running the playcentres
During the training workshops, the community cadres
developed their community-based meaning of OVC and
how to identify those most in need using a process outlined
by the Programme of Support to the National Action Plan for
Orphans and Vulnerable Children (2008), which defined
orphans as children 0 to 18 years, who have lost one or
more parents [17]. The definition of vulnerability was all
children with unfulfilled rights, with specific vulnerability
characteristics chosen or adapted by community stakeholders
according to their context based upon a list provided in Box
1.0. Under this broad definition, the vast majority of children
living in rural settings in Zimbabwe would be considered to
be vulnerable.
Following the community sensitization meetings informing
caregivers of the playcentre’s availability and purpose,
community mobilisers also engaged in active identification
of marginalized vulnerable children in their respective
communities to offer them registration. OPHID supplied
cleaning materials, basic stationery, mugs and appropriate
equipment for supplying each child with a nutritious drink,
maheu, and corn-soya porridge. A limited number of early
learning wooden puzzles and toys, handmade by local
Box 1.0. NAP definition of vulnerability (2008)
. Children who are destitute from causes other than HIV/
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
AIDS
Children with one parent deceased
Children with disabilities
Children affected/or infected with HIV/AIDS
Abused children
Working children
Destitute children
Abandoned children
Children living on the streets
Married children
Neglected children
Children in remote areas
Children with chronically ill parents
Child parents
Children in conflict with the law
Other definitions by communities
carpenters, were distributed equally to the centres. Additionally, the communities contributed various toys made out
of recycled materials including balls, dolls, wire toys and
rattles. Parents and carers were taught how to make toys out
of locally available materials. The group facilitators and childminders provided age- and stage-appropriate learning
through play activities and psychosocial support to the
children at the centres (see Fig. 1 for playcentre model). At
registration, following signed informed consent by caregivers
(in the case of child-headed households, the extended family
or community-appointed guardian) to access the child’s
health records, information held on the Child Health Card
(provided to all children at birth) and the Patient Card (for
children with major health problems, including those living
with HIV) was recorded for each child.
Linkages
established
with local
partners to
provide
protection,
support,
treatment and
referral
Child-minders
responsible
for stimulating
cognitive
needs of the
children
Group
facilitator, 5
child-minders
and 5
community
mobilisers
PLAYCENTRE
MODEL
Group
Facilitator in
charge of the
day to day
running of the
centre
Figure 1.
Psychosocial
support and
linkages to
health services
for HIV testing
and treatment
Community
mobilisers
identify OVC,
support their
registration and
follow-up
defaulters
Playcentre model.
3
Regular site visits were made to the playcentres by the
project coordinators to monitor the running of the centres
and provide additional on-the-job training and support to
the community cadres and check on the wellbeing of the
children. Nurses from the adjacent clinics regularly checked
on the children’s health and nutritional status and those
needing care were responded to immediately. Records
were kept by the group facilitators profiling each child’s
attendance, family circumstances, age-appropriate weightfor-height development, health status (including illness
episodes), vaccinations, HIV exposure and infection status
using national National Action Plan (NAP) for OVC registers
(Activity Report Book, Medical Services Register and Chronic
Care Register). The information captured on these registers
was reported back to the District AIDS Council (DAC) on a
monthly basis for forwarding on to the National AIDS Council
(NAC) and finally to the Ministry of Labour, Public Services
and Social Welfare.
Children with special needs were referred for the requisite
support. After the initial recruitment by the community
mobilisers, any children defaulting from the playcentres were
followed up with a home visit from the community
mobilisers. These community mobilisers were also responsible to the nurses at the clinics for following up mother-baby
pairs within the PMTCT programme, as well as emphasising
the importance of adherence to ARVs and care protocols and
immunization of the children in their communities.
Through the FSGs formed at each playcentre for the carers
and parents of these children, topical issues encompassing a
holistic approach to childhood health and development were
addressed. Emphasis was also placed on the health and
welfare of families and appropriate linkages to community
services were established at each FSG meeting. The importance of all family members knowing their HIV status
and accessing treatment and care where required was
promoted, with clinic nurses providing counselling and rapid
testing for HIV, though service uptake by other family
members was not a prerequisite for children to attend
services. Access to HIV care and treatment was provided,
and there were also opportunities for vaccinations and
obtaining birth certificates.
Ethics in the playcentre model
All efforts were made to ensure that the rights of participating children were upheld at all stages of project design
and implementation. Numerous checks and balances were
integrated into programme design, including collaboration
with the Ministry of Public Service, Labour and Social Welfare
and relevant actors in child services at provincial, district and
local levels throughout the playcentre project. To avoid HIVrelated stigma, children were not recruited according to
orphan or HIV-exposure status. Rather, children were recruited as a function of ‘‘vulnerability,’’ the definition of
which was developed by the community itself and was
suitably broad to encourage inclusion of children facing many
different forms of vulnerability (i.e., children with disabilities,
children with ill parents (not HIV-specific), abused children, children living with relatives and children in abject
poverty). The caregivers and/or guardians of all participating
children signed informed consent forms prior to any
medical records being accessed and all workers and volunteers involved in playcentre activities signed confidentiality
agreements.
Results and Discussion
The results described represent programme data captured
from February 2010 to September 2011. All descriptive data
used to provide depth to reported figures were captured
from informal interviews with staff and volunteers during
project implementation.
Profile of the playcentres
The 16 rural playcentres were staffed by 176 community
volunteers, the majority of whom 155 were female. Volunteer
commitment was high, with an attrition rate of only 4% over
the 18-month reporting period; 697 children were enrolled
into the playcentres over the reporting period. Social and
demographic characteristics of children attending can be
found in Table 1.
The majority of children were of preschool age between 3
and 5 years (n 580, 83.2%), reported having both parents
living (n346; 50%), though only 37% reported living with
both parents (n 257). In terms of preventive health
measures, after joining the health centres and being linked
up with primary health care, 90% of the children enrolled
at the playcentres were up to date on their immunizations
(n629), with their vaccination schedule completed, surpassing the full immunization coverage rate for children in
Zimbabwe, which is around 75% [18].
Anecdotal reports from project staff and volunteers
indicate face-value improvements in growth and physical
strength as well as improvements in confidence and interaction due to play therapy and supplementary feeding. These
observations require more rigorous study, and characteristics
of all participating children are now recorded using the Child
Status Index (CSI) instrument for assessing the wellbeing of
OVC [19]. There are approximately three or four children per
centre with varying degrees of mental or physical disability
(e.g., deafness, cerebral palsy or Down’s syndrome). These
children have been linked to rehabilitation departments in
local health centres, relevant government services and NGOs
that assist children with special needs. A breakdown of
playcentre costs and inputs provided by the community can
be found in Table 2.
Follow up and access to care, treatment and support for
HIV-exposed and HIV-infected children
Figure 2 demonstrates the flow of children enrolled in
playcentres through the process of determining HIV-exposure status, HIV testing and subsequent OI/ART programme
enrolment and retention. HIV exposure status could not
be reliably ascertained for children for whom parent-held
Child Health Cards records were unavailable (on which HIVexposed status is recorded in code), particularly for those
whose parents had died and cause of death was unknown.
Fifty-nine percent (n410) of children enrolled in the
playcentres were tested for HIV. HIV testing always required
the consent of the caregiver or guardian and could only
be considered when it was in the best interest of the
4
Table 1.
Individual and household characteristics of children enrolled in playcentres June 2010 to September 2011 (N 697).
6
Age (in years)
0 to 2
Girls
16 (2.3%)
252 (36.2%)
8 (1.1%)
Boys
12 (1.7%)
255 (36.6%)
7 (1.0%)
Orphan status
Both alive
Single orphan
Double orphan
No data
Girls
169 (49%)
125 (36%)
42 (12%)
12 (3%)
Boys
177 (51%)
118 (34%)
39 (11%)
Both parents
One parent
Caregiver
Child headed
No data
Girls
Boys
128 (37%)
129 (37%)
110 (32%)
92 (26%)
95 (27%)
110 (32%)
4 (1%)
3 (0.9%)
11 (3%)
15 (4%)
Immunization status
Up to date
Not up to date
No data
Girls
311 (89%)
22 (6%)
15 (4%)
Boys
318 (91%)
16 (5%)
15 (4%)
Family living status
3 to 5
child, that is, that the child would benefit from treatment
and would not be stigmatized, discriminated against or
isolated.
All children diagnosed as HIV seropositive successfully
progressed from diagnosis to treatment (n 74). Every child
who was diagnosed HIV positive was enrolled in an OI/ART
programme and began taking prophylactic doses of cotrimoxazole (CTX). Those children who were deemed ART
eligible were all initiated on ART and their adherence to
treatment monitored by the playcentre volunteers and the
nearest health centre nurse. The use of standardized
registers acted as a successful method for preventing lossto-follow up as the carers of children who were recorded as
not having received their medications in the Chronic Care
Register were visited at home and offered support and
assistance by community mobilisers. With all 74 children
found to be HIV-positive recorded as retained within OI/ART
programmes and up-to-date with medication prescriptions, it
is clear that the value of the playcentre model is not only for
identifying children exposed to HIV and ensuring testing but
also for following through to ensure programme enrolment
and treatment initiation and adherence in a supportive
environment.
Table 2.
Running costs for an OPHID-facilitated playcentre.
Items
Allowances for group facilitators1
Unit costs for one playcentre
for 1 month ($USD)
40.00
Allowances for child-minders5
150.00
Allowances for community
150.00
mobilisers5
Maheu nutritional supplement for
children
20.00
Corn-soya porridge for children
40.00
Stationery
10.00
Cleaning materials
Total
65.00
475.00
Age not recorded
6 (0.9%)
4 (0.6%)
15 (4%)
Build the capacity of parents, caregivers and families to
provide HIV care and support
Together with the project coordinators and group facilitators,
nurses from the adjacent health centres facilitated capacity
building information and education sessions with FSGs,
according to a curriculum devised in consultation with each
FSG. These sessions focussed on nutrition, family health
issues, child protection, family planning, the importance of
PMTCT, adherence to care and treatment and immunization.
The FSGs were instrumental in providing information and
support to parents and caregivers on seeking HIV testing for
themselves and their children, as successfully demonstrated
by 410 children within the playcentres being tested for HIV,
with all those who tested HIV positive children channelled
into treatment and care. FSG members also received
nutritional information from the Ministry of Health and Child
Welfare nutrition officers, reportedly understood the importance of good nutrition choices and were seeking to provide
more nutritious food for their children.
In order to reinforce psychosocial support provided to the
children at the playcentres, our strategy has been to strengthen the capacity of family caregivers through FSGs, to have the
required skills and information to provide better care for their
children. Anecdotal evidence suggests that these playcentres
and the accompanying FSGs have provided an entry point for
HIV services for the caregivers of registered children and other
family members. While project reports indicate FSG activities
were successful at building the capacity of caregivers with
knowledge and skills to increase child health including HIV
care and support, such observations require more rigorous
study. Attention has now turned to the sustainability of the
playcentres and training in income generating activities for
the volunteers and carers, to reduce their own economic
vulnerability and support the playcentres.
Strengthen the capacity of the surrounding communities
supporting the playcentres, on HIV prevention, care and
support to children affected and infected by HIV
The continued community response and assistance in the
establishment and maintenance of the playcentres indicates
community responsibility and ownership of these centres.
5
Total children enrolled
in playcentres
697
HIV exposure status
unknown
364 (52.2%)
HIV tested
164 (45%)
HIV
positive
11 (6.7%)
No HIV test
200 (55%)
HIV
negative
123 (93.3%)
Enrolled in OI/ART
programme
CTX and ART where eligible
11 (100%)
HIV exposed
333 (47.8%)
HIV tested
246 (73.9%)
HIV
positive
63 (25.6%)
No HIV test
87 (26.1%)
HIV
negative
183 (74.4)
Enrolled in OI/ART
programme
CTX and ART where eligible
63 (100%)
Loss to follow up of OI/ART enrolled children
as of Sept. 2011
0
Figure 2.
Flowchart of playcentre children HIV exposed, tested, positive and treated.
The whole process of sensitization and mobilization has had a
ripple effect in disseminating knowledge on PMTCT throughout the communities. Communities have provided labour and
material contributions and have made bricks, built thatched
shelters, fenced grounds and donated food. There is a waiting
list for children to attend the centres. An initial cap of six
children per child-minder/group facilitator, that is 36 children
per centre, had been placed on the playcentres and demand
has already exceeded this with 697 children enrolled.
Limitation of the current study and indications for future
research
Systematic data on high quality community-based intervention studies to support the psychosocial and health needs of
children affected by HIV are lacking in the literature, an
acknowledged limitation of the present findings. Trends
identified through routine data collected during the playcentre pilot project indicate favourable health and psychosocial
outcomes for participating children, though data collection
was not undertaken with a view to developing evidence. This
limitation indicates the need for the replication of this model
within an intervention protocol for the purpose of providing
scientific evidence for impact upon specified outcome variables. Future research required includes capturing health,
development and psychosocial outcomes of participating
children and changes in health status, knowledge or practices
among their caregivers. Cost-effectiveness analyses of the
playcentre model in terms of established indicators such as
disability adjusted life years (DALY), quality adjusted life years
(QALY) and life years (LY) gained also present opportunities to
determine if this model is suitable for large-scale replication in
rural communities.
Conclusions
In three rural districts of Zimbabwe, this model of communitybased, community-run early childhood development playcentres has contributed to national efforts to improve the health
and psychosocial wellbeing of vulnerable children 5 years
and younger. By extending and complementing the PMTCT
programme from health centres into the community, OPHID
has addressed some of the currently experienced limitations
of providing follow-up services to HIV-exposed infants and
their families. Through the support of community-based
cadres, vulnerable children, including HIV-exposed infants
and their families are identified and channelled into community-based playcentres. Volunteers at the playcentres, aided
by professional Health Care Workers, monitor children’s
growth, ensure access to immunization services and facilitate
the referral of known HIV-exposed children and children of
unknown serostatus for HIV testing and any further HIV
medical care services as required. At the playcentres, all OVC
learn through play and benefit from nutrition supplements,
have access to health, other special needs services, birth
6
certificates and psychosocial support. These playcentres
provide rural communities with an opportunity to impact
on the future health and development of their youngest
members in a secure and supportive environment.
Even with a model of close, continuous care, not all
children could be tested for HIV. More research needs to be
done to evaluate barriers to counselling and testing of young
children and develop evidence for the impact of the
playcentre model on health, development and psychosocial
indicators. Finally, in view of the revised WHO 2010 PMTCT
Guidelines recommending extended ARV prophylaxis
throughout the breastfeeding period (option A), we are
extending the model to include provision for comprehensive
services for babies from birth to 2 years of age. With the
availability of early infant diagnosis in Zimbabwe, it is
important to support these mothers and their infants to
access comprehensive PMTCT services and to acquire knowledge on raising healthy, happy babies. To address the gap
between birth and 2 years, OPHID has recently started a
model of mother-baby groups attached to the playcentres to
tackle this omission, enrolling mothers during their pregnancy and in the first 2 years of the child’s life.
1
Organisation for Public Health Interventions and Development Trust, Milton
Park, Harare, Zimbabwe; 2Elizabeth Glaser Pediatric AIDS Foundation, Avondale, Harare, Zimbabwe
Competing interests
The authors declare that they have no competing interest.
DP made substantial contributions to the conception, design and supervision
of the project, analysis and interpretation of the data and drafted the
manuscript. PM was involved in the conception, design and coordination of
the project and acquisition of the data. TN was involved in the supervision of
the project and critically contributed to the article. DC contributed to the
conception, design and coordination of the project. KW provided editorial and
technical assistance with analysis, interpretation and presentation of the data.
BE was responsible for supervision of the project and critical appraisal of the
article.
Funding sources
This article was based on a project funded by UNICEF through the Elizabeth
Glaser Pediatric AIDS Foundation from 2009-2010. Additional funding to
maintain the playcentres in 2011 was provided by USAID through the Elizabeth
Glaser Pediatric AIDS Foundation.
References
1. Government of Zimbabwe, Ministry of Health and Child Welfare. National
Psychosocial Support Guidelines for Children living with HIV and AIDS, 2009.
Harare: MOHCW; 2009.
2. World Health Organisation. World Health Statistics 2008 [Internet]. 2008
[cited 2012 March 6]. Available from: http//www.who.int/whosis/whostat/EN_
WHS08_Table1_Mort.pdf
3. UNICEF. Social protection in East and Southern Africa: a framework and
strategy for UNICEF [Internet]. 2008 [cited 2012 March 6]. Available from:
http//www.unicef.org/socialpolicy/files/Social_Protection_Strategy(1).pdf
4. Chatterjee A, Tripathi S, Gass R, Hamunime N, Panha S, Kiyaga C, et al.
Implementing services for Early Infant Diagnosis (EID) of HIV: a comparative
descriptive analysis of national programs in four countries. BMC Public Health.
2011;11:553.
5. Ciaranello AL, Park JE, Ramirez-Avila L, Freedberg KA, Walensky RP, Leroy V.
Early infant HIV-1 diagnosis programs in resource-limited settings: opportunities for improved outcomes and more cost-effective interventions. BMC
Med. 2011;9:59.
6. Bahwere P, Piwoz E, Joshua MC, Sadler K, Grobler-Tanner CH, Guerrero S,
et al. Uptake of HIV testing and outcomes within a Community-based
Therapeutic Care (CTC) programme to treat severe acute malnutrition in
Malawi: a descriptive study. BMC Infect Dis. 2008;8:106.
7. Braun M, Kabue MM, McCollum ED, Ahmed S, Kim M, Aertker L, et al.
Inadequate coordination of maternal and infant HIV services detrimentally
affects early infant diagnosis outcomes in Lilongwe, Malawi. J Acquir Immune
Defic Syndr. 2011;56(5):e1228.
8. Donahue MC, Dube Q, Dow A, Umar E, Van Rie A. ‘‘They Have Already
Thrown Away Their Chicken’’: barriers affecting participation by HIV-infected
women in care and treatment programs for their infants in Blantyre, Malawi.
AIDS Care. 2012:17, iFirst. Epub ahead of print.
9. Nyandiko WM, Otieno-Nyunya B, Musick B, Bucher-Yiannoutsos S,
Akhaabi P, Lane K, et al. Outcomes of HIV-exposed children in western Kenya:
efficacy of prevention of mother to child transmission in a resourceconstrained setting. J Acquir Immune Defic Syndr. 2010;54(1):4250.
10. Schenk KD. Community interventions providing care and support to
orphans and vulnerable children: a review of evaluation evidence. AIDS Care.
2009;21(7):91842.
11. Gilborn L, Apicella L, Brakarsh J, Dube L, Jemison K, Kluckow M, et al.
Orphans and vulnerable youth in Bulawayo, Zimbabwe: an exploratory study of
psychosocial well-being and psychosocial support programs. Washington (DC):
Horizons Program/Population Council; 2006.
12. Schenk KD, Michaelis A, Sapiano TN, Brown L, Weiss E. Improving the lives
of vulnerable children: implications of horizons research among orphans and
other children affected by AIDS. Public Health Rep. 2010;125(2):32536.
13. Nyamukapa CA, Gregson S, Wambe M, Mushore P, Lopman B, Mupambireyi Z, et al. Causes and consequences of psychological distress among orphans
in eastern Zimbabwe. AIDS Care. 2010;22(8):98896.
14. Nyamukapa CA, Gregson S, Lopman B, Saito S, Watts HJ, Monasch R et al.
HIV-associated orphanhood and children’s psychosocial distress: theoretical
framework tested with data from Zimbabwe. Am J Public Health.
2008;98(1):13341. Epub 2007 Nov 29.
15. King E, De Silva M, Stein A, Patel V. Interventions for improving the
psychosocial well-being of children affected by HIV and AIDS. Cochrane
Database Syst Rev. 2009;(2):CD006733.
16. Government of Zimbabwe, Ministry of Health and Child Welfare. National
psychosocial support training manual for children living with HIV and AIDS,
2009. Harare: MOHCW; 2009.
17. Government of Zimbabwe, Ministry of Public Service, Labour and Social
Welfare. Zimbabwe’s programme of support to the national action plan (NAP)
for orphans and vulnerable children. Harare: MOHCW; 2008.
18. UNICEF. UNICEF Zimbabwe Statistics [Internet]. 2010 [cited 2012 March 6].
Available from: http://www.unicef.org/infobycountry/zimbabwe_statistics.html
19. US Agency for International Development (USAID). Child Status Index: a
tool for assessing the well-being of orphans and vulnerable children. USAID;
2009 [citde 2012 March 6]. Available from: www.ovcsupport.net/libsys/Admin/
d/DocumentHandler.ashx?id=791.
7
Dhlamini L et al. Journal of the International AIDS Society 2012, 15(Suppl 2):17391
Short report
Qualitative interviews with mentor mothers living with HIV:
potential impacts of role and coping strategies
Lebohang Dhlamini1, Lucia Knight§1, Heidi van Rooyen1, Alastair van Heerden1 and Mary Jane Rotheram-Borus2
§
Corresponding author: Lucia Knight, Human Sciences Research Council, PO Box 90, Msunduzi, Liberty Mall, 3200, Pietermaritzburg, South Africa. Tel: 27-31-2425622. ([email protected])
Abstract
Introduction: In South Africa where HIV prevalence is high, mentor mother programmes have been used to promote the health
and wellbeing of women enrolled in government programmes preventing vertical transmission. The Masihambisane Project
trained mentors to be educators and facilitators as ‘‘expert patients’’ in self-help groups. While this and other similar interventions demonstrate positive outcomes for mothers and their children, the long-term repercussions for mentors delivering
the intervention are seldom considered. This article explores the personal impact of being a mentor, the potentially traumatizing
effects of repeatedly sharing their experiences of living with HIV and the coping strategies they adopt.
Results: Towards the end of the Masihambisane intervention, 10 semi-structured qualitative interviews were conducted with
locally recruited mentors living with HIV and were thematically analysed. Mentors found the repeated telling of their stories a
painful reminder of adverse personal experiences. In some cases, retelling caused a physical reaction. Mentors relied on coping
strategies like taking breaks, writing their experiences down and debriefing sessions. Despite the difficulties associated with their
role, some mentors found being advisors and the group sessions therapeutic and empowering.
Conclusions: These findings indicate that the inclusion of peer mentors comes with certain responsibilities. While the mentors
were resilient and some found the experience therapeutic and empowering found creative ways to cope with secondary trauma,
the negative implications cannot be ignored. To effectively deliver a mentor-driven intervention to mothers enrolled in a
programme to prevent vertical transmission, the possibilities of secondary trauma should be considered and mentors provided
with ongoing counselling, training on coping skills and regular debriefing sessions.
Keywords: mentor mothers; expert patient; peer supporters; living with HIV.
Copyright: – 2012 Dhlamini L et al; licensee International AIDS Society. This is an open access article distributed under the terms of the Creative Commons
Introduction
South Africa has an estimated five million people living with
HIV, with an antenatal HIV prevalence of 29.4% amongst
pregnant women aged 15 to 49 years [1]. Several studies in
South Africa have used local women living with HIV as
mentors to support other women living with HIV enrolled
in programmes preventing vertical transmission [24]. These
studies report a range of positive psychological outcomes
for the women enrolled, including a reduction in feeling
alone and overwhelmed by their situation [4] and fewer
reports of symptoms of depression [2,3]. The focus of these
interventions and the reported outcomes are for the enrolled mothers. However, consideration must also be given
to the potential repercussions for the mentors who deliver
the interventions.
In the existing studies [24], mentors living with HIV are
tasked with running self-help groups, facilitating education
sessions and providing counselling to other women living with
HIV. Mentors are trained and equipped with the knowledge to
conduct self-help groups and, therefore, become what have
been termed ‘‘expert patients’’ [5]. Mentors not only manage
their condition but also draw on their training and lived
experience to support others and identify strategies for
sharing experiences and encouraging healing [6,7].
Whilst the mentors are cast in a key helping role, they are
also, by virtue of this role, at risk of experiencing secondary
trauma. Secondary trauma is the emotional disruptions felt
by those providing care or working closely with people who
have been traumatized [8]. Helpers are indirectly affected
as they experience similar emotional disruptions as those
experienced by their traumatized clients. The extent to which
a carer experiences secondary trauma tends to be compounded by their own history [5,9]. This paper explores the
personal impact of being a mentor and the potentially
traumatizing effects of repeatedly sharing their experiences
of living with HIV as a way of demonstrating challenges
of and managing living with HIV. The paper also looks at
the coping strategies adopted by mentors to mitigate these
effects.
Methods
Project Masihambisane was a mentor-mother vertical transmission intervention implemented in rural KwaZulu-Natal
South Africa, between 2008 and 2010. The aim of the
1
intervention was to improve the health and wellbeing of
pregnant women and their babies. Women living with HIV
and enrolled in the South African Department of Health’s
(DoH) programme to prevent vertical transmission were
provided with peer support and education by mentors,
trained women living with HIV [3,10]. Matched clinics offering
these services were selected, and four clinics were randomly
assigned as intervention clinics and four as control clinics.
At the intervention clinics, women were invited to attend four
antenatal and four postnatal small group sessions facilitated
by mentors. Women in the control clinics received standardof-care DoH services for the prevention of vertical transmission [10]. Group sessions covered issues such as disclosure,
HIV prevention, treatment adherence, family health, vertical transmission and coping with symptoms of anxiety and
depression [3].
The 10 black African isiZulu-speaking mentors who were
interviewed for this study were recruited at the intervention
clinics. All had previously tested positive for HIV. The mentors
were all from the local community and were aged between
22 and 35 years. All except two were single and eight of the
women had had at least one child and, therefore, had been
previously enrolled in the government’s vertical transmission
programme. Mentors were selected using the theory of
positive peer deviants [10]. That is, the mentors were chosen
because they were living positively with HIV and both they
and their children were flourishing. The women chosen
were positive role models with a history of community
engagement who were willing to use their experience to
help others.
Mentors underwent extensive formal training provided
by the research team on issues such as disclosure, counselling, communication skills and group facilitation [3,10]. In
addition, the mentors were educated about and equipped
with the skills to run group sessions. The mentors were paid
a stipend equivalent to the DoH’s community health workers
for their activities in the intervention clinics. Mentors were
responsible for leading the group sessions and conducting
individual counselling sessions with participants. To support
mentors in their role, monthly debriefing sessions were
provided by a counselling psychologist.
Towards the end of the intervention, semi-structured
qualitative interviews were conducted with the mentors in
order to understand their experience of their role. The
interviews dealt with the effects of repeatedly sharing their
HIV disclosure and testing experiences and the coping
strategies they drew on. Interviews were conducted in the
mentors’ first language isiZulu, audio-taped, transcribed and
translated into English for analysis and interpretation. The
transcribed interviews were coded by the first and second
authors, using themes defined by the research questions and
emerging from multiple coding iterations of the transcripts.
This analysis yielded observations of several patterns both
within and across the women’s experiences [9]. Informed
consent was obtained for all interviews. Ethical approval
was received from the Institutional Review Board of the
University of California, Los Angeles, and the Research
Ethics Committee of the Human Sciences Research Council,
South Africa.
Results
Current stories trigger painful memories
Mentors were trained to disclose their HIV status at each
session and encouraged to share their own experiences of
living with HIV. Most mentors found the repeated disclosures
and providing accounts of their stories painful. Equally
difficult was hearing their clients’ stories, as these often
triggered painful memories of their own sometimes traumatic histories. For example, the sessions reminded one
mentor of losing her baby to AIDS:
Tell[ing] them from session one to session eight that
I lost my child, it hurt me, as thoughts of my baby
came back (35-year-old woman).
In sharing her experience, another mentor spoke of being
reminded of her partner’s desertion after disclosing her
status to him. Others spoke about struggling to come to
terms with living with HIV and how clients’ situations
reminded them of these challenges and their unresolved
personal predicaments:
You see another person HIV-positive, having yourself
gone through that situation you feel a lot of pain
(30-year-old woman).
Physical and emotional reaction
In addition to clients’ stories triggering mentors’ memories,
some mentors found hearing clients’ stories traumatic and
distressing. This resulted in strong physical reactions in some
mentors. One mentor described having nightmares about
disclosing her status to her family. Others described experiencing shortness of breath, becoming intensely emotional
and crying during sessions:
I would feel sad and cry again, because she is telling
me about her problems (29-year-old woman).
These reactions were not always easy to control. A number of
mentors spoke about needing to suppress their reactions in
sessions to prevent negative consequences for the group:
You must not show that you are shocked, so I try to
calm down, but when [they have] gone . . . oh my
God (29-year-old woman).
One mentor mentioned how she sometimes felt like sleeping
after the sessions because she was so emotionally and
physically drained.
Healing and empowerment
Despite the fact that all mentors found the repeated
disclosures of their HIV status and personal histories painful,
a few viewed their role in positive terms. They felt that it
contributed to personal healing. Mentors mentioned that
they felt good about helping others in a similar predicament
and that the structure of the group provided an opportunity
for helping others as well as for self-development:
It builds me up to be able to tell someone else
about my situation, and be able to advise them that
they can also be successful if they do this and that
2
For these mentors, the group sessions were therapeutic:
I know that I shouldn’t concentrate on my story
[during sessions with mothers] but just being able to
talk about my status . . . it helps me a lot. (30-yearold woman).
or to pray. Others found talking to other people a helpful
coping strategy:
What causes [my stress] to gradually go down is the
fact that I talk about it. Maybe a person asks me,
‘‘What did you do when this was happening?’’ Then
telling them my story helps me a lot (35-year-old
woman).
The training they received coupled with their participation
in group sessions enabled them to deal better with their
own situations. One mentor recounted how working on the
project empowered her to deal with her own disclosure:
Another mentor spoke about writing her thoughts and
emotions in her diary:
. . . when I joined Masihambisane being in the
support group helped me a lot because I even
became able to tell my family (32-year-old woman).
Sometimes things flood back into my mind and I end
up writing down in my diary on my arrival at home
Some mentors also spoke about the value that employment
brought to them and their families and that employment as a
mentor gave them a sense of empowerment.
Coping strategies
Mentors intuitively developed various strategies to manage
the effects of their role both during and after sessions. The
coping mechanisms mentors adopted within the sessions
included drinking water to calm down or going outside to get
some air when they felt overwhelmed:
I will feel that tears are filling my eyes, but I’ll
have to hold them back so that the client does not
see the . . . my body gets all tense and I have a
headache . . . sometimes I cry. Sometimes I get
out and just want to be by myself, it does help me,
going outside sometimes if there is water I’ll drink
some. Then [the emotions] will slowly disappear
This was a way for mentors to fulfil their responsibilities
and also limit the disruption caused to their clients by their
own overwhelming emotions. The mentors were conscious
of making sure that their reaction did not make their clients
feel uncomfortable and therefore felt it was important to
conceal their emotions or not let the things being said in
the sessions affect them. When asked how she coped, one
mentor responded:
It is just by being courageous, being the one, who
comforts her by telling her that if things are this way
this is what you do. And to not allow a situation
where she is the one who sees tears from me,
because she is going to realize that this problem she
has is worse than mine (22-year-old woman).
Even in the group sessions, which were primarily a forum for
clients, mentors found support. The sessions helped the
mentors cope with their realities of living with HIV:
On a particular day when we are sitting as a
group I do talk, cry . . . because I, myself, do need
their support . . . because they also need mine
Some mentors also adopted strategies they found useful
to cope at the end of a session, such as creating the space
and time alone to think about and process the days’ events
Discussion
The findings from this qualitative study point to some of the
potential consequences of including mentors to lead self-help
groups and as ‘‘expert patients’’ in peer support interventions. Although the process was designed for the mentor to
support the client, we found that, similar to findings of a
programme in the UK, the sessions became a reciprocal
therapeutic space for some mentors [11]. In this study,
mentors were well trained and had first-hand experience
of living with HIV and had therefore become ‘‘experts’’ [5].
The knowledge and responsibility they were able to achieve
through their employment helped to make the mentors feel
empowered [5]. They also used the self-help group as a place
for healing and for self-development as well as a way of
helping others to do the same [6,7]. Despite the possible
positive repercussions, many of the mentors found their role
challenging and developed physical and emotional symptoms
that are suggestive of posttraumatic stress or secondary
trauma. These reactions may have been compounded by
the realities of living with HIV in a context where issues of
stigma, discrimination and lack of acceptance of HIV are still a
reality [12]. Mentors were conscious of the effect that their
emotional reactions may have for their clients and adopted
ways to suppress or cope with these to protect the members
of their groups. Mentors were innovative and resilient in
the coping strategies they adopted to manage the effects
of assisting others similar to themselves.
Our study highlights the potential complexity of these
mentors’ role and the possible consequences of secondary
trauma for their emotional and physical wellbeing [8,13].
These findings also suggest the need for further larger-scale
research into the impact of being a mentor.
This study has a number of limitations. No pre-intervention
assessment of the women was conducted, and despite all
mentors having known their HIV status for some time, this
duration was not recorded. Further studies would benefit
from collecting this information to assess whether it affects
mentors’ experiences. The study also includes only a small
sample. Despite limited generalizability, we argue that the
findings could have important implications for mentors
working in similar contexts. This study is exploratory and
the detailed nature of the analysis begins to provide us with
a depth of understanding of the mentor’s experiences not yet
offered elsewhere. The results of this study suggest that
there is definitely scope for further consideration of the role
3
of mentors in the delivery of a peer-based intervention such
as Masihambisane.
Conclusions
These findings show that including peer supporters or mentors
comes with certain responsibilities. While the mentors were
resilient and some found the experience therapeutic and
empowering and found creative ways to cope with secondary
trauma, the negative effects of their role cannot be ignored.
To effectively deliver a mentor-driven intervention for mothers
enrolled in a programme to prevent vertical transmission,
the possibilities of secondary trauma should be considered.
Mentors must be provided with ongoing counselling, training
in coping skills and regular debriefing sessions. Further research could consider mentors long-term experiences both
prior to and after involvement in an intervention. In addition,
further research could consider the feasibility of women living
with HIV taking on a similar role on a long-term basis and issues
such as retention and attrition.
1
Human Sciences Research Council, Sweetwaters, Pietermaritzburg,
South Africa; 2Department of Psychiatry, Semel Institute, UCLA, Los Angeles,
CA, USA
Competing interests
Lebohang Dhlamini took the lead on the conceptualization of the paper
and analysis of the data. She drafted an initial version of the paper. Lucia
Knight and Heidi van Rooyen helped in the conceptualization of the paper,
interpretation of the data and edited several drafts of the paper. Alastair van
Heerden and Mary Jane Rotheram-Borus reviewed and commented on the
final version of the paper. All authors have read and approved the final version.
Acknowledgements
The authors would like to thank Lungile Mkhize for conducting the interviews
and for her role during the intervention of mentoring and supervising the
mentors. We are grateful to all the mentors employed during the study and
especially those who were interviewed for this paper. Lastly, we thank Andile
Sibiya for transcribing and translating all the interviews.
References
1. National Department of Health. National antenatal sentinel HIV and syphilis
prevalence survey in South Africa 2010, Pretoria, National Department of
Health; 2011.
2. Futterman D, Shea J, Besser M, Stafford S, Desmond K, Comulada WS, et al.
Mamekhaya: a pilot study combining a cognitive-behavioral intervention
and mentor mothers with PMTCT services in South Africa. AIDS Care.
2010;22:1093100.
3. Richter L, Rotheram M, van Heerden A, Rochat T, Stein A, Tomlinson M,
et al. PMTCT outcomes for mothers living with HIV and their infants in
South Africa: A randomised clinic trial of HIV peer mentors. PLoS Medicine.
Submitted May 2012.
4. Teasdale CA, Besser MJ. Enhancing PMTCT programmes through psychosocial support and empowerment of women: the mothers2mothers model of
care. South Afr J HIV Med. 2008;9:604.
5. Tattersall RL. The expert patient: a new approach to chronic disease
management for the twenty-first century. Clin Med. 2002;2:2279.
6. Cassidy R. Global expectations and local practices: HIV support groups in the
Gambia. AIDS Care. 2010;22(Suppl 2):1598605.
7. Walch SE, Roetzer LM, Minnett TA. Support group participation among
persons with HIV: demographic characteristics and perceived barriers. AIDS
Care. 2006;18:2849.
8. Bell H. Strengths and secondary trauma in family violence. Soc Work.
2003;48:51322.
9. American Psychiatric Association. Diagnostic & statistical manual of mental
disorders IV-TR (4th ed-TR), Washington DC. 2000;42984.
10. Rotheram-Borus MJ, Richter L, Van Rooyen H, van Heerden A, Tomlinson
M, Stein A, et al. Project Masihambisane: a cluster randomised controlled trial
with peer mentors to improve outcomes for pregnant mothers living with HIV.
Trials. 2011;12:2.
11. Knudsen-Strong E. From pregnancy to baby and beyond: preliminary
findings from an evaluation of the pilot programme, London. The London
School of Economics and Political Science, MSc Health, Community and
Development; 2011.
12. Genberg BL, Hlavka Z, Konda KA, Maman S, Chariyalertsak S, Chingono A,
et al. A comparison of HIV/AIDS-related stigma in four countries: negative
attitudes and perceived acts of discrimination towards people living with HIV/
AIDS. Soc Sci Med. 2009;68:227987.
13. Lerias D, Byrne MK. Vicarious traumatization: symptoms and predictors.
Stress Health. 2003;19:12938.
4
Anderson G et al. Journal of the International AIDS Society 2012, 15(Suppl 2):17991
Commentary
Community voices: barriers and opportunities for programmes to
successfully prevent vertical transmission of HIV identified
through consultations among people living with HIV
Ginna Anderson§1, Georgina Caswell2, Olive Edwards3, Amy Hsieh1, Beri Hull1, Christoforos Mallouris4,
Naisiadet Mason5 and Christiana Nöstlinger6
§
Corresponding author: Ginna Anderson, International Community of Women Living with HIV, 740 15th St. NW, Washington, DC 2003, United States. Tel: +1 202 442
3438. ([email protected])
Abstract
Introduction: In 2010, two global networks of people living with HIV, the International Community of Women Living
with HIV (ICW Global) and the Global Network of People living with HIV (GNP ) were invited to review a draft strategic
framework for the global scale up of prevention of vertical transmission (PVT) through the primary prevention of HIV and the
prevention of unintended pregnancies among women living with HIV. In order to ensure recommendations were based on
expressed needs of people living with HIV, GNP and ICW Global undertook a consultation amongst people living with HIV
which highlighted both facilitators and barriers to prevention services. This commentary summarizes the results of that
consultation.
Discussion: The consultation was comprised of an online consultation (moderated chat-forum with 36 participants from
16 countries), an anonymous online e-survey (601 respondents from 58 countries), and focus-group discussions with people
living with HIV in Jamaica (27 participants). The consultation highlighted the discrepancies across regions with respect to access
to essential packages of PVT services. However, the consultation participants also identified common barriers to access, including
a lack of trustworthy sources of information, service providers’ attitudes, and gender-based violence. In addition, participant
responses revealed common facilitators of access, including quality counselling on reproductive choices, male involvement, and
decentralized services.
Conclusions: The consultation provided some understanding and insight into the participants’ experiences with and
recommendations for PVT strategies. Participants agreed that successful, comprehensive PVT programming require greater
efforts to both prevent primary HIV infection among young women and girls and, in particular, targeted efforts to ensure that
women living with HIV and their partners are supported to avoid unintended pregnancies and to have safe, healthy pregnancies
instead. In addition to providing the insights into prevention services discussed above, the consultation served as a valuable
example of the meaningful involvement of people living with HIV in programming and implementation to ensure that programs
are tailored to individuals’ needs and to circumvent rights abuses within those settings.
Keywords: women living with HIV; people living with HIV; primary prevention; unintended pregnancies; sexual and
reproductive health and rights; prevention of vertical transmission.
Received 19 December 2012; Revised 4 June 2012; Accepted 11 June 2012; Published 11 July 2012
Copyright: – 2012 Anderson G et al; licensee International AIDS Society. This is an open access article distributed under the terms of the Creative Commons
Introduction
In 2003, the United Nations adopted a comprehensive
approach to the prevention vertical transmission (PVT) of
HIV among infants and young children, consisting of the
following four essential elements [1]:
1. Primary prevention of HIV infection among women of
childbearing age;
2. Preventing unintended pregnancies among women
living with HIV;
3. Preventing HIV transmission from a woman living with
HIV to her infant;
4. Providing appropriate treatment, care and support
to mothers living with HIV and their children and
families.
To strengthen recognition, commitment, and programming
support on a global scale for the first two elements of
comprehensive PVT, the Interagency Task Team (IATT) for
Prevention and Treatment of HIV Infection in Pregnant
Women, Mothers, and their Children (a coalition of organizations engaged in global PVT work, convened by the United
Nations) developed a Draft Strategic Framework (2010
2015) for Primary Prevention of HIV and the Prevention of
1
Unintended Pregnancies in Women Living with HIV in the
Context of PMTCT (Draft Strategic Framework). Two global
networks of people living with HIV, the International Community of Women Living with HIV (ICW Global) and the
Global Network of People living with HIV (GNP ) were
invited to review the Draft Strategic Framework and provide
recommendations for its strengthening.
To ensure recommendations to the Strategic Framework
were based on expressed needs of people living with HIV,
GNP and ICW Global undertook a consultation funded by
UNFPA. This commentary summarizes the outcome of the
consultation and presents the views and experiences of
people living with HIV on barriers and opportunities in
relation to the prevention of vertical HIV transmission with a
special emphasis on the first two components of the global
PVT strategy, that is, primary HIV prevention and prevention
of unintended pregnancies.
Discussion
The consultation was comprised of an online consultation
(moderated chat-forum with 36 participants from 16 countries), an anonymous online e-survey (601 respondents from
58 countries), and focus-group discussions with people living
with HIV in Jamaica (27 participants).
Online technologies were chosen because they have the
advantage of collecting anonymous input globally in a
relatively short period of time. They also offer the advantage
of targeting difficult-to-reach populations, for example, due
to the persisting stigma related to HIV [2].
The consultation highlighted the discrepancies across
regions with respect to access to essential packages of PVT
services. However, the consultation participants identified
common barriers to access, including a lack of trustworthy
sources of information, service providers’ attitudes, and
gender-based violence. The responses also revealed common
facilitators of access, including quality counselling on reproductive choices, male involvement, and decentralized services.
For successful primary prevention efforts, participants
repeatedly emphasized the need for supportive HIV testing
and counselling, particularly in antenatal care (ANC) settings.
For the prevention of unintended pregnancies among
women living with HIV, participants felt programming should
focus on the provision of an ‘‘integrated package of service’’,
quality counselling and support for conception.
Barriers to accessing prevention of vertical
transmission programmes
The majority of e-survey participants reported that an
essential package of prevention services was available in
their countries: voluntary HIV counselling and testing,
information on family planning options and maternal health,
provision of condoms and other contraceptives, and treatment and care for sexually transmitted infections. However,
there was clear variation by region and challenges in
accessing services despite availability. From the perspective
of participants, the reasons for the difference in availability
included: uneven geographical distribution of services within
countries (service concentration in urban areas and undercoverage in rural areas), socio-cultural factors, and the
absence of a supportive legal and policy environment. In
addition, participants consistently noted that users of existing
programmes were challenged in accessing services due to
cost issues and travel time to facilities.
The Jamaican focus group discussions revealed substantial
knowledge gaps, even though at least two-thirds of the
women had participated in a prevention programme at some
point. Many were not familiar with how programmes were
actually rolled-out, and few were able to describe correctly
modes of vertical HIV transmission or how prevention of such
transmission occurs. This was largely attributed to healthcare
workers spending insufficient time to educate their clients.
Participants described PVT programmes that followed different guidelines and used different models, which resulted
in variations in quality as well as confusion amongst PVT
programme recipients of what was prescribed practice
according to adopted guidelines. Participants reported that
sexuality and contraceptive options were not discussed on a
routine basis. Consequently women felt rarely able to make
informed decisions about their sex lives, with respect to
primary prevention and prevention of unwanted pregnancy.
Additionally, some women reported that they were dissuaded from even the consideration of having children and
some were forcibly sterilized.
In the e-consultation, perceptions that participants and
peer women living with HIV had insufficient PVT knowledge
were partly attributed to conflicting messages delivered by
service providers, for instance, regarding advice on breastfeeding. Participants felt that information from internet
sources and second-hand knowledge of HIV and reproductive
health often led to misinformation within communities. The
participants emphasized a demand for trustworthy sources of
information and stated that clinics, providers, state-sponsored
public health messaging, and trained peers are examples
of such sources currently available. Providers were generally
seen as an important yet under-utilized primary source
of information. Participants recommended not only improving
oral communications, but producing take-home leaflets in
local languages and using simple plain images to allow women
to share information with their partners. Support groups
were also mentioned as trustworthy sources of information
and referral systems, while at the same time providing
psychosocial support and ongoing support for health and
wellbeing.
Among the e-survey respondents, a striking two-thirds had
experienced stigma in the healthcare settings with equal
gender distribution. Healthcare workers’ attitude towards
people living with HIV was identified as the single most
important barrier to accessing PVT services. Healthcare
worker’s negative attitudes were also perceived as threatening safe conception by more than half of respondents, both
men and women, who felt that women living with HIV and
their partners did not have enough support to conceive
safely. In the e-survey, one fifth of participants, men and
women, reported that they had been pressured by a
healthcare worker to take a sexual and reproductive health
(SRH) decision at least once, and around one in eight
participants reported that they had been pressured more
often. This included calls to abstain from sex, undergo tubal
2
ligation or hysterectomy, have an abortion, and/or use a
condom without access to any other family planning option.
One respondent reported having been refused assistance at
her delivery. Postings in the e-consultation described situations in which individuals had lost trust in providers and
feared to visit services again because of providers’ stigmatizing attitudes.
A consistent finding across all consultations related
to breaches of confidentiality. Over half of all e-survey
respondents reported that their right to keep health
information confidential had been violated at least once.
Participants in the e-consultation and focus group discussions
echoed reports of these violations.
Across all consultations, gender-based violence emerged
as a barrier to accessing PVT services. Less than half of the
male and female e-survey participants believed that women
in their countries could assert the right to be free from sexual
pressure or violence. Participants viewed the threat of
violence as a barrier to women disclosing their HIV status
to partners and women accessing voluntary counselling and
testing (VCT) and family planning services. Women fearing
violence were also believed to be less able to exert control
over their fertility and to negotiate safer sex. In addition,
it was recognized that women who knew their status and
feared disclosure could not ask for partner support to access
HIV-specific prenatal care, they were seen as less likely to
adhere to antiretroviral medication, and as more likely to
resort to mixed feeding practices to avoid disclosure.
Participants from the e-consultation agreed that counselling
should avoid inappropriately pressuring a woman to disclose
to her partner and that healthcare workers should receive
training to be able to recognize the signs of potential
violence. Such training should also increase providers’ ability
to identify the role that violence or the threat of violence
plays in women’s decision-taking.
Emerging opportunities to improve access to
and services for PVT
Participants across the consultations emphasized that peer
counsellors and support groups played a vital role in
successful PVT and in maximizing outcomes for couples and
families living with HIV. Peer support groups and networks of
people living with HIV were perceived as safe spaces to
discuss SRH experiences and choices. Such spaces were seen
as important for individuals to feel connected and valued.
About half of the e-survey participants overall were satisfied
or extremely satisfied with the quality of the PVT services they
had received. However, the perceived quality of counselling
differed across services provided: While participants in the
e-survey mostly felt that the quality of post-test and family
planning counselling was average, the quality of counselling
support to conceive safely was rated lower.
We also found differences across regions with respect to
overall satisfaction with the quality of counselling, with
African participants being generally more satisfied than
participants from other regions. This was most pronounced
with respect to HIV-test counselling. One explanation for
these differences could be that in the African region com-
paratively more community-based organizations provide
counselling for HIV-testing.
Qualitative enquiry indicated that participants felt that
counselling often was rushed while noting the importance of
quality counselling in improving the individual’s understanding of their own health and acceptance of their diagnosis.
These echo WHO findings that supportive counselling preand post-HIV testing increases understanding of HIV, decreases trauma, and increases adherence to medication and
awareness [3]. Participants recommended that professional
counselling should provide accurate and non-judgmental
information and should be complemented with peer oneon-one counselling and group support.
During the e-consultation, participants also stressed the
need for careful selection of testing venues and culturally
appropriate counselling. Service providers’ judgmental attitudes were identified as the main factor for low quality of
counselling. Participants stressed that, as newly diagnosed
individuals, they had needed time to process the information
provided during counselling, which often was not possible
because sessions were rushed. Participants also stressed the
importance of peer-to-peer counselling by women living with
HIV. They recommended that providers should at a minimum
be able to link women with peer support groups, and should
engage peer counsellors in health facilities wherever feasible.
Where health facility staff members were often pressed for
time, supportive peers and support groups were described as
being able to invest more time and have richer sessions by
sharing personal insight and experience, in addition to basic
information.
Counselling on family planning and safe conception
Overall, women living with HIV participating in this consultation felt they did not receive sufficient counselling on SRH
issues. Their SRH aspirations, sexuality, and contraceptive
options were not routinely discussed with service providers.
Although many participants in the e-survey reported receiving condoms, the shortage in female condom provision was
noted.
The focus group discussions in Jamaica revealed that the
lack of counselling around SRH had resulted in unintended
pregnancies and women participants reported feeling left
alone and unsupported when confronted with an unintended
pregnancy. The majority of female focus group participants
indicated that the only safe contraceptive option under their
control and available to them as women living with HIV was
tubal ligation. Among e-survey participants, less than a third
had received counselling on safe conception; however, more
than half of those who received counselling were extremely
satisfied with these services.
Participants’ consistent emphasis on the importance of
quality counselling to understand their own HIV-positive
diagnosis, SRH choices, and PVT echoed a 2010 report from
the Kenyan National Network for Empowerment of People
Living with HIV. They reported an average of only 15-minute
counselling sessions for people living with HIV post-diagnosis,
and that much of the PVT specific counselling occurred in
groups where participants reported the information was
harder to digest [4].
3
Participants in the various parts of the consultation
process pointed to the need for greater involvement of men
in PVT. Low male involvement was mainly seen as a
consequence of men being discouraged from participating
in ANC services.
About two-thirds of the e-survey participants reported
that programmes to encourage male involvement in PVT
services were available in their countries. Barriers for male
involvement were identified in more detail: stigma and
discrimination (nearly half of men and women); men’s
attitude that SRH is a woman’s issue, endorsed by more
women (just over half) than men (nearly a third); societal or
community perception that SRH services are designed for
women only (about a third), and traditional and cultural
norms (just under a third). An additional third of respondents
cited lack of programs for sero-different couples as a barrier
to male involvement. Focus group participants from Jamaica
emphasized that many men relied on their partners for
information about their own SRH, which could lead to
misinformation about the risk of HIV transmission to the
infant or to a negative partner.
The consultations also revealed a gap in reproductive
health services and information available to men living with
HIV. Participants agreed that efforts to support women and
couples to make informed SRH choices should promote
men’s active involvement. In particular, the focus group
participants felt that there was too little counselling available
for men who are in HIV-discordant relationships with women
who are living with HIV and their needs should be considered
within programming.
When asked for solutions to barriers in accessing services,
participants in the e-survey indicated the importance of the
decentralization of services, for reasons including lowered
transportation costs and less time required for facility visits.
However, they pointed out that in decentralized community
settings it is even more important to respect the right to keep
one’s HIV status, or other health-related information, confidential, and that confidentiality had to be ingrained into
both the healthcare culture and in the culture of the
community. This is relevant in the light of our quantitative
finding that more than half of the survey participants had
experienced some violation of confidentiality in healthcare
settings.
Participants in the consultations were self-selected convenience samples. Therefore, their views do not represent
the overall population of people living with HIV. The main
purpose of the consultation was to obtain feedback for the
PVT strategy. Nonetheless, the consultations covered all
regions and revealed consistent experiences.
Conclusions
The consultation provided some understanding and insight
into the participants’ experiences with and recommendations for PVT strategies. Participants agreed that successful,
comprehensive PVT programming require greater efforts to
both prevent primary HIV infection among young women
and girls and, in particular, targeted efforts to ensure that
women living with HIV and their partners are supported to
avoid unintended pregnancies and to have safe, healthy
pregnancies instead. Both of these two primary steps in
reducing the number of new infections among children
require increased SRH education and services for women
and girls before they are living with HIV, get pregnant, or
both. In addition, several themes emerged consistently
amongst participants. Important recommendations given
by the participants included, but were not limited to, the
need for capacity building and adequate training among
service providers to support people living with HIV in
asserting their right to sexual and reproductive health,
including quality counselling for safe conception and
contraception; implementation of supportive services such
as VCT and peer-to-peer support; encouraging male involvement in all aspects of services to prevent vertical transmission; greater emphasis on prevention of gender-based
violence; and support for disclosure in HIV-discordant
relationships. Finally, the consultation serves as a valuable
example of the meaningful involvement of people living
with HIV in programming and implementation to ensure
that programs are tailored to individuals’ needs and to
circumvent rights abuses within those settings.
1
International Community of Women Living with HIV, Washington, DC,
United States; 2Global Network of People Living with HIV, Cape Town,
South Africa; 3Jamaica Community of Positive Women, Kingston,
Jamaica; 4Independent Consultant, Amsterdam, The Netherlands; 5Independent Consultant, Nairobi, Kenya; 6Institute of Tropical Medicine, Antwerp
Belgium
Competing interests
GA, GC and CN contributed equally to the manuscript writing, based on an
initial draft by the GA. NM was responsible for the e-consultation (moderation,
data-analysis, and final report writing). OE was responsible for the FGD
research (facilitation, data analysis and report writing). All other authors
contributed to revisions of the paper, which was finally approved by all
authors.
Abbreviations
ANC, antenatal care; GNP, Global Network of People living with HIV; ICW
Global, International Community of Women Living with HIV; PVT, prevention
vertical transmission; SRH, sexual and reproductive health; VCT, voluntary
counselling and testing.
Acknowledgements
We would like to thank all people living with HIV who took part in the
consultations and who shared with us their experiences and perspectives
about services to prevent vertical transmission and to support mothers to stay
well and alive. We are grateful to NAM for hosting the e-consultation and
e-survey.
Funding sources
We would like to thank the UNFPA for their financial support for the
consultations with people living with HIV.
References
1. UNICEF/WHO/Inter-agency Task Team on Prevention of HIV Infection in
Pregnant Women, Mothers and their Children. Guidance on global scale-up of
the prevention of mother to child transmission of HIV: towards universal
access for women, infants and young children and eliminating HIV and AIDS
among children. 2007. accessed 2012 June 21. Available from: http://www.
who.int/hiv/pub/mtct/pmtct_scaleup2007/en/index.html
4
2. Wright KB. Researching internet-based populations: advantages and
disadvantages of online surveys, online questionnaires authoring software
packages, and web surveys. J Comput Mediated Commun. 2005;10(3), article
11. accessed 2012 June 21. Available from: http://jcmc.indiana.edu/vol10/
issue3/wright.html
3. WHO. Reproductive choices and family planning for people living with
HIV: counselling tool. 2007. accessed 2012 June 21. Available from: http://
www.who.int/reproductivehealth/publications/family_planning/9241595132/
en/index.html
4. NEPHAK. Advancing the sexual and reproductive health and human rights of
people living with HIV: the uptake of PMTCT by people living with HIV in Kenya.
2010 Jan. accessed 2012 June 21. Available from: http://www.gnpplus.net/
images/stories/SRHR/20100920_SRHR_Kenya_ONLINE.pdf
5
Busza J et al. Journal of the International AIDS Society 2012, 15(Suppl 2):17373
Research article
Community-based approaches for prevention of mother to child
transmission in resource-poor settings: a social ecological review
Joanna Busza§,1, Damilola Walker2, Alana Hairston2, Alicia Gable2, Christian Pitter2, Stephen Lee2, Leila Katirayi2,
Rogers Simiyu3 and Daphne Mpofu4
§
Corresponding author: Joanna Busza, Department of Population Studies, London School of Hygiene & Tropical Medicine, Keppel Street, London WC1E 7HT, UK.
Tel: 44 (0)207 299 4619. ([email protected])
Abstract
Introduction: Numerous barriers to optimal uptake of prevention of mother to child transmission (PMTCT) services occur at
community level (i.e., outside the healthcare setting). To achieve elimination of paediatric HIV, therefore, interventions must also
work within communities to address these barriers and increase service use and need to be informed by evidence. This paper
reviews community-based approaches that have been used in resource-limited settings to increase rates of PMTCT enrolment,
retention in care and successful treatment outcomes. It aims to identify which interventions work, why they may do so and what
knowledge gaps remain.
Methods: First, we identified barriers to PMTCT that originate outside the health system. These were used to construct a social
ecological framework categorizing barriers to PMTCT into the following levels of influence: individual, peer and family,
community and sociocultural. We then used this conceptual framework to guide a review of the literature on community-based
approaches, defined as interventions delivered outside of formal health settings, with the goal of increasing uptake, retention,
adherence and positive psychosocial outcomes in PMTCT programmes in resource-poor countries.
Results: Our review found evidence of effectiveness of strategies targeting individuals and peer/family levels (e.g., providing
household HIV testing and training peer counsellors to support exclusive breastfeeding) and at community level (e.g.,
participatory women’s groups and home-based care to support adherence and retention). Evidence is more limited for complex
interventions combining multiple strategies across different ecological levels. There is often little information describing
implementation; and approaches such as ‘‘community mobilization’’ remain poorly defined.
Conclusions: Evidence from existing community approaches can be adapted for use in planning PMTCT. However, for successful
replication of evidence-based interventions to occur, comprehensive process evaluations are needed to elucidate the pathways
through which specific interventions achieve desired PMTCT outcomes. A social ecological framework can help analyze the
complex interplay of facilitators and barriers to PMTCT service uptake in each context, thus helping to inform selection of locally
relevant community-based interventions.
Keywords: PMTCT; community approaches; retention in care; social ecological framework.
Copyright: – 2012 Busza J et al; licensee International AIDS Society. This is an open access article distributed under the terms of the Creative Commons Attribution
is properly cited.
Introduction
Elimination of vertical transmission of HIV is a global priority,
yet progress remains marred by severe disparities across
regions. While it is almost a reality in developed country
settings, in many resource-poor settings, only an estimated
15% to 30% of eligible women complete the prevention of
mother to child transmission (PMTCT) cascade [1]. Weak
health systems, unreliable infrastructure, breakdowns in
supply chains and lack of health staff contribute to insufficient service coverage, but it is increasingly clear that many
barriers to achieving universal access for PMTCT occur
outside of formal health services [2].
Each setting will have its own specific mix of barriers to
PMTCT uptake, adherence and retention that reflect
prevailing behavioural norms, cultural beliefs and the policy
environment [3]. Understanding context-specific barriers is
the first step to addressing them, followed by design of
interventions that are informed by the evidence base yet
tailored to each setting. This paper presents work commissioned by the Elizabeth Glaser Pediatric AIDS Foundation
(EGPAF) that aimed to identify and synthesize research
findings on community-based approaches used in developing country settings to overcome barriers to PMTCT
enrolment, retention and successful outcomes. The goal
was to identify which interventions work, why they may do
so and what knowledge gaps remain, focussing on the
following four priority outcomes within the EGPAF Community Initiative:
1. Increased uptake of HIV care and treatment services among pregnant women and vertically infected
children;
1
2. Improved retention of individuals enrolled in prevention for vertical transmission and care and treatment
programmes;
3. Enhanced adherence of pregnant and lactating women,
their partners and children to ARV prophylaxis and/
or antiretroviral treatment (ART) and/or other care
regimens;
4. Strengthened psychosocial wellbeing of pregnant and
lactating women and children enrolled in care and
treatment programmes.
Barriers to PMTCT uptake and retention
The four priority outcomes indicate progress along a treatment continuum or ‘‘cascade,’’ commonly used in the
literature to depict an individual’s trajectory from before
HIV diagnosis, through each stage of successful enrolment in
treatment and care, to measurable improvements in physical
and mental health (Fig. 1) [46]. Due to barriers between
each stage, a steady reduction occurs in the successful
achievement of each successive step [7]. The treatment
cascade can be made specific to PMTCT by defining each
stage to reflect WHO programmatic guidelines.
Losses at each stage have been well-documented, and as
suggested by the concept of a cascade, a consistently
diminishing proportion of people transition between each
step [7]. There is now an extensive literature on the barriers
faced along the cascade, including in developing country
settings due to rapid growth in provision of ART in recent
years [8,9]. This section summarizes some of the most
commonly cited barriers to set the backdrop to our review
of intervention approaches used to overcome them.
As studies documenting barriers specific to preventing
vertical transmission are limited, lessons can be drawn from
related programmes, such as HIV counselling and treatment
(HCT), general provision of ARV and efforts to improve rates
of skilled attendance at delivery (for all women, regardless of
HIV status). The same barriers can operate at more than one
stage of the cascade and may interact or reinforce each other
at different times, depending on an individual’s evolving
circumstances, so that even if a person is able to take up
treatment early on, she/he may find it difficult to maintain
levels of retention and treatment compliance.
The identified barriers are as follows:
Risk perception: While HIV-related knowledge is now
widespread, individuals need to perceive themselves to be
at risk to seek HCT. Widespread association of HIV with
promiscuity and illicit sex (i.e., with sex workers or extramarital partners) creates a false sense of security for some.
Women in monogamous marriages, for example, may consider themselves at low risk [10] and may not present for
testing early enough in a pregnancy for optimal initiation of
PMTCT.
Motivation/self-efficacy: Even when pregnant women are
concerned about their status, they may lack motivation or
Awareness
Figure 1.
Testing
Diagnosis
self-efficacy to undergo testing, particularly if they need to
make complicated logistical arrangements or explain their
absence from home. Fear of receiving a positive result has
been found to be a disincentive to HIV testing during
pregnancy [11].
Health status: Poor mental and physical health also affect
care-seeking. Depression has been linked to lower ARV
adherence [12,13] while episodes of ill-health compromise
ability to maintain appointments [14].
Family relationships: Household inequities in access to
resources can mean women rely on others to decide whether
or not they initiate PMTCT [15,16]. Male partners play a
significant role; some women refuse HCT or do not collect
their results, fearing partner disapproval [2,17]. Threats of
intimate partner violence (IPV) also reduce enrolment in
PMTCT [18] and studies have shown that women living with
HIV can experience higher levels of IPV than others [19].
Where male partners are involved in HIV testing and
antenatal care, on the other hand, women are statistically
more likely to accept ARV prophylaxis [2022], deliver in a
facility [23] and attend follow-up care [24].
Disclosure of HIV status: Pregnant women’s disclosure to
partners is positively associated with service use, while those
who keep their status secret find it challenging to store and
take medications [25]. Disclosure to partners also makes it
more likely that HIV-positive mothers will follow infant
feeding recommendations [26].
Social support: Anticipating and receiving social support
proves important for programme retention and is associated
with drug adherence [27,28], while pressure from family
members, particularly mothers and mothers-in-law, discourages HIV-positive women from departing from traditional breastfeeding and weaning patterns [29,30].
Travel: Distance to facilities and cost of transportation
affect testing, collection of results and health-seeking
behaviours [31].
HIV stigma: A five-country comparative study found a
statistically significant relationship between perceived stigma
and neglecting to take all prescribed pills [32]. Several other
reviews of barriers to treatment [27,33,34] confirm the
importance of anticipated stigma, as well as perceptions of
poor service quality (i.e., unfriendly staff, long waiting times
and fear of stock-outs).
Social networks: Qualitative studies examining adherence
in Botswana and Tanzania found that, when clients do not
have strong social networks in the community, motivation to
remain in treatment is reduced [35,36].
Health and religious beliefs: Prevailing norms and traditional world views shape how people engage with services.
If HIV is believed to result from bewitchment or spiritual
forces, alternative treatments may be sought [37,38].
Traditions related to pregnancy care, delivery and
breastfeeding interact with advice received from health
Treatment
initiation
Adherence &
Follow-Up
Clinical &
Psychosocial
outcomes
Basic HIV treatment cascade.
2
professionals, affecting willingness to comply with PMTCT
requirements [3941].
Gender roles: Accepted power dynamics between men and
women determine how scarce resources are allocated and
often do not prioritize women’s health. Gender norms also
affect male partners’ behaviour, and expectations of male
and female responsibilities pose barriers to male involvement
in pregnancy and infant care [42,43].
Policy environment: Provision of social welfare or insurance
schemes, health systems’ functioning and a country’s economic and political stability will all affect service use and
health outcomes across the continuum [44,45].
Although not an exhaustive list, the barriers summarized
above were felt to capture the majority of challenges
confronted by on-the-ground PMTCT programmes, such as
those offered by EGPAF and its partner organizations.
Theoretical approach
Health outcomes are increasingly recognized as being shaped
less by individual behaviour and more by the wider environments in which people live and make choices, influenced by
family and peers, local beliefs and values, cultural norms and
practices and political and economic circumstances [4649].
The use of social ecological frameworks illustrates interrelationships between proximate and distal determinants of
health [5053] and have been found useful in understanding
HIV treatment adherence and programme retention [6,54].
They demonstrate the way in which an individual’s behaviours and health outcomes are nested within different levels
of social organization, visually depicted as overlapping
concentric circles, through which pathways of influence can
take multiple routes [50,51,55].
Social ecological framework for barriers to PMTCT
Figure 2 illustrates the social ecological framework that we
developed to guide our literature review, in keeping with
recent approaches used to identify and synthesize available
evidence driven by theoretical models rather than specific
research questions [56,57]. Each of the barriers to seeking,
obtaining and remaining in PMTCT care, as summarized
previously, has been situated at the level of social influence
where it is most likely to operate. Individual pregnant women
remain at the core of the framework, but their choices are
embedded within multiple layers [58].
We used this framework to develop our review strategy for
identifying community-based approaches implemented in
developing countries to address one or more barriers along
the PMTCT care continuum. Similar conceptually driven
reviews have been conducted to understand determinants
of access to services for sexual and reproductive health
[59,60]. Our aim was to consider interventions at each level,
although we chose to focus on the three middle circles of the
framework (peer and family influences, community context
and the sociocultural environment) as these seemed most
amenable to being addressed through existing partnerships
between biomedical service providers and civil society
organizations, yet went beyond activities targeted at individual knowledge, attitudes and behaviours.
Community-based approaches
Extensive consultation with EGPAF staff throughout the
organization, particularly in country-level programmes, as
well as with other stakeholders, for example, partner
institutions, civil society organizations, researchers in the
field of paediatric HIV/AIDS care and representatives from
donor agencies, led to adoption of the following working
definition of community-based approaches to PMTCT: strategies and interventions to improve health behaviour and
outcomes that are delivered outside of formal health settings
including primary, secondary and tertiary medical facilities.
These could have a range of aims (e.g., increasing contact
with individuals or empowering whole communities) but
needed to explicitly target community members, their local
civil or traditional authorities/leaders or traditional health
providers outside the formal health sector. There was some
ambiguity surrounding interventions where clinical services
expanded to provide outreach, support or non-medical
assistance (such as food supplementation) into the community. We decided to define activities delivered outside
facilities as ‘‘community-based’’ regardless of how they
were administered but not those where community members had to attend a clinic or health centre in order to receive
the additional support.
Methods
As our interests covered four broad health outcomes and a
wide range of barriers to achieving them, we considered a
systematic literature review inappropriate to our needs.
Instead, we developed a theory-driven search strategy guided
by our social ecological framework to identify and synthesize
up-to-date evidence on community-based interventions that
work to increase uptake, retention, adherence and positive
psychosocial outcomes in PMTCT programmes and in other
areas of public health with direct relevance to PMTCT.
A series of literature searches was conducted using
databases including PubMed, Medline, Web of Science,
ClinicalTrials.gov and the Cochrane collection. Each search
was guided by the social constructs in the social ecological
framework and the review’s four thematic areas. Primary
search terms included HIV treatment, ART, PMTCT, retention,
adherence, combined with community, intervention and
evaluation. A matrix of secondary key terms was established
for different outcomes along the care cascade (related to
testing, enrolment, initiation, follow-up and psychosocial
wellbeing) and their known determinants (social support,
stigma and delivery practices). For example, the search for
interventions to improve HIV testing rates among pregnant
women utilized Boolean combinations of full, abbreviated
and truncated versions of the following terms: HCT, VCT, PITC,
HIV testing, antenatal care, prenatal care, uptake, PMTCT,
intervention, evaluation, operations research and systematic
review.
As agreed with EGPAF in advance, studies were included if
they were published through a peer-reviewed process and
available from scientific journals, databases of trial protocols
or systematic reviews and internet-based reports from
multilateral research or policy-setting institutions (e.g.,
WHO, research consortia and international task forces).
3
Legal and Policy
Social Welfare &
Social Cultural
Environment
Insurance
Structures
Delivery &
Breastfeeding
Health Beliefs
Practices
Religion
Perceived
Community
Context
Care Quality
Cohesion &
Gender
Empowerment
Norms
Social
Distance to
Networks
Peer & Family
Services
Influences
Stigma
Partner
Communication
Involvement
Access to
Resources
& Disclosure
Individual
Risk Perception
Support
Self efficacy
ART Drug Supply
Motivation
Mental Health
Physical Health
Figure 2.
Health Systems
& Infrastructure
Social ecological framework for determinants of uptake, adherence and retention in PMTCT.
A start date of 2000 was applied to reflect the lack of prior
availability of routine ART provision in most developing
country settings (particularly in sub-Saharan Africa). September 2011 was the last month during which papers could have
been published online to have been included in this review.
Searches prioritized studies on implementation of PMTCT
programmes; but where there was scant evidence, evaluations of community-based approaches from the field of HIV/
AIDS treatment more generally, as well as examples from
other related health conditions, were included. Examples
include the use of women’s groups and community mobilization to reduce maternal and neonatal mortality, provision of
conditional cash transfers to increase facility-based deliveries
and peer counselling to extend periods of exclusive breastfeeding. In these cases, the cut-off year of 2000 did not apply.
Both quantitative and qualitative studies were included,
although the emphasis was on identifying existing systematic
and narrative reviews, and studies with rigorous evaluation
designs prioritized in the following order: randomized
controlled trials (RCTs), quasi-experimental designs, prospective cohort studies with historical controls and before-after
comparisons without controls but with multiple-point timeseries data to demonstrate trend [61,62]. Papers that were
solely descriptive were not included.
Analysis consisted of reading eligible studies and determining which level of the social ecological framework the
interventions targeted and subsequently extracting informa-
tion on how the described intervention attempted to
facilitate uptake or reduce barriers to retention in care.
Interventions were then grouped according to shared
components or similarities of approach within each of the
three community-based levels. Searches continued until
‘‘theoretical saturation’’ was achieved for each of the barriers
included in the social ecological framework. This means that,
if existing reviews, meta-analyses or rigorously designed
evaluation studies were available for a particular barrier,
these were reviewed and their findings synthesized, with no
subsequent effort to locate weaker study designs when no
new findings emerged. If, however, there were barriers on
which little research has been conducted, additional search
terms were added and attempts made to identify studies
with at least a ‘‘before-after’’ comparison or historical
controls in order to fully populate the framework.
Results
Findings are presented by the level of the social ecological
framework of barriers that each community-based intervention attempts to overcome. Where an intervention works to
address more than one social barrier to uptake and retention
in care, such as in multilevel programmes, it is classified at
the highest level of social influence targeted. Community
health workers (CHWs), for example, may spend much of
their time visiting households and working with family
members to support health-seeking and adherence, but as
4
they are also often tasked with strengthening support
networks, empowering groups and disseminating healthrelated practices at community level, they are described in
the section on community context.
Family and peer level
There has been an increase in ‘‘family centred’’ PMTCT
programmes, based on the observation that HIV is experienced as a family illness and all members can be affected
physically, emotionally and economically [63]. Activities
include offering HCT and treatment to partners and other
family members alongside pregnant women, involving male
partners in antenatal care and breastfeeding guidance, and
peer counselling for HIV-positive pregnant women. These
interventions aim to increase risk perception and awareness
of HIV status, catalyze positive attitudes among male
partners and increase social support for PMTCT.
Two models for community-based HCT have been evaluated: (1) house-to-house testing and (2) mobile testing sites.
A cluster RCT in Uganda comparing home-based and clinic
testing [64] found 93% of community members agreed to
test in home sites, and 54.6% of HIV infections were
identified compared to 27.3% in villages with clinic-based
HCT. Another RCT in Tanzania, Zimbabwe and Thailand
analyzed the effect of providing HIV testing through mobile
testing outlets on testing uptake [65]. After 3 years, the
number of people receiving their first HIV test was three
times higher in intervention over control sites in Thailand,
ten times higher in Zimbabwe and four times higher in
Tanzania. However, pregnant women were more likely to be
diagnosed in fixed-site clinics during antenatal appointments,
making community-based testing less effective for identifying
additional pregnant women, although it seems to be
successful for recruiting higher-risk and low-income community members [66].
Involving male partners in pregnancy care is based on
evidence from studies showing associations between HIVpositive pregnant women’s progression through the treatment cascade and their male partners’ awareness, support
and participation [67]. Partner involvement is hypothesized
to strengthen communication, disclosure and support between spouses. Men are invited to HCT alongside their
partners, provided with couple counselling and given information on PMTCT and infant feeding. Two literature
reviews have considered effectiveness of these interventions.
The first found a strong association between spousal
communication and men’s acceptance of HCT, and furthermore, when male partners test for HIV, pregnant women are
more likely to accept PMTCT prophylaxis and adhere to
breastfeeding guidance. Most studies were cross-sectional or
prospective cohorts, thus results could be confounded by
partnership characteristics (e.g., couples with good spousal
communication are likely to differ in several ways that might
affect health-seeking behaviour) [63]. The second review [67]
concluded that issuing letters of invitation to men for couple
testing, targeting men with community-based education on
HCT and using mass media to publicize couple testing are all
independently associated with improved PMTCT uptake.
Recently, two RCTs have tested methods to increase male
engagement in their partner’s treatment during pregnancy,
delivery and during follow-up. In South Africa, 1000 pregnant
women were randomly allocated to receive a letter for their
male partner that invited him to attend either VCT at the
woman’s next scheduled ANC appointment (intervention) or
a pregnancy information session, also during ANC (control)
[68]. Although all the women agreed to deliver the letters,
only 30% returned with a male partner. However, this was
35% among the women whose partners were offered VCT
compared to 26% for those coming for an information
session. At the end of the trial, 32% of male partners in
the intervention arm received HIV testing compared to 11%
in the control arm. Results were statistically significant,
although no measures were provided for pregnant women’s
uptake of PMTCT.
A similar study was conducted in Uganda with 1060
pregnant women participating [69]. In this study, women
received letters for their partners that either invited the
partner to attend ANC (intervention) or provided men with
basic literature on pregnancy (control). At the end of the
trial, there were no significant differences in the proportions
of women attending ANC with a male partner (16.2% in the
intervention group and 14.2% among controls) nor in male
HCT uptake. However, the authors note that both groups
exhibited an increase of over 10% from the baseline rate
of 5% male partner attendance in ANC, suggesting that
receipt of any formal information from ANC services has
potential impact on male involvement. They also give a
possible explanation for the different results between the
RCTs, pointing out that the intervention in South Africa
was preceded by information campaigns and community
sensitization activities to promote male engagement more
widely.
Peer counselling schemes have been developed to counteract feelings of isolation and provide support and assistance to pregnant women. The use of peers is theorized to be
acceptable to people living with HIV, who might prefer advice
from others who have undergone similar challenges. Peer
counselling is often provided in clinics but increasingly
incorporates house-to-house visits [70]. A quasi-experimental
study of ‘‘mentor mothers’’ showed reductions in depression,
increases in disclosure of HIV status and improvements in
coping strategies, clinic attendance and breastfeeding among
the intervention group, although there were no differences
in women’s use of single-dose nevirapine, which was the
recommended regimen at the time [70]. A systematic review
of peer counselling for infant feeding outcomes concluded
that community-based peer counsellors improve breastfeeding initiation, duration and exclusivity [71]. In Bangladesh, a
RCT of peer counsellors promoting exclusive breastfeeding
resulted in 70% exclusive breastfeeding in the intervention at
5 months compared to just 6% among the control group [72].
This study was replicated in sub-Saharan Africa (Uganda,
Burkina Faso and South Africa) with similar success, although
in South Africa, some participants did not trust counsellors’
motivations, feared loss of confidentiality and did not accept
them as ‘‘peers’’ [73].
5
Community context
Interventions targeting the community context include
strengthening linkages between health facilities and clients,
home-based care (HBC) programmes and training community
members (including traditional birth attendants (TBA)) to
promote care initiation and retention.
Formalized links between clinics and the community try to
increase perceived service ‘‘friendliness’’ and maintain regular contact with clients. Approaches include volunteers’
accompanying clients to health facilities and observing
ingestion of pills [74], hiring ‘‘meet and greet’’ staff to guide
patients through hospital appointments [36], patient tracking
systems to reduce attrition [75] and mobile phone message
reminders [76]. There have been few evaluations of formalized linkages, although the use of mobile phones to
sustain adherence was tested through an RCT in Kenya;
weekly text reminders resulted in 53% of the intervention
group, compared to 40% of controls, achieving 90% drug
adherence [76]. Also in Kenya, a patient tracing system
contacted PMTCT clients who did not return for appointments by phone, home visits or through nominated friends/
relatives in the community. After 1 year, attempts had been
made to contact 269 PMTCT clients, resulting in 60.2%
returning to the clinic [75].
Home-based care programmes were introduced prior to
widespread ARV availability, and the role of providers has
evolved over time to encompass adherence support, HCT
promotion within families, referrals to other services and,
most recently, ART itself. HBC programmes have been subject
to numerous reviews and evaluations. A cluster RCT in
Uganda demonstrated that HBC programmes could be as
clinically effective as facility-based treatment, measured by
virological failure rates [77]. Furthermore, health service and
patient costs related to transportation, missed time at work
and childcare were significantly lower in the HBC group.
While expanding HBC to support treatment access and
adherence has proved feasible, inadequate attention has
been given to operational challenges and threats to sustainability, particularly under pressure for ‘‘scaling up’’ [78].
Community health workers are trained lay persons who
conduct health promotion, visit households for prevention
and treatment and make referrals to higher levels of care. CHW
are theorized to build local capacity, strengthen social networks and empower communities [79]. Interest in CHW has
been reinvigorated in recent years due to the task-shifting
agenda [80,81]. CHW differ in role, recruitment criteria and
how they are compensated and supervised. While some
schemes are managed through the government’s formal
health system (as in Ethiopia), many are not and have been
implemented by community-based organizations (CBO) or
evolve out of support groups for people living with HIV.
Variations on CHW include lay health workers (LHWs),
adherence support workers, lady health workers, health
surveillance assistants, health extension workers and community health volunteers or caregivers (if unpaid). In relation to
HIV, their tasks are varied and, in some cases, resemble those
of HBC providers, while in others, they focus on adherence and
peer support. CHW have also been used to promote behaviour
relevant to PMTCT such as facility-based delivery, exclusive
breastfeeding and postnatal follow-up [79].
Several systematic and narrative reviews address the
applicability of CHW to HIV treatment. A recent Cochrane
Collection review [82] of LHWs’ delivery of maternal and child
health interventions concluded there is ‘‘moderate quality’’
evidence that LHW’s interventions increase breastfeeding
(including exclusive breastfeeding over 6 months). Another
systematic review [79] found that CHW could increase facilitybased delivery and skilled attendance, reduce maternal
mortality through birth preparedness and provide counselling
for postnatal depression and psychosocial support.
Some evidence of CHW effectiveness for adherence comes
from a pre- and postintervention comparison in Zambia, in
which peers of HIV-positive clients were trained as adherence
support workers to provide home-based counselling on
treatment guidelines [83]. After 12 months, responsibilities
had shifted from health workers to peer CHW without
compromising quality; loss to follow-up decreased. In
Uganda, peer health workers (community-nominated HIV
role models with good ART adherence) were trained to
support new treatment initiators through regular home visits,
information and counselling and provide wider psychosocial
support through peer networks [84]. The cluster RCT results
showed no effect on adherence or virologic failure between
study arms during the first 18 months, although the
intervention did appear to help sustain treatment in the
longer term (]96 weeks).
Traditional birth attendants are one type of community
health worker, who have considerable influence over local
practices. Pilot programmes have recruited TBA into tasks
related to PMTCT. In Cameroon, trained TBA have been
providing pre- and post-test counselling, rapid HIV tests and
administering single-dose nevirapine during labour and to
the newborn since 2002 [85]. In Tanzania, TBA have
promoted VCT to pregnant women, observed ARV ingestion
during home deliveries and referred postnatal mothers to
infant HIV care [86]. Programmes that integrate TBA into
PMTCT have not yet been rigorously evaluated.
It is difficult to generalize findings on CHW due to
considerable heterogeneity across programmes. Success
depends on levels of remuneration, supervisory structures,
training and accreditation and relationship with clinical
services [87,88].
Sociocultural environment
Interventions targeting the sociocultural context attempt to
change social norms and create an enabling environment.
Because these activities are removed from individual behaviour and operate through complex pathways of change,
attributing impact is difficult, leading to calls for detailed
process evaluations [89].
Based on theories of empowerment, social action and
diffusion, community mobilization builds local ownership of
HIV interventions [90,91]. A wide range of activities comprise
community mobilization: engaging traditional leaders, organizing public discussions and theatrical events, peer education
and participatory methods to involve community members.
The social constructs targeted include social networks, gender
6
relations, behavioural norms and belief systems. Such interventions incorporate multiple components that can be
difficult to disentangle through conventional evaluation designs, particularly as, by definition, mobilization requires
flexibility.
A cluster RCT of community mobilization (Project Accept)
has been implemented in Zimbabwe, South Africa, Tanzania
and Thailand. Forty-eight communities were randomized to
receive the Project Accept intervention or standard clinicbased HIV testing and care services. Intervention sites
introduced (1) community working groups, (2) working with
peer leaders in social networks as ‘‘change agents,’’ (3)
outreach workers to promote VCT, (4) community volunteers
encouraging testing and treatment and (5) post-test psychosocial support. Mobile testing has also been provided in
intervention areas. Preliminary findings from three countries
(Tanzania, Thailand and Zimbabwe) show testing uptake to be
three times higher in intervention compared to control sites
and suggest good levels of adherence among those taking up
ARV [92].
A second community mobilization evaluation was conducted in South Africa, Lesotho, Namibia and Botswana.
Local organizations underwent participatory planning to
identify ways in which they might contribute to comprehensive social support services for people living with HIV and
identified local adaptations as required. Testing was widely
promoted and individuals diagnosed with HIV could opt to
receive psychosocial support, a ‘‘treatment buddy,’’ homebased care, support groups, childcare, treatment literacy
education, food supplements and income generation
schemes. In the first year, uptake was highest for homebased care (61% of participants) and food supplementation
(40%). The study found median CD4 counts increased more
quickly and exhibited a significantly greater increase (207 vs
170 cells/mm3) among community members who received
HBC or food supplements compared to those who did not
[93]. After 12 months, adherence to ARV was 67.0% in
people receiving home-based care or food vs 58.2% among
those who did not use support services, a statistically
significant difference. As a prospective cohort, however, the
study was unable to attribute observed differences in health
outcomes to the community-based support activities, as
allocation of programme components was not random and
reflected different levels of motivation or need.
Another approach is the organization of participatory
women’s groups. Meetings are facilitated in which community members go through an analytical cycle: (1) problem
identification and prioritization, (2) strategic planning, (3)
strategy implementation and (4) impact assessment [94].
During strategic planning, groups select ways to overcome
barriers (such as lack of transportation during an obstetric
emergency) and put action plans into place. Participatory
groups to improve maternal and neonatal health have been
rigorously evaluated in trials throughout South and Southeast
Asia, and found to significantly reduce both neonatal
mortality and moderate maternal depression [9597]. An
ongoing cluster randomized trial is underway in Malawi that
will help determine the applicability of this approach for subSaharan African contexts [98].
Finally, conditional cash transfers address socio-economic
inequalities and provide a social safety net. Payments are
disbursed to individuals or families in return for specific
health behaviours or outcomes. For example, payments have
been given to girls who remain enrolled in school, to young
people who do not contract STI or HIV and to women if they
collect test results, attend antenatal appointments or deliver
their babies in health facilities [1,99]. Cash transfers can
increase use of services; a Malawian study tested the use of
financial incentives for collection of HIV test results and
found an overall improvement of 27% in return visits
compared to controls who received no incentive [100].
Although cash transfers have been used to increase skilled
attendance at delivery, they have not been explicitly tested
for PMTCT outcomes [101].
Discussion
Barriers to optimal PMTCT uptake that occur outside
healthcare settings are well documented and seriously
hamper current efforts to eliminate vertical transmission of
HIV. Organizing these barriers within a social ecological
framework illustrates how they can work individually or in
combination with each other, through multiple pathways
across overlapping levels of social influence. To identify ways
to overcome these, we used the conceptual framework to
guide a review of the literature on community-based
approaches that can work at different levels. While some
approaches are specific to PMTCT, many will need to be
adapted from more general HIV testing and treatment
programmes or drawn from the maternal and child health
field.
There is a great deal of evidence that strategies targeting
individuals within their families and peer groups, such as
providing home-based and family HIV testing, and training
peer volunteers to support others, improve outcomes related
to testing, treatment uptake and adherence, all of which are
relevant to preventing vertical transmission. While efforts to
engage male partners are based on data showing the role
played by good couple communication and male support in
PMTCT uptake, to date, interventions to increase their
involvement remain limited although show some positive
signs. On the other hand, many other family members are
likely to be influential in decision making; but this review was
unable to identify interventions targeting parents, in-laws
and other household members for PMTCT.
There is also good evidence that interventions operating at
the community level, including provision of home-based
care and community health worker schemes, can also
increase retention in care and engage family members. These
are often not adequately integrated into wider health
systems, nor provided with sustained supervision. Furthermore, unless effective referral mechanisms are in place, HIVpositive women do not always receive HBC until late in the
pregnancy or after delivery. Models in which HBC providers
or CHW extend household testing so as to identify pregnant
women early in gestation could be tried to tailor them to the
specific needs of PMTCT. Once women are enrolled in care,
linking facilities to community members more proactively,
through accompaniment to appointments, mobile phone
7
messaging and household-based contact tracing, appear to
be simple ways to support adherence and retention.
At the wider sociocultural level, the evidence emerging
from participatory community groups that facilitate strategic
health-seeking behaviour (e.g., for obstetric emergencies) is
of particular interest due to the overlap between the PMTCT
care cascade and other key maternal and child health
services (antenatal care, facility-based deliveries and return
for postnatal appointments). Participatory community groups
have been comprehensively evaluated, although most studies
have been conducted in Asia, and it is unclear to what extent
findings can be applied to African countries.
For more ‘‘upstream’’ approaches, however, evidence is
more difficult to interpret, particularly as complex interventions combine multiple strategies. Where evidence exists,
there is often little information describing implementation,
and components such as ‘‘community mobilization,’’ ‘‘empowerment’’ and ‘‘engagement’’ remain poorly defined and
vary across settings. Lack of consistency in the content of
these interventions is inevitable, as local ownership over
programme design is part of the approach’s theoretical
underpinning, making the outcomes of each possible permutation almost impossible to determine through traditional
evaluation methods.
Given scarce resources, it is important to ensure that
intervention packages use the most cost-effective combination of activities, which may differ according to setting and
target audience (e.g., reaching pregnant women for PMTCT
vs mobilizing high risk men to reduce sexual risk behaviour).
Thus, even successful interventions can be difficult to
replicate in new settings if they have not been tested for
PMTCT-related outcomes.
Conclusions
This paper summarizes how social factors limit progress
across the HIV treatment cascade, many of which are
applicable to PMTCT, and reviews the emerging body of
literature on the different approaches used by programmes
to mitigate the causes of attrition at community level. There
is now a need to fill gaps in understanding the mechanics of
these approaches so that they can be adapted to eliminate
new paediatric infections and keep HIV-positive mothers alive
in different settings. Programme planners could benefit from
using a social ecological framework to guide selection of
context-specific interventions as well as to identify particular
barriers or levels of influence that have not yet been
addressed. Many interventions have focused on individuals,
often ignoring how people’s behaviours are embedded within
ever-widening social structures. Understanding the pathways
to health-seeking behaviour can lead to greater appreciation
or the need for broader normative and structural change.
1
Department of Population Studies, London School of Hygiene & Tropical
Medicine, London, UK; 2Elizabeth Glaser Pediatric AIDS Foundation, Washington, DC, USA; 3Elizabeth Glaser Pediatric AIDS Foundation, Nairobi,
Kenya; 4Elizabeth Glaser Pediatric AIDS Foundation, Bryanston, Johannesburg,
South Africa
Competing interests
We declare that we have no competing interests.
JB conducted the literature review on which this paper is based and drafted
the manuscript. DW and AH conceived the original idea, commissioned the
review and commented on all drafts of the text. LK, RS and DM served on
the technical advisory group for the research, commented and reviewed the
original conceptual framework and early drafts. AG, SL and CSP advised on the
review’s aims and scope and reviewed paper drafts.
Abbreviations
CBO, community-based organizations; CHWs, Community health workers;
EGPAF, Elizabeth Glaser Pediatric AIDS Foundation; HBC, home-based care;
HCT, HIV counselling and treatment; IPV, intimate partner violence; LHWs, lay
health workers; PMTCT, prevention of mother to child transmission; RCTs,
randomized controlled trials; TBA, traditional birth attendants.
Acknowledgements
This paper is based on a literature review conducted under the auspices of the
Elizabeth Glaser Pediatric AIDS Foundation’s Community Action Team.
References
1. Padian NS, McCoy SI, Karim SS, Hasen N, Kim J, Bartos M, et al. HIV
prevention transformed: the new prevention research agenda. Lancet.
2011;378(9787):26978.
in rural and urban Uganda. AIDS Res Ther. 2005;2(1):10.
3. Thompson MA, Mugavero MJ, Amico KR, Cargill VA, Chang LW, Gross R, et al.
Guidelines for improving entry into and retention in care and antiretroviral
adherence for persons with HIV: evidence-based recommendations from an
International Association of Physicians in AIDS Care Panel. Ann Intern Med.
2012:E-419.
4. Ciaranello A, Park JE, Ramirez-Avila L, Freedberg KA, Walensky RP, Leroy V.
Early infant HIV-1 diagnosis programs in resource limited settings: opportunities for improved outcomes and more cost-effective interventions. BMC
Med. 2011;9(1):59.
5. Coutsoudis A, Kwaan L, Thomson M. Prevention of vertical transmission
of HIV-1 in resource-limited settings. Expert Rev Anti Infect Ther.
2010;8(10):116375.
6. Mugavero MJ, Norton WE, Saag MS. Health care system and policy factors
influencing engagement in HIV medical care: piecing together the fragments
of a fractured health care delivery system. Clin Infect Dis. 2011;52 Suppl 2:
S23846.
7. Msellati P. Improving mothers’ access to PMTCT programs in West Africa:
a public health perspective. Soc Sci Med. 2009;69(6):80712.
8. Rosen S, Fox MP. Retention in HIV care between testing and treatment
in sub-Saharan Africa: a systematic review. PLoS Med. 2011;8(7):e1001056.
9. Rosen S, Fox MP, Gill CJ. Patient retention in antiretroviral therapy programs
in sub-Saharan Africa: a systematic review. PLoS Med. 2007;4(10):e298.
10. Wringe A, Isingo R, Urassa M, Maiseli G, Manyalla R, Changalucha J, et al.
Uptake of HIV voluntary counselling and testing services in rural Tanzania:
implications for effective HIV prevention and equitable access to treatment.
Trop Med Int Health. 2008;13(3):31927.
11. Mepham SO, Bland RM, Newell ML. Prevention of mother-tochild transmission of HIV in resource-rich and -poor settings. BJOG.
2011;118(2):20218.
12. Shin S, Muñoz M, Espiritu B, Zeladita J, Sanchez E, Callacna M, et al.
Psychosocial impact of poverty on antiretroviral nonadherence among HIV-TB
coinfected patients in Lima, Peru. J Int Assoc Physicians AIDS Care (Chic).
2008;7(2):7481.
13. Starace F, Ammassari A, Trotta MP, Murri R, De Longis P, Izzo C, et al.
Depression is a risk factor for suboptimal adherence to highly active
antiretroviral therapy. J Acquir Immune Defic Syndr. 2002;31:S1369.
14. Muyingo SK, Walker AS, Reid A, Munderi P, Gibb DM, Ssali F, et al. Patterns
of individual and population-level adherence to antiretroviral therapy and risk
factors for poor adherence in the first year of the DART trial in Uganda
and Zimbabwe. [Miscellaneous Article]. J Acquir Immune Defic Syndr.
2008;48(4):47684.
15. Perez F, Aung KD, Ndoro T, Engelsmann B, Dabis F. Participation of
traditional birth attendants in prevention of mother-to-child transmission of
HIV services in two rural districts in Zimbabwe: a feasibility study. BMC Public
Health. 2008;8(1):401.
8
16. O’Gorman DA, Nyirenda LJ, Theobald SJ. Prevention of mother-to-child
transmission of HIV infection: views and perceptions about swallowing
nevirapine in rural Lilongwe, Malawi. BMC Public Health. 2010;10:354.
17. Tchendjou PT, Koki PN, Eboko F, Malateste K, Essounga AN, Amassana D,
et al. Factors associated with history of HIV testing among pregnant women
and their partners in Cameroon: baseline data from a Behavioral Intervention
Trial (ANRS 12127 Prenahtest). J Acquir Immune Defic Syndr. 2011;57 Suppl
1:S915.
18. Maman S, Moodley D, Groves AK. Defining male support during and after
pregnancy from the perspective of HIV-positive and HIV-negative women in
Durban, South Africa. J Midwifery Womens Health. 2011;56:32531.
19. Were E, Curran K, Delany-Moretlwe S, Nakku-Joloba E, Mugo NR, Kiarie J,
et al. A prospective study of frequency and correlates of intimate partner
violence among African heterosexual HIV serodiscordant couples. AIDS.
2011;25(16):200918.
21. Kiarie JN, Kreiss JK, Richardson BA, John-Stewart GC. Compliance with
antiretroviral regimens to prevent perinatal HIV-1 transmission in Kenya. AIDS.
2003;17(1):6571.
22. Peltzer K, Mlambo M, Phaswana-Mafuya N, Ladzani R. Determinants of
adherence to a single-dose nevirapine regimen for the prevention of motherto-child HIV transmission in Gert Sibande district in South Africa. Acta Paediatr.
2010;99(5):699704.
23. Albrecht S, Semrau K, Kasonde P, Sinkala M, Kankasa C, Vwalika C, et al.
Predictors of nonadherence to single-dose nevirapine therapy for the
prevention of mother-to-child HIV transmission. J Acquir Immune Defic Syndr.
2006;41(1):1148.
24. Nassali M, Nakanjako D, Kyabayinze D, Beyeza J, Okoth A, Mutyaba T.
Access to HIV/AIDS care for mothers and children in sub-Saharan Africa:
adherence to the postnatal PMTCT program. AIDS Care. 2009;21(9):112431.
25. Wouters E, van Loon F, van Rensburg D, Meulemans H. Community support
and disclosure of HIV serostatus to family members by public-sector
antiretroviral treatment patients in the Free State Province of South Africa.
AIDS Patient Care STDs. 2009;23(5):35764.
26. Bii SC, Otieno-Nyunya B, Siika A, Rotich JK. Infant feeding practices among
HIV infected women receiving prevention of mother-to-child transmission
services at Kitale District Hospital, Kenya. East Afr Med J. 2008;85(4):15661.
27. Ware NC, Idoko J, Kaaya S, Biraro IA, Wyatt MA, Agbaji O, et al. Explaining
adherence success in sub-Saharan Africa: an ethnographic study. PLoS Med.
2009;6(1):e1000011.
28. Nachega JB, Knowlton AR, Deluca A, Schoeman JH, Watkinson L, Efron A,
et al. Treatment supporter to improve adherence to antiretroviral therapy in
HIV-infected South African adults. A qualitative study. J Acquir Immune Defic
Syndr. 2006;43 Suppl 1:S12733.
29. Falnes EF, Moland KM, Tylleskär T, de Paoli MM, Leshabari SC, Engebretsen
IM. The potential role of mother-in-law in prevention of mother-to-child
transmission of HIV: a mixed methods study from the Kilimanjaro region,
northern Tanzania. BMC Public Health. 2011;11:551.
30. Cames C, Saher A, Ayassou KA, Cournil A, Meda N, Simondon KB.
Acceptability and feasibility of infant-feeding options: experiences of HIVinfected mothers in the World Health Organization Kesho Bora mother-to-child
transmission prevention (PMTCT) trial in Burkina Faso. Matern Child Nutr.
2010;6(3):25365.
31. Posse M, Meheus F, van Asten H, van der Ven A, Baltussen R. Barriers to
access to antiretroviral treatment in developing countries: a review. Trop Med
Int Health. 2008;13(7):90413.
32. Dlamini PS, Wantland D, Makoae LN, Chirwa M, Kohi TW, Greeff M, et al.
HIV stigma and missed medications in HIV-positive people in five African
countries. AIDS Patient Care STDs. 2009;23(5):37787.
33. Merten S, Kenter E, McKenzie O, Musheke M, Ntalasha H, Martin-Hilber A.
Patient-reported barriers and drivers of adherence to antiretrovirals in subSaharan Africa: a meta-ethnography. Trop Med Int Health. 2010;15 Suppl 1:
1633.
34. Selin A, Mills EJ, Nachega JB. Barriers to highly active antiretroviral
therapy adherence in sub-Saharan Africa. Future HIV Ther. 2007;1(3):
3319.
35. Nam SL, Fielding K, Avalos A, Dickinson D, Gaolathe T, Geissler PW. The
relationship of acceptance or denial of HIV-status to antiretroviral adherence
among adult HIV patients in urban Botswana. Soc Sci Med. 2008;67(2):30110.
36. Mshana GH, Wamoyi J, Busza J, Zaba B, Changalucha J, Kaluvya S, et al.
Barriers to accessing antiretroviral therapy in Kisesa, Tanzania: a qualitative
study of early rural referrals to the national program. AIDS Patient Care STDS.
2006;20(9):64957.
37. Roura M, Nsigaye R, Nhandi B, Wamoyi J, Busza J, Urassa M, et al. ‘‘Driving
the devil away’’: qualitative insights into miraculous cures for AIDS in a rural
Tanzanian ward. BMC Public Health. 2010;10(1):427.
38. Wanyama J, Castelnuovo B, Wandera B, Mwebaze P, Kambugu A,
Bangsberg DR, et al. Belief in divine healing can be a barrier to antiretroviral
therapy adherence in Uganda. AIDS. 2007;21(11):14867. doi: 10.1097/
QAD.0b013e32823ecf7f.
39. Doherty T, Chopra M, Nkonki L, Jackson D, Greiner T. Effect of the HIV
epidemic on infant feeding in South Africa: ‘‘When they see me coming with
the tins they laugh at me’’. Bull World Health Organ. 2006;84(2):906.
40. Levy J, Webb A, Sellen D. On our own, we can’t manage’’: experiences with
infant feeding recommendations among Malawian mothers living with HIV. Int
Breastfeed J. 2010;5(1):15.
41. Nor B, Zembe Y, Daniels K, Doherty T, Jackson D, Ahlberg BM, et al. ‘‘Peer
but not peer’’: considering the context of infant feeding peer counseling in a
high HIV prevalence area. J Hum Lact. 2009;25(4):42734.
42. Falnes E, Moland KM, Tylleskär T, de Paoli MM, Msuya SE, Engebretsen IM.
‘‘It is her responsibility’’: partner involvement in prevention of mother to child
transmission of HIV programmes, northern Tanzania. J Int AIDS Soc.
2011;14(1):21.
43. Byamugisha R, Tumwine JK, Semiyaga N, Tylleskär T. Determinants of male
involvement in the prevention of mother-to-child transmission of HIV
programme in Eastern Uganda: a cross-sectional survey. Reprod Health.
2010;7(1):12.
44. Blas E, Gilson L, Kelly MP, Labonté R, Lapitan J, Muntaner C, et al.
Addressing social determinants of health inequities: what can the state and
civil society do? Lancet. 2008;372(9650):16849.
45. Countdown Working Group on Health Policy and Health Systems,
Cavagnero E, Daelmans B, Gupta N, Scherpbier R, Shankar A. Assessment of
the health system and policy environment as a critical complement to tracking
intervention coverage for maternal, newborn, and child health. Lancet.
2008;371(9620):128493.
46. CSDH. Closing the gap in a generation: health equity through action on the
social determinants of health. Final Report of the Commission on Social
Determinants of Health. Geneva: WHO; 2008.
47. Diez Roux AV. The study of group-level factors in epidemiology: rethinking
variables, study designs, and analytical approaches. Epidemiol Rev.
2004;26(1):10411.
48. Feldacker C, Ennett ST, Speizer I. It’s not just who you are but where you
live: an exploration of community influences on individual HIV status in rural
Malawi. Soc Sci Med. 2011;72(5):71725.
49. Krieger N. Theories for social epidemiology in the 21st century: an
ecosocial perspective. Int J Epidemiol. 2001;30:66877.
50. Heise LL. Violence against women: an integrated, ecological framework.
Violence Against Women. 1998;4(3):26290.
51. DiClemente RJ, Salazar LF, Crosby RA, Rosenthal SL. Prevention and control
of sexually transmitted infections among adolescents: the importance of a
socio-ecological perspective-a commentary. Public Health. 2005;119(9):82536.
52. Latkin CA, Knowlton AR. Micro-social structural approaches to HIV
prevention: a social ecological perspective. AIDS Care. 2005;17 Suppl
1:S10213.
53. Wild K, Barclay L, Kelly P, Martins N. Birth choices in Timor-Leste: a
framework for understanding the use of maternal health services in low
resource settings. Soc Sci Med. 2010;71(11):203845.
54. Roura M, Busza J, Wringe A, Mbata D, Urassa M, Zaba B. Barriers to
sustaining antiretroviral treatment in Kisesa, Tanzania: a follow-up study to
understand attrition from the antiretroviral program. AIDS Patient Care STDS.
2009;23(3):20310.
55. Larios SE, Lozada R, Strathdee SA, Semple SJ, Roesch S, Staines H, et al. An
exploration of contextual factors that influence HIV risk in female sex workers
in Mexico: the social ecological model applied to HIV risk behaviors. AIDS Care.
2009;21(1):18.
56. Mays N, Pope C, Popay J. Systematically reviewing qualitative and
quantitative evidence to inform management and policy-making in the health
field. J Health Serv Res Policy. 2005;10 Suppl 1:620.
57. Petticrew M. Systematic reviews in public health: old chestnuts and new
challenges. Bull World Health Organ. 2009;87(3):163.
9
58. Boerma JT, Weir SS. Integrating demographic and epidemiological
approaches to research on HIV/AIDS: the proximate-determinants framework.
J Infect Dis. 2005;191(Suppl 1):S617.
59. Pilgrim NA, Blum RW. Protective and risk factors associated with
adolescent sexual and reproductive health in the English-speaking caribbean:
a literature review. J Adolesc Health. 2012;50(1):523.
60. Buhi ER,Goodson. Predictors of adolescent sexual behavior and intention:
a theory-guided systematic review. J Adolesc Health. 2007;40(1):421.
61. Habicht JP, Victora CG, Vaughan JP. Evaluation designs for adequacy,
plausibility and probability of public health programme performance and
impact. Int J Epidemiol. 1999;28(1):108.
62. Bonell CP, Hargreaves J, Cousens S, Ross D, Hayes R, Petticrew M, et al.
Alternatives to randomisation in the evaluation of public health interventions:
design challenges and solutions. J Epidemiol Commun Health. 2011;65(7):5827.
63. Betancourt T, Abrams EJ, McBain R, Fawzi MC. Family-centred approaches
to the prevention of mother to child transmission of HIV. J Int AIDS Soc.
2010;13 Suppl 2:S2.
64. Lugada E, Levin J, Abang B, Mermin J, Mugalanzi E, Namara G, et al.
Comparison of home and clinic-based HIV testing among household members
of persons taking antiretroviral therapy in Uganda: results from a randomized
trial. J Acquir Immune Defic Syndr. 2010;55(2):24552.
65. Sweat M, Morin S, Celentano D, Mulawa M, Singh B, Mbwambo J, et al.
Community-based intervention to increase HIV testing and case detection
in people aged 1632 years in Tanzania, Zimbabwe, and Thailand (NIMH
Project Accept, HPTN 043): a randomised study. Lancet Infect Dis. 2011;
11(7):52532.
66. Ostermann J, Reddy EA, Shorter MM, Muiruri C, Mtalo A, Itemba DK, et al.
Who tests, who doesn’t, and why? Uptake of mobile HIV counseling and testing
in the Kilimanjaro region of Tanzania. PloS One. 2011;6(1):e16488.
67. Bolu OO, Allread V, Creek T, Stringer E, Forna F, Bulterys M, et al.
Approaches for scaling up human immunodeficiency virus testing and
counseling in prevention of mother-to-child human immunodeficiency virus
transmission settings in resource-limited countries. Am J Obstet Gynecol.
2007;197(3 Suppl 1):S839.
68. Mohlala BK, Boily M-C, Gregson S. The forgotten half of the equation:
randomized controlled trial of a male invitation to attend couple voluntary
counselling and testing. AIDS. 2011;25(12):153541.
69. Byamugisha R, Åstrøm AN, Ndeezi G, Karamagi CA, Tylleskär T, Tumwine JK.
Male partner antenatal attendance and HIV testing in eastern Uganda: a
randomized facility-based intervention trial. J Int AIDS Soc. 2011;14(1):43.
70. Baek C, Mathambo V, Mkhize S, Friedman I, Apicella L, Rutenberg N. Key
findings from an evaluation of the mothers2mothers program in KwaZuluNatal, South Africa HORIZONS Final Report. Washington (DC): Population
Council & Health System Trust; 2007.
71. Chapman DJ, Morel K, Anderson AK, Damio G, Pérez-Escamilla R. Review:
breastfeeding peer counseling: from efficacy through scale-up. J Hum Lact.
2010;26(3):31426.
72. Haider R, Ashworth A, Kabir I, Huttly SR. Effect of community-based peer
counsellors on exclusive breastfeeding practices in Dhaka, Bangladesh: a
randomised controlled trial. Lancet. 2000;356(9242):16437.
73. Tylleskär T, Jackson D, Meda N, Engebretsen IM, Chopra M, Diallo AH, et al.
Exclusive breastfeeding promotion by peer counsellors in sub-Saharan Africa
(PROMISE-EBF): a cluster-randomised trial. Lancet. 2011;378(9789):4207.
74. Behforouz HL, Farmer PE, Mukherjee JS. From directly observed therapy to
accompagnateurs: enhancing AIDS treatment outcomes in Haiti and in Boston.
Clin Infect Dis. 2004;38 Suppl 5:S42936.
75. Thomson KA, Cheti EO, Reid T. Implementation and outcomes of an active
defaulter tracing system for HIV, prevention of mother to child transmission of
HIV (PMTCT), and TB patients in Kibera, Nairobi, Kenya. Trans R Soc Trop Med
Hyg. 2011;105(6):3206.
76. Pop-Eleches C, Thirumurthy H, Habyarimana JP, Zivin JG, Goldstein MP,
de Walque D et al. Mobile phone technologies improve adherence to
antiretroviral treatment in a resource-limited setting: a randomized controlled
trial of text message reminders. AIDS. 2011;25(6):82534. Doi: 10.1097/
QAD.0b013e32834380c1.
77. Jaffar S, Amuron B, Foster S, Birungi J, Levin J, Namara G, et al. Rates of
virological failure in patients treated in a home-based versus a facility-based
HIV-care model in Jinja, southeast Uganda: a cluster-randomised equivalence
trial. Lancet. 2009;374(9707):20809.
78. Wringe A, Cataldo F, Stevenson N, Fakoya A. Delivering comprehensive
home-based care programmes for HIV: a review of lessons learned and
challenges ahead in the era of antiretroviral therapy. Health Policy Plan.
2010;25(5):35262.
79. Bhutta ZA, Lassi ZS, Pariyo G, Huicho L. Global experience of community health workers for delivery of health related millenium development
goals: a systematic reivew, country case studies and recommendations.
Geneva: World Health Organization and Global Health Workforce Alliance;
2010.
80. Celletti F, Wright A, Palen J, Frehywot S, Markus A, Greenberg A, et al.
Can the deployment of community health workers for the delivery of
HIV services represent an effective and sustainable response to health
workforce shortages? Results of a multicountry study. AIDS. 2010;24 Suppl
1:S4557.
81. Standing H, Chowdhury AMR. Producing effective knowledge agents in a
pluralistic environment: what future for community health workers? Soc Sci
Med. 2008;66(10):2096107.
82. Lewin S, Munabi-Babigumira S, Glenton C, Daniels K, Bosch-Capblanch X,
van Wyk BE, et al. Lay health workers in primary and community health care
for maternal and child health and the management of infectious diseases.
Cochrane Database Syst Rev. 2010;(3):CD004015.
83. Torpey KE, Kabaso ME, Mutale LN, Kamanga MK, Mwango AJ, Simpungwe
J, et al. Adherence support workers: a way to address human resource
constraints in antiretroviral treatment programs in the public health setting in
Zambia. PloS One. 2008;3(5):e2204.
84. Chang LW, Kagaayi J, Nakigozi G, Ssempijja V, Packer AH, Serwadda D, et al.
Effect of peer health workers on AIDS Care in Rakai, Uganda: a clusterrandomized trial. PloS One. 2010;5(6):e10923.
85. Wanyu B, Diom E, Mitchell P, Tih PM, Meyer DJ. Birth attendants trained in
‘‘Prevention of Mother-To-Child HIV Transmission’’ provide care in rural
Cameroon, Africa. J Midwifery Womens Health. 2007;52(4):33441.
86. Msaky H, Kironde S, Shuma J, Nzima M, Mlay V, Reeler A. Scaling the
frontier: traditional birth attendant involvement in PMTCT service delivery in
Hai and Kilombero districts of Tanzania. Abstract no. ThPeE8084. Bangkok:
International Conference on AIDS; 2004.
87. Hermann K, Van Damme W, Pariyo GW, Schouten E, Assefa Y, Cirera A,
et al. Community health workers for ART in sub-Saharan Africa: learning from
experience capitalizing on new opportunities. Human Resour Health.
2009;7(1):31.
88. Schneider H, Lehmann U. Lay health workers and HIV programmes:
implications for health systems. AIDS Care. 2010;22(1 Suppl 1):607.
89. Victora CG, Habicht J-P, Bryce J. Evidence-based public health: moving
beyond randomized trials. Am J Public Health. 2004;94(3):4005.
90. Beeker C, Guenther-Grey C, Raj A. Community empowerment paradigm drift and the primary prevention of HIV/AIDS. Soc Sci Med. 1998;
46(7):83142.
91. Parker RG. Empowerment, community mobilization and social change in
the face of HIV/AIDS. AIDS. 1996;10(Suppl 3):S2731.
92. Khumalo-Sakutukwa G, Morin SF, Fritz K, Charlebois ED, van Rooyen H,
Chingono A, et al. Project Accept (HPTN 043): a community-based intervention
to reduce HIV incidence in populations at risk for HIV in sub-Saharan Africa and
Thailand. J Acquir Immune Defic Syndr. 2008;49(4):42231.
93. Kabore I, Bloem J, Etheredge G, Obiero W, Wanless S, Doykos P, et al.
The effect of community-based support services on clinical efficacy and
health-related quality of life in HIV/AIDS patients in resource-limited
settings in sub-Saharan Africa. AIDS Patient Care STDS. 2010;24(9):
58194.
94. Rath S, Nair N, Tripathy PK, Barnett S, Rath S, Mahapatra R, et al.
Explaining the impact of a women’s group led community mobilisation
intervention on maternal and newborn health outcomes: the Ekjut trial
process evaluation. BMC Int Health Hum Rights. 2010;10:25.
95. Manandhar DS, Osrin D, Shrestha BP, Mesko N, Morrison J, Tumbahangphe
KM, et al. Effect of a participatory intervention with women’s groups on
birth outcomes in Nepal: cluster-randomised controlled trial. Lancet.
2004;364(9438):9709.
96. Tripathy P, Nair N, Barnett S, Mahapatra R, Borghi J, Rath S, et al. Effect of a
participatory intervention with women’s groups on birth outcomes and
maternal depression in Jharkhand and Orissa, India: a cluster-randomised
controlled trial. Lancet. 2010;375(9721):118292.
97. Lee AC, Lawn JE, Cousens S, Kumar V, Osrin D, Bhutta ZA, et al. Linking
families and facilities for care at birth: what works to avert intrapartum-related
deaths? Int J Gynecol Obstet. 2009;107(Suppl 1):S6588.
10
98. Lewycka S, Mwansambo C, Kazembe P, Phiri T, Mganga A, Rosato M, et al.
A cluster randomised controlled trial of the community effectiveness of two
interventions in rural Malawi to improve health care and to reduce maternal,
newborn and infant mortality. Trials. 2010;11:88.
99. Adato M, Bassett L. Social protection to support vulnerable children and
families: the potential of cash transfers to protect education, health and
nutrition. Aids Care. 2009;21:6075.
100. Lagarde M, Haines A, Palmer N. Conditional cash transfers for improving
uptake of health interventions in low- and middle-income countries. JAMA.
2007;298(16):190010.
101. Powell-Jackson T, Morrison J, Tiwari S, Neupane BD, Costello AM. The
experiences of districts in implementing a national incentive programme to
promote safe delivery in Nepal. BMC Health Serv Res. 2009;9(1):97.
11
Mburu G et al. Journal of the International AIDS Society 2012, 15(Suppl 2):17386
Research article
Expanding the role of community mobilization to accelerate
progress towards ending vertical transmission of HIV in Uganda:
the Networks model
Gitau Mburu1, Kate Iorpenda§1 and Fred Muwanga2
§
Corresponding author: Kate Iorpenda, International HIV AIDS Alliance, Preece House, 91-101 Davigdor Road, Hove BN31RE, United Kingdom. Tel: 441273718900.
([email protected])
Abstract
Introduction: Efforts to prevent vertical transmission of HIV have gained momentum globally since the launch of the ‘‘Global
plan towards the elimination of new HIV infections among children by 2015 and keeping their mothers alive’’, reflecting the
growing consensus that we now have low-cost, efficacious interventions that promise to end vertical transmission of HIV.
Uganda is one of the 22 focus countries in the global plan and one of the 10 countries with the highest need for prevention of
vertical transmission globally. In the context of current shortfalls in the prevention of vertical HIV transmission, this paper
presents the results of the Networks project, a community mobilisation model implemented by the International HIV/AIDS
Alliance in Uganda, and draws out the theoretical foundations and promising community mobilization practices relevant to
prevention of vertical transmission.
Methods: A retrospective review of the Network project’s activities, documentation and evaluation was performed.
Results: The Networks project, through community mobilisation and greater involvement of people living with HIV, reached an
estimated 1.3 million people with at least one health service. By clustering 750 groups of people living with HIV into larger
coalitions, the project supported existing groups to amalgamate their collective strengths and skills in outreach, referral and
literacy activities; and improved reach and coverage of HIV services through strengthened linkages with healthcare facilities. Our
analysis of the Networks model shows that it could contribute to the prevention of vertical transmission of HIV as a replicable
and sustainable community mobilisation approach. In particular, the Networks model increased the uptake of decentralized
interventions for preventing vertical transmission through community referrals; promoted male involvement through peer
sensitisation; and linked communities to advocacy channels for advancing maternal health and prevention of vertical HIV
transmission.
Conclusions: By placing persons living with HIV at the centre, the Networks model offers a mechanism for strengthening
community and male involvement in preventing vertical transmission of HIV. The role of communities and networks of people
living with HIV in planning, service delivery and monitoring of national targets for prevention of vertical transmission should be
further strengthened through greater community engagement in service delivery and advocacy and through the regular sharing
of data between communities and health facilities.
Keywords: community mobilization; Uganda; Africa; vertical transmission; people living with HIV; Networks model; male
involvement.
Copyright: – 2012 Gitau-Mburu D et al; licensee International AIDS Society. This is an open access article distributed under the terms of the Creative Commons
Introduction
Consensus is emerging on the imperative to optimize
biomedical interventions to prevent vertical transmission
of HIV, focusing on and beyond drug regimens and diagnostics. This shift demands a rapid expansion of access to
HIV services through strengthened, decentralized and integrated health systems; adopting more cost-effective, equitable and community-centred delivery of services; and
addressing behavioural and structural barriers to effective
HIV prevention, treatment and care [13].
In particular, the call for more effective strategies to prevent
vertical transmission of HIV stems from the recognition that
one in seven people who acquire HIV globally do so
perinatally, accounting for almost 400,000 new cases of
children acquiring HIV annually. Vertical transmission accounts
for 90% of all HIV cases among children [3]. It is not surprising
therefore that prevention of vertical transmission of HIV
forms a core programmatic area in the investment framework
to halt the HIV epidemic proposed by Schwartländer et al. [4].
In June 2011, the ‘‘Global plan towards the elimination of
new HIV infections among children by 2015 and keeping their
mothers alive’’ was launched with a commitment to reduce
new cases of HIV among children by 90% and to halve AIDSrelated maternal deaths by 2015. The plan focuses on the 22
1
countries with the highest numbers of pregnant women
living with HIV globally [3].
Uganda, one of the 22 focus countries in the global plan,
has a generalized HIV epidemic, with an estimated HIV
prevalence of 6.5%, antenatal HIV prevalence of 7.5% and
HIV incidence of 1% among women of reproductive age (15
to 49 years) [58]. Within this generalized epidemic are
pockets of particularly high HIV prevalence for instance, of
up to 28% in fishing communities in which young sexually
active women are bearing children [9]. Consequently, vertical
transmission continues to be a major driver of the HIV
epidemic in Uganda, accounting for 18% of incident HIV
infections. In 2008, an estimated 82,000 HIV-positive women
needed interventions to prevent vertical transmission and
22,000 newborns acquired HIV in Uganda [3,5,7,10].
The national AIDS programme has made progress in
decentralizing services to prevent vertical transmission in
Uganda. By June 2009, interventions to prevent vertical
transmission were being provided in all districts and had
been decentralized to 314 health centres at the sub-county
level and 148 health centres at the parish level. At this time,
947 health facilities were offering services to prevent vertical
transmission, representing 87% of hospitals, 93.2% of health
centres at the county or parliamentary constituency level,
73.2% of sub-county health centres and 12.4% of parish
health centres [11].
Despite this progress, serious challenges continue to
undermine prevention of vertical HIV transmission in Uganda.
In a 2006 demographic and health survey, 94% of women
were found to utilize antenatal care (ANC) services at least
once during pregnancy, but only 42% delivered at a health
facility [8]. Access and utilization of ANC services by poor rural
women, who often deliver outside of health facilities [12], was
particularly low at 37% [8]. By 2009, 64% of all pregnant
women were being tested for HIV but only 53% of those who
tested HIV-positive and only 28% of HIV-exposed infants were
receiving antiretroviral prophylaxis [10].
Studies conducted in predominantly rural settings in
Wakiso, Mbarara and Kabarole districts in Uganda between
2008 and 2010 suggest that tackling vertical transmission of
HIV requires addressing a combination of individual, community and societal barriers. These range from failure to
disclose HIV status and lack of money for food and transport
at the individual level [13,14] to HIV-related stigma, poor
support from male partners and negative community reactions to exclusive breastfeeding at the community and
societal level [12,13,15,16]. This is in addition to health
systems-related barriers such as long distances and poor
linkages between community and facility-based services, as
well as sub-optimal provider-patient interactions [13,14] that
exacerbate stigma and discrimination.
The Uganda Networks project
The Networks project was funded by USAID and implemented by the International HIV/AIDS Alliance between 2006 and
2009. It aimed to increase access to a comprehensive continuum of HIV services by transforming groups of people
living with HIV from passive service recipients to active
service providers and facilitators [17,18]. Project activities
focussed on supporting 750 existing groups of people living
with HIV to organize themselves into a network of 120
larger, sub-national clusters. This amalgamated the collective
strengths and skills held by these networked groups in
outreach and education activities and improved the reach
and coverage of HIV and health services through referrals and
strengthened linkages with healthcare providers, [17,19].
Implementation of the project began with the development of operational and monitoring systems from the grassroots (parish) level to the sub-national level. This involved
mobilising groups of people living with HIV to form larger
networks and building the capacity of the networks through
training, mentorship and the provision of small grants. These
groups and selected ‘‘network support agents’’ (NSAs) then
facilitated the implementation of a community-based education, referral and linkage system [17,19]. By the end of 2008,
750 groups of people living with HIV had been mobilized and
120 county networks had been established in 40 districts,
with a membership of over 40,000.1
A key feature of the Networks project was the training of
1302 people to serve as NSAs. These community members
were seconded to work alongside healthcare providers in 643
facilities [17,18]. NSAs were selected, trained and supervised
based on criteria and a training curriculum designed to
promote the involvement of people living with HIV, including
men [14] (Table 1).
NSAs supported people living with HIV and their families
by making referrals, providing pretest and adherence counselling during home visits, tackling stigma through education
and increasing client access to HIV and general health
services. NSAs would, for example, physically accompany
clients to health facilities and work alongside providers at
designated facilities to assist with client orientation, pretest
counselling and registration [17,18].
Table 1. Selection criteria, supervision and training curriculum
of the NSAs
1. Selection criteria for NSAs
Gender
NSAs were selected as male-female pairs
Locality
Selected from any of the 40 districts covered by the
project
HIV status
HIV-positive (self-declared)
ART status
On antiretroviral therapy for at least one year
2. Training and supervision
Training
Three weeks’ training on nutrition, HIV, tuberculosis,
home-based care, pretest and adherence
counselling, confidentiality, family planning, HIVrelated gender-based violence, disclosure and
discordance and safer infant feeding practice
Supervision
Supervised by health workers (nurses) in 643
designated facilities
3. Remuneration and compensation
Compensation Reimbursement of expenses such as transport costs
Abbreviations: ART, antiretroviral therapy; NSAs, network support
agents.
2
Through partnerships with external stakeholders,2 the
Networks project facilitated 55 clusters of networked groups
to engage in income generation, music and drama training
and home care for vulnerable children. These clusters served
as service delivery points for people living with HIV, facilitated
focussed interventions for people affected by HIV and enabled
the engagement of people living with HIV as coproviders of
services. The Alliance provided organizational strengthening
and technical support to these networked groups to improve
their leadership, organizational management, HIV-literacy and
referral skills [17,19].
Aims and objectives of this paper
The aim of this paper is to examine the contribution of
the Networks model to the prevention of vertical transmission of HIV. Specifically, we explore the theoretical foundations of the model, describe its results and identify and
discuss promising practices relevant to prevention of vertical
transmission of HIV.
Methods
We employed a combination of retrospective reviews of the
Networks’ activities and project documentation to develop a
conceptual model for community mobilisation aimed at
strengthening the translation of practice to policy [20].
Ethical issues
No new data were collected for this analysis. Secondary
analysis of data was performed and triangulated with
findings from an evaluation of the project [18] and a
qualitative study of Ugandan networks of people living with
HIV performed by Hodgson et al. [19] in accordance with
ethical approval from the Uganda Virus Research Institute
and the Uganda National Council for Science and Technology.
No personally identifiable data were contained in the data
analyzed in this study.
Results
Description of the model
The Networks model pooled community, government and
external resources to strengthen community systems to
deliver and increase the reach, quality and linkages of HIV
services. Inherent to this community mobilization process
was an organizational capacity-building element, which
supported groups of people living with HIV to function
more effectively. This included training on organizational
development and management, increasing their HIV literacy
and fostering partnerships with other stakeholders.2 Groups
of people living with HIV were provided with financial
assistance (through mini-grants), equipment (such as motorbikes) and technical support (such as training), which
transformed them into ‘‘AIDS-competent’’ groups, enabling
them to ‘‘generate a sustainable local response to HIV’’ [21
(p.1662),22 (p.1557)] and collectively deliver services to their
members. Groups of people living with HIV acted as service
delivery points and linked their members with health
facilities through NSAs. Of particular relevance to prevention
of vertical HIV transmission was the NSAs’ outreach, onward
referrals and accompaniment of clients to health facilities.
These activities led to better uptake of services and linkages
with other health services [17] (Figure 1).
Theoretical foundations underlying the model
The Networks model has two fundamental foundations:
community mobilisation and greater involvement of people
living with HIV (GIPA).
Figure 1. Conceptual framework of community mobilisation as applied to PMTCT programme area. It creates an enabling environment
for community engagement in HIV service delivery through community systems strengthening, which in turn enables communities to engage
in the planning, design and delivery of services to prevent vertical HIV transmission. This leads to improved reach, male involvement
and linkages between prevention of vertical HIV transmission and other services, as well as to the desired long-term impacts of reduced
HIV transmission, morbidity and mortality.
3
Community engagement and mobilization
Judged by the established criteria of longevity, acceptance and
continuum of community involvement [23,24], the project
was founded on community engagement and encompassed
varying degrees of community mobilisation, participation and
empowerment. As in other models [21,22], community
members, in this case NSAs, were mobilized to take up the
role of service coproviders, transforming the paradigm of HIV
service delivery from ‘‘for the community’’ to ‘‘by the
community’’ [25 (p.i3)]. The model is based on the premise
that community engagement and mobilisation creates community structural elements in ways that ultimately increase
acceptance, ownership, capacity and sustainability. By recruiting local community members as NSAs, the project tapped
community expertise and knowledge and strengthened
linkages between facilities and the community. These linkages
continued beyond the life of the project funding.
Increased uptake of decentralized services to prevent vertical
transmission of HIV
Results of the evaluation showed that the project contributed to the realization of national targets relating to
vertical HIV transmission, particularly in the mid-eastern
districts, where the number of pregnant women provided
with services to prevent vertical transmission of HIV increased
from a baseline of 1264 at the start of the project in 2008
to 15,892 in 2009 [17]. These services included identifying
pregnant women in the community, encouraging them to go
for testing, accompanying them to get test results while
observing confidentiality, reminding them of ANC appointments and providing antiretroviral adherence support. By
creating a cadre of lay workers at the community level to
deliver services, the model substantially strengthened the
ability of community systems to reach rural and marginalized
communities and increase service uptake (Figure 2).
Greater involvement of people living with HIV and AIDS
While community engagement as coproviders of HIV services
plays a significant role in the model, ownership of the model
was equally strengthened by the fact that all NSAs were
people living with HIV (Table 1). Their participation in the
planning and implementation of the project enabled them
to contribute while overcoming barriers to GIPA such as
HIV stigma [19,26]. For instance, one NSA, quoted in Hodgson
et al. [19 (p.3)], asserts:
Promoted a family-centred approach to preventing vertical
transmission of HIV
The Networks project reached an estimated 1.3 million
people with at least one health service (Figure 2).
NSAs reached households with pregnant mothers through
home visits and used these visits as an entry point to assess
the overall health needs of their children and male partners.
As a result, 19,832 children were referred for additional
services including nutrition, education and health. For
instance, 2200 vulnerable children were registered for direct
support including support for school fees. In addition, NSAs
provided direct adherence support for antiretroviral and
tuberculosis (TB) treatment and provided home-based and
palliative care to approximately 70,000 people living with
HIV. Finally, NSAs counselled male partners of pregnant
women on the importance of antenatal clinic attendance and
prevention of vertical HIV transmission [17] (Table 2).
Disclosing my status, and going for training as an NSA
has affected my life greatly. People are friendlier, and
want me to counsel them. My life is now comfortable.
Impact on preventing vertical transmission of HIV
By the end of the implementation period, the Networks
project had achieved a number of outcomes related to
prevention of vertical transmission of HIV.
Figure 2. Cumulative services and referrals provided by groups of people living with HIV and NSAs between 2007 and 2009. The
project reached 1.3 million people with at least one health service, including HIV education and awareness prevention (continuous
black); antiretroviral literacy and education (long red dashes); antiretroviral adherence counselling and support (short purple dashes) and
referrals for health facility and community-based services (blue dotted). Abbreviation: NSAs, network support agents.
4
Table 2. Services provided to different household and
community members
Population
Men and women
Services provided
HIV pretest counselling
HIV education and literacy
Referral for HIV testing
Referral for antiretroviral therapy
Adherence support for antiretroviral and TB
drugs
Counselling and referral for family planning
Home-based and palliative care
Pregnant women
Identification of pregnant women
ANC appointment reminders
ART adherence support for HIV-positive
pregnant women
Male partners of
Peer sensitization on ANC and prevention of
pregnant women
vertical transmission
Referral for HIV testing
Children
Screening and referrals for nutrition support
Direct support with school fees for
vulnerable children
Abbreviations: ANC, antenatal care; ART, antiretroviral therapy; TB,
tuberculosis.
Promoted male involvement
Peer sensitisation was employed as a means of getting men
to convince other men to take up services. The genderbalanced approach of selecting paired male and female NSAs
increased male involvement in supporting improved outcomes for women and children and facilitated men’s uptake
of relevant services in the cascade of services required to
prevent vertical transmission of HIV (Figure 3).
Bridged the divide between the community and the health
system
Observational studies in a variety of settings have documented barriers to uptake of HIV services occasioned by a lack of
trust and confidence in healthcare workers, which results in
poor interactions between clients and service providers [13].
In such contexts, lay and community health workers are seen
as ‘‘a bridge between patients/community and the health
system’’ [27 (p.185)], fostering the interactions, understanding and articulation of their communities’ needs. Hence, by
virtue of their proximity to the community:
They [NSAs] managed to convince the communities
that HIV/AIDS is real and the people believe them, in
a way they never believed the health workers. They
[NSAs] . . . helped to bridge the gap between the
health care system and the community; people are
more comfortable coming to the clinics since they
know they will be finding their peers at the facility
who will show them around. [18 (p.5)].
Linked communities to district- and national-level advocacy
for preventing vertical transmission of HIV
Through a follow-on project funded by the Department for
International Development (DFID), groups of people living
with HIV and NSAs continued to advocate for better access to
maternal and other services to prevent vertical transmission
of HIV [28]. The initiative involved gathering data on the
availability of and access to maternal and child health
services for preventing vertical transmission. These data
served as the basis for advocacy around maternal health
and prevention of vertical transmission of HIV in district and
national consultative forums known as partnership platforms.
The partnership platform is a coalition of organizations
promoting access to maternal, neonatal and child health
services for preventing vertical transmission of HIV [28]. The
appeal for NSAs and people living with HIV to engage in
advocacy emanates from, among other factors, their emerging role as ‘‘expert patients’’ [29 (p.21)] and their firsthand experience as users of HIV and health services. These
forums have created an interface between national decisionmakers and women living with HIV and their male partners
and have initiated discussions about improving maternal and
child health through strengthened health systems.
Discussion
Networks of people living with HIV are recognized as a key
resource for enhancing support to those affected by HIV,
ameliorating stigma [30] and exemplifying the GIPA principle
[18,31] while at the same time empowering people living with
HIV to act as service providers in their own right at the
community level [19]. Our study highlights a number of
promising practices from Ugandan networks of people living
with HIV relevant to prevention of vertical transmission of
HIV, particularly regarding community mobilisation for service
delivery, community-led advocacy and male involvement.
Community mobilisation and involvement in service
delivery
Prevention of vertical transmission of HIV is no longer solely
dependent on the efficacy of antiretroviral regimens, but
equally important, the reach and coverage of the ‘‘hard to
reach’’ populations with existing interventions. As decentralization of interventions to prevent vertical transmission of
HIV to the community level becomes increasingly necessary
in order to reach marginalized women and their partners
[32], innovative and participatory community mobilisation
approaches are indispensable.
Evidence from South Africa, India and Zimbabwe suggests
that while most models of community mobilisation achieve
relatively good success in building the capacity of rural and
marginalized communities to deliver HIV care, they often
differ markedly in their ability to create enabling environments for effective community responses. This includes their
ability to identify and tackle preexisting community dynamics
that facilitate or hinder HIV prevention, treatment and care
[21,22]. At least in part, the collective ability of models with
high representation from stigmatized groups such as sex
5
Figure 3. Proportion of HIV pretest counselling (continuous black), referral for HIV testing (long red dashes) and referral for antiretroviral
therapy (blue dotted) taken up by men.
workers and other people affected by HIV to confront stigma
and acquire support from external partners appears to be a
distinct strength [18,22].
In particular, networks of people living with HIV can
mitigate some of the societal and economic barriers to
prevention of vertical transmission of HIV in Uganda such as
negative social attitudes towards exclusive breastfeeding [16],
sub-optimal disclosure, probably resulting from a high level of
HIV stigma and the cost of travelling long distances to health
facilities [13,14]. This emanates from the ability of these
networks to promote the participation of their members in
provision of HIV services openly at the community level and,
in doing so, to challenge stigma and promote disclosure
[18,19]. Networks of people living with HIV offer particular
strengths in outreach by creating a ‘‘network of support
services in the community’’ [33 (p.S20)]. As Bärnighausen
et al. [34] argue, optimal decentralization requires provision
of HIV services within community premises.
High rates of loss to follow-up often result from incremental losses along the cascade of interventions for
preventing vertical transmission of HIV, from antenatal
attendance, prenatal HIV testing and antiretroviral therapy
(ART) uptake and delivery in health facilities to infant testing,
prophylaxis and feeding [35]. In Uganda, this has particular
relevance as the absence of active tracking and referral
mechanisms for pregnant mothers often leads to low facilitybased delivery rates and low coverage of interventions to
prevent vertical transmission of HIV [8,10,12]. Our study
suggests that networks of people living with HIV can mitigate
some of these challenges through active community-level
identification, counselling and support to pregnant women to
access health facilities through appointment reminders and
accompaniment.
in the treatment 2.0 framework [1], requires strengthening
community systems and social accountability tools to ensure
that the coverage and quality of HIV services meets community expectations. Our study suggests that gathering community-level data could potentially strengthen monitoring of
national targets for maternal health and prevention of vertical
transmission of HIV, particularly targets related to quality,
budgetary allocations, coverage and equitable access.
Community advocacy for increased access to services
Mobilising communities to demand, plan, deliver and evaluate
efforts to prevent vertical transmission of HIV, as envisioned
Sustainability
Our analysis suggests that the integration of grantmaking processes transformed the Networks model from a
Male involvement through a family-centred approach
Male involvement which has a positive influence on the
uptake of interventions to prevent vertical transmission of
HIV [36,37] should be encouraged through peer sensitization and other innovative approaches that surmount the
inability of women to convince their partners to participate in
preventing vertical transmission [38], while mitigating the
risks of HIV-related intimate-partner violence and abandonment [39]. In the Networks model, male participation was
increased through the selection of gender-balanced NSA
pairs, which facilitated men-to-men peer education and
referrals in a setting where male participation in preventing
vertical transmission of HIV has been low [40]. In addition,
the model supported vulnerable women to access support
and mitigate negative consequences related to HIV diagnosis
and disclosure. This was primarily accomplished through
NSAs, who were trained on the importance of male
involvement and the impact of gender on HIV prevention.
The training focussed on the risk of intimate-partner violence
associated with HIV testing, disclosure and discordance, as
well as the impact of a violent environment on women’s
ability to negotiate safer sexual practices; access antenatal
care; continue taking antiretroviral treatment; and utilize
safer infant feeding options.
6
closed-ended into an almost self-perpetuating project, while
at the same time building the capacity of groups of people
living with HIV to manage finances. As highlighted by
Hodgson et al. [19], networks provide people living with
HIV with opportunities to take up specific roles in the
community including income generation. For example, 58
groups of people living with HIV applied for and received
grants for income-generating activities, which were used to
support prevention outreach in schools and care for vulnerable children [17,19]. Being recipients and facilitators of
health services strengthened the sense of ownership of the
project among people living with HIV and bolstered their
visibility, legitimacy and recognition [19]. This motivated
groups of people living with HIV to continue providing some
services even after the funding ended, which is particularly
relevant in the current context of increased task-shifting and
community engagement in HIV service delivery [1]. Despite
these achievements, long-term sustainability based on
volunteerism is threatened by high turnover and attrition
[41,42]. Integration of community-based initiatives into wider
health systems and increased ownership of such initiatives
among other community members in addition to people
living with HIV is required for greater sustainability.
Replicability
While sustainability remains a concern, the relative success
of the Networks project in Uganda has led to the model
being replicated within a USAID-funded BRIDGE II project3
in Chiradzulu, Malawi. Implementation of the model in
Malawi which started in July 2010 and is still ongoing demanded a nuanced understanding of the local context,
including decentralization policy, epidemiology, service gaps
and barriers to services. For example, the model is being used
to fill gaps in the existing referral system by supplementing
paper-based referral mechanism with one-on-one referrals.
NSAs, termed Community Referral Agents in the Malawi
project, are equipped with a comprehensive directory of both
statutory and non-statutory HIV services available in each
district, which allows them to map and link people living
with HIV as well as other community members to services
closest to them. This is particularly relevant in settings where
long distances to health facilities [13,14] and ‘‘unavailability
of services at health facilities’’ (Glory Mkandawire, Chief of
Party, BRIDGE II, Malawi, personal communication) can
discourage uptake of antenatal and other services to prevent
vertical transmission of HIV.
Limitations of this study
Incomplete programme data limited our analysis of costeffectiveness, uptake of infant prophylaxis and other outcomes related to prevention of vertical transmission. For
example, data related to some activities from the fourth
quarter of 2008 was missing due to the redesign of the
monitoring indicators [17]. In addition, data regarding the
uptake of ART by HIV-positive mothers and their HIV-exposed
infants, as well as their retention in care was not routinely
collected. This suggests weak mechanisms for the sharing of
data between the networks and health facilities once
mothers were enrolled in ANC and in vertical HIV prevention
programs. Similarly, our analysis regarding Networks project
costs and cost-effectiveness was limited because unit-cost
data were not included in the project design.
Conclusions
Networks of people living with HIV can serve as an effective
mechanism for mobilising communities to prevent vertical
transmission of HIV. Networks can potentially increase
coverage of services; challenge inequities in service delivery;
reduce missed opportunities by reaching the poorest and the
most marginalized community members whom health systems are unable to reach; and encourage male participation.
The Networks model can empower people living with HIV to
deliver and advocate for their communities’ needs. Inclusion
of livelihood activities may strengthen sustainability.
Refocussing efforts on and beyond diagnostic, therapeutic
and clinical aspects of preventing vertical transmission of HIV
to address individual behaviours, societal norms and other
structural factors that drive vertical transmission of HIV
(including stigma, low involvement of men, economic deprivation and inaccessible health systems) is a promising strategy.
Investing in the community response by strengthening community systems to extend the healthcare workforce and
address community-level service delivery gaps is warranted
[1,4].
In particular, social accountability, as well as tools to
monitor service availability and delivery, should be strengthened within community-centred models to ensure that
community expectations are met regarding the quality and
coverage of services to prevent vertical transmission. Regular
sharing of data between community groups and health
facilities should be encouraged once mothers are enrolled
in ANC and in programs to prevent vertical HIV transmission.
Finally, in light of the central role of community mobilisation in prevention of vertical HIV transmission and in other
HIV programmatic areas, an evidence-informed articulation
of the components and costs of community mobilisation is
needed in order to support the inclusion of appropriately
costed community efforts within HIV programmes.
1
International HIV AIDS Alliance, Hove, United Kingdom; 2International HIV
AIDS Alliance, Kampala, Uganda
Competing interests
KI conceptualized the study and reviewed drafts. DG-M drafted the paper and
revised drafts based on comments. FM provided data and comments on the
manuscript. All authors read and approved the final manuscript.
Abbreviations
ANC, antenatal care; ART, antiretroviral therapy; NSAs, network support
agents; TB, tuberculosis.
Funding sources
The Networks project was funded by USAID under cooperative agreement 617A-00-06-00008-00.
Acknowledgements
We are grateful to all participants in the Networks project, including NSAs,
other people living with HIV and partners including the Uganda Ministry of
Health, Uganda AIDS Commission, Tuberculosis Control Assistance Program,
NU-LIFE and the AIDS Support Organization. We thank Beatrice Mutali,
7
Siobhan O’Dowd, Anja Teltschik, Farai Matsika, Kelly Safreed-Harmon and Janet
Seeley for comments on earlier drafts of the paper, as well as Glory
Mkandawire for information and permission to refer to the Malawi BRIDGE
II Project.
Notes
1. On average, eight groups of people living with HIV formed a cluster,
although the number ranged from as few as six to as many as twenty-three.
One lead or liaison group with stronger capacity was identified and its
capacity strengthened through training and small grants. Each lead group,
in turn, was responsible for building the capacity of the other groups in its
cluster. Groups of people living with HIV acted as community service
delivery points for a range of HIV services.
2. Partners included the Uganda Ministry of Health and the Uganda AIDS
Commission (which allowed NSAs to be co-located in health facilities); NULIFE, a technical assistance programme supporting improved health and
nutrition outcomes for people living with HIV (which trained NSAs on
nutrition); The AIDS Support Organization, a Ugandan HIV services
organization (which supported some groups of people living with HIV
before implementation of the Networks project); and TB CAP, a USAIDfunded programme supporting TB control between 2007 and 2010 (which
supported TB case finding among people living with HIV in the Networks
project).
3. BRIDGE II is a USAID-funded project led by the Johns Hopkins University Bloomberg School of Public Health Centre for Communication
Program, and in which the Alliance is a partner.
References
1. WHO. The treatment 2.0 framework for action: catalysing the next phase of
treatment, care and support. Geneva: WHO; 2011 [cited 2012 Mar 20].
Available from: http://whqlibdoc.who.int/publications/2011/9789241501934_
eng.pdf.
2. WHO. Global HIV/AIDS response. Epidemic update and health sector
progress towards Universal Access Progress report 2011. Geneva: WHO;
2011 [cited 2012 Mar 20]. Available from: http://www.who.int/HIV/pub/
progress_report2011/HIV_full_report_2011.pdf.
3. UNAIDS. Global plan towards the elimination of new HIV infections among
children by 2015 and keeping their mothers alive 20112015. Geneva: UNAIDS;
2011 [cited 2011 Nov 12]. Available from: http://www.unaids.org/en/media/
unaids/contentassets/documents/unaidspublication/2011/20110609_JC2137_
Global-Plan-Elimination-HIV-Children_en.pdf.
4. Schwartländer B, Stover J, Hallett T, Atun R, Avila C, Gouws E, et al.
Investment Framework Study Group. Towards an improved investment
approach for an effective response to HIV/AIDS. Lancet. 2011;377(9782):
203141.
5. UNAIDS. Report on the global AIDS epidemic 2010. Geneva: UNAIDS; 2010
[cited 2011 Nov 12]. Available from: http://www.unaids.org/documents/
20101123_GlobalReport_em.pdf.
6. Musinguzi J, Kirungi W, Opio A, Montana L, Mishra V, Madraa E, et al.
Comparison of HIV prevalence estimates from sentinel surveillance and a
national population-based survey in Uganda, 20052006. J Acquir Immune
Defic Syndr. 2009;51(1):7884.
7. MOH/ORC. Uganda HIV/AIDS sero-behavioral survey 20042005. Kampala,
Uganda: Ministry of Health/Macro International; 2006.
8. Uganda Bureau of Statistics. Demographic and health Survey. Preliminary
report. Kampala: Uganda Bureau of Statistics; 2006.
9. Asiki G, Mpendo J, Abaasa A, Agaba C, Nanvubya A, Nielsen L, et al. HIV and
syphilis prevalence and associated risk factors among fishing communities of
Lake Victoria, Uganda. Sex Transm Infect. 2011;87(6):5115.
10. WHO. PMTCT strategic vision. Geneva: WHO; 2010 [cited 2011 Dec 12].
Available from: http://www.who.int/HIV/pub/mtct/strategic_vision.pdf.
11. Uganda AIDS Commission. Status of HIV & AIDS prevention, care and
treatment in Uganda; 2011 [cited 2012 Mar 20]. Available from: http://www.
aidsuganda.org/documents/Status of the National HIV in Uganda.pdf.
in rural and urban Uganda. AIDS Res Ther. 2005;2:10.
13. Duff P, Kipp W, Wild TC, Rubaale T, Okech-Ojony J. Barriers to accessing
highly active antiretroviral therapy by HIV-positive women attending an
antenatal clinic in a regional hospital in western Uganda. J Int AIDS Soc.
2010;13:37.
14. Mbonye AK, Hansen KS, Wamono F, Magnussen P. Barriers to prevention
of mother-to-child transmission of HIV services in Uganda. J Biosoc Sci.
2010;42(2):27183.
15. Dahl V, Mellhammar L, Bajunirwe F, Björkman P. Acceptance of HIV testing
among women attending antenatal care in south-western Uganda: risk factors
and reasons for test refusal. AIDS Care. 2008;20:74652.
16. Matovu A, Kirunda B, Rugamba-Kabagambe G, Tumwesigye NM, Nuwaha F.
Factors influencing adherence to exclusive breast feeding among HIV positive
mothers in Kabarole district, Uganda. East Afr Med J. 2008;85(4):16270.
17. International HIV AIDS Alliance. Expanding the role of people living with
HIV/AIDS in Uganda: the Networks Project 20062009. Hove: International HIV
AIDS Alliance; 2009 [cited 2011 Nov 12]. Available from: http://www.
aidsalliance.org/includes/Publication/Networks_project_Uganda.pdf.
18. Kim YM, Kalibala S, Neema S, Lukwago J, Weiss DC. Meaningful
involvement of people living with HIV/AIDS in Uganda through linkages
between network groups and health facilities: an evaluation study. Psychol
Health Med. 2012;17(2):21322.
19. Hodgson I, Nakiyemba A, Seeley J, Bitira D, Gitau-Mburu D. Only connect the role of PLHIV group networks in increasing the effectiveness of Ugandan
HIV services. AIDS Care. 2012. doi:10.1080/09540121.2012.656568.
20. Parkhurst J, Weller I, Kemp J. Getting research into policy, or out of
practice, in HIV? Lancet. 2010;375(9724):14145.
21. Nhamo M, Campbell C, Gregson S. Obstacles to local-level AIDS
competence in rural Zimbabwe: putting HIV prevention in context. AIDS Care.
2010;22(Suppl 2):16629.
22. Campbell C, Cornish F. Towards a ‘‘fourth generation’’ of approaches to
HIV/AIDS management: creating contexts for effective community mobilisation. AIDS Care. 2010;22(Suppl 2):156979.
23. Nakibinge S, Maher D, Katende J, Kamali A, Grosskurth H, Seeley J.
Community engagement in health research: two decades of experience from a
research project on HIV in rural Uganda. Trop Med Int Health. 2009;14(2):
1905.
24. Person B, Cotton D. A model of community mobilization for the prevention
of HIV in women and infants. Prevention of HIV in Women and Infants
Demonstration Projects. Public Health Rep. 1996;111(Suppl 1):8998.
25. Sarkar S. Community engagement in HIV prevention in Asia: going from
‘for the community’ to ‘by the community’ must we wait for more evidence?
Sex Transm Infect. 2010;86(1):23.
26. Travers R, Wilson MG, Flicker S, Guta A, Bereket T, McKay C, et al. The
greater involvement of people living with AIDS principle: theory versus practice
in Ontario’s HIV/AIDS community-based research sector. AIDS Care.
2008;20(6):61524.
27. Schneider H, Hlophe H, Van Rensburg D. Community health workers and
the response to HIV/AIDS in South Africa: tensions and prospects. Health Policy
Plan. 2008;23(3):17987.
28. International HIV AIDS Alliance and Pamoja Consulting. HIV related
maternal mortality programme. End of program evaluation report. Kenya
Country Report. Hove: International HIV AIDS Alliance; 2011.
29. Kielmann K, Cataldo F. Tracking the rise of the ‘‘expert patient’’ in evolving
paradigms of HIV care. AIDS Care. 2010;22(Suppl 1):218.
30. Odhiambo D, Gatua E. Strengthening PLHIV networks for policy, advocacy
and stigma reduction. In: Proceedings of the 17th International AIDS
Conference; 2008 Aug 38; Mexico City. Abstract THAE0202.
31. UNAIDS. The greater involvement of people living with HIV (GIPA): policy
brief. Geneva: UNAIDS; 2007.
32. Perez F, Mukotekwa T, Miller A, Orne-Gliemann J, Glenshaw M, Chitsike I,
et al. Implementing a rural programme of prevention of mother-to-child
transmission of HIV in Zimbabwe: first 18 months of experience. Trop Med Int
Health. 2004;9(7):77483.
33. Rajabiun S, Mallinson RK, McCoy K, Coleman S, Drainoni ML, Rebholz C,
et al. ‘‘Getting me back on track’’: the role of outreach interventions in
engaging and retaining people living with HIV/AIDS in medical care. AIDS
Patient Care STDS. 2007;21(Suppl 1):S209.
34. Bärnighausen T, Bloom DE, Humair S. Human resources for treating HIV/
AIDS: needs, capacities and gaps. AIDS Patient Care STDS. 2007;21(11):799
812. doi: 10.1089/apc.2007.0193.
35. UNICEF. State of the World’s Children. Statistical tables. New York: UNICEF;
2011 [cited 2012 Mar 20]. Available from: http://www.unicef.org/sowc2011/
pdfs/SOWC-2011-Statistical-tables_12082010.pdf.
HIV-1 transmission. J Acquir Immune Defic Syndr. 2004;37:16206.
8
37. Farquhar C, Mbori-Ngacha DA, Bosire RK, Nduati RW, Kreiss JK, John GC.
Partner notification by HIV-1 seropositive pregnant women: association with
infant feeding decisions. AIDS. 2001;15:8157.
38. Larsson EC, Thorson A, Pariyo G, Conrad P, Arinaitwe M, Kemigisa M, et al.
Opt-out HIV testing during antenatal care: experiences of pregnant women in
rural Uganda. Health Policy Plan. 2012;27(1):6975.
39. Auvinen J, Suominen T, Välimäki M. Male participation and prevention of
human immunodeficiency virus (HIV) mother-to-child transmission in Africa.
Psychol Health Med. 2010;15(3):288313.
40. World Health Organization Maximizing Positive Synergies Collaborative
Group; Samb B, Evans T, Dybul M, Atun R, Moatti JP, Nishtar S, et al. An
assessment of interactions between global health initiatives and country
health systems. Lancet. 2009;373(9681):213769.
41. Kironde S, Klaasen S. What motivates lay volunteers in high burden but
resource-limited tuberculosis control programmes? Perceptions from the
Northern Cape province, South Africa. Int J Tuberc Lung Dis. 2002;6(2):
10410.
42. Celletti F, Wright A, Palen J, Frehywot S, Markus A, Greenberg A, et al. Can
the deployment of community health workers for the delivery of HIV services
represent an effective and sustainable response to health workforce
shortages? Results of a multicountry study. AIDS. 2010;24(Suppl 1):S4557.
9
Dilmitis S et al. Journal of the International AIDS Society 2012, 15(Suppl 2):17990
Letter to the Editor
Language, identity and HIV: why do we keep talking about
the responsible and responsive use of language? Language
matters
Sophie Dilmitis1, Olive Edwards2, Beri Hull§,3, Shari Margolese4, Naisiadet Mason5, Angelina Namiba6,
Moono Nyambe7, Susan Paxton8, Silvia Petretti9, Gracia Violeta Ross10, Alice Welbourn11 and
Anna Zakowics7
§
Corresponding author: Beri Hull, International Community of Women Living with HIV Global, 1345 Emerald Street, NE, Washington, DC 20002, USA. Tel: (202)
397-8488. ([email protected])
Abstract
Language matters. It impacts on how we think about ourselves, as individuals within our families and within society. As
advocates and activists, we constantly use language as a tool to effect change. People living with HIV have been critical in
shaping this language over the last 30 years and still play a central role in ensuring that new discourse in the HIV field does not
stigmatize, but rather that it catalyzes empowerment for our community members. In this annotation, we seek to shift the
language used in relation to ourselves, our medical condition, our bodies, our identities and the events we face, towards
something more life-enhancing, self-affirming and positive in outlook.
Keywords: people living with HIV; women living with HIV; vertical transmission; MTCT; identity; terminology;
language.
Received 13 June 2012; Revised 14 June 2012; Accepted 15 June 2012; Published 11 July 2012
Copyright: – 2012 Dilmitis S et al; licensee International AIDS Society. This is an open access article distributed under the terms of the Creative Commons Attribution
is properly cited.
Discussions
Language matters. It impacts on how we think about
ourselves, as individuals within our families and within
society. Our words are the tools we use to share our
experiences and to create shared visions of the future.
A simple shift in language can speak volumes not only
about where we are but where we would like to be. When
we make our language inclusive, we break down barriers
and build new bridges for greater mutual respect and
understanding.
As advocates and activists, we constantly use language as a
tool to effect change. We think about how our words affect
others, and we reflect on the words others use to learn
what language is damaging and what language is constructive
and enabling. We listen, and we act and we lobby others to
do the same. Language can make all the difference towards
achieving our goals.
People living with HIV have been crucial in shaping this
language over the last 30 years and still play a central role
in ensuring that new discourse in the HIV field does not
stigmatize, but rather that it catalyzes empowerment for our
community members. As a community of people living with
HIV around the world, we represent diverse groups in
constant change. Language is not static, and what is appropriate today, may not be in future years. As our under-
standing of HIV grows and the reality of living with HIV
changes in response to improvements in treatment care and
support, the language used to describe these realities must
also change.
One big challenge, which we face with language as
found in medical textbooks, is that it focuses on managing, avoiding or eradicating disease, rather than enhancing
health. Therefore, whilst the WHO definition of health
(‘‘Health is a state of complete physical, mental and social
well-being and not merely the absence of disease or
infirmity.’’ Preamble to the Constitution of the World Health
Organization as adopted by the International Health Conference, New York; 1946 June 1922) is essentially positive
and life-enhancing in concept and tone, we are immediately
and unfortunately faced with the language of medical textbooks, which is focused on ‘‘ending disease’’ (two negative
words) rather than on ‘‘promoting health’’ (two positive
words).
In this annotation therefore, we seek to advocate to
shift the language used in relation to ourselves, our medical condition, our bodies, our identities and the events we
face, towards something more life-enhancing, self-affirming
and positive in outlook. Much of the wording we offer
may still be perceived as negative in tone, so we still
have a long way to go. Nonetheless, we offer these initial suggestions as some first steps to promote research,
1
discussion, reflection and action to harness the wealth
of academic research of linguists, philosophers, psychiatrists and others to all of our own work in the arena
of HIV. Below are some of the terms that we, as women
and mothers living with HIV, would like to see challenged and changed as we continue a dialogue with key
decision-makers, enabling us to have safe, planned pregnancies, healthy babies, and to stay alive and healthy
ourselves.
Language that puts people first
People living with HIV instead of HIV-infected or
HIV-positive person
When we use language that puts people first, we acknowledge ourselves and others as fellow human beings. For
example, ‘‘people living with HIV’’ puts the individual first
rather than ‘‘infected people’’, which puts the virus first.
Similarly, when we say people who are, or have been in
prison, or people who engage in sex work, or people who use
drugs, we are making a distinction between ‘‘being’’ and
‘‘doing’’. It is important to acknowledge that those of us who
have been, or are, in prison, or use drugs cannot be defined
and reduced only to those experiences. By defining us as
people first, we affirm and emphasize our shared humanity,
and we acknowledge that our identities, just as the identities
of all human beings, are nuanced, evolving, and layered. The
Convention on the Rights of Persons with Disabilities takes
this one step further, by specifically talking about ‘‘persons’’
as individual humans, rather than about ‘‘people’’ as a mass
(http://www.un.org/disabilities/convention/conventionfull.
shtml). The active use of verbs is also critical, as this
further emphasizes the central role of the individual and
avoids making a person passive in a situation, for example, people living with HIV as against people infected
with HIV.
People living with HIV instead of PLHIV
Spelling out people living with HIV or women living with
HIV is preferable to highlight that actual persons are being
referred to rather than using an abbreviation. Using acronyms when referring to people can dull awareness of the
person or people and adds to a sense of being labelled
and the loss of our identity as human beings. Using the
whole phrase puts people at the centre of the issue being
outlined.
HIV or AIDS instead of HIV/AIDS
In our efforts to raise awareness of HIV and to change public
perceptions, we encourage the use of the term that is
most specific and appropriate in the context to avoid confusion between HIV (a virus) and AIDS (a clinical syndrome).
Examples include ‘‘people living with HIV’’, ‘‘HIV prevalence’’,
‘‘HIV prevention’’, ‘‘HIV testing and counselling’’, ‘‘HIV-related
disease’’, ‘‘children orphaned by AIDS’’, ‘‘AIDS response’’,
‘‘national AIDS programme’’ and ‘‘AIDS service organization’’.
We appreciate that UNAIDS has already recognized the
need for this kind of accuracy and specificity in its
Terminology Guidelines (http://www.unaids.org/en/media/
unaids/contentassets/documents/unaidspublication/2011/
JC2118_terminology-guidelines_en.pdf).
Avoiding the use of the word ‘‘infection’’ and its
derivatives
Unless ‘‘infection’’ is an essential word to use for understanding, people living with HIV prefer more neutral words,
for example, ‘‘One in seven people who acquire HIV globally
do so perinatally, accounting for approximately 400,000
new children living with HIV annually’’. This is because, in
an English thesaurus, the word ‘‘infection’’ is associated with
‘‘corrupt, dirty, tainted’’. Alternative, more neutral words,
such as ‘‘acquire’’ and ‘‘transmit’’ can usually be substituted
without any change in meaning.
Comprehensive prevention of vertical transmission instead
of MTCT
‘‘Mother-to-child transmission’’ (MTCT) is perceived to have
an accusatory tone, blaming the mother for ‘‘transmitting’’
the virus to her child, which can have negative ramifications
on the mother (e.g. criminalization, forced sterilization,
physical and emotional abuse by family members). Focusing
on the event, rather than the persons involved removes the
onus, blame and guilt for transmission of HIV to the baby
solely from the mother. This simple change in term from
MTCT turns the focus away from women being ‘‘vectors of
transmission’’. Women find comprehensive prevention of
vertical transmission less accusatory and more conducive to
male involvement; it also has the potential to increase access
to services.
Stopping or ending vertical transmission instead of
elimination
The term ‘‘elimination’’, in the context of vertical transmission, fails to recognize how HIV affects many aspects of
people’s lives and how it can form a part of their identity.
Therefore, the term ‘‘elimination’’ can be perceived as
threatening to one’s existence and, if taken out of context
and without qualifying terms, can evoke fear and be disempowering for people living with HIV. For example, it
may be misunderstood to mean eliminating women living
with HIV or infants living with HIV in order to eliminate
‘‘mother-to child’’ transmission. For those who do not
support the sexual, reproductive, and human rights of
women living with HIV, the term may justify the use of
any means to achieve ‘‘elimination,’’ including the criminalization of all HIV exposure or transmission (see, for
example, The Global Criminalisation Scan and the website
of The Global Commission on HIV and the Law, and also
those individual cases where women living with HIV have
been prosecuted for not preventing vertical transmission,
or have been penalised by the criminal justice system for
being pregnant), mandatory HIV testing, and coerced or
forced sterilizations. Even if HIV transmission is averted
in a child, that child will still have to grow up in a world
with HIV and will still be impacted by the virus. Whilst HIV
2
may no longer be in the child’s growing body, he or she
will still have to deal with HIV, including threats to their
identity.
Supportive and sensitive language is critical in our efforts
to achieve our goals towards an HIV-free generation and
support those who continue to care for an HIV-free generation but who continue to live with HIV. It can empower us
and motivate us to take the step to access necessary services
to stay alive, stay healthy and to ensure healthy lives for our
children.
We invite all stakeholders in their daily work and life to
further reflect on their choice of language in research, policy
making and programming to ensure that terms are clear, not
clouded by ambiguity, that they do not perpetuate or play
into stereotypes, and do not hurt or marginalize the very
people they seek to support.
1
Independent Consultant, Harare, Zimbabwe; 2Jamaican Network of Women
Living with HIV, Enson City, Spanish Town, St., Catherine,
Jamaica; 3International Community of Women Living with HIV Global,
Washington, DC, USA; 4Independent Community Consultant, Toronto,
Canada; 5Women Fighting AIDS in Kenya, Nairobi, Kenya; 6HIV I-Base, London
SE1 0BB, United Kingdom; 7Global Network of People Living with
HIV, Amsterdam, The Netherlands; 8Asia-Pacific Network of People Living
with HIV, Lumpini, Pathumwan Bangkok 10330, Thailand; 9Positively UK,
London EC1V 1LR, United Kingdom; 10Bolivian Network of People Living with
HIV and AIDS (REDBOL) Edif, Bolivia; 11Salamander Trust, London EC1V 1LR,
United Kingdom
Competing interests
All authors contributed equally to the writing, revisions, and approved the final
version of the annotation.
3
Journal Information
About the journal
The Journal of the International AIDS Society, an official journal of
the Society, provides a peer-reviewed, open access forum for
essential and innovative HIV research, across all disciplines.
All articles published by the Journal of the International AIDS
Society are freely accessible online. The editorial decisions are
made independently by the journal’s editors-in-chief.
Email: [email protected]
Website: http://www.jiasociety.org
eISSN: 1758-2652
Editorial board
Editors-in-Chief: Susan Kippax (Australia),
Papa Salif Sow (Senegal), Mark Wainberg (Canada)
Executive Editor: Shirin Heidari (Switzerland)
Managing Editor: Mirjam J Curno (Switzerland)
Editorial Board:
Quarraisha Abdool Karim (South Africa)
Dennis Altman (Australia)
Joe Amon (United States)
Judith Auerbach (United States)
Francoise Barré-Sinoussi (France)
Chris Beyrer (United States)
Nomita Chandhiok (India)
Mark Cotton (South Africa)
Mary Crewe (South Africa)
John N. Erni (China)
Alex Ezeh (Kenya)
Nathan Ford (South Africa)
Diane Havlir (United States)
Kuan-Teh Jeang (United States)
Fatima Juarez (Mexico)
Elly Katabira (Uganda)
Sukhontha Kongsin (Thailand)
Ivette Lorenzana de Rivera (Honduras)
Kathleen MacQueen (United States)
Julio Montaner (Canada)
Hector Perez (Argentina)
Deborah Posel (South Africa)
Subhasree Raghavan (India)
Naomi Rutenberg (United States)
Seema Sahay (India)
Gabrielle Scarlatti (Italy)
Amalio Telenti (Switzerland)
Marco Vittória (Switzerland)
Ian Weller (United Kingdom)
Alan Whiteside (South Africa)
Yazdan Yazdanpanah (France)
Publisher
The Journal of the International AIDS Society is published by:
International AIDS Society
Avenue de France 23
1202 Geneva
Switzerland
Tel: +41 (0) 22 710 0800
Fax: +41 (0) 22 710 0899
Email: [email protected]
Website: http://www.iasociety.org
Indexing/abstracting
The Journal of the International AIDS Society is indexed in a
variety of databases including PubMed, PubMed Central,
MEDLINE, Science Citation Index Expanded and Google Scholar.
Advertising, sponsorship and donations
Please contact the editorial office if you are interested in
advertising on our journal’s website. We also gladly receive
inquiries on sponsorship and donations to support open
access publications from authors in low- and middle-income
countries.
Supplements
The Journal of the International AIDS Society publishes
supplements, special issues and thematic series on own
initiative or based on proposals by external organizations
or authors. Inquiries can be sent to the editorial office at
[email protected]. All articles submitted for publication
in supplements are subject to peer review. Published
supplements are fully searchable and freely accessible online
and can also be produced in print.
Disclaimer
The authors of the articles in this supplement carry the
responsibility for the content and opinions expressed therein.
The editors have made every effort to ensure that no
inaccurate or misleading content or statements appear in this
supplement. However, in all cases, the publisher, the editors
and editorial board, and employees involved accept no liability
for the consequences of any inaccurate or misleading content
or statement.
Volume 15, Supplement 2,
July 2012
http://www.jiasociety.org/index.php/jias/issue/view/1459

pdf - complete supplement - Journal of the International AIDS Society

Transcription

Similar documents

Babies born from HIV/AIDS positive mothers

Reach Out brochure - Reach Out Nkokonjeru Parish Reach Out

B U CA I

Omorebokhae

Balancing fear with Efficacy: The case of Intersexions

Standard Chartered Kuala Lumpur Marathon 2010 PT Foundation

Archived Field Experiences Aarti Agarwal, HIV

English - Women In Europe

PDF | 14.6mb

l`actuel sur rue