Community-based services for key populations (MSM, IDU, sex workers) focus on interpersonal, community, and structural interventions. At the interpersonal level, services include peer education, outreach, workshops, and condom/needle distribution. Community services center around drop-in clinics providing testing, treatment, and support groups. Structural interventions advocate for rights, provide alternative incomes, and implement policies like needle exchange. However, major gaps remain in accessing adequate, quality services. Social factors like stigma, discrimination, and restrictive policies also limit service provision and uptake for key populations.

1. Rapid Literature Review
Community Mobilization and the Six Programmatic Areas Outlined in
the “Towards an improved investment approach
for an effective response to HIV/AIDS”
January 20, 2012
Tiffany Lillie, PhD MHS

2. Table of Contents
Table of Contents………………………………………………………………… 2
Acronym List……………………………………………………………………… 3
Introduction……………………………………………………………………….. 4
Methods…………………………………………………………………………... 5
Findings…………………………………………………………………………... 6
Key Populations (MSM, IDU, Sex Work)…………………………….... 6
Prevention to Mother to Child Transmission………………………….. 10
Behavior Change Programs………………………………………….... 13
Condom Promotion and Distribution………………………………….. 16
Treatment, Care, and Support.……………………………………….... 19
Male Circumcision……………………………………………………….. 24
Six Programmatic Questions on the Community’s Role in the
Scale-up of Services……………………………………………………………. 27
1. Which specific elements are communities uniquely
positioned to address?................................................................. 27
2. How do we define community in this work—especially local
communities?................................................................................ 27
3. What are the principles of the uniqueness of civil society in the
HIV response?.............................................................................. 28
4. How can the service delivery role be strengthened at the
same time as the advocacy/accountability role?.......................... 29
5. How do we avoid undermining the role of advocacy in
scale-up?...................................................................................... 29
6. What is the role of different categories of community
organizations (indigenous, international, representative,
International NGO, faith, ethnic or identify based organization,
etc) and are there conflicts between different roles?................... 31
Key Themes and Conclusions………………………………………………..... 33
References…………………………………………………..………………….... 38
2

3. Acronyms
AMPATH Academic Model for Providing Access to Healthcare
ART Antiretroviral Therapy
ARV Antiretroviral
CBO Community-Based Organization
CSO Civil Society Organization
DREAM Drug Resources Enhancement against AIDS and Malnutrition
FBO Faith Based Organization
HTC HIV Testing and Counseling
IDU Injection Drug Users
IF Investment Framework
INGO International Non-Governmental Organization
MC Male Circumcision
MSM Men who have Sex with Men
NGO Non-Governmental Organization
OI Opportunistic Infections
PLHIV People Living with HIV
PMTCT Prevention to Mother to Child Transmission
PSI Population Services International
RFP Request for Proposal
SW Sex Workers
TALC Treatment Advocacy and Literacy Campaign
TASO The AIDS Support Organization
TMC Traditional Male Circumcision
UNAIDS United Nations Office of HIV/AIDS
UNFPA United Nations Population Fund
WHO World Health Organization
ZPCT Zambia Prevention, Care and Treatment Partnership
3

4. Introduction
Community Mobilization is a key component of the new investment framework
outlined by Schwartlander et al (Lancet 2011) to achieve universal access to life-
saving HIV prevention, care, treatment and support services in a cost-effective
manner. Schwartlander et al (2) defines community mobilization as “…when a
particular group of people becomes aware of a shared concern or common need,
and together decides to take action in order to create shared benefits.” The
investment framework includes a strong focus on the need to strengthen
community-based responses to achieve universal access to services.
Community mobilization can be stimulated through internal needs and motivation
or can be supported through external sources. The more sustainable is the
former approach since they are usually based on internal, as opposed to
external, resources.
Schwartlander et al describe six programmatic areas that have a direct affect on
the risk and transmission of HIV as well as on morbidity and mortality. The six
programmatic areas include prevention of mother-to-child transmission (PMTCT);
condom promotion and distribution; key populations [sex work (SW), men who
have sex with men (MSM), and injection drug users (IDU)]; treatment, care, and
support to people living with HIV/AIDS; male circumcision; and behavior change
programs. The aim of this rapid literature review was to investigate the services
that are currently being implemented at the community level within these six
programmatic areas and the critical enablers, as well as the gaps and challenges
in these services.
It has been noted by a number of public health specialists, especially Kelly and
Birdstall (2010), of the dilemma between civil society organizations (CSOs) in
service delivery verses their advocacy/accountability role. CSOs have
increasingly become implementing partners in the rapid scale-up of HIV/AIDS
services. In doing so, a conflict of interest may have developed in these CSOs
since they are receiving funds from the very bodies that they would target for
advocacy. A brief discussion on how the scale-up of services has affected civil
society organizations’ (CSOs) ability to act as both service providers and
advocates for the future response is highlighted by six questions. Common
themes and conclusions are also discussed.
4

5. Methods
The objective of the rapid literature review was to provide an overview of different
kinds of community mobilization activities and community-based services in each
of the 6 basic programmatic areas and the critical enablers. The overview
explored what services are currently being provided, and where major gaps lie in
the provision of services at a community level. The literature review and analysis
was also intended to address the six questions outlined by UNAIDS, arising from
initial consultations on the Investment Framework (IF) with civil society partners,
which discussed issues such as community’s unique ability to implement HIV
interventions, their advocacy verses service delivery role, and the role of different
categories of CSOs and conflicts between them.
Given the time restraints of the literature review, the predominate search engines
used where PubMed and the UN/WHO web pages. The search terms used were
“community” or “community mobilization” paired with “HIV.” Finer searches
where then used using the above terms coupled with MSM, IDU, SW, PMTCT,
behavior change, condoms, antiretroviral therapy (ART), HIV testing and
counseling (HTC), palliative care, people living with HIV (PLHIV), and male
circumcision (MC). The journal articles and documents found through these
sources made up the references used for the six programmatic areas. The
outcome was about twenty to forty resources per programmatic area.
The above search did not render a substantial number of resources to address
the six questions outlined by UNAIDS’s RFP. A selected search was conducted
for this portion of the literature review and was based predominately on the 2010
supplement in AIDS Care on Community Mobilization Vol 22(S2). Grey literature
was obtained from papers’ table of resources as well as supplemented by
resources found in the above search.
The limitations to the above search were that it was done is a limited timeframe,
and could not investigate other search engines. In addition, some search
engines could not be accessed without a subscription such as CINHL and
PsycINFO.
5

6. Findings
Community Based Services for Key Populations (MSM, IDU, Sex
Work)
Community mobilization activities and community-based services for key
populations including men who have sex with men (MSM), injecting drug users
(IDU) and sex workers (SW) are at the interpersonal, community and
structural/environmental levels.
Interpersonal Interventions (e.g. individual/group) included but are not limited to:
• Safe sex workshops and trainings (e.g. skill building, negotiation, increase
self-efficacy) (UNAIDS, 2006; Joshi & Dhillon, 2010; Chiao et al, 2009;
Jana et al, 2004)
• Other trainings (e.g. leadership, advocacy)
(WHO/UNAIDS/GIZ/MSMGF/UNDP, 2011)
• Peer leader programs/Peer education (Moreau et al, 2007; UNAIDS (2),
2006; Joshi & Dhillon, 2010; WHO 2011; WHO 2010;
WHO/DFID/Norwegian Embassy 2010; Chiao et al, 2009; UNAIDS (3),
2006; PSI, 2011)
• Outreach (e.g. condom distribution, information/education, needle
exchange, referrals) (WHO 2011; WHO/UNAIDS/GIZ/MSMGF/UNDP,
2011; WHO/UNODC/UNAIDS, 2009; WHO, 2010; WHO/DFID/Norwegian
Embassy, 2010)
• Outreach tied to services (e.g. HTC, STI, treatment, drop-in centers)
(WHO 2011; WHO 2008; WHO 2009)
• Behavior change activities (WHO/UNAIDS/GIZ/MSMGF/UNDP, 2011;
WHO 2010; WHO/DFID/Norwegian Embassy 2010)
• IEC materials (UNAIDS, 2006; Joshi & Dhillon, 2010; WHO, 2011)
• Provision of condoms (Joshi & Dhillon, 2010;
WHO/UNAIDS/GIZ/MSMGF/UNDP, 2011; WHO, 2008; PSI, 2011)
These activities are not mutually exclusive and often overlap with each other.
Population Services International (PSI) provides the example of a peer education
program in Maputo, Mozambique. The peer educators are former or current sex
workers, and distribute condoms and IEC materials in local communities. They
encourage sex workers and clients to attend a drop-in center where they access
STI and HIV testing services. Another interpersonal strategy is to have peers act
as outreach workers (WHO 2011; WHO/UNAIDS/GIZ/MSMGF/UNDP, 2011;
WHO/UNODC/UNAIDS, 2009; WHO, 2010; WHO/DFID/Norwegian Embassy,
2010. The outreach workers are usually sex workers, injection drug users and/or
men who have sex with men and are more likely to understand the peers’ lives
better than other types of outreach workers. The outreach workers are better
able to discuss topics such as drug use, sex, and prevention methods in a
compassionate and knowledgeable manner.
6

7. The key to most of the interpersonal/group interventions for vulnerable
populations is to ensure that they reach the populations most at risk, and provide
them with a safe space to discuss and evaluate their level of risk. Healthy
practices are discussed and materials such as condoms and clean needles are
often supplied to ensure practice. Interventions are socially and culturally
appropriate and mirror the population’s reality. For example, Joshi & Dhillon
(2010) implement a multi-component intervention and one activity is to have the
transgender community develop their own messages and images for posters.
The empowering workshops that accompanied the material development
resulted in more open discussions around transgender issues.
Community Interventions include but are not limited to:
• Safe spaces (e.g. drop-in centers) (UNAIDS, 2006; WHO, 2011; WHO,
2010; PSI, 2011)
• Legal advice (UNAIDS, 2006)
• Websites/email (UNAIDS, 2006)
• Building partnerships between key population organizations (Pathfinder,
2008; UNAIDS, 2006)
• Community-based HIV Testing and Counseling and Community-based
treatment (Joshi & Dhillon, 2010; WHO/UNAIDS/GIZ/MSMGF/UNDP,
2011; WHO 2010)
• Specialized treatment centers (e.g. STI, routine check-ups, treatment of
OIs) (WHO 2011; WHO/UNAIDS/GIZ/MSMGF/UNDP, 2011; WHO 2008)
• Linkages to other services (WHO/UNAIDS/GIZ/MSMGF/UNDP, 2011)
The community level interventions are often centered at drop-in centers that are
viewed as a safe place to go to access services such as STI testing and
treatment, HIV testing (and sometimes treatment), routine check-ups, support
groups, and condoms (UNAIDS, 2006; WHO, 2011; WHO, 2010; PSI, 2011).
Building key population networks and partnerships is viewed in the literature as
vital to advocate for human-right approaches and services as well as build a
community-based response that is sustainable (Pathfinder, 2008; UNAIDS,
2006).
Structural/Environmental
• Needle/syringe exchange (WHO 2009; WHO 2010;
WHO/DFID/Norwegian Embassy, 2010)
• Structural interventions (e.g. bathhouses, brothels) (WHO, 2011; Chiao et
al, 2009; Kerrigan et al, 2004)
• Advocacy for human rights and services (Pathfinder, 2008; UNAIDS 2009;
Swendeman et al, 2010; Jana et al, 2004)
• Alternative income projects (Swendeman et al, 2010)
• Occupational health interventions (e.g. Violence prevention, 100%
condom use) (WHO, 2011; Jana, 2004)
7

8. • Working with authority figures (police, government officials) (WHO, 2011;
WHO, 2008; WHO/DFID/Norwegian Embassy 2010)
The literature emphasizes the effectiveness of structural and environmental
interventions to reduce levels of risk among key populations. The Thailand 100%
Condom Policy is one of the earliest examples of how implementing a structural
level intervention can result in reducing STI and HIV/AIDS prevalence levels
(UNAIDS, 2000). Others have modified the Thailand intervention to use in
contexts such as Dominican Republic and Taiwan with success (Kerrigan et al,
2004; Chiao et al, 2009). Providing supplies such as clean needles and a drop-
box for used needles is an example of an environmental intervention that local
organizations have implemented. Local organizations also work with authority
figures and advocate for HIV/AIDS interventions that would otherwise not be
implemented without their actions. The Prevention HIV Project (PHP) in Vietnam
is an example of an organization working with police by involving them in work
groups and in project management (WHO/DFID/Norwegian Embassy, 2010).
PHP staff found that the police focused on arresting drug dealers verses drug
users since their participation in the project.
Gaps in Service Delivery for Key Populations at the Community Level
The major gap in the provision of services at the community level for key
populations is the actual dearth of services. Pathfinder (2008) reports that one of
the most underserved populations are injection drug users. The illegality of their
activities combined with poverty and stigma and discrimination drive them to
hide, not access health services, and limit their contact with prevention services
(Pathfinder, 2008). Female drug injectors have almost no services (WHO, 2010).
UNAIDS (2006) report that less than 1 and 20 men who have sex with men have
access to the HIV/AIDS services that they need. Even when services are
provided, they are not to the scale, quality or intensity that is necessary for
adequate coverage of the populations (Zhou et al, 2009). Poor linkages also
exist between service delivery points such as a non-governmental HIV testing
center to a government run ARV site (WHO, 2010).
Social Factors
Some of the social factors that are mentioned in the literature as restricting the
delivery and/or access of services for key populations include:
• Restrictive polices for harm reduction services (UNAIDS, 2009; WHO,
2010; Kerrigan et al, 2004)
• Stigma and discrimination (Pathfinder, 2008; Joshi & Dhillon, 2010;
(WHO/UNAIDS/GIZ/MSMGF/UNDP, 2011; UNAIDS 2009; WHO 2010;
WHO/DFID/Norwegian Embassy 2010)
• Gender inequalities (Pathfinder, 2008; Swendeman et al, 2010)
• Enforcement of laws towards illegal behaviors (drug use, paid sex, sexual
acts) which restricted HIV/AIDS prevention, treatment, care and support
8

9. programs (Pathfinder, 2008; UNAIDS 2009; WHO/DFID/Norwegian
Embassy 2010)
The literature discusses the social factors that prevent the implementation of
services (e.g. needle exchange, treatment, detoxification programs) to key
populations. The behaviors of the key populations are often stigmatized and
there are laws that forbade them, which increases the difficulty for key
populations to access services. Sex workers do not report rape or sexual assault
to the police since they are often not given equal protection under the law (WHO,
2011). The literature also gives numerous examples of how sex workers are
harassed by police, which is an additional barrier to reporting crime and seeking
protection (WHO, 2011). In Thailand, drug users do not access voluntary
treatment in fear of being identified by the police and being sent to prison (WHO,
2010). The criminalization of same-gender sexual activity allows police to harass
organizations that provide services to MSM, and puts MSM in danger of arrest
when talking to a physician about risky sexual behaviors
(WHO/UNAIDS/GIZ/MSMGF/UNDP, 2011).
Non-governmental organizations advocate for human-right approaches that
reduce key population’s vulnerability to HIV infection. A Malaysian example
demonstrates the complexity of how changing a prohibitive policy to a harm
reduction one is slow (Narayanan, Vicknasingam, Robson, 2011). NGOs
advocate for change with multiple stakeholders and oftentimes discussions are
stalled. The change in policy was helped by the fact that the current national
programs failed to produce positive outcomes and Malaysia did not reach the
2005 Millennium Development Goals for HIV/AIDS. Therefore, there were
multiple factors that aided in the change from a prohibitive to a harm reduction
policy (Narayanan, Vicknasingam, Robson, 2011).
Programmatic Factors
Some of the programmatic factors that are in the literature as restricting the
delivery and/or access of services for key populations include:
• Lack of capacity of CSOs to work with vulnerable populations which
challenged scale-up (e.g. technical and organizational) (Moreau et al,
2008; WHO, 2010)
• Fragmentation and duplication of services (WHO, 2011)
• Lack of community-based coordination (WHO, 2011; WHO, 2010)
• Weak partnerships between organizations
(WHO/UNAIDS/GIZ/MSMGF/UNDP, 2011; UNAIDS, 2009)
Programmatic factors are no less challenging. Services are desperately needed
but there is a lack of organizations that can adequately respond. Organizations
may not want to expand their services because of the stigma and restrictive
policies and/or they may not have the capacity to effectively work with key
populations. The fragmentation and duplication of services, the lack of
9

10. coordination, and weak partnerships at the community-level is noted by the
World Health Organization (2010, 2011) and UNAIDS (2009) as being additional
limitations in the response. Coordination needs to be strengthened so gaps can
be identified and interventions modified to fill those gaps. Stronger networks and
partnerships of key population organizations could result in a higher level of
advocacy, empowerment, and service delivery at the local level.
Community Based Services for Prevention to Mother-to-Child
Transmission
PMTCT services that are currently being implemented at the local level target
both the individual/group and community. The interventions that target the
individual/group include:
• Outreach activities by community-based health workers (paid or un-paid)
to increase knowledge and demand of PMTCT services, garner support
for services, reduce loss to follow-up, improve adherence to treatment,
increase support (e.g. emotional, information), and increase linkages
between services (Tomlinson et al, 2011; WHO, 2010; National
Department of Health/South Africa, 2008; PEPFAR, 2010; Gulaid, 2011)
• Peer support/Support groups for PLHIV women/mothers (PEPFAR, 2010;
Gulaid, 2011)
• Husband/male partner involvement in PMTCT services (WHO 2011;
O'Gorman, Nyirenda, & Theobald, 2010; Kasenga, Hurtig, & Emmelin,
2010; Karamagi et al, 2006; Bajunirwe & Murooza, 2005)
The interventions that target the community include:
• Community mobilization with organizations and groups to improve
awareness and utilization (e.g. PLWH, women’s groups) (PEPFAR, 2010;
Arulogun et al, 2007; National Department of Health/South Africa, 2008;
Gulaid, 2011)
• Training of traditional birth attendants to provide a range of PMTCT
services (e.g. counseling, voluntary testing, rapid testing, post-test
counseling, providing single dose nevirapine to mothers and infants)
(Wanyu et al, 2007; O'Gorman, Nyirenda, & Theobald, 2010; Perez et al,
2008)
• Community-based testing (Wanyu et al, 2007; PEPFAR, 2010)
• Integration of services (e.g. HIV testing in ANC/STI clinics) (Kasenga,
Hurtig, & Emmelin, 2010)
Outreach activities strive to increase knowledge about mother-to-child-
transmission and PMTCT services as well as increase demand at the community
level (Tomlinson et al, 2011; WHO, 2010; National Department of Health/South
Africa, 2008; PEPFAR, 2010; Gulaid, 2011). Arulogun et al report that up-take of
PMTCT services was low because of low population understanding and
knowledge of PMTCT. Some women did not understand that their baby could be
HIV negative when they are positive. Fitzgerald et al found that women are
10

11. presenting late in pregnancy and/or in advanced stages of HIV disease so
PMTCT services are less effective. Therefore, community mobilization and
interpersonal discussions about PMTCT is vital for increased understanding,
demand and utilization of services.
Women who are living with HIV play a large and supportive role to new mothers,
and help them navigate through the PMTCT services. Gulaid’s report highlights
key programs that build on existing PLHIV resources to increase demand, up-
take and adherence to PMTCT programs. One notable program is
mothers2mothers (M2M), which is implemented in nine countries (Gulaid, 2011).
The M2M’s model has mothers living with HIV act as mentors to new mothers to
improve their overall health and the health of their children. M2M increased up-
take of CD4 testing and treatment, and increased disclosure and infant testing
(Gulaid, 2011). The Network Support Agents project in Uganda is another
example of people living with HIV working in health clinics and communities to
increase up-take of PMTCT services (Gulaid, 2011). In the beginning of the
project, only 1,264 women accessed PMTCT services but three years later over
15,000 women accessed PMTCT (Gulaid, 2011).
The use of community-health workers and traditional birth attendants is another
mechanism to scale-up and improve PMCT services (Tomlinson et al, 2011;
WHO, 2010; National Department of Health/South Africa, 2008; PEPFAR, 2010).
Human resources are low in many settings and using other available personnel is
necessary. Overall, community workers aid in reducing loss to follow-up,
providing and increasing adherence to treatment, providing emotional and
information support, providing linkages to other HIV/AIDS services, providing pre-
and post- test counseling, and administering rapid testing. These workers are
often part of the community so are trusted and respected. They provide much
needed services in areas were highly trained health care staff are limited.
Gaps in Service Delivery for PMTCT at the Community Level
The major themes from the literature on the gaps and challenges in the provision
of PMTCT services at the community level mostly include social and
structural/environmental factors.
Social Factors
The social factors included:
• Lack of support (i.e. real or perceived) from key family members.
Partners/husbands were the most mentioned followed by mothers, mother-in-
laws, and grandmothers (Bwirire et al, 2008; Sarker et al, 2009; Peltzer et al,
2006; Bajunirwe & Muzoora, 2005; WHO 2011; Gulaid, 2011)
• Health care worker attitudes (Kasenga, 2010)
• Stigma and discrimination (Bwirire et al, 2008)
11

12. • Fear that the mother has to rely on artificial feeding which is connected to
social and cultural taboos (Bwirire et al, 2008; Sarker et al, 2009; Orne-
Gliemann et al, 2006)
• Low population knowledge of mother to child transmission and PMTCT
services as well as overall healthcare facilities. (Arulogun et al, 2007; WHO
2011; National Department/South Africa, 2008; Fitzgerald et al, 2010)
Support (either real or perceived) from key family members is an important factor
in mothers accessing PMTCT services. Husbands and male partners are the
most mentioned in the literature followed by mothers, mother in laws, and
grandmothers (WHO, 2011; O'Gorman, Nyirenda, & Theobald, 2010; Kasenga,
Hurtig, & Emmelin, 2010; Karamagi et al, 2006; Bajunirwe & Murooza, 2005). A
number of studies show that the husband’s attitudes, or their perceived attitudes,
on PMTCT influenced women’s decisions on whether to access PMTCT services
(WHO, 2011; Kasenga, Hurtig, & Emmelin, 2010; Karamagi et al, 2006;
Bajunirwe & Murooza, 2005). Bajunirwe & Murooza found that women who
thought that their husbands would approve of having a HIV test were about six
times more likely to report a willingness to be tested compared to women who
thought that their husbands would not approve. The lack of support (either real
or perceived) from key family members can also be a barrier to successful
utilization of PMTCT services. Peltzer et al found that mother’s or mother-in-
law’s childbirth experience greatly influenced the mother’s choice on whether to
deliver at home or not. The majority of PMTCT services are available in
hospitals; therefore, mother’s who deliver at home are less likely to access
services.
Stigma and discrimination reduces the utilization of PMTCT services. Women
report not accessing PMTCT because of the stigmatizing attitudes of health care
workers. The overall prevalence of stigma and discrimination of people living
with HIV at the community level is another barrier to accessing PMTCT. For
example, some expectant mothers fear that they have to rely on artificial feeding
if they access PMTCT, which is connected to social and cultural taboos in many
countries; therefore, they do not access services based on that fear.
Structural & Environmental Factors
Structural/Environmental
• Lack of accessible, acceptable and affordable services (e.g. long distances to
services, long wait times, transport cost, lack of rapid tests and/or HIV testing
services at sites, poor antenatal counseling) (Wanyu et al, 2007; Bwirire et al,
2008; Peltzer et al, 2006; Kasenga, 2010; O'Gorman, Nyirenda, & Theobald,
2010; Karamagi et al, 2006; Tomlinson et al, 2011)
• Lack of capacity of health care workers to provide quality care (Zachariah et
al, 2010; PEPFAR, 2010; Sarker, 2009; National Department of Health/South
Africa, 2008; WHO, 2011)
12

13. • Poor working environment for health care workers [e.g. work load, capacity
(e.g. uncomfortable discussing risk behaviors with clients), disruption of
services/supplies] (Sarker, 2009)
The literature reports a lack of accessible, acceptable and affordable PMTCT
services at the community level. Women note not accessing services because of
long wait times at the clinic and transport costs. Quality pre-test counseling is
key for women to access PMTCT services. Sarker found that there were
National Guidelines on how to appropriately provide pre-test counseling but the
actual practice varied a great deal. PMTCT covers a range of services and
Tomlinson et al found that services such as postnatal care and maternal mental
health support are lacking. Therefore, in some settings, the quality and
availability of all the necessary services to make a PMTCT program successful
are lacking.
Community Based Services for Behavior Change Programs
Behavior change programs are a prevention method to support positive individual
cognitive and behavioral determinants as well as to change hindering community
norms, create demand for services, affect pro-health policies, create an enabling
environment and influence other key factors to reduce transmission and
acquisition of the HIV virus. The community-based behavior change programs
that are in the literature are at the interpersonal, community and structural levels
and include:
Interpersonal (individual/group):
• Interpersonal discussions (e.g. individual/group) (Lipovsek et al, 2010)
• Peer group interventions/Support groups (e.g. in-depth sexual behavior
interviews, HIV/STD risk-reduction counseling) (Reza-Paul et al, 2008;
Mbeba et al, 2011; Van Rompay et al, 2008; Cornish & Campbell,
2009; Maticka-Tyndale & Barnett, 2010; Medley et al, 2009; Yang et al,
2011; Spaar et al, 2010; Sweat et al, 2006)
• Condom provision (Spaar et al, 2010; NIMH Collaborative HIV/STD
Prevention Trial Group, 2010; Lugalla et al, 2004)
• Outreach (Reza-Paul et al, 2008; Van Rompay et al, 2008)
• Training (e.g. improve knowledge, skills and other cognitive/behavioral
outcomes; training-of-trainers) (Babalola et al, 2001; Bradley et al,
2011)
• Behavior change programs at service delivery sites (Spaar et al, 2010)
• Referrals to HCT, care and support, and treatment (e.g. ARV and STI)
(Van Rompay et al, 2008)
• IEC material distribution (Sweat et al, 2006; Lipovsek et al, 2010;
Birdsall & Kelly, 2005)
Community:
13

14. • Community mobilization to increase knowledge, attitudes, and
behaviors as well as increase support for prevention interventions
(Reza-Paul et al, 2008; Babalola et al, 2001; Sweat et al, 2006)
• Street theatre (Van Rompay et al, 2008; Birdsall & Kelly, 2005)
• Public events (Lipovsek et al, 2010; Birdsall & Kelly, 2005)
• Diffusion through networks (Bradley et al, 2011)
Structural:
• Structural interventions (e.g. policies) (Sweat et al, 2006; Kerrigan et
al, 2006; Geeta et al, 2008; Cohen, Scribner, & Farley, 2008)
• AIDS education in schools (Lugalla et al, 2004)
Each of the above interventions is often not mutually exclusive but involve a
number of activities. For example, Van Rompay et al’s program trains outreach
workers, women’s group leaders and barbers as peer educators and include
cartoon-based educational materials and street theatre to inform the population
about HIV/AIDS issues. Spaar et al describes prevention interventions
implemented at ART sites, and they found that the majority offer condoms and
are modified to reach women and adolescents. Therefore, there is usually a mix
of activities in behavior change programs and they often do not rely on only one
intervention.
Peer education is one of the most popular community-based interventions (Reza-
Paul et al, 2008; Mbeba et al, 2011; Van Rompay et al, 2008; Cornish &
Campbell, 2009; Maticka-Tyndale & Barnett, 2010; Medley et al, 2009; Yang et
al, 2011; Spaar et al, 2010; Sweat et al, 2006). Peer education programs often
result in positive change in cognitive and behavioral factors such as knowledge,
attitudes, self-efficacy, condom use and reduction of partners. However, there is
less evidence of programs directly resulting in the reduction of STI/HIV/AIDS
incidence and prevalence levels. Medley et al (2009) conducted a meta-analysis
of peer education programs in developing countries and found that they had a
positive affect on knowledge, showed reduced equipment sharing for injection
drug users, and increased condom use but had a non-significant affect on
biomarkers such as STIs. Despite this lack of evidence on peer education
programs on biomarkers, they are still recommended to support positive
cognitive and behavioral determinants of at-risk populations.
Interventions such as community mobilization, street theatre, and diffusion
through networks are implemented to affect community-wide factors (Reza-Paul
et al, 2008; Babalola et al, 2001; Sweat et al, 2006 Van Rompay et al, 2008;
Birdsall & Kelly, 2005; Lipovsek et al, 2010). Community mobilization is a
favored intervention to garner support and action around certain health needs
and interventions. Community meetings, involving key stakeholders, and target
population participation in all aspects of a program’s development and
implementation are all examples of community mobilization activities. Street
theatre is used to dramatize complex topics in an entertaining and humorous
14

15. manner. One of its goals is to stimulate community discussions about taboo and
sensitive topics. Pelto & Singh (2010) implement a street theatre project to
reduce alcohol use and other HIV risk behaviors among married men in India.
Men from the community develop the scripts and are actors in the plays, which
increases acceptance of the messages.
Gaps in Service Delivery for Behavior Change at the Community Level
Preventing HIV transmission to reduce overall HIV/AIDS incidence and
prevalence rates is a long-term goal of most national and international programs.
Preventing transmission is complex and each country strategy needs to be
tailored to its unique social, cultural, and epidemiological context.
The major gaps and challenges in implementing behavior change programs
include:
• Lack of effective, measurable and scalable programs to reach universal
access (UNAIDS, 2007; UNAIDS (2), 2007; Piot et al, 2008; McCoy,
Kangwende, & Padian, 2010)
• Lack of implementation of evidence- and human-rights based combination
(e.g. behavioral, biomedical, and structural) prevention approaches
(Hankins & de Zalduondo, 2010; Coates, Richter, & Caceres, 2008;
Merson et al, 2008; Piot, 2008)
• Lack of leadership, coordination, accountability, investment and
consensus on key issues (UNAIDS, 2007)
• Lack of funding (Spaar et al, 2010; Piot et al, 2008)
• Gender inequalities (e.g. transactional sex, intergenerational sex, gender-
based violence) (UNAIDS (2), 2007; Spaar et al, 2010)
• Stigma and discrimination (UNAIDS (2), 2007; Spaar et al, 2010)
Getting prevention interventions right is no easy task. There are calls for more
effective, targeted, and coordinated responses (UNAIDS, 2007; UNAIDS (2),
2007; Piot et al, 2008; McCoy, Kangwende, & Padian, 2010). At the community
level, there are behavior change programs being implemented but they may only
be directed at increasing knowledge about HIV/AIDS and not aimed at
influencing other causal determinants to behavior such as community norms or
structural factors. Effective programs are also being implemented at the
community-level but they are often not to the scale, or coordinated with mutually
beneficial programs, necessary to influence population wide behavior change.
The capacity of non-governmental and civil society organizations needs to be
strengthened so effective programs are implemented to the quality, intensity and
scale necessary to effect both individual and community-wide change.
It is recommended that national programs provide a range of evidence-based
biomedical, behavioral and structural prevention interventions that meet their
specific social, cultural, and epidemiological context (Hankins & de Zalduondo,
2010; Coates, Richter, & Caceres, 2008; Merson et al, 2008; Piot, 2008).
15

16. National HIV/AIDS strategies need to know where their next 1000 HIV infections
are coming from and target prevention interventions to those populations and
areas. UNAIDS (2007) notes that coordination is key among implementers so
the response is more efficient and non-duplicative. UNAIDS (2007) also advises
on strong national leadership to direct the vision of the strategy to achieve its
goals.
Resource, cultural and gender barriers remain which diminishes the
effectiveness of prevention programs. Lack of funding for prevention programs
has been noted by several sources as a major constraint (Spaar et al, 2010; Piot
et al, 2008, UNAIDS (2), 2007). Stigma and discrimination prevail which affects
the response at all levels. It hinders politicians in supporting human-right
approaches, results in uncompassionate care of health care workers for people
living with HIV/AIDS, and influences women into not disclosing their status to
their husbands. Transactional and intergenerational sex are based on the social
and economic inequities of societies (UNAIDS (2), 2007; Spaar et al, 2010).
Women are in positions that make them behave in ways that they may not
otherwise if they were in a different economic, social, and cultural setting.
UNAIDS (2) outlines policy and programmatic actions to reduce gender
inequalities, gender-based violence, and intergenerational sex including
reviewing and reforming gender inequitable legislation as well as ensuring its
enforcement, implementing community-based programs to influence male norms
that rejects domestic violence and promotes sexual responsibility, and working
with other government sectors to reduce women’s vulnerability (e.g. keeping girls
in school and property rights).
Community Based Services for Condom Promotion and
Distribution
The effectiveness and importance of consistent and correct condom use is well
established in the literature. Community-based services for condom promotion
and distribution that are presented in the literature are at the individual,
community and structural levels. They include:
Interpersonal:
• Interpersonal approaches to increase knowledge, correct use, demand,
negotiation skills, partner communication and self-efficacy (Population
action international, 2008; Choi et al, 2008; Jones et al, 2008; WHO, 2009;
Zhongdan et al, 2008)
• Peer groups and social networks (Wang et al, 2011; ICASO, 2009;
Morisky et al, 2005)
• Condom distribution (Doyle et al, 2010; Zhongdan et al, 2008)
Community:
16

17. • Community-based distribution approaches (e.g. music shops, ice cream
parlors, beauty salons, theatres, stadiums) (Population action
international, 2008; UNFPA/WHO/PATH, 2005; Harris et al, 2011)
• Community mobilization to increase demand, correct and consistent use,
and empower individuals/groups for collective action (Blankenship et al,
2008; Williams & Campbell, 1999; Green et al, 2006)
• Condom promotion (Michielsen et al, 2010; Wade et al, 2010;
UNFPA/WHO/PATH, 2005; WHO, 2007)
• Condom provision at low cost or free of charge (WHO, 2009; WHO, 2007)
• Provision of lubricants (WHO, 2009)
• Linkages to or integration with other programs (e.g. HTC, PMTCT, STI,
ARV, youth services) (Population action international, 2008; Sabido et al,
2009).
Structural:
• Structural interventions (e.g. condom availability in MSM bathhouses,
brothels, Sonagachi Project) (Ko et al, 2009; Ghose et al, 2008; UNAIDS,
2000; Zhongdan et al, 2008)
• Advocacy for supportive polices and environment (UNFPA/WHO/PATH,
2005).
• Workplace condom promotion and provision (UNFPA/WHO/PATH, 2005)
• Social marketing through hair salons, barbershops, small entrepreneurs
(UNFPA/WHO/PATH, 2005)
Demand, Acceptability, and Use of Condoms
The above programs predominately aim to increase demand, acceptability and
use of condoms. Programs seeking to increase demand, acceptability, and
ultimate use of condoms are implemented at the individual, community and
structural levels. At the individual level, behavior change programs and peer
groups and networks have been used to influence individual cognitive and
behavioral outcomes to increase the demand, acceptability, and use of condoms
(Population action international, 2008; Choi et al, 2008; Jones et al, 2008; WHO,
2009; Zhongdan et al, 2008; Wang et al, 2011; ICASO, 2009; Morisky et al,
2005). Programs often target knowledge, attitudes, skills, self-efficacy, and
partner communication to increase the likelihood that condoms will be used in all
types of partnerships. Wang et al conducted a review of the effectiveness of
social networks in improving condom use and found that the majority improved at
least one condom use measure. Choi et al found that improving knowledge and
skills on female condoms increased use. On the community level, Blankenship
et al found that sex workers who had a higher sense of control over their work
were more likely to use condoms, which demonstrates that community
empowerment approaches positively affect health. Having condoms available in
physical structures such bathhouses and brothels increases demand,
acceptability, and use of condoms as well. Therefore, there are effective
17

18. prevention interventions that do positively influence the demand, acceptability,
and use of condoms.
Availability of Quality and Low-Cost Condoms
The availability of quality and affordable condoms are a prerequisite to use.
UNFPA/WHO/PATH report that advocacy to politicians, leaders, religious bodies,
and business men is important to increase support for the promotion of condoms
as well as to increase their availability. The provision of condoms and lubricants
for free or at low costs also is a factor in use. WHO stresses the importance of
providing quality condoms (both male and female) at an affordable price.
Condom social marketing is one program that aims to increase the availability of
quality and low-cost condoms at local distribution points to increase use. Harris
et al attempted to increase condom use among at-risk youth by distributing
condoms at salons, music stores and ice cream parlors. Cohen, Scribner, &
Farley outline four categories of structural interventions which increases the
availability and demand of condoms. They are 1) the availability of products (e.g.
condoms), 2) physical structures, 3) social structures and policies, and 4)
messages. All four of these categories are noted in the literature as successful
programs to implement to influence the availability, demand, acceptability and
use of condoms.
Gaps in Service Delivery for Condom Promotion and Distribution at the
Community Level
The major themes that emerge from the literature on the gaps and challenges in
implementing condom promotion and distribution programs at the community
level include:
• Lack of available, quality, and low-cost condoms at scale (WHO, 2009;
ICASO, 2009; UNFPA/WHO/PATH, 2005)
• Lack of demand (Population action international, 2008;
UNFPA/WHO/PATH, 2005)
• Address larger social and program barriers such as gender, religion and
moral beliefs, legal and policy issues, and structural constraints (ICASO,
2009; WHO 2009)
The lack of available, quality, and low cost condoms at a scale in which every
person has access to them is yet to be achieved. Supportive policies and funds
to purchase the mass of both male and female condoms necessary to reach
universal access is a challenge in most countries. Even at the individual level,
the high costs of female condoms make them unattainable to many. Advocacy to
policy makers and other key opinion leaders will aid in the development and
successful implementation of pro-condom policies, which will improve availability
and lower cost. Donors fund the acquisition of condoms but more needs to be
accomplished so every person who needs a condom has access to them.
18

19. Barriers to condom use, which affects demand, include personal myths,
perceptions, dislikes and fears as well as larger cultural and social barriers such
as gender and religion. The promotion of the consistent and correct use of
condoms can address some of these barriers in a socially desirable manner
through interpersonal communications, community mobilization, advocacy and
mass media. However, barriers will persist and innovative means will need to be
found to ensure that condoms are available and accessible. For example,
Birdstall and Kelly (2005) found that the majority of government institutions
provided condoms and a little over half of civil society organizations did;
however, only 14% of faith-based organizations (FBOs) distributed condoms.
There may be a lack of condoms available in communities that have a high
number of FBOs and distribution will have to be provided through other means.
Community Based Services for Treatment, Care, and Support for
People Living with HIV/AIDS
Community mobilization activities and community-based services for treatment,
care and support programs are at the interpersonal, community and structural
levels.
Interpersonal and Group Level Interventions
The interventions at the interpersonal/group level are:
• Involvement of HIV-positive individuals in delivering care, assisting in ARV
adherence, providing follow-up, acting as peer educators, increasing
demand for services, providing health education (Lyttleton, Beesey, &
Sitthikriengkrai, 2007; AIDSTAR-One BroadReach; AIDSTAR-One ZPCT;
AIDSTAR-One DREAM)
• Individual/Group support (i.e. risk reduction plans) (AIDSTAR-One TASO;
World Bank (2), 2011)
• Provision of Condoms (AIDSTAR-One TASO)
• Psychosocial support groups (Muñoz et al, 2011)
• Microfinance (Muñoz et al, 2011)
• Nutritional support for PLHIV (Ji et al, 2010)
• Assisting families affected by HIV/AIDS (Munthali, 2002)
The most notable community-based intervention at the interpersonal level is the
involvement of people living with HIV (PLHIV) in the delivery of treatment, care,
and support services (Lyttleton, Beesey, & Sitthikriengkrai, 2007; AIDSTAR-One
BroadReach; AIDSTAR-One ZPCT; AIDSTAR-One DREAM). Their involvement
ranges from acting as peer educators to aiding in the delivery of comprehensive
programs. The Drug Resources Enhancement against AIDS and Malnutrition
(DREAM) project has mothers who are living with HIV act as peer educators to
deliver health education provide support to other HIV-positive mothers. The
Zambia Prevention, Care and Treatment Partnership (ZPCT) and BroadReach
Healthcare Down Referral Model in South Africa both employ PLHIV as peer
19

20. educators and speakers to increase up-take of services and increase adherence.
Lyttleton, Beesey, & Sitthikriengkrai’s project involves PLHIV by aiding in follow-
up and increasing adherence to treatment. Hatcher et al found that patients who
received a PLHIV visit were more likely to enroll in treatment; therefore, PLHIV’s
involvement in services equates to better health outcomes.
Other behavior change programs include the development of risk reduction
plans, provision of condoms at specific services, providing nutritional support,
assisting HIV-affected families, and implementation of income generation
projects. World Bank (2) found that PLHIV in support groups had higher rates of
ARV adherence compared to those who were not involved in support groups.
Posse & Baltussen found that one of the largest barriers to treatment was the
lack of community and patient information, negative attitudes towards treatment,
and lack of family support. Therefore, promotion and information building at the
individual and community-level is key to increase up-take and acceptance of life-
prolonging services.
Community and Structural Level Interventions
Community/Structural:
• Community-based workers (i.e. paid and unpaid) to promote HIV testing
and counseling; increase ARV adherence; provide counseling, symptom
control, and welfare assistance; and provide palliative services. (Baiden
et al, 2007; Muñoz et al, 2011; AMPATH, BroadReach; TASO; ZPCT;
UYS, 2002; Nanney et al, 2010)
• Home- and Community-based HTC (Sweat et al, 2011; Khumalo-
Sakutukwa et al, 2008; Tedrow et al, 2011; Corbett et al, 2007;
Bateganya, Abdulwadud, & Kiene, 2007; WHO/UNAIDS, 2007; Choko et
al, 2011; Helleringer et al, 2009; Sekandi et al, 2011; Molesworth et al,
2010; Lindgren et al, 2011)
• Community-mobilization to increase support, demand, and utilization of
services (Sweat et al, 2011;Tedrow et al, 2011; Khumalo-Sakutukwa,
2008; World Bank (2), 2011)
• Advocacy for equitable access to comprehensive and complete treatment,
care and support services for PLHIV (Treatment advocacy and literacy;
Lyttleton, Beesey, & Sitthikriengkrai, 2007)
• Linkages/Referrals between prevention, treatment, care, and support
(Konate et al, 2011; HIV/AIDS Alliance; BroadReach; TASO; WHO, 2009;
WHO/UNAIDS, 2007; Hatcher et al, 2011)
Community-based workers, both employed and volunteer, are an important
component of treatment, care and support services implemented at the
community level (Baiden et al, 2007; Muñoz et al, 2011; AMPATH, BroadReach;
TASO; ZPCT; UYS, 2002; Nanney et al, 2010). Their tasks are to promote HIV
testing and counseling; increase ARV adherence; provide counseling, symptom
control, and welfare assistance; and provide palliative care services. Nanney et
20

21. al’s project is based in hospitals but organized teams of health care workers to
go into communities to provide a continuum of care. The trained volunteers and
health care workers are linked to community resources, which lead to more
people living with HIV (PLHIV) both accepting and assessing palliative care
services. Baiden et al found a high acceptance of using lay counselors and
home-based VCT in rural Ghana.
Community- and home-based HIV counseling and testing (HTC) is noted by
many researchers and practitioners as a way to scale-up testing in a culturally
appropriate manner (Sweat et al, 2011; Khumalo-Sakutukwa et al, 2008; Tedrow
et al, 2011; Corbett et al, 2007; Bateganya, Abdulwadud, & Kiene, 2007;
WHO/UNAIDS, 2007; Choko et al, 2011; Helleringer et al, 2009; Sekandi et al,
2011; Molesworth et al, 2010; Lindgren et al, 2011). Tedrow et al’s program
includes multiple components such as mobile HTC and post-test support as well
as forming community associations to increase awareness, support and
partnerships. Choko et al’s program uses an innovative model in which
individuals test themselves for HIV to increase acceptance and scale-up of HTC.
Community- and home based HTC increases access to services for harder-to-
reach groups as well as increases acceptance to being tested.
Organizations and networks of people living with HIV are strong actors in
advocating for a human-rights approach to treatment, care and support services.
The Treatment Advocacy and Literacy Campaign (TALC) in Zambia is making
major achievements in increasing access to services. In a recent
announcement, TALC congratulates the government in eliminating user fees at
both rural and urban clinics but notes that more needs to be done to improve
access. Lyttleton, Beesey, & Sitthikriengkrai report that the work of the Thai
Network for People Living with HIV/AIDS made treatment more accessible to
those who need it, and are continually engaged in national discussions to
improve services to those most in need.
Strong linkages between prevention, treatment, care and support programs are
vital in providing the continuation of care necessary for positive health outcomes
(Konate et al, 2011; HIV/AIDS Alliance; BroadReach; TASO; WHO, 2009;
WHO/UNAIDS, 2007; Hatcher et al, 2011). There are examples of strong
programs that do provide linkages between services in their programs. For
example, the TASO program in Uganda offers behavior change counseling,
offers HTC to the family, and employs lay workers to deliver ART to homes on a
weekly basis. The lay workers also monitor patients and provide referrals to
clinics for further care and psychosocial support. Konate et al’s program in
Burkina Faso integrates a peer-led prevention program with ARV treatment and
care services for high-risk women. However, loss to follow-up is common and
linkages between services can be weak. In Barr’s report, the Mozambique
example demonstrates how many people living with HIV are lost to follow-up and
do not seek or adhere to treatment. The report recommends that community-
21

22. based providers are in a unique position to offer a wide range of services, and
one of those services is helping PLHIV access services and adhere to treatment.
Gaps in Service Delivery for Treatment, Care, and Support Services at the
Community Level
The major gaps in the provision of services at the community level are:
• Lack of services (Baiden et al, 2007; Moon et al, 2011; Sekandi et al,
2011; Lindgren et al, 2011; WHO 2009; Nanney et al, 2010; Campbell et
al, 2011)
• Lack of human resources and capacity (Baiden et al, 2007; Jack et al,
2011; Fitzgerald et al, 2010; Olang'o, Nyamongo, & Aagaard-Hansen,
2010; Rujumba, Mbasaalaki-Mwaka, & Ndeezi, 2010; Barr, 2011)
• Institutional constraints for health care workers (work load, lack of support
services; limited space, lack of ARV for children) (Rujumba, Mbasaalaki-
Mwaka, & Ndeezi, 2010; AIDSTAR-One AMPATH; Campbell et al, 2011)
• Stigma and Discrimination (Baiden et al, 2007; Onyango, 2009)
• Gender inequalities (e.g. women and children caregivers) (Onyango,
2009; Kangethe, 2010)
Dearth of Services for Certain Populations and Locales
To have universal access to treatment, care and support services adequate
resources need to be available such as funding, infrastructure, human resources,
capacity building, community participation, involvement and support to CBOs in
providing services, continuous drug supplies, and information management
systems (WHO/SEARO/WPRO 2009; WHO/UNAIDS, 2007; Moon et al, 2011).
The literature notes that there are inadequate services, especially for specific
populations and locales. The most underserved populations are for key
populations and those who live in rural areas (Pathfinder, 2008; WHO, 2010;
UNAIDS, 2006; Zhou et al, 2009; WHO, 2009; Baiden et al, 2007; Moon et al,
2011; Nanney et al, 2010; Lidgren et al, 2010). The lack of services for key
populations is noted above, but several authors report the dearth of services for
those who live in rural areas as well. Services that are lacking in rural areas
include basic health care as well as HIV services such as HTC, ARV, and
palliative care (Baiden et al, 2007; Moon et al, 2011; Nanney et al, 2010; Lidgren
et al, 2010). Sekandi et al reports that there is a lack of HTC services in urban
as well as rural areas in Uganda; therefore, they are implementing a home-based
HIV counseling and testing project to increase up-take of testing.
Use of Volunteers in Bridging the Human Resource Gap
Human resources and their capacity is also a constraint in scaling-up services.
WHO/UNAIDS (2007) recommends that community-based organizations and
other civil society groups be sources of skilled lay people to increase the scale-
up of services. Unpaid community-based workers and volunteers are also being
22

23. used to fill important gaps in the health care system. However, having volunteers
bridge the human resource gap has its challenges and should be adequately
supported for it to be successful. Budlender’s report outlines how many
volunteers are under trained and under supported by organizations that they
work with. For example, one key item that home based care volunteers need are
gloves yet only 41% of volunteers received this assistance (Budlender, 2010).
Another finding was that volunteers are unpaid but they incur costs while
providing assistance such as paying for transport, buying their own materials,
and giving assistance to patients (Budlender, 2010). Capacity must also be
addressed. Rujumba, Mbasaalaki-Mwaka, & Ndeezi found that health care
workers’ capacity to provide HTC for children is limited and needs to be
strengthened. Therefore, using lay staff and volunteers are a means to address
the lack of health care workers but they need to be supported.
Olang’o, Nyamongo, & Aagaard-Hansen’s project involves volunteer community-
based workers who provide home-based care to people living with HIV. The
volunteer attrition rate is only 33% due to lack of support to the workers, difficult
working environment, and a lack of transparency between the NGOs and
volunteers. For example, volunteers describe how the non-paid nature of their
work places stress on their already stretched families. Women volunteers may
not have support from their husbands as the partners see it as a “waste of time.”
Olang’o, Nyamongo, & Aagaard-Hansen’s describe that if care giving were paid
work then more men would be employed, but this raises cultural and gender
issues as well. Women are seen as more compassionate and better able to
adequately care for sick individuals. Patients also are more comfortable with
women caregivers. Other reasons for low attrition rates include volunteers being
asked by patients and patients’ families for medicine and other support but being
unable to provide it, an “unfair” distribution of trainings among volunteers, and
volunteers leaving one NGO for another that may provide better benefits
(Olang’o, Nyamongo, & Aagaard-Hansen, 2010).
Constraints on Health Care Workers
The constraints placed on health care workers are also a barrier to adequate
care and support. Rujumba, Mbasaalaki-Mwaka, & Ndeezi reviewed the
constraints in providing HTC to children in Uganda. They note that few staff lead
to heavy work loads, lack of training on specific children who are living with HIV
issues, limited space for children-friendly clinics, and lack testing kits all
contributed to a difficult work environment. The Academic Model for Providing
Access to Healthcare (AMPATH) in Kenya found that program success was
improved by increasing the morale of home care workers. Reducing hours and
patient load as well as providing incentives for excellent work improved morale.
Campbell et al describe a successful ART program in Zambia but found that
expectations around quality care differed among the nurses and patients, which
caused conflicts. For example, patients complained of long wait times, numerous
visits to the hospital, and cost of services where as nurses often did not view
23

24. these aspects of care as overly problematic since they were providing the best
care possible. Therefore, if some of these institutional constraints and/or
understandings are rectified, both patients and clinicians would be more satisfied.
Social and Cultural Barriers
Social and cultural barriers such as stigma and discrimination and gender
inequalities still abound in limiting access and availability of services. Onyango
reports that most caregivers in rural Kenya are women, and that they are not
aware of how to properly care for the patients to limit their own exposure to HIV.
Most caregivers did not wear gloves claiming that the patient would feel rejected
if they did. Many caregivers are sick: half are ill with coughs and chest pains,
about a quarter have tuberculosis and 8% are HIV positive. Those who are HIV
positive blame the patient, which could stress the relationship between the
patient and caregiver. Baiden et al conducted a study in a rural community in
Ghana to gauge their approval for HTC services being provided by lay workers.
They also gauged the level of stigma in the community and found that
misconceptions still persist such as fearing HIV infection by drinking from the
same cup as a PLHIV, not thinking a PLHIV should teach school, and not
wanting to buy vegetables from a PLHIV. Therefore, the high level of stigma in
the community may limit up-take of HTC and other HIV services in that
community.
Community Based Services for Male Circumcision
Community mobilization activities and community-based services for male
circumcision include:
• Community engagement and communication activities to increase
knowledge, acceptance, support, promotion and demand for MC services
(e.g. community influencers, traditional male circumcisers, community
mobilization, theatre) (Mahler et al, 2011; Lissouba et al, 2010; WHO (2),
2009; Mwandi et al 2011; Obure, Nyambedha, Oindo, 2011; Hankins,
Forsythe, Njeuhmeli, 2011; Bertrand et al, 2011; C-Change, 2009)
• Community Advocacy Boards created (Lissouba et al, 2010; WHO, 2009;
WHO/UNAIDS, 2009)
• Recruitment, screening and scheduling of men for services (WHO, 2009;
Mahler et al, 2011)
• Provision of other services at site (e.g. STI, condoms, CD4) or referred
from MC to other HIV services (e.g. ARV, STI) (WHO/UNAIDS, 2010)
Communication activities such as community mobilization and theatre are often
implemented to increase knowledge, acceptance, support, promotion and
24

25. demand for MC services (Mahler et al, 2011; Lissouba et al, 2010; WHO (2),
2009; Mwandi et al 2011; Obure, Nyambedha, Oindo, 2011; Hankins, Forsythe,
Njeuhmeli, 2011; Bertrand et al, 2011; C-Change, 2009). The engagement of
key community influencers such as chiefs and traditional male circumcisers are
also involved to increase acceptance and up-take of MC services. Kenya’s
Voluntary Medical Male Circumcision (VMMC) Communication Guide for Nyanza
Province outlines various behavior change communication activities to increase
awareness, acceptance and demand for male circumcision. They implement
outreach interventions, community theatre, public and sporting events, and
distribute communication materials on male circumcision. Obure, Nyambedha, &
Oindo found that relationships with peer and youth groups and community
leaders both constrained and supported the scale-up of MC services. For
example, the youth in the study state that other youth and youth groups should
be involved in increasing demand and up-take of MC services to make it more
relevant to their lives. Participants have conflicting views on the need to have
community leaders and politicians support MC. Some thought that their support
is vital for the successful implementation of MC services while others think that it
is an individual’s decision to get circumcised and not a community one. Obure,
Nyambedha, & Oindo recommend that MC programs partner with these social
networks to improve up-take of services.
The rollout of male circumcision services focuses on communities with low
circumcision rates (WHO/UNAIDS (2), 2010). However, it is important not to
neglect communities that offer traditional male circumcision (TMC) as well. Male
circumcision is a rite of passage for adolescents in certain communities, and
many of them do not have access to facility-based MC. Therefore, building
relationships between communities that have traditional male circumcision with
the medical MC service providers will help develop understanding between the
two to ensure that every man has access to safe and effective MC services.
WHO/UNAIDS (2) (2010) supported a meeting for the East and Southern Africa
region on how to engage and work with traditional male circumcisers and TMC
communities. The priority areas from the meeting were to improve the
collaboration between TMCs and the formal health sector; improve the safety of
TMC and its effectiveness for HIV prevention; and to improve the MC options for
male adolescents to ensure they have a safe, effective and pain-free experience.
Another means to engage the community in male circumcision services is to
create Community Advisory Boards (CABs). WHO and UNAIDS both
recommend the formation of CABs that include local leaders, non-governmental
organizations, government officials, church leaders, and scientists. These
boards can be avenues to seek community suggestions and concerns as well as
receive feedback on how to improve services. Lissouba et al’s project in South
Africa describe the success in developing a CAB. The CAB is active in the
project and effective in gaining support among the community for the MC
services. For example, the CAB reviews all project documentation and provides
helpful suggestions on how to improve the services.
25

26. Other services that are mentioned in the literature are having volunteers or
community-based workers aid in service delivery, providing other services at site,
or referring to other services. WHO (2009) produced a document entitled
“Guidance on engaging volunteers to support the scale-up of male circumcision
services” on how to appropriately engage volunteers. The scale-up of MC
services is rapid in many sub-Saharan countries so the use of community-based
volunteers is essential. Mahler et al describe how community-based health
workers counsel, test and schedule clients for MC services, which aids in
program success. Other needs are often identified when men present for MC
services. WHO/UNAIDS (2010) describe how some MC clinics offer sexually
transmitted infection (STI) services either on-site or refer to a nearby clinic.
Condoms are often available and sometimes those who test positive are
provided CD4 counts. PLHIV are also referred to ARV sites for treatment.
Gaps in Service Delivery for Male Circumcision at the Community Level
The major gaps in the provision of MC services at the community level are:
• Lack of human resources to provide the scale of services needed (Curran
et al, 2011; WHO/UNAIDS, 2010)
• Lack of infrastructure to support services (WHO/UNAIDS, 2010; Herman-
Roloff et al, 2011; Budge-Reid et al, 2009)
• Sustainable funding (WHO/UNAIDS, 2010; WHO/UNAIDS, 2011)
Male circumcision is the most recent of the six programmatic areas to be
implemented in national HIV programs. National programs are beginning to
implement male circumcision programs in selected areas and populations. There
are resource limitations in the implementation and scale-up of programs including
lack of human resources, lack of infrastructure, and lack of sustainable funding.
Herman-Roloff et al report that the Government of Kenya allows trained nurses to
provide MC services in scale-up since there is a lack of human resources in
country. Curran et al describe how various MC programs solve the lack of
human resources by task shifting, deploying staff from other parts of the health
sector to aid in the implementation of services, and recruiting staff who had
recently retired or had recently qualified as health care workers.
Lack of infrastructure and sustainable funding is also noted as challenges in
providing long-term MC services. The rapid scale-up of MC services in specific
communities places stress on existing clinics. Herman-Roloff et al found in
Kenya that no health facility is conducive to offering the minimum package of MC
services as is prescribed by the national guidelines. WHO (2009) developed a
Male Circumcision Situation Analysis Toolkit to aid MC specialists on accessing
national, district and community health care systems to improve services (Budge-
Reid et al, 2009). Tool 5 focuses on accessing what services are available and
how to address the gaps identified (Budge-Reid et al, 2009). For long-term
sustainability, a consistent funding supply must be found. The recent
implementation of services is mostly funded by donor organizations and
26

27. sustainability for providing MC services in the long-term is questioned. While
most national programs are still strategizing on how to diversify funding, one
innovative approach from Kenya is to use private insurance to help individuals
pay for MC.
Six Programmatic Questions on the Community’s Role in the
Scale-up of Services
1. Which specific elements are communities uniquely positioned to
address?
Communities are uniquely positioned to quickly recognize needs in the
population and to respond to those needs with their available material and
human resources (Birdsall & Kelly, 2005). They are also able to forecast how
needs are evolving and plan on how to respond to those needs (Birdsall & Kelly,
2005). Individuals in the community often provide a wealth of support to AIDS-
affected families and friends even if they are not part of a formal organization
(Nhamo, Campbell, & Gregson; Birdsall & Kelly, 2007; World Bank). There are
numerous community organizations and clubs that provide different levels of
support for HIV and AIDS-affected individuals and families (Nhamo, Campbell,
Gregson). In addition, independent grass roots initiatives are filling an important
gap at the local and district level (Birdsall, Ntlabati, Kelly, & Banati, 2007.).
According to a study conducted by Birdsall and Kelly (2007) in the Southern
Africa region, 61% of civil society organizations (CSO) were based in urban
areas with activities predominately in and around the large cities and towns.
Therefore, for rural and harder to reach locales, community based responses
(both formal and informal) are vital to help meet some of the population’s needs.
Community-Based Organizations (CBOs) are predominately focused on
providing prevention interventions, broadly defined, as both awareness and
information giving as well as specific services including HIV testing and
counseling (HTC) and prevention of mother-to-child transmission (Birdsall &
Kelly, 2005; Birdsall & Kelly, 2007). The most numerous prevention activities
include behavior change interventions, condom promotion, and life skills (Birdsall
& Kelly, 2005). Care and support activities are predominately provided by CSOs
and faith-based organizations (FBOs) (Birdsall & Kelly, 2005). For example,
organizations provide home-based care, psychosocial support, nutrition support,
transportation, OVC support, and income generation projects (Zambia, CRAIDS;
Birdsall & Kelly, 2005; Birdsall & Kelly, 2007). The World Bank (2) evaluation
also found that CBOs allocated the largest portion of their budget to prevention
(42%). Then, interventions for creating an enabling environment (29%),
delivering care and support activities (18.5%), and implementing treatment and
impact mitigation interventions followed (15% and 6%).
27

28. 2. How do we define community in this work—especially local
communities?
Definitions of community often have common components such as having a
sense of belonging to the group, sharing common values, and feeling that their
needs can be met through inclusion in that group (McMillian & Chavis, 1986;
McDermott, 2000; MacQueen et al, 2001; World Bank, 2011). Community can
be based on geography but it is not essential to develop a cohesive group
(McMillian & Chavis, 1986). Groups that share a sense of community could be
founded on a common set of values and ideologies (McMillian & Chavis, 1986).
The World Bank’s “Analyzing Community Responses to HIV and AIDS,
Operational Framework and Typology” defines community either based on a
geographic sense of place or on a cultural identity or a combination of the two.
The geographic sense of place is based on living in the same place such as a
village or city. Communities based on having a similar cultural identify are
usually individuals who share a common set of values, circumstances, life
experiences, and behaviors such as people living with HIV/AIDS, a religious
community, women’s groups, or men who have sex with men.
Defining local communities in HIV and AIDS work is parallel to the definitions
above. There is a need for individuals to feel a sense of membership; have a set
of common values, needs and goals; and feel that some of their needs can be
met through their participation in that community. These elements are essential
for higher-level collective responses including community-based responses and
mobilizing communities to galvanize around a specific issue (ReliefWeb Project,
2008; UNAIDS, 2009).
3. What are the principles of the uniqueness of civil society in the HIV
response?
Civil society is in a unique position to respond effectively and swiftly to the HIV
crisis if they have the means to do so. Traditionally, civil society played an
important role in the health sector. They are able to connect with and respond to
community needs in an efficient and rapid manner [Kelly & Birdsall, 2008; Katz,
1997; UNAIDS, 1998; UNAIDS, 2001]. The rapid response to the HIV epidemic
by CSOs has demonstrated success in HIV and AIDS prevalence rates in the
men who have sex with men (MSM) community in the United States of America,
the general population in Uganda, and the sex work industry in Thailand (Katz,
1997; UNAIDS, 1998; UNAIDS, 2001). In a current evaluation by the World Bank
(2), it was found that there were higher levels of HIV knowledge, HIV risk
perception, and condom use in communities that had more CBO engagement.
In addition, local CSOs are able to form networks with higher level CSOs to
ensure that systems are created for addressing policy and overall strategy issues
28

29. (Kelly & Birdsall, 2008; Strand, 2011; Narayanan, Vicknasingam, Robson, 2011;
Jones, 2005). While some current studies show strong disengagement of CSOs
in advocacy (Kelly & Birdsall, 2010; Kelly & Birdsall, 2008), there are other
examples that demonstrate their effectiveness in responding to pertinent national
issues (Strand, 2011; Jones, 2011). For example, in Malaysia, non-
governmental organizations (NGOs) successfully worked with government,
academia, medical practitioners, and religious partners to advocate for and pass
a policy to support harm reduction interventions (Narayanan, Vicknasingam,
Robson, 2011). In Uganda, human rights groups were moderately successful in
generating discourse around an anti-Homosexual Bill (Strand, 2011).
Recently, CSOs have become stronger partners in providing health care
services. For example, in Tanzania, 40% of health services are delivered by
faith-based organizations (Kelly & Birdsall, 2008). There has also been a shift
away from advocacy to service delivery caused by the rapid scale-up of HIV and
AIDS interventions and services (Kelly & Birdsall, 2010). While this has aided
millions in accessing much needed prevention, treatment, care and support
services, CSOs have shifted away from their advocacy and accountability role
(Kelly & Birdsall, 2008; Kelly & Birdsall, 2010). A gap has, therefore, developed
in the national level discourse since CSOs’ are now focused more on service
delivery than advocacy.
4. How can the service delivery role be strengthened at the same time
as the advocacy/accountability role?
5. How do we avoid undermining the role of advocacy in scale-up?
A number of studies have reviewed how the role of CSOs has shifted from their
advocacy/accountability role to a service delivery role (Kelly & Birdsall, 2010,
Birdsall & Kelly, 2007; Kelly & Birdsall, 2008; Spicer et al, 2011; Doupe, 2011).
Since the mid 1990’s, AIDS funding has increased by 30-fold to low- and middle-
income countries (Oomman, Bernstein, Rosenzweig, 2007). Annual spending,
from 1996 to 2006, went from US $300 million to US$ 8.9 billion (Oomman,
Bernstein, Rosenzweig, 2007). The number of CSOs has increased to keep
pace with the funding. One study found that the number of CSOs involved in HIV
and AIDS has grown by 61% since 2000 (Birdsall & Kelly, 2005). CSO programs
also reflect the amount of funding in the different areas of HIV and AIDS, which
suggests that funding is shaping the national response and not advocacy from
the communities (Kelly & Birdsall, 2010).
Traditionally, CSOs have paved the way on how health care services should be
formed and delivered (UNAIDS, 2001; Katz, 1997); however, the current funding
streams seem to be undermining that role (Kelly & Birdsall, 2010, Birdsall &
Kelly, 2007; Kelly & Birdsall, 2008; Spicer et al, 2011). Birdsall & Kelly (2007)
state that 75% of funds to CSOs are going to program implementation or service
delivery, and there is an actual reduction in the amount of CSOs involved in
advocacy and policy development. Much less attention was paid to HIV and
29

30. AIDS-related policy and advocacy issues (Kelly & Birdsall, 2010). Many CSOs
receive funding from governments or international NGOs and advocating for an
issue that is not supported by the funders may be risky (Spicer et al, 2011). The
Treatment Advocacy and Literacy project in Zambia note that advocacy could
sometimes be perceived as anti-government; therefore, the voice of CSOs is
pacified in fear of losing funding (Treatment Advocacy and Literacy; Spicer et al,
2011). The Treatment Advocacy and Literacy project recommends working with
government and trusted partners of government to build strong working
relationships so advocacy can be effective.
In addition, when donors have a prescribed set of programs that they are
funding, it leaves little room for CVOs to propose and implement something else.
For example, Lindgren et al implemented a mobile clinic program in Malawi that
provided HTC, referrals to treatment, TB and STI services, antenatal care, and
diagnosis and treatment of malaria. It was found that the program needed to be
flexible and responsive to the community’s needs since during the rainy season
the malaria services were required more than the HIV services. The program
then shifted to ensure that malaria tests and medicine were available. Not all
organizations have this same level of flexibility for their donors to modify
programs based on the community’s needs.
Recommendations have been given by the sources below on how to strengthen
CSOs so they can provide a service delivery role as well as play a prominent role
in leading the HIV and AIDS response. They are:
1. Support rights and advocacy-oriented civil society initiatives (Kelly &
Birdsall, 2008)
2. Allow CSOs to design how civil society in a specific country should be
organized, not development partners (Kelly & Birdsall, 2008; Campbell &
Cornish, 2010)
3. Strategically increase the amount of funding to community-based
organizations and not have a “one-size-fits all” scale-up approach (Kelly et
al, 2005; Campbell & Cornish, 2010; Birdsall & Kelly, 2007)
4. Support CSOs as long-term institutions to increase sustainability (Birdsall
& Kelly, 2007)
5. Strategically build the capacity of CSOs based on their individual needs in
areas such as technical skills (e.g. HIV/AIDS thematic areas, research,
policy, advocacy); human resources; and program, institutional,
administrative, and financial management (Kelly et al, 2005; Birdsall et al,
2007; Birdsall & Kelly, 2007; Szekeres, Coates, Ehrhardt, 2008; Oomman,
Bernstein, Rosenzweig, 2007)
6. Build local systems to coordinate community responses (Kelly et al, 2005;
Birdsall et al, 2007; Birdsall & Kelly, 2007)
7. Ensure predictable funding so CSOs can plan and advocate for the long-
term (Birdsall et al, 2007; Kelly & Birdsall, 2010)
30

31. 8. Build linkages between local and national CSOs for networking,
information sharing, coordinating, and advocating for shared needs
(Birdsall et al, 2007; Campbell & Cornish, 2010)
From the recommendations above, HIV/AIDS leaders, funders, and civil society
can strategically move forward. Recommendations 1 (“support rights and
advocacy-oriented civil society initiatives”), 2 (“allowing CSOs to design how civil
society in a specific country should be organized, not development partners”), 3
(“strategically increase the amount of funding to community-based organizations
and not have a “one-size-fits-all” approach”), and 7 (“ensure predictable funding
so CSOs can plan and advocate for the long-term”) give greater decision-making,
leadership, and autonomy to the civil society community.
Capacity building should be at the forefront in the shift to have CSOs serve more
of a service delivery and advocacy role. Schwartlander et al (2011) call for an
increased emphasis on communities providing HIV/AIDS services in an attempt
to improve the response to the epidemic. To accomplish this goal, much needs
to be done in how funds are currently allocated to CSOs since this seems to be a
major driving force in how countries are managing the HIV/AIDS crisis.
6. What is the role of different categories of community organizations
(indigenous, international, representative, international NGO, faith,
ethnic or identify based organization, etc) and are there conflicts
between different roles?
Types of Organizations Providing Community-Based Services
The institutions and organizations that are involved in the HIV/AIDS response
span across government and non-governmental organizations. Civil society
organizations (CSOs) are highly involved in the response and encompass a
range of organizations including community-based organizations (CBO), non-
governmental organizations (NGO), and faith-based organizations (FBO)
(Siamwiza & Collins, 2009; Birdsall & Kelly, 2005). CSOs also include special
interest groups such as youth, people living with HIV/AIDS, and women
associations as well as the media, traditional healers & leaders, and professional
associations (Siamwiza & Collins, 2009). Birdsall & Kelly (2007) report that 75%
of CSOs are CBOs or local NGOs. In another study, faith-based organizations
(FBOs) made up one-third of CSOs and ranged from community-based churches
to national and international FBOs (Birdsall & Kelly, 2007). There are also a
number of examples of organizations that do not receive funds or support from
larger NGOs but provide much needed services to the community (Birdsall &
Kelly, 2007; World Bank, 2011).
Majority of Funds Going to Small Portion of Organizations
In Oomman, Bernstein, Rosenzweig, donors provide the largest amount of
HIV/AIDS funds to support national responses. It also states that government
funding only comprised of 5% or less of the national HIV/AIDS budget (Oomman,
31

32. Bernstein, Rosenzweig, 2007). The largest HIV/AIDS donor is the US
President’s Emergency Plan for AIDS Relief (PEPFAR) followed by Global Fund
and the World Bank MAP project. PEPFAR allocates most of its funds to
international-NGOs, or INGOs, based on their capacity to meet targets, manage
funds, and implement programs quickly (Oomman, Bernstein, Rosenzweig,
2007). Kelly & Birdsall (2010) report that the INGOs’ budgets in their six-country
study are five times greater than NGOs and twenty-five times greater than CBOs.
Birdsall & Kelly (2007) states that only 20% of organizations in their study are
INGOs. Therefore, even though 75% of organizations working on HIV/AIDS
issues are CBOs and local NGOS, most of the funds are managed by INGOS,
which make up a smaller portion of organizations.
The World Bank (2) conducted an evaluation on the Community Response to
HIV and AIDS and also did an analysis of funds being allocated to CSOs. Their
evaluation included Kenya, Peru and India where as Oomman, Bernstein,
Rosenzweig’s evaluation included only countries in sub-Saharan Africa
(Mozambique, Uganda, and Zambia); therefore, the findings differed slightly.
Both evaluations agreed in that they found that CSOs receive a large amount of
funding but it represents a small percentage of the total available in the country.
They differ in that the World Bank found that community-based organizations
(CBOs) mostly receive funds through their own fund raising followed by
accessing domestic resources through national grants. CBOs do not receive a
large portion of funds through international donors. Both found that the amount
available through international donors do not reach local organizations to a large
degree.
Relationships Between Different Types of Organizations
The relationship between INGOs and local CBOs/NGOs is complex. Aveling
(2010) notes that the relationship between INGO and local organizations has
benefits to local organizations and communities such as being able to access
funding, improved access to health services, and recognition from the national
systems for their work. However, there are conflicts between the INGO and local
CBOs/NGOs linked to funding and overall capacity. Aveling outlines how local
organizations lack the capacity to access funds themselves, which leads to their
lack of decision-making power and being seen as recipients of programs and not
leaders. In addition, local NGO/CBOs have to follow the prescriptions of that
central INGO. For example, the local organization will not help develop the peer
education manual that will be used in the program but will use the manual that is
provided by the INGO (Aveling, 2010). Important characteristics of the
community could be lost in the intervention without their involvement. Therefore,
local organizations often lose their voice to larger, higher capacity, INGOs so
donors can meet targets and manage funds appropriately.
Building Capacity of Local Organizations so They Can Shape the Response
The capacity of local organizations needs to be strengthened if they are to lead
the response. CBOs and local NGOs have a smaller number of staff, work in an
32

33. environment where there is a low level of coordination, and experience huge
population demands. While local organizations may see where the gaps lie in
programming, they have difficulties absorbing and managing funds based on
their lower capacity (CADRE, 2007). Often to receive funding organizations need
the capacity to write a solid proposal, past experience in the field in which they
are applying in, and ability to manage funds. These higher-level organizational
functions are often possible for international and national NGOs but not for the
smaller CBOs, which effects their autonomy and leadership at the community
level (Kelly & Birdsall, 2010). Oomman, Bernstein, Rosenzweig, 2007 also note
the discrepancy between INGOs and local organizations in their ability to meet
targets, manage funds, and implement large-scale programs in their report.
Donors often fund a smaller number of higher-capacity organizations to achieve
results and manage effectively verses funding a large number of smaller-capacity
local organizations. If international and national leaders want to move to more
community-based responses, then local organizations need to develop their
capacity.
Partnerships and Coordination
Partnerships and coordination between organizations could be seen as strong
based on the large percentage of CSOs (85%) being linked into networks, which
augments information sharing and harmonization (Kelly et al, 2005; Birdsall &
Kelly, 2007). However, Kelly et al (2005) found that partnerships and
coordination between the local NGOs was weak. There were various levels of
coordination between government and community organizations and between
CBOs themselves, but the local systems needed strengthening (Kelly et al,
2005). In addition, while many NGOs were part of a network with other
organizations, it was found that mistrust and competition often superseded
information sharing and advocating for common interests based on competition
for funds (Kelly et al, 2005). Therefore, while there are a large number of CBOs
and local NGOs implementing much needed HIV and AIDS services, their
capacity and ability to lead the response seems challenged in a number of
dimensions.
Key Themes and Conclusions
International and national public health leaders all advise involving communities
in the HIV/AIDS response. Community mobilization is a means to empower
individuals through collective action to address and meet their needs.
Community mobilization can be generated through internal or external sources.
The more sustainable of the two is the former since local resources are used.
Communities are not dependent on external sources. If external sources are
relied upon in programming, and that source disappears, then programs could be
negatively affected. The challenge is how to support community mobilization
without upsetting the balance between supporters and initiators/leaders of a
movement.
33

34. Communities are Taking an Active Role in the HIV Response
One common theme in the literature is that communities are taking an active role
in providing HIV services. Communities are knowledgeable about what services
need to be implemented and can accurately project what should be
accomplished in the future. Communities are providing a wide range of much
needed services. There are both informal and formal responses at the
community level. The informal responses are frequently led by individuals who
saw a need in the community and acted to meet that need. These individuals
often receive little or no external support. Community organizations or groups
also respond by addressing a local need, but also received little or no external
support. Faith-based organizations (FBOs) and groups for example, have the
ability to reach a large portion of underserved populations based on their
extensive networks in communities.
Civil Society Organization are Filling an Important Gap in HIV Services
There are also numerous civil society organizations at the community, district or
national level that provide a number of much needed services. Birdsall and Kelly
(2005) note how community organizations are often providing certain services
that government is not. One example is in interventions targeting orphans and
vulnerable children (OVC). Only 13% of government institutions are
implementing services for OVC compared to 73% of CSOs and 71% of FBOs.
CSOs at the local or district levels are often more numerous than other types of
organizations but are smaller-scale and not as largely funded compared to
national- or international-non-governmental organizations yet effective
programming is being implemented. For example, Yadav describes how eight
community-based organizations improved the quality of life and improved hope
within PLHIV in those communities by providing much needed care and support
services. Arulogun also recommends that the success of programs (specifically
PMTCT) hinges on the community, and that community mobilization is key to
improve awareness and utilization of services. Schwartlander et al recommend
that these community-based responses be strengthened as a means to reach
universal access in a sustainable, culturally appropriate and cost-effective
manner.
Common Questions that Emerge from the Literature
The common questions that emerge from the literature include:
• What is needed to implement programs to scale, with an intensity and
quality necessary to ensure universal access to prevention, treatment,
care and support services?
• How can national, district and community leadership and coordination be
strengthened?
• How can funding be more equitable in supporting a wide range of
organizations so the response will be community-lead?
34

35. • What is needed to resolve the paradox between service delivery and
advocacy among civil society organizations in the scale-up of HIV
services?
• How can people living with HIV be more involved in the HIV response?
• How can cultural, structural, environmental and social constraints be
addressed in programs?
What is needed to implement programs to scale, with an intensity and
quality necessary to ensure universal access to prevention, treatment, care
and support services?
Programs are currently not being implemented to the scale, intensity, and quality
necessary to achieve universal access. Evidence-based programs need to be
implemented and continually measured. Many programs are not evidence based
and vary in quality. Even when there are national guidelines, it does not
necessarily mean that they are being implemented uniformly across service
delivery sites (Sarker, 2009). If effective programs are being implemented, they
are not available to a large portion of the national population. Rural and key
populations are often underserved. In addition, interventions are often specific to
certain domains (e.g. prevention or treatment), and do not cover the wide range
of services that would constitute a comprehensive HIV/AIDS program in a
community.
To achieve universal access, infrastructure and human resource constraints must
be addressed throughout the six programmatic areas. As in male circumcision,
the Kenyan example amplifies how the current state of health facilities is not
conducive to providing quality services and should be improved (Herman-Roloff
et al, 2011). Human resources not only in numbers, but also in capacity, require
augmentation. A body of skilled health care workers and behavioral scientists
need to be invested in within countries so they can join the response. Presently,
a large number of lay workers and volunteers are helping to fill the human
resource gap but these individuals also require support in terms of capacity,
resources and funds. Olang’o, Nyamongo, & Aagaard-Hansen’s project
demonstrates how attrition of volunteers can be low if not given the supports
necessary to do a quality job.
How can national, district and community leadership and coordination be
strengthened?
Leadership and coordination at the national, district and local levels are essential
for an effective response. There are often National HIV/AIDS Strategies in
countries but the actualization of those strategies requires leadership,
coordination, and a system to support it. UNAIDS (2007) notes that lack of
leadership and consensus of key issues at the national level often restrict
programs. The volume of different stakeholders that are involved in the
HIV/AIDS response can be overwhelming and challenge consensus as well.
35

36. WHO (2009) reports that health services are often provided by organizations and
businesses outside of government. Therefore, to achieve consensus among the
different stakeholders is difficult and leadership is necessary to help direct a
unified response.
Coordination among all the different players at the national, district, and
community levels is a challenge. A couple of donors have suggested that
mapping of the response be completed so everyone has a clearer idea on what
is being implemented and where (PEPFAR, 2011; Rodriguez-Garcia et al, 2011).
To have a comprehensive program, then prevention, treatment, care and support
programs must be implemented in the same community and different partners
(governmental and non-governmental) must be able to effectively refer and link
with each other. Currently, this is not the case. A coordinated response is a
knowledgeable and organized one. To have a community-based response then
local systems need to be established to coordinate it. Kelly and Birdstall in a
number of reports state that local systems are essential and must be built.
Presently, the local systems are not in place to provide the leadership and
coordination necessary to reduce duplication and ensure that resources are
effectively utilized.
Can funding be more equitable in supporting a wide range of organizations
so the response will be community-lead?
The review notes a number of challenges around the funding streams of national
HIV/AIDS programs, and how it affects civil society’s ability to have a voice in
directing the response. The allocation of national budgets is inequitable in terms
of funding national and international non-governmental organizations as opposed
to smaller civil society organizations or community-based programs. While civil
society receives a large amount of funding on absolute terms, that portion is
actually quite small when compared to the overall budget. In addition,
governments and international donors often have their own vision of what should
be implemented and direct the response. In the rapid scale-up of HIV/AIDS
programs, the tide often carrys civil society organizations into service delivery
since that is where the direction of strategies leads. To have a more community-
oriented response, then a larger portion of funding needs to be allocated to local
organizations. However, local organizations also need to have their capacity
built, and local coordinating and financing systems must be established for it to
be effective.
What is needed to resolve the paradox between service delivery and
advocacy among civil society organizations in the scale-up of HIV
services?
The large amount of funding to the HIV/AIDS response is a blessing to many, but
what is reduced is the voice of civil society. Several authors note the paradox
between service delivery and advocacy and give a number of recommendations
36

37. on how to strengthen civil society’s response to the epidemic. The building of
civil society will aid in developing both service delivery and advocacy for HIV
interventions. WHO (2009) reports, “Moving towards universal access requires
reinforcing support for civil society organizations and networks” and also
strengthening their capacity. Currently, the capacity of community-based
organization is limited in terms of technical, organization, and financial
management, which reduce their ability to access funds and become
local/national decision-makers. It also reduces their ability to provide highly
technical services, which is needed in achieving universal access. Community-
based responses are mostly focused on prevention and less technical areas of
treatment, care and support programs. If there is a push for more services being
provided by local CSOs at the community-level, then their capacity in a number
of different fronts will need to be strengthened.
How can people living with HIV be more involved in the HIV response?
The involvement of people living with HIV is critical for a more human-rights
approach to the response. PLHIV are currently involved in all areas of HIV/AIDS
programming including advocacy for human-rights policies, care giving, peer and
support groups, and HTC counselors. PLHIV organizations and networks are
influencing the response in Thailand around universal treatment and are
providing support to other PLHIV in a number of settings. Mothers who are living
with HIV are acting as mentors to other mothers and helping them navigate the
often-complex PMTCT services. PLHIV give testimonies in HIV prevention
interventions to give a human face to the epidemic. They are able to break down
misconceptions and reduce stigma and discrimination in communities.
How can cultural, structural, environmental and social constraints be
addressed in programs?
The cultural, structural, environmental, and social constraints in scaling-up
effective and measurable HIV services are addressed in programs, but more
must be accomplished. Stigma and discrimination continue to affect how people
protect themselves from the HIV virus as well as seeking care, treatment and
support services. Communities need to be mobilized to address these issues in
a manner that is specific to them and their lives, and they need to use their own
strengthens and capacity to accomplish this. International and national donors
will have to give the baton to communities in order to address these issues in an
innovative, creative and culturally appropriate manner to achieve universal
access to HIV/AIDS services.
37

38. References
Advocacy/Accountability
Aveling, E.L. 2010. The impact of aid chains: relations of dependence or
supportive partnerships for community-led responses to HIV/AIDS? AIDS Care,
22(S2), 1588-1597.
Birdsall, K., & Kelly, K. 2005. Community responses to HIV/AIDS in South Africa:
Findings from a Multi-Community survey. Johannesburg: DFID/USAID/CADRE.
Birdsall, K., & Kelly, K. 2007. Pioneers, partners, providers: The dynamics of
civil society and AIDS funding in Southern Africa. Johannesburg: Centre for
AIDS Development, Research and Evaluation (CADRE)/Open Society Initiative
for Southern Africa.
Birdsall, K., Ntlabati, P., Kelly, K., & Banati, P. 2007. Models of funding and
coordinating community-level responses to HIV/AIDS. Johannesburg: Center for
AIDS Development, Research and Evaluation (CADRE)/Global Fund.
CADRE. Progress Report, 2005-2007. 2007.
Campbell, C., & Cornish, F. 2010. Towards a “forth generation” of approaches
to HIV/AIDS management: creating contexts for effective community
mobilisation. AIDS Care, 22(S2), 1569-1579.
Jones, PS. 2005. “A test of governance”: rights-based struggles and the politics
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