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  

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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

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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

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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.

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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.

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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.

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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)

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• 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

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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

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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

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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)

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• 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)

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• 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:

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• 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

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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).

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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:

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• 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

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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.

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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

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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

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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-

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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

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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

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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

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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.

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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

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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%).

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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

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(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

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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)

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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,

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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

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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.

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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?

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• 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.

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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

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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.

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