Rapid Literature Review       Community Mobilization and the Six Programmatic Areas Outlined in               the “Towards...
Table of ContentsTable of Contents………………………………………………………………… 2Acronym List……………………………………………………………………… 3Introduction……………………...
AcronymsAMPATH     Academic Model for Providing Access to HealthcareART        Antiretroviral TherapyARV        Antiretrov...
IntroductionCommunity Mobilization is a key component of the new investment frameworkoutlined by Schwartlander et al (Lanc...
MethodsThe objective of the rapid literature review was to provide an overview of differentkinds of community mobilization...
FindingsCommunity Based Services for Key Populations (MSM, IDU, SexWork)Community mobilization activities and community-ba...
The key to most of the interpersonal/group interventions for vulnerablepopulations is to ensure that they reach the popula...
•   Working with authority figures (police, government officials) (WHO, 2011;           WHO, 2008; WHO/DFID/Norwegian Emba...
programs (Pathfinder, 2008; UNAIDS 2009; WHO/DFID/Norwegian       Embassy 2010)The literature discusses the social factors...
coordination, and weak partnerships at the community-level is noted by theWorld Health Organization (2010, 2011) and UNAID...
presenting late in pregnancy and/or in advanced stages of HIV disease soPMTCT services are less effective. Therefore, comm...
•      Fear that the mother has to rely on artificial feeding which is connected to       social and cultural taboos (Bwir...
•      Poor working environment for health care workers [e.g. work load, capacity       (e.g. uncomfortable discussing ris...
•   Community mobilization to increase knowledge, attitudes, and           behaviors as well as increase support for preve...
manner. One of its goals is to stimulate community discussions about taboo andsensitive topics. Pelto & Singh (2010) imple...
National HIV/AIDS strategies need to know where their next 1000 HIV infectionsare coming from and target prevention interv...
•   Community-based distribution approaches (e.g. music shops, ice cream           parlors, beauty salons, theatres, stadi...
prevention interventions that do positively influence the demand, acceptability,and use of condoms.Availability of Quality...
Barriers to condom use, which affects demand, include personal myths,perceptions, dislikes and fears as well as larger cul...
educators and speakers to increase up-take of services and increase adherence.Lyttleton, Beesey, & Sitthikriengkrai’s proj...
al’s project is based in hospitals but organized teams of health care workers togo into communities to provide a continuum...
based providers are in a unique position to offer a wide range of services, andone of those services is helping PLHIV acce...
used to fill important gaps in the health care system. However, having volunteersbridge the human resource gap has its cha...
these aspects of care as overly problematic since they were providing the bestcare possible. Therefore, if some of these i...
demand for MC services (Mahler et al, 2011; Lissouba et al, 2010; WHO (2),2009; Mwandi et al 2011; Obure, Nyambedha, Oindo...
Other services that are mentioned in the literature are having volunteers orcommunity-based workers aid in service deliver...
sustainability for providing MC services in the long-term is questioned. Whilemost national programs are still strategizin...
2. How do we define community in this work—especially local          communities?Definitions of community often have commo...
(Kelly & Birdsall, 2008; Strand, 2011; Narayanan, Vicknasingam, Robson, 2011;Jones, 2005). While some current studies show...
AIDS-related policy and advocacy issues (Kelly & Birdsall, 2010). Many CSOsreceive funding from governments or internation...
8. Build linkages between local and national CSOs for networking,          information sharing, coordinating, and advocati...
Bernstein, Rosenzweig, 2007). The largest HIV/AIDS donor is the USPresident’s Emergency Plan for AIDS Relief (PEPFAR) foll...
environment where there is a low level of coordination, and experience hugepopulation demands. While local organizations m...
Communities are Taking an Active Role in the HIV ResponseOne common theme in the literature is that communities are taking...
•   What is needed to resolve the paradox between service delivery and           advocacy among civil society organization...
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5 community-mobilization-and-if-programmatic-areas-draft

  1. 1. Rapid Literature Review Community Mobilization and the Six Programmatic Areas Outlined in the “Towards an improved investment approach for an effective response to HIV/AIDS” January 20, 2012 Tiffany Lillie, PhD MHS  
  2. 2. Table of ContentsTable of Contents………………………………………………………………… 2Acronym List……………………………………………………………………… 3Introduction……………………………………………………………………….. 4Methods…………………………………………………………………………... 5Findings…………………………………………………………………………... 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……………………………………………………….. 24Six Programmatic Questions on the Community’s Role in theScale-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?................... 31Key Themes and Conclusions………………………………………………..... 33References…………………………………………………..………………….... 38   2  
  3. 3. AcronymsAMPATH Academic Model for Providing Access to HealthcareART Antiretroviral TherapyARV AntiretroviralCBO Community-Based OrganizationCSO Civil Society OrganizationDREAM Drug Resources Enhancement against AIDS and MalnutritionFBO Faith Based OrganizationHTC HIV Testing and CounselingIDU Injection Drug UsersIF Investment FrameworkINGO International Non-Governmental OrganizationMC Male CircumcisionMSM Men who have Sex with MenNGO Non-Governmental OrganizationOI Opportunistic InfectionsPLHIV People Living with HIVPMTCT Prevention to Mother to Child TransmissionPSI Population Services InternationalRFP Request for ProposalSW Sex WorkersTALC Treatment Advocacy and Literacy CampaignTASO The AIDS Support OrganizationTMC Traditional Male CircumcisionUNAIDS United Nations Office of HIV/AIDSUNFPA United Nations Population FundWHO World Health OrganizationZPCT Zambia Prevention, Care and Treatment Partnership   3  
  4. 4. IntroductionCommunity Mobilization is a key component of the new investment frameworkoutlined by Schwartlander et al (Lancet 2011) to achieve universal access to life-saving HIV prevention, care, treatment and support services in a cost-effectivemanner. Schwartlander et al (2) defines community mobilization as “…when aparticular group of people becomes aware of a shared concern or common need,and together decides to take action in order to create shared benefits.” Theinvestment framework includes a strong focus on the need to strengthencommunity-based responses to achieve universal access to services.Community mobilization can be stimulated through internal needs and motivationor can be supported through external sources. The more sustainable is theformer approach since they are usually based on internal, as opposed toexternal, resources.Schwartlander et al describe six programmatic areas that have a direct affect onthe risk and transmission of HIV as well as on morbidity and mortality. The sixprogrammatic areas include prevention of mother-to-child transmission (PMTCT);condom promotion and distribution; key populations [sex work (SW), men whohave sex with men (MSM), and injection drug users (IDU)]; treatment, care, andsupport to people living with HIV/AIDS; male circumcision; and behavior changeprograms. The aim of this rapid literature review was to investigate the servicesthat are currently being implemented at the community level within these sixprogrammatic areas and the critical enablers, as well as the gaps and challengesin these services.It has been noted by a number of public health specialists, especially Kelly andBirdstall (2010), of the dilemma between civil society organizations (CSOs) inservice delivery verses their advocacy/accountability role. CSOs haveincreasingly become implementing partners in the rapid scale-up of HIV/AIDSservices. In doing so, a conflict of interest may have developed in these CSOssince they are receiving funds from the very bodies that they would target foradvocacy. A brief discussion on how the scale-up of services has affected civilsociety organizations’ (CSOs) ability to act as both service providers andadvocates for the future response is highlighted by six questions. Commonthemes and conclusions are also discussed.   4  
  5. 5. MethodsThe objective of the rapid literature review was to provide an overview of differentkinds of community mobilization activities and community-based services in eachof the 6 basic programmatic areas and the critical enablers. The overviewexplored what services are currently being provided, and where major gaps lie inthe provision of services at a community level. The literature review and analysiswas also intended to address the six questions outlined by UNAIDS, arising frominitial consultations on the Investment Framework (IF) with civil society partners,which discussed issues such as community’s unique ability to implement HIVinterventions, their advocacy verses service delivery role, and the role of differentcategories of CSOs and conflicts between them.Given the time restraints of the literature review, the predominate search enginesused where PubMed and the UN/WHO web pages. The search terms used were“community” or “community mobilization” paired with “HIV.” Finer searcheswhere then used using the above terms coupled with MSM, IDU, SW, PMTCT,behavior change, condoms, antiretroviral therapy (ART), HIV testing andcounseling (HTC), palliative care, people living with HIV (PLHIV), and malecircumcision (MC). The journal articles and documents found through thesesources made up the references used for the six programmatic areas. Theoutcome was about twenty to forty resources per programmatic area.The above search did not render a substantial number of resources to addressthe six questions outlined by UNAIDS’s RFP. A selected search was conductedfor this portion of the literature review and was based predominately on the 2010supplement in AIDS Care on Community Mobilization Vol 22(S2). Grey literaturewas obtained from papers’ table of resources as well as supplemented byresources 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 searchengines could not be accessed without a subscription such as CINHL andPsycINFO.   5  
  6. 6. FindingsCommunity Based Services for Key Populations (MSM, IDU, SexWork)Community mobilization activities and community-based services for keypopulations including men who have sex with men (MSM), injecting drug users(IDU) and sex workers (SW) are at the interpersonal, community andstructural/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 educationprogram in Maputo, Mozambique. The peer educators are former or current sexworkers, and distribute condoms and IEC materials in local communities. Theyencourage sex workers and clients to attend a drop-in center where they accessSTI and HIV testing services. Another interpersonal strategy is to have peers actas 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/ormen who have sex with men and are more likely to understand the peers’ livesbetter than other types of outreach workers. The outreach workers are betterable to discuss topics such as drug use, sex, and prevention methods in acompassionate and knowledgeable manner.   6  
  7. 7. The key to most of the interpersonal/group interventions for vulnerablepopulations is to ensure that they reach the populations most at risk, and providethem with a safe space to discuss and evaluate their level of risk. Healthypractices are discussed and materials such as condoms and clean needles areoften supplied to ensure practice. Interventions are socially and culturallyappropriate and mirror the population’s reality. For example, Joshi & Dhillon(2010) implement a multi-component intervention and one activity is to have thetransgender community develop their own messages and images for posters.The empowering workshops that accompanied the material developmentresulted 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 areviewed as a safe place to go to access services such as STI testing andtreatment, HIV testing (and sometimes treatment), routine check-ups, supportgroups, and condoms (UNAIDS, 2006; WHO, 2011; WHO, 2010; PSI, 2011).Building key population networks and partnerships is viewed in the literature asvital to advocate for human-right approaches and services as well as build acommunity-based response that is sustainable (Pathfinder, 2008; UNAIDS,2006).Structural/Environmental • Needle/syringe exchange (WHO 2009; WHO 2010; WHO/DFID/Norwegian Embassy, 2010) • Structural interventions (e.g. bathhouses, brothels) (WHO, 2011; Chiao et al, 2009; Kerrigan et al, 2004) • Advocacy for human rights and services (Pathfinder, 2008; UNAIDS 2009; Swendeman et al, 2010; Jana et al, 2004) • Alternative income projects (Swendeman et al, 2010) • Occupational health interventions (e.g. Violence prevention, 100% condom use) (WHO, 2011; Jana, 2004)   7  
  8. 8. • Working with authority figures (police, government officials) (WHO, 2011; WHO, 2008; WHO/DFID/Norwegian Embassy 2010)The literature emphasizes the effectiveness of structural and environmentalinterventions to reduce levels of risk among key populations. The Thailand 100%Condom Policy is one of the earliest examples of how implementing a structurallevel intervention can result in reducing STI and HIV/AIDS prevalence levels(UNAIDS, 2000). Others have modified the Thailand intervention to use incontexts 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 localorganizations have implemented. Local organizations also work with authorityfigures and advocate for HIV/AIDS interventions that would otherwise not beimplemented without their actions. The Prevention HIV Project (PHP) in Vietnamis an example of an organization working with police by involving them in workgroups and in project management (WHO/DFID/Norwegian Embassy, 2010).PHP staff found that the police focused on arresting drug dealers verses drugusers since their participation in the project.Gaps in Service Delivery for Key Populations at the Community LevelThe major gap in the provision of services at the community level for keypopulations is the actual dearth of services. Pathfinder (2008) reports that one ofthe most underserved populations are injection drug users. The illegality of theiractivities combined with poverty and stigma and discrimination drive them tohide, 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 haveaccess to the HIV/AIDS services that they need. Even when services areprovided, they are not to the scale, quality or intensity that is necessary foradequate coverage of the populations (Zhou et al, 2009). Poor linkages alsoexist between service delivery points such as a non-governmental HIV testingcenter to a government run ARV site (WHO, 2010).Social FactorsSome of the social factors that are mentioned in the literature as restricting thedelivery and/or access of services for key populations include: • Restrictive polices for harm reduction services (UNAIDS, 2009; WHO, 2010; Kerrigan et al, 2004) • Stigma and discrimination (Pathfinder, 2008; Joshi & Dhillon, 2010; (WHO/UNAIDS/GIZ/MSMGF/UNDP, 2011; UNAIDS 2009; WHO 2010; WHO/DFID/Norwegian Embassy 2010) • Gender inequalities (Pathfinder, 2008; Swendeman et al, 2010) • Enforcement of laws towards illegal behaviors (drug use, paid sex, sexual acts) which restricted HIV/AIDS prevention, treatment, care and support   8  
  9. 9. programs (Pathfinder, 2008; UNAIDS 2009; WHO/DFID/Norwegian Embassy 2010)The literature discusses the social factors that prevent the implementation ofservices (e.g. needle exchange, treatment, detoxification programs) to keypopulations. The behaviors of the key populations are often stigmatized andthere are laws that forbade them, which increases the difficulty for keypopulations to access services. Sex workers do not report rape or sexual assaultto 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 areharassed by police, which is an additional barrier to reporting crime and seekingprotection (WHO, 2011). In Thailand, drug users do not access voluntarytreatment 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 harassorganizations that provide services to MSM, and puts MSM in danger of arrestwhen talking to a physician about risky sexual behaviors(WHO/UNAIDS/GIZ/MSMGF/UNDP, 2011).Non-governmental organizations advocate for human-right approaches thatreduce key population’s vulnerability to HIV infection. A Malaysian exampledemonstrates the complexity of how changing a prohibitive policy to a harmreduction one is slow (Narayanan, Vicknasingam, Robson, 2011). NGOsadvocate for change with multiple stakeholders and oftentimes discussions arestalled. The change in policy was helped by the fact that the current nationalprograms failed to produce positive outcomes and Malaysia did not reach the2005 Millennium Development Goals for HIV/AIDS. Therefore, there weremultiple factors that aided in the change from a prohibitive to a harm reductionpolicy (Narayanan, Vicknasingam, Robson, 2011).Programmatic FactorsSome of the programmatic factors that are in the literature as restricting thedelivery 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 neededbut there is a lack of organizations that can adequately respond. Organizationsmay not want to expand their services because of the stigma and restrictivepolicies and/or they may not have the capacity to effectively work with keypopulations. The fragmentation and duplication of services, the lack of   9  
  10. 10. coordination, and weak partnerships at the community-level is noted by theWorld Health Organization (2010, 2011) and UNAIDS (2009) as being additionallimitations in the response. Coordination needs to be strengthened so gaps canbe identified and interventions modified to fill those gaps. Stronger networks andpartnerships of key population organizations could result in a higher level ofadvocacy, empowerment, and service delivery at the local level.Community Based Services for Prevention to Mother-to-ChildTransmissionPMTCT services that are currently being implemented at the local level targetboth the individual/group and community. The interventions that target theindividual/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; OGorman, 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; OGorman, 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 communitylevel (Tomlinson et al, 2011; WHO, 2010; National Department of Health/SouthAfrica, 2008; PEPFAR, 2010; Gulaid, 2011). Arulogun et al report that up-take ofPMTCT services was low because of low population understanding andknowledge of PMTCT. Some women did not understand that their baby could beHIV negative when they are positive. Fitzgerald et al found that women are   10  
  11. 11. presenting late in pregnancy and/or in advanced stages of HIV disease soPMTCT services are less effective. Therefore, community mobilization andinterpersonal 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 highlightskey programs that build on existing PLHIV resources to increase demand, up-take and adherence to PMTCT programs. One notable program ismothers2mothers (M2M), which is implemented in nine countries (Gulaid, 2011).The M2M’s model has mothers living with HIV act as mentors to new mothers toimprove 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 anotherexample of people living with HIV working in health clinics and communities toincrease up-take of PMTCT services (Gulaid, 2011). In the beginning of theproject, only 1,264 women accessed PMTCT services but three years later over15,000 women accessed PMTCT (Gulaid, 2011).The use of community-health workers and traditional birth attendants is anothermechanism 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 isnecessary. Overall, community workers aid in reducing loss to follow-up,providing and increasing adherence to treatment, providing emotional andinformation support, providing linkages to other HIV/AIDS services, providing pre-and post- test counseling, and administering rapid testing. These workers areoften part of the community so are trusted and respected. They provide muchneeded services in areas were highly trained health care staff are limited.Gaps in Service Delivery for PMTCT at the Community LevelThe major themes from the literature on the gaps and challenges in the provisionof PMTCT services at the community level mostly include social andstructural/environmental factors.Social FactorsThe social factors included:• Lack of support (i.e. real or perceived) from key family members. Partners/husbands were the most mentioned followed by mothers, mother-in- laws, and grandmothers (Bwirire et al, 2008; Sarker et al, 2009; Peltzer et al, 2006; Bajunirwe & Muzoora, 2005; WHO 2011; Gulaid, 2011)• Health care worker attitudes (Kasenga, 2010)• Stigma and discrimination (Bwirire et al, 2008)   11  
  12. 12. • Fear that the mother has to rely on artificial feeding which is connected to social and cultural taboos (Bwirire et al, 2008; Sarker et al, 2009; Orne- Gliemann et al, 2006)• Low population knowledge of mother to child transmission and PMTCT services as well as overall healthcare facilities. (Arulogun et al, 2007; WHO 2011; National Department/South Africa, 2008; Fitzgerald et al, 2010)Support (either real or perceived) from key family members is an important factorin mothers accessing PMTCT services. Husbands and male partners are themost mentioned in the literature followed by mothers, mother in laws, andgrandmothers (WHO, 2011; OGorman, Nyirenda, & Theobald, 2010; Kasenga,Hurtig, & Emmelin, 2010; Karamagi et al, 2006; Bajunirwe & Murooza, 2005). Anumber 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 whothought that their husbands would approve of having a HIV test were about sixtimes more likely to report a willingness to be tested compared to women whothought that their husbands would not approve. The lack of support (either realor perceived) from key family members can also be a barrier to successfulutilization 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 todeliver at home or not. The majority of PMTCT services are available inhospitals; therefore, mother’s who deliver at home are less likely to accessservices.Stigma and discrimination reduces the utilization of PMTCT services. Womenreport not accessing PMTCT because of the stigmatizing attitudes of health careworkers. The overall prevalence of stigma and discrimination of people livingwith HIV at the community level is another barrier to accessing PMTCT. Forexample, some expectant mothers fear that they have to rely on artificial feedingif they access PMTCT, which is connected to social and cultural taboos in manycountries; therefore, they do not access services based on that fear.Structural & Environmental FactorsStructural/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; OGorman, Nyirenda, & Theobald, 2010; Karamagi et al, 2006; Tomlinson et al, 2011)• Lack of capacity of health care workers to provide quality care (Zachariah et al, 2010; PEPFAR, 2010; Sarker, 2009; National Department of Health/South Africa, 2008; WHO, 2011)   12  
  13. 13. • Poor working environment for health care workers [e.g. work load, capacity (e.g. uncomfortable discussing risk behaviors with clients), disruption of services/supplies] (Sarker, 2009)The literature reports a lack of accessible, acceptable and affordable PMTCTservices at the community level. Women note not accessing services because oflong wait times at the clinic and transport costs. Quality pre-test counseling iskey for women to access PMTCT services. Sarker found that there wereNational Guidelines on how to appropriately provide pre-test counseling but theactual practice varied a great deal. PMTCT covers a range of services andTomlinson et al found that services such as postnatal care and maternal mentalhealth support are lacking. Therefore, in some settings, the quality andavailability of all the necessary services to make a PMTCT program successfulare lacking.  Community Based Services for Behavior Change ProgramsBehavior change programs are a prevention method to support positive individualcognitive and behavioral determinants as well as to change hindering communitynorms, create demand for services, affect pro-health policies, create an enablingenvironment and influence other key factors to reduce transmission andacquisition of the HIV virus. The community-based behavior change programsthat are in the literature are at the interpersonal, community and structural levelsand include:Interpersonal (individual/group): • Interpersonal discussions (e.g. individual/group) (Lipovsek et al, 2010) • Peer group interventions/Support groups (e.g. in-depth sexual behavior interviews, HIV/STD risk-reduction counseling) (Reza-Paul et al, 2008; Mbeba et al, 2011; Van Rompay et al, 2008; Cornish & Campbell, 2009; Maticka-Tyndale & Barnett, 2010; Medley et al, 2009; Yang et al, 2011; Spaar et al, 2010; Sweat et al, 2006) • Condom provision (Spaar et al, 2010; NIMH Collaborative HIV/STD Prevention Trial Group, 2010; Lugalla et al, 2004) • Outreach (Reza-Paul et al, 2008; Van Rompay et al, 2008) • Training (e.g. improve knowledge, skills and other cognitive/behavioral outcomes; training-of-trainers) (Babalola et al, 2001; Bradley et al, 2011) • Behavior change programs at service delivery sites (Spaar et al, 2010) • Referrals to HCT, care and support, and treatment (e.g. ARV and STI) (Van Rompay et al, 2008) • IEC material distribution (Sweat et al, 2006; Lipovsek et al, 2010; Birdsall & Kelly, 2005)Community:   13  
  14. 14. • Community mobilization to increase knowledge, attitudes, and behaviors as well as increase support for prevention interventions (Reza-Paul et al, 2008; Babalola et al, 2001; Sweat et al, 2006) • Street theatre (Van Rompay et al, 2008; Birdsall & Kelly, 2005) • Public events (Lipovsek et al, 2010; Birdsall & Kelly, 2005) • Diffusion through networks (Bradley et al, 2011)Structural: • Structural interventions (e.g. policies) (Sweat et al, 2006; Kerrigan et al, 2006; Geeta et al, 2008; Cohen, Scribner, & Farley, 2008) • AIDS education in schools (Lugalla et al, 2004)Each of the above interventions is often not mutually exclusive but involve anumber of activities. For example, Van Rompay et al’s program trains outreachworkers, women’s group leaders and barbers as peer educators and includecartoon-based educational materials and street theatre to inform the populationabout HIV/AIDS issues. Spaar et al describes prevention interventionsimplemented at ART sites, and they found that the majority offer condoms andare modified to reach women and adolescents. Therefore, there is usually a mixof activities in behavior change programs and they often do not rely on only oneintervention.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 etal, 2011; Spaar et al, 2010; Sweat et al, 2006). Peer education programs oftenresult in positive change in cognitive and behavioral factors such as knowledge,attitudes, self-efficacy, condom use and reduction of partners. However, there isless evidence of programs directly resulting in the reduction of STI/HIV/AIDSincidence and prevalence levels. Medley et al (2009) conducted a meta-analysisof peer education programs in developing countries and found that they had apositive affect on knowledge, showed reduced equipment sharing for injectiondrug users, and increased condom use but had a non-significant affect onbiomarkers such as STIs. Despite this lack of evidence on peer educationprograms on biomarkers, they are still recommended to support positivecognitive and behavioral determinants of at-risk populations.Interventions such as community mobilization, street theatre, and diffusionthrough networks are implemented to affect community-wide factors (Reza-Paulet 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 afavored intervention to garner support and action around certain health needsand interventions. Community meetings, involving key stakeholders, and targetpopulation participation in all aspects of a program’s development andimplementation are all examples of community mobilization activities. Streettheatre is used to dramatize complex topics in an entertaining and humorous   14  
  15. 15. manner. One of its goals is to stimulate community discussions about taboo andsensitive topics. Pelto & Singh (2010) implement a street theatre project toreduce 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, whichincreases acceptance of the messages.Gaps in Service Delivery for Behavior Change at the Community LevelPreventing HIV transmission to reduce overall HIV/AIDS incidence andprevalence rates is a long-term goal of most national and international programs.Preventing transmission is complex and each country strategy needs to betailored to its unique social, cultural, and epidemiological context.The major gaps and challenges in implementing behavior change programsinclude: • 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 moreeffective, targeted, and coordinated responses (UNAIDS, 2007; UNAIDS (2),2007; Piot et al, 2008; McCoy, Kangwende, & Padian, 2010). At the communitylevel, there are behavior change programs being implemented but they may onlybe directed at increasing knowledge about HIV/AIDS and not aimed atinfluencing other causal determinants to behavior such as community norms orstructural factors. Effective programs are also being implemented at thecommunity-level but they are often not to the scale, or coordinated with mutuallybeneficial programs, necessary to influence population wide behavior change.The capacity of non-governmental and civil society organizations needs to bestrengthened so effective programs are implemented to the quality, intensity andscale necessary to effect both individual and community-wide change.It is recommended that national programs provide a range of evidence-basedbiomedical, behavioral and structural prevention interventions that meet theirspecific social, cultural, and epidemiological context (Hankins & de Zalduondo,2010; Coates, Richter, & Caceres, 2008; Merson et al, 2008; Piot, 2008).   15  
  16. 16. National HIV/AIDS strategies need to know where their next 1000 HIV infectionsare coming from and target prevention interventions to those populations andareas. UNAIDS (2007) notes that coordination is key among implementers sothe response is more efficient and non-duplicative. UNAIDS (2007) also adviseson strong national leadership to direct the vision of the strategy to achieve itsgoals.Resource, cultural and gender barriers remain which diminishes theeffectiveness of prevention programs. Lack of funding for prevention programshas been noted by several sources as a major constraint (Spaar et al, 2010; Piotet al, 2008, UNAIDS (2), 2007). Stigma and discrimination prevail which affectsthe response at all levels. It hinders politicians in supporting human-rightapproaches, results in uncompassionate care of health care workers for peopleliving with HIV/AIDS, and influences women into not disclosing their status totheir husbands. Transactional and intergenerational sex are based on the socialand economic inequities of societies (UNAIDS (2), 2007; Spaar et al, 2010).Women are in positions that make them behave in ways that they may nototherwise if they were in a different economic, social, and cultural setting.UNAIDS (2) outlines policy and programmatic actions to reduce genderinequalities, gender-based violence, and intergenerational sex includingreviewing and reforming gender inequitable legislation as well as ensuring itsenforcement, implementing community-based programs to influence male normsthat rejects domestic violence and promotes sexual responsibility, and workingwith other government sectors to reduce women’s vulnerability (e.g. keeping girlsin school and property rights).Community Based Services for Condom Promotion andDistributionThe effectiveness and importance of consistent and correct condom use is wellestablished in the literature. Community-based services for condom promotionand distribution that are presented in the literature are at the individual,community and structural levels. They include:Interpersonal: • Interpersonal approaches to increase knowledge, correct use, demand, negotiation skills, partner communication and self-efficacy (Population action international, 2008; Choi et al, 2008; Jones et al, 2008; WHO, 2009; Zhongdan et al, 2008) • Peer groups and social networks (Wang et al, 2011; ICASO, 2009; Morisky et al, 2005) • Condom distribution (Doyle et al, 2010; Zhongdan et al, 2008)Community:   16  
  17. 17. • Community-based distribution approaches (e.g. music shops, ice cream parlors, beauty salons, theatres, stadiums) (Population action international, 2008; UNFPA/WHO/PATH, 2005; Harris et al, 2011) • Community mobilization to increase demand, correct and consistent use, and empower individuals/groups for collective action (Blankenship et al, 2008; Williams & Campbell, 1999; Green et al, 2006) • Condom promotion (Michielsen et al, 2010; Wade et al, 2010; UNFPA/WHO/PATH, 2005; WHO, 2007) • Condom provision at low cost or free of charge (WHO, 2009; WHO, 2007) • Provision of lubricants (WHO, 2009) • Linkages to or integration with other programs (e.g. HTC, PMTCT, STI, ARV, youth services) (Population action international, 2008; Sabido et al, 2009).Structural: • Structural interventions (e.g. condom availability in MSM bathhouses, brothels, Sonagachi Project) (Ko et al, 2009; Ghose et al, 2008; UNAIDS, 2000; Zhongdan et al, 2008) • Advocacy for supportive polices and environment (UNFPA/WHO/PATH, 2005). • Workplace condom promotion and provision (UNFPA/WHO/PATH, 2005) • Social marketing through hair salons, barbershops, small entrepreneurs (UNFPA/WHO/PATH, 2005)Demand, Acceptability, and Use of CondomsThe above programs predominately aim to increase demand, acceptability anduse of condoms. Programs seeking to increase demand, acceptability, andultimate use of condoms are implemented at the individual, community andstructural levels. At the individual level, behavior change programs and peergroups and networks have been used to influence individual cognitive andbehavioral 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, andpartner communication to increase the likelihood that condoms will be used in alltypes of partnerships. Wang et al conducted a review of the effectiveness ofsocial networks in improving condom use and found that the majority improved atleast one condom use measure. Choi et al found that improving knowledge andskills on female condoms increased use. On the community level, Blankenshipet al found that sex workers who had a higher sense of control over their workwere more likely to use condoms, which demonstrates that communityempowerment approaches positively affect health. Having condoms available inphysical structures such bathhouses and brothels increases demand,acceptability, and use of condoms as well. Therefore, there are effective   17  
  18. 18. prevention interventions that do positively influence the demand, acceptability,and use of condoms.Availability of Quality and Low-Cost CondomsThe 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 condomsas well as to increase their availability. The provision of condoms and lubricantsfor free or at low costs also is a factor in use. WHO stresses the importance ofproviding quality condoms (both male and female) at an affordable price.Condom social marketing is one program that aims to increase the availability ofquality and low-cost condoms at local distribution points to increase use. Harriset al attempted to increase condom use among at-risk youth by distributingcondoms at salons, music stores and ice cream parlors. Cohen, Scribner, &Farley outline four categories of structural interventions which increases theavailability 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 successfulprograms to implement to influence the availability, demand, acceptability anduse of condoms.Gaps in Service Delivery for Condom Promotion and Distribution at theCommunity LevelThe major themes that emerge from the literature on the gaps and challenges inimplementing condom promotion and distribution programs at the communitylevel 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 everyperson has access to them is yet to be achieved. Supportive policies and fundsto purchase the mass of both male and female condoms necessary to reachuniversal access is a challenge in most countries. Even at the individual level,the high costs of female condoms make them unattainable to many. Advocacy topolicy makers and other key opinion leaders will aid in the development andsuccessful implementation of pro-condom policies, which will improve availabilityand lower cost. Donors fund the acquisition of condoms but more needs to beaccomplished so every person who needs a condom has access to them.   18  
  19. 19. Barriers to condom use, which affects demand, include personal myths,perceptions, dislikes and fears as well as larger cultural and social barriers suchas gender and religion. The promotion of the consistent and correct use ofcondoms can address some of these barriers in a socially desirable mannerthrough interpersonal communications, community mobilization, advocacy andmass media. However, barriers will persist and innovative means will need to befound to ensure that condoms are available and accessible. For example,Birdstall and Kelly (2005) found that the majority of government institutionsprovided 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 highnumber of FBOs and distribution will have to be provided through other means.Community Based Services for Treatment, Care, and Support forPeople Living with HIV/AIDSCommunity mobilization activities and community-based services for treatment,care and support programs are at the interpersonal, community and structurallevels.Interpersonal and Group Level InterventionsThe 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 theinvolvement of people living with HIV (PLHIV) in the delivery of treatment, care,and support services (Lyttleton, Beesey, & Sitthikriengkrai, 2007; AIDSTAR-OneBroadReach; AIDSTAR-One ZPCT; AIDSTAR-One DREAM). Their involvementranges from acting as peer educators to aiding in the delivery of comprehensiveprograms. The Drug Resources Enhancement against AIDS and Malnutrition(DREAM) project has mothers who are living with HIV act as peer educators todeliver health education provide support to other HIV-positive mothers. TheZambia Prevention, Care and Treatment Partnership (ZPCT) and BroadReachHealthcare Down Referral Model in South Africa both employ PLHIV as peer   19  
  20. 20. educators and speakers to increase up-take of services and increase adherence.Lyttleton, Beesey, & Sitthikriengkrai’s project involves PLHIV by aiding in follow-up and increasing adherence to treatment. Hatcher et al found that patients whoreceived a PLHIV visit were more likely to enroll in treatment; therefore, PLHIV’sinvolvement in services equates to better health outcomes.Other behavior change programs include the development of risk reductionplans, provision of condoms at specific services, providing nutritional support,assisting HIV-affected families, and implementation of income generationprojects. World Bank (2) found that PLHIV in support groups had higher rates ofARV adherence compared to those who were not involved in support groups.Posse & Baltussen found that one of the largest barriers to treatment was thelack of community and patient information, negative attitudes towards treatment,and lack of family support. Therefore, promotion and information building at theindividual and community-level is key to increase up-take and acceptance of life-prolonging services.Community and Structural Level InterventionsCommunity/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 importantcomponent of treatment, care and support services implemented at thecommunity level (Baiden et al, 2007; Muñoz et al, 2011; AMPATH, BroadReach;TASO; ZPCT; UYS, 2002; Nanney et al, 2010). Their tasks are to promote HIVtesting and counseling; increase ARV adherence; provide counseling, symptomcontrol, and welfare assistance; and provide palliative care services. Nanney et   20  
  21. 21. al’s project is based in hospitals but organized teams of health care workers togo into communities to provide a continuum of care. The trained volunteers andhealth care workers are linked to community resources, which lead to morepeople living with HIV (PLHIV) both accepting and assessing palliative careservices. Baiden et al found a high acceptance of using lay counselors andhome-based VCT in rural Ghana.Community- and home-based HIV counseling and testing (HTC) is noted bymany researchers and practitioners as a way to scale-up testing in a culturallyappropriate manner (Sweat et al, 2011; Khumalo-Sakutukwa et al, 2008; Tedrowet 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 programincludes multiple components such as mobile HTC and post-test support as wellas forming community associations to increase awareness, support andpartnerships. Choko et al’s program uses an innovative model in whichindividuals 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 inadvocating for a human-rights approach to treatment, care and support services.The Treatment Advocacy and Literacy Campaign (TALC) in Zambia is makingmajor achievements in increasing access to services. In a recentannouncement, TALC congratulates the government in eliminating user fees atboth rural and urban clinics but notes that more needs to be done to improveaccess. Lyttleton, Beesey, & Sitthikriengkrai report that the work of the ThaiNetwork for People Living with HIV/AIDS made treatment more accessible tothose who need it, and are continually engaged in national discussions toimprove services to those most in need.Strong linkages between prevention, treatment, care and support programs arevital 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 strongprograms that do provide linkages between services in their programs. Forexample, the TASO program in Uganda offers behavior change counseling,offers HTC to the family, and employs lay workers to deliver ART to homes on aweekly basis. The lay workers also monitor patients and provide referrals toclinics for further care and psychosocial support. Konate et al’s program inBurkina Faso integrates a peer-led prevention program with ARV treatment andcare services for high-risk women. However, loss to follow-up is common andlinkages between services can be weak. In Barr’s report, the Mozambiqueexample demonstrates how many people living with HIV are lost to follow-up anddo not seek or adhere to treatment. The report recommends that community-   21  
  22. 22. based providers are in a unique position to offer a wide range of services, andone of those services is helping PLHIV access services and adhere to treatment.Gaps in Service Delivery for Treatment, Care, and Support Services at theCommunity LevelThe 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; Olango, 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 LocalesTo have universal access to treatment, care and support services adequateresources need to be available such as funding, infrastructure, human resources,capacity building, community participation, involvement and support to CBOs inproviding services, continuous drug supplies, and information managementsystems (WHO/SEARO/WPRO 2009; WHO/UNAIDS, 2007; Moon et al, 2011).The literature notes that there are inadequate services, especially for specificpopulations and locales. The most underserved populations are for keypopulations 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 keypopulations is noted above, but several authors report the dearth of services forthose who live in rural areas as well. Services that are lacking in rural areasinclude basic health care as well as HIV services such as HTC, ARV, andpalliative care (Baiden et al, 2007; Moon et al, 2011; Nanney et al, 2010; Lidgrenet al, 2010). Sekandi et al reports that there is a lack of HTC services in urbanas well as rural areas in Uganda; therefore, they are implementing a home-basedHIV counseling and testing project to increase up-take of testing.Use of Volunteers in Bridging the Human Resource GapHuman resources and their capacity is also a constraint in scaling-up services.WHO/UNAIDS (2007) recommends that community-based organizations andother civil society groups be sources of skilled lay people to increase the scale-up of services. Unpaid community-based workers and volunteers are also being   22  
  23. 23. used to fill important gaps in the health care system. However, having volunteersbridge the human resource gap has its challenges and should be adequatelysupported for it to be successful. Budlender’s report outlines how manyvolunteers are under trained and under supported by organizations that theywork with. For example, one key item that home based care volunteers need aregloves yet only 41% of volunteers received this assistance (Budlender, 2010).Another finding was that volunteers are unpaid but they incur costs whileproviding assistance such as paying for transport, buying their own materials,and giving assistance to patients (Budlender, 2010). Capacity must also beaddressed. Rujumba, Mbasaalaki-Mwaka, & Ndeezi found that health careworkers’ capacity to provide HTC for children is limited and needs to bestrengthened. Therefore, using lay staff and volunteers are a means to addressthe 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. Thevolunteer attrition rate is only 33% due to lack of support to the workers, difficultworking environment, and a lack of transparency between the NGOs andvolunteers. For example, volunteers describe how the non-paid nature of theirwork places stress on their already stretched families. Women volunteers maynot 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 paidwork then more men would be employed, but this raises cultural and genderissues as well. Women are seen as more compassionate and better able toadequately care for sick individuals. Patients also are more comfortable withwomen caregivers. Other reasons for low attrition rates include volunteers beingasked by patients and patients’ families for medicine and other support but beingunable to provide it, an “unfair” distribution of trainings among volunteers, andvolunteers leaving one NGO for another that may provide better benefits(Olang’o, Nyamongo, & Aagaard-Hansen, 2010).Constraints on Health Care WorkersThe constraints placed on health care workers are also a barrier to adequatecare and support. Rujumba, Mbasaalaki-Mwaka, & Ndeezi reviewed theconstraints in providing HTC to children in Uganda. They note that few staff leadto heavy work loads, lack of training on specific children who are living with HIVissues, limited space for children-friendly clinics, and lack testing kits allcontributed to a difficult work environment. The Academic Model for ProvidingAccess to Healthcare (AMPATH) in Kenya found that program success wasimproved by increasing the morale of home care workers. Reducing hours andpatient load as well as providing incentives for excellent work improved morale.Campbell et al describe a successful ART program in Zambia but found thatexpectations around quality care differed among the nurses and patients, whichcaused conflicts. For example, patients complained of long wait times, numerousvisits to the hospital, and cost of services where as nurses often did not view   23  
  24. 24. these aspects of care as overly problematic since they were providing the bestcare possible. Therefore, if some of these institutional constraints and/orunderstandings are rectified, both patients and clinicians would be more satisfied.Social and Cultural BarriersSocial and cultural barriers such as stigma and discrimination and genderinequalities still abound in limiting access and availability of services. Onyangoreports that most caregivers in rural Kenya are women, and that they are notaware 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 rejectedif 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 HIVpositive blame the patient, which could stress the relationship between thepatient and caregiver. Baiden et al conducted a study in a rural community inGhana to gauge their approval for HTC services being provided by lay workers.They also gauged the level of stigma in the community and found thatmisconceptions still persist such as fearing HIV infection by drinking from thesame cup as a PLHIV, not thinking a PLHIV should teach school, and notwanting to buy vegetables from a PLHIV. Therefore, the high level of stigma inthe community may limit up-take of HTC and other HIV services in thatcommunity.Community Based Services for Male CircumcisionCommunity mobilization activities and community-based services for malecircumcision 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 oftenimplemented to increase knowledge, acceptance, support, promotion and   24  
  25. 25. demand for MC services (Mahler et al, 2011; Lissouba et al, 2010; WHO (2),2009; Mwandi et al 2011; Obure, Nyambedha, Oindo, 2011; Hankins, Forsythe,Njeuhmeli, 2011; Bertrand et al, 2011; C-Change, 2009). The engagement ofkey community influencers such as chiefs and traditional male circumcisers arealso involved to increase acceptance and up-take of MC services. Kenya’sVoluntary Medical Male Circumcision (VMMC) Communication Guide for NyanzaProvince outlines various behavior change communication activities to increaseawareness, acceptance and demand for male circumcision. They implementoutreach interventions, community theatre, public and sporting events, anddistribute communication materials on male circumcision. Obure, Nyambedha, &Oindo found that relationships with peer and youth groups and communityleaders both constrained and supported the scale-up of MC services. Forexample, the youth in the study state that other youth and youth groups shouldbe involved in increasing demand and up-take of MC services to make it morerelevant to their lives. Participants have conflicting views on the need to havecommunity leaders and politicians support MC. Some thought that their supportis vital for the successful implementation of MC services while others think that itis an individual’s decision to get circumcised and not a community one. Obure,Nyambedha, & Oindo recommend that MC programs partner with these socialnetworks to improve up-take of services.The rollout of male circumcision services focuses on communities with lowcircumcision rates (WHO/UNAIDS (2), 2010). However, it is important not toneglect communities that offer traditional male circumcision (TMC) as well. Malecircumcision is a rite of passage for adolescents in certain communities, andmany of them do not have access to facility-based MC. Therefore, buildingrelationships between communities that have traditional male circumcision withthe medical MC service providers will help develop understanding between thetwo 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 Africaregion on how to engage and work with traditional male circumcisers and TMCcommunities. The priority areas from the meeting were to improve thecollaboration between TMCs and the formal health sector; improve the safety ofTMC and its effectiveness for HIV prevention; and to improve the MC options formale adolescents to ensure they have a safe, effective and pain-free experience.Another means to engage the community in male circumcision services is tocreate Community Advisory Boards (CABs). WHO and UNAIDS bothrecommend the formation of CABs that include local leaders, non-governmentalorganizations, government officials, church leaders, and scientists. Theseboards can be avenues to seek community suggestions and concerns as well asreceive feedback on how to improve services. Lissouba et al’s project in SouthAfrica describe the success in developing a CAB. The CAB is active in theproject and effective in gaining support among the community for the MCservices. For example, the CAB reviews all project documentation and provideshelpful suggestions on how to improve the services.   25  
  26. 26. Other services that are mentioned in the literature are having volunteers orcommunity-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 circumcisionservices” on how to appropriately engage volunteers. The scale-up of MCservices is rapid in many sub-Saharan countries so the use of community-basedvolunteers is essential. Mahler et al describe how community-based healthworkers counsel, test and schedule clients for MC services, which aids inprogram success. Other needs are often identified when men present for MCservices. WHO/UNAIDS (2010) describe how some MC clinics offer sexuallytransmitted infection (STI) services either on-site or refer to a nearby clinic.Condoms are often available and sometimes those who test positive areprovided CD4 counts. PLHIV are also referred to ARV sites for treatment.Gaps in Service Delivery for Male Circumcision at the Community LevelThe 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 beimplemented in national HIV programs. National programs are beginning toimplement male circumcision programs in selected areas and populations. Thereare resource limitations in the implementation and scale-up of programs includinglack of human resources, lack of infrastructure, and lack of sustainable funding.Herman-Roloff et al report that the Government of Kenya allows trained nurses toprovide MC services in scale-up since there is a lack of human resources incountry. Curran et al describe how various MC programs solve the lack ofhuman resources by task shifting, deploying staff from other parts of the healthsector to aid in the implementation of services, and recruiting staff who hadrecently retired or had recently qualified as health care workers.Lack of infrastructure and sustainable funding is also noted as challenges inproviding long-term MC services. The rapid scale-up of MC services in specificcommunities places stress on existing clinics. Herman-Roloff et al found inKenya that no health facility is conducive to offering the minimum package of MCservices as is prescribed by the national guidelines. WHO (2009) developed aMale Circumcision Situation Analysis Toolkit to aid MC specialists on accessingnational, district and community health care systems to improve services (Budge-Reid et al, 2009). Tool 5 focuses on accessing what services are available andhow to address the gaps identified (Budge-Reid et al, 2009). For long-termsustainability, a consistent funding supply must be found. The recentimplementation of services is mostly funded by donor organizations and   26  
  27. 27. sustainability for providing MC services in the long-term is questioned. Whilemost national programs are still strategizing on how to diversify funding, oneinnovative approach from Kenya is to use private insurance to help individualspay for MC.Six Programmatic Questions on the Community’s Role in theScale-up of Services 1. Which specific elements are communities uniquely positioned to address?Communities are uniquely positioned to quickly recognize needs in thepopulation and to respond to those needs with their available material andhuman resources (Birdsall & Kelly, 2005). They are also able to forecast howneeds 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 arenumerous community organizations and clubs that provide different levels ofsupport for HIV and AIDS-affected individuals and families (Nhamo, Campbell,Gregson). In addition, independent grass roots initiatives are filling an importantgap at the local and district level (Birdsall, Ntlabati, Kelly, & Banati, 2007.).According to a study conducted by Birdsall and Kelly (2007) in the SouthernAfrica region, 61% of civil society organizations (CSO) were based in urbanareas 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 onproviding prevention interventions, broadly defined, as both awareness andinformation giving as well as specific services including HIV testing andcounseling (HTC) and prevention of mother-to-child transmission (Birdsall &Kelly, 2005; Birdsall & Kelly, 2007). The most numerous prevention activitiesinclude behavior change interventions, condom promotion, and life skills (Birdsall& Kelly, 2005). Care and support activities are predominately provided by CSOsand 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) evaluationalso 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 andimpact mitigation interventions followed (15% and 6%).   27  
  28. 28. 2. How do we define community in this work—especially local communities?Definitions of community often have common components such as having asense of belonging to the group, sharing common values, and feeling that theirneeds can be met through inclusion in that group (McMillian & Chavis, 1986;McDermott, 2000; MacQueen et al, 2001; World Bank, 2011). Community canbe based on geography but it is not essential to develop a cohesive group(McMillian & Chavis, 1986). Groups that share a sense of community could befounded 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 ageographic 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 avillage or city. Communities based on having a similar cultural identify areusually individuals who share a common set of values, circumstances, lifeexperiences, and behaviors such as people living with HIV/AIDS, a religiouscommunity, women’s groups, or men who have sex with men.Defining local communities in HIV and AIDS work is parallel to the definitionsabove. There is a need for individuals to feel a sense of membership; have a setof common values, needs and goals; and feel that some of their needs can bemet through their participation in that community. These elements are essentialfor higher-level collective responses including community-based responses andmobilizing 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 HIVcrisis if they have the means to do so. Traditionally, civil society played animportant role in the health sector. They are able to connect with and respond tocommunity needs in an efficient and rapid manner [Kelly & Birdsall, 2008; Katz,1997; UNAIDS, 1998; UNAIDS, 2001]. The rapid response to the HIV epidemicby CSOs has demonstrated success in HIV and AIDS prevalence rates in themen 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 riskperception, and condom use in communities that had more CBO engagement.In addition, local CSOs are able to form networks with higher level CSOs toensure that systems are created for addressing policy and overall strategy issues   28  
  29. 29. (Kelly & Birdsall, 2008; Strand, 2011; Narayanan, Vicknasingam, Robson, 2011;Jones, 2005). While some current studies show strong disengagement of CSOsin advocacy (Kelly & Birdsall, 2010; Kelly & Birdsall, 2008), there are otherexamples that demonstrate their effectiveness in responding to pertinent nationalissues (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 passa policy to support harm reduction interventions (Narayanan, Vicknasingam,Robson, 2011). In Uganda, human rights groups were moderately successful ingenerating discourse around an anti-Homosexual Bill (Strand, 2011).Recently, CSOs have become stronger partners in providing health careservices. For example, in Tanzania, 40% of health services are delivered byfaith-based organizations (Kelly & Birdsall, 2008). There has also been a shiftaway from advocacy to service delivery caused by the rapid scale-up of HIV andAIDS interventions and services (Kelly & Birdsall, 2010). While this has aidedmillions in accessing much needed prevention, treatment, care and supportservices, CSOs have shifted away from their advocacy and accountability role(Kelly & Birdsall, 2008; Kelly & Birdsall, 2010). A gap has, therefore, developedin the national level discourse since CSOs’ are now focused more on servicedelivery 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 theiradvocacy/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 keeppace with the funding. One study found that the number of CSOs involved in HIVand AIDS has grown by 61% since 2000 (Birdsall & Kelly, 2005). CSO programsalso reflect the amount of funding in the different areas of HIV and AIDS, whichsuggests that funding is shaping the national response and not advocacy fromthe communities (Kelly & Birdsall, 2010).Traditionally, CSOs have paved the way on how health care services should beformed and delivered (UNAIDS, 2001; Katz, 1997); however, the current fundingstreams 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 servicedelivery, and there is an actual reduction in the amount of CSOs involved inadvocacy and policy development. Much less attention was paid to HIV and   29  
  30. 30. AIDS-related policy and advocacy issues (Kelly & Birdsall, 2010). Many CSOsreceive funding from governments or international NGOs and advocating for anissue that is not supported by the funders may be risky (Spicer et al, 2011). TheTreatment Advocacy and Literacy project in Zambia note that advocacy couldsometimes be perceived as anti-government; therefore, the voice of CSOs ispacified in fear of losing funding (Treatment Advocacy and Literacy; Spicer et al,2011). The Treatment Advocacy and Literacy project recommends working withgovernment and trusted partners of government to build strong workingrelationships so advocacy can be effective.In addition, when donors have a prescribed set of programs that they arefunding, it leaves little room for CVOs to propose and implement something else.For example, Lindgren et al implemented a mobile clinic program in Malawi thatprovided HTC, referrals to treatment, TB and STI services, antenatal care, anddiagnosis and treatment of malaria. It was found that the program needed to beflexible and responsive to the community’s needs since during the rainy seasonthe malaria services were required more than the HIV services. The programthen shifted to ensure that malaria tests and medicine were available. Not allorganizations have this same level of flexibility for their donors to modifyprograms based on the community’s needs.Recommendations have been given by the sources below on how to strengthenCSOs so they can provide a service delivery role as well as play a prominent rolein leading the HIV and AIDS response. They are: 1. Support rights and advocacy-oriented civil society initiatives (Kelly & Birdsall, 2008) 2. Allow CSOs to design how civil society in a specific country should be organized, not development partners (Kelly & Birdsall, 2008; Campbell & Cornish, 2010) 3. Strategically increase the amount of funding to community-based organizations and not have a “one-size-fits all” scale-up approach (Kelly et al, 2005; Campbell & Cornish, 2010; Birdsall & Kelly, 2007) 4. Support CSOs as long-term institutions to increase sustainability (Birdsall & Kelly, 2007) 5. Strategically build the capacity of CSOs based on their individual needs in areas such as technical skills (e.g. HIV/AIDS thematic areas, research, policy, advocacy); human resources; and program, institutional, administrative, and financial management (Kelly et al, 2005; Birdsall et al, 2007; Birdsall & Kelly, 2007; Szekeres, Coates, Ehrhardt, 2008; Oomman, Bernstein, Rosenzweig, 2007) 6. Build local systems to coordinate community responses (Kelly et al, 2005; Birdsall et al, 2007; Birdsall & Kelly, 2007) 7. Ensure predictable funding so CSOs can plan and advocate for the long- term (Birdsall et al, 2007; Kelly & Birdsall, 2010)   30  
  31. 31. 8. Build linkages between local and national CSOs for networking, information sharing, coordinating, and advocating for shared needs (Birdsall et al, 2007; Campbell & Cornish, 2010)From the recommendations above, HIV/AIDS leaders, funders, and civil societycan strategically move forward. Recommendations 1 (“support rights andadvocacy-oriented civil society initiatives”), 2 (“allowing CSOs to design how civilsociety in a specific country should be organized, not development partners”), 3(“strategically increase the amount of funding to community-based organizationsand not have a “one-size-fits-all” approach”), and 7 (“ensure predictable fundingso 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 moreof a service delivery and advocacy role. Schwartlander et al (2011) call for anincreased emphasis on communities providing HIV/AIDS services in an attemptto improve the response to the epidemic. To accomplish this goal, much needsto be done in how funds are currently allocated to CSOs since this seems to be amajor 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 ServicesThe institutions and organizations that are involved in the HIV/AIDS responsespan across government and non-governmental organizations. Civil societyorganizations (CSOs) are highly involved in the response and encompass arange 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 specialinterest groups such as youth, people living with HIV/AIDS, and womenassociations as well as the media, traditional healers & leaders, and professionalassociations (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 churchesto national and international FBOs (Birdsall & Kelly, 2007). There are also anumber of examples of organizations that do not receive funds or support fromlarger NGOs but provide much needed services to the community (Birdsall &Kelly, 2007; World Bank, 2011).Majority of Funds Going to Small Portion of OrganizationsIn Oomman, Bernstein, Rosenzweig, donors provide the largest amount ofHIV/AIDS funds to support national responses. It also states that governmentfunding only comprised of 5% or less of the national HIV/AIDS budget (Oomman,   31  
  32. 32. Bernstein, Rosenzweig, 2007). The largest HIV/AIDS donor is the USPresident’s Emergency Plan for AIDS Relief (PEPFAR) followed by Global Fundand the World Bank MAP project. PEPFAR allocates most of its funds tointernational-NGOs, or INGOs, based on their capacity to meet targets, managefunds, and implement programs quickly (Oomman, Bernstein, Rosenzweig,2007). Kelly & Birdsall (2010) report that the INGOs’ budgets in their six-countrystudy 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 areINGOs. Therefore, even though 75% of organizations working on HIV/AIDSissues 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 toHIV and AIDS and also did an analysis of funds being allocated to CSOs. Theirevaluation 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 offunding 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 byaccessing domestic resources through national grants. CBOs do not receive alarge portion of funds through international donors. Both found that the amountavailable through international donors do not reach local organizations to a largedegree.Relationships Between Different Types of OrganizationsThe relationship between INGOs and local CBOs/NGOs is complex. Aveling(2010) notes that the relationship between INGO and local organizations hasbenefits to local organizations and communities such as being able to accessfunding, improved access to health services, and recognition from the nationalsystems for their work. However, there are conflicts between the INGO and localCBOs/NGOs linked to funding and overall capacity. Aveling outlines how localorganizations lack the capacity to access funds themselves, which leads to theirlack of decision-making power and being seen as recipients of programs and notleaders. In addition, local NGO/CBOs have to follow the prescriptions of thatcentral INGO. For example, the local organization will not help develop the peereducation manual that will be used in the program but will use the manual that isprovided by the INGO (Aveling, 2010). Important characteristics of thecommunity could be lost in the intervention without their involvement. Therefore,local organizations often lose their voice to larger, higher capacity, INGOs sodonors can meet targets and manage funds appropriately.Building Capacity of Local Organizations so They Can Shape the ResponseThe capacity of local organizations needs to be strengthened if they are to leadthe response. CBOs and local NGOs have a smaller number of staff, work in an   32  
  33. 33. environment where there is a low level of coordination, and experience hugepopulation demands. While local organizations may see where the gaps lie inprogramming, they have difficulties absorbing and managing funds based ontheir lower capacity (CADRE, 2007). Often to receive funding organizations needthe capacity to write a solid proposal, past experience in the field in which theyare applying in, and ability to manage funds. These higher-level organizationalfunctions are often possible for international and national NGOs but not for thesmaller CBOs, which effects their autonomy and leadership at the communitylevel (Kelly & Birdsall, 2010). Oomman, Bernstein, Rosenzweig, 2007 also notethe discrepancy between INGOs and local organizations in their ability to meettargets, manage funds, and implement large-scale programs in their report.Donors often fund a smaller number of higher-capacity organizations to achieveresults and manage effectively verses funding a large number of smaller-capacitylocal organizations. If international and national leaders want to move to morecommunity-based responses, then local organizations need to develop theircapacity.Partnerships and CoordinationPartnerships and coordination between organizations could be seen as strongbased on the large percentage of CSOs (85%) being linked into networks, whichaugments information sharing and harmonization (Kelly et al, 2005; Birdsall &Kelly, 2007). However, Kelly et al (2005) found that partnerships andcoordination between the local NGOs was weak. There were various levels ofcoordination between government and community organizations and betweenCBOs themselves, but the local systems needed strengthening (Kelly et al,2005). In addition, while many NGOs were part of a network with otherorganizations, it was found that mistrust and competition often supersededinformation sharing and advocating for common interests based on competitionfor funds (Kelly et al, 2005). Therefore, while there are a large number of CBOsand local NGOs implementing much needed HIV and AIDS services, theircapacity and ability to lead the response seems challenged in a number ofdimensions.Key Themes and ConclusionsInternational and national public health leaders all advise involving communitiesin the HIV/AIDS response. Community mobilization is a means to empowerindividuals 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 arerelied upon in programming, and that source disappears, then programs could benegatively affected. The challenge is how to support community mobilizationwithout upsetting the balance between supporters and initiators/leaders of amovement.   33  
  34. 34. Communities are Taking an Active Role in the HIV ResponseOne common theme in the literature is that communities are taking an active rolein providing HIV services. Communities are knowledgeable about what servicesneed to be implemented and can accurately project what should beaccomplished in the future. Communities are providing a wide range of muchneeded services. There are both informal and formal responses at thecommunity level. The informal responses are frequently led by individuals whosaw a need in the community and acted to meet that need. These individualsoften receive little or no external support. Community organizations or groupsalso respond by addressing a local need, but also received little or no externalsupport. Faith-based organizations (FBOs) and groups for example, have theability to reach a large portion of underserved populations based on theirextensive networks in communities.Civil Society Organization are Filling an Important Gap in HIV ServicesThere are also numerous civil society organizations at the community, district ornational level that provide a number of much needed services. Birdsall and Kelly(2005) note how community organizations are often providing certain servicesthat government is not. One example is in interventions targeting orphans andvulnerable children (OVC). Only 13% of government institutions areimplementing 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 oforganizations but are smaller-scale and not as largely funded compared tonational- or international-non-governmental organizations yet effectiveprogramming is being implemented. For example, Yadav describes how eightcommunity-based organizations improved the quality of life and improved hopewithin PLHIV in those communities by providing much needed care and supportservices. Arulogun also recommends that the success of programs (specificallyPMTCT) hinges on the community, and that community mobilization is key toimprove awareness and utilization of services. Schwartlander et al recommendthat these community-based responses be strengthened as a means to reachuniversal access in a sustainable, culturally appropriate and cost-effectivemanner.Common Questions that Emerge from the LiteratureThe common questions that emerge from the literature include: • What is needed to implement programs to scale, with an intensity and quality necessary to ensure universal access to prevention, treatment, care and support services? • How can national, district and community leadership and coordination be strengthened? • How can funding be more equitable in supporting a wide range of organizations so the response will be community-lead?   34  
  35. 35. • What is needed to resolve the paradox between service delivery and advocacy among civil society organizations in the scale-up of HIV services? • How can people living with HIV be more involved in the HIV response? • How can cultural, structural, environmental and social constraints be addressed in programs?  What is needed to implement programs to scale, with an intensity andquality necessary to ensure universal access to prevention, treatment, careand support services?Programs are currently not being implemented to the scale, intensity, and qualitynecessary to achieve universal access. Evidence-based programs need to beimplemented and continually measured. Many programs are not evidence basedand vary in quality. Even when there are national guidelines, it does notnecessarily mean that they are being implemented uniformly across servicedelivery sites (Sarker, 2009). If effective programs are being implemented, theyare not available to a large portion of the national population. Rural and keypopulations are often underserved. In addition, interventions are often specific tocertain domains (e.g. prevention or treatment), and do not cover the wide rangeof services that would constitute a comprehensive HIV/AIDS program in acommunity.To achieve universal access, infrastructure and human resource constraints mustbe addressed throughout the six programmatic areas. As in male circumcision,the Kenyan example amplifies how the current state of health facilities is notconducive to providing quality services and should be improved (Herman-Roloffet al, 2011). Human resources not only in numbers, but also in capacity, requireaugmentation. A body of skilled health care workers and behavioral scientistsneed 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 humanresource gap but these individuals also require support in terms of capacity,resources and funds. Olang’o, Nyamongo, & Aagaard-Hansen’s projectdemonstrates how attrition of volunteers can be low if not given the supportsnecessary to do a quality job.How can national, district and community leadership and coordination bestrengthened?Leadership and coordination at the national, district and local levels are essentialfor an effective response. There are often National HIV/AIDS Strategies incountries but the actualization of those strategies requires leadership,coordination, and a system to support it. UNAIDS (2007) notes that lack ofleadership and consensus of key issues at the national level often restrictprograms. The volume of different stakeholders that are involved in theHIV/AIDS response can be overwhelming and challenge consensus as well.   35  

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