Handout Case Study for Care and Support Linkages and Referrals.
This case study is adapted from:
Merkel, S. et al. 2008. Making Comprehensive Care for HIV a Reality in African Urban Slums. Baltimore: Jhpiego
Among many challenges, slum dwellers suffer from inadequate healthservices, unhealthy lifestyles, unstable social structures, perpetualinsecurity and neglect; HIV/AIDS has become an added burden. Toaddress these concerns, Jhpiego instituted an HIV comprehensive care program in two slum areas ofNairobi, Korogocho and Viwandani. By employing the Performance andQuality Improvement (PQI) process—a non-proscriptive self-assessmentthat enables health providers and communities to identify gaps in needs,and to plan to fill those gaps—providers and communities were drawntogether to identify challenges and work together to improve access tocomprehensive care for HIV/AIDS. By supporting the communities’ needsand plans for improvement, Jhpiego has fundamentally improved healthcare for many slum residents.
One element of this program involved improved community linkages to HIV care and other resources. This was done by a) strengthening the capacity of community health workers (CHWs) tocreate a continuum of care that extends beyond the visits of PLWH to
the health clinic; b) engaging facility-based health care workers, CHWsand community members, including PLHIV, in joint meetings andtrainings; c) distributing community-created and -owned HIV care andsupport maps and directories; d) forming Village Health Committees,composed of PLHIV, other community members, facility-basedproviders and government officials; and e) creating plans to ensure thatComprehensive Care Centers (CCCs) continue the PQI process bylistening to the needs of PLWH in their communities and responding tothose needs.
In addition, Jhpiego strengthened the capacity of facility-based health providersto deliver higher-quality HIV services to slum-dwellingclients; increased community awareness of HIV and support forHIV-affected individuals; empowered PLWH and their families with knowledge ofself-care and care-seeking best practices, as well as the fullrange of resources available to them; and created strong positive linkages between the health facilities
and the communitymembers.
Any effort to establish or improve comprehensive care for HIV in urbanslums must address three dimensions of interventions: the health facility, thecommunity and the linkage between them. When these dimensions are notaddressed together in an appropriate manner, this prevents PLWH fromaccessing high-quality services. Such impediments exist at both the facilityand community levels. Many public health programs seek to improve health
and health care by addressing facility-level challenges at the facilities and/oraddressing community-level challenges within communities. Analyzedseparately, both facilities and communities face formidable and uniquechallenges to ensuring access to quality health care services for PLWH. Inthe slums, however, pursuing a “vertical” strategy is not enough. Bothfacility-based health care workers and community residents bring a well-established
(and in some cases, well-founded) reluctance to workingtogether to improve the health services. Facility-based providers are afraidof slum residents, or feel superior to them, and slum residents are afraid ofhealth care providers, or feel antagonistic toward them. Therefore, toeffectively improve the health of PLWH in the slums, community members
and health facility workers must work together to collectively understandand address the needs of PLWH.
The CCC model that Jhpiego developed under this funding is based on astrong and resilient network of well-linked services in which referral sitesare known both by communities and health care workers, and referrals areeasy for health care providers to make. The philosophy of referralsacknowledges that, while not every service may be available under oneroof, local support exists for clients and their families to receive theservices they need. The high population density and relatively smallgeographic area of slums provide a unique opportunity to provide manyservices in separate locations that are all linked by a referral directory.
Apart from the PQI process, which in itself provides self-monitoring forthe communities, Jhpiego staff monitored progress in each health facilitythroughout the program period through linkages meetings as well asthrough routine facility and support group visits.
At the request of the health facilities’ staff, linkages meetings were initiatedby Jhpiego and included members of the Village Health Committees, CHWs,relevant community officials and key staff from facilities (usually the serviceproviders from the CCCs and tuberculosis centers). After the initial start-up,however, these meetings were conducted without any Jhpiego supervision orguidance. They continue to this day. The meetings focused on the centraltheme of strengthening the linkages between the health facility and thecommunities they serve. Particular topics included: how to track andencourage defaulters; how to improve adherence; how to coordinatereferrals; and how best to use the community maps and directories of HIVhealth services.In addition, continual technical assistance was provided to the HIV supportgroups. At the request of the groups, Jhpiego staff attended the weeklymeetings. When specific information gaps were identified, Jhpiego staffwould find relevant materials and/or local specialists and return the
following week to share this new information. Records of these meetingsinformed the program on the way forward, and built a strong partnershipamong the communities, health facilities and Jhpiego. Specific informationon the type and numbers of information, education and communication(IEC) materials distributed in these meetings was not kept, however, and infuture programs, Jhpiego will introduce tools that will provide quantitative
information to better track outcome
To improve knowledge-sharing and to better engage communities inhealth, facilities in Korogocho and Viwandani were linked for networkingof ideas and activities. The facilities and the communities were linkedthrough: linkages meetings, trainings, community mapping exercises, andregular education and advocacy outreaches, including the communityhealth days.
At the request of the health facilities’ management, referral cards wereintroduced to formalize the flow of clients from the community to theclinics and vice versa. CHWs,17 members of the Village HealthCommittee, the CCCs and communities met and decided upon the flow ofpaper and defined each group’s responsibilities. Rather than creating a
new format, the MOH referral card format that had been in use in someareas of the country in the past was used as a template. Jhpiego printedmore than 600 forms for distribution among the sites and the CHWs at thattime. Unfortunately, despite the good intentions of all parties, referralcards were of limited success because they were difficult to trace andrecord. The main limitations to the institutionalization of referral cardswas partly due to changes in the attitudes of the CHWs, who believed thatthey should be paid for these referrals; and in the attitudes of the clients,who saw the referrals as evidence that they should receive more care andsupport at home. In fact, the CHWs did not have the capacity to providethat level of home-based care.However, using the community maps and directories, CHWs played a key rolein referring support group members and individuals to community-basedorganizations including: local loan-granting institutions (including KREP andJamii Bora); grant-makinginstitutions (including theGovernment of Kenya’sCommunity Development Fund);child nutrition organizations(including Lea Toto); gender-specific
advocacy and supportgroups (including Kenya Networkof Women with AIDS andMMAAK, and the NairobiWomen’s Hospital for victims ofgender-based violence); legalservices and PLWH rights groups(such as The Oscar Foundation);faith-based organizations; schoolssupporting orphans and OVC; andother NGOs. These organizationswere promoted at every possible opportunity. While referral slips were notintroduced for these services, anecdotal evidence suggests that some PLWHand their families greatly benefited from these referrals
The baseline assessment revealed that community members, particularlythose living with HIV, were unaware of the bigger health picture of theircommunities. To address this information gap, Jhpiego trained 30community members in participatory/community mapping and transactwalks.22 These trained community members then engaged others to cometogether to draw the picture of health in their communities. The resultingmapsincluded both danger spots as well as resources for PLWH. Forexample, the maps show where medical waste is often discarded, placesnotorious for sexual assault, and locations of herbalists known to providesub-par services, but also indicate schools friendly to OVC, and
organizations providing nutritional, spiritual, legal and other services, suchas “PLWH-friendly” toilets. The transact walks then validated the maps.Equally important, however, the mapping and transact walk exercisesprovided a focal point for the groups to discuss health in the communities.Often the discussions about health in the mapping exercises reinforced whatJhpiego had learned in the FGDs during the situational analysis, and
sometimes they provided new insights. In virtually every case, however,these activities generated valuable discussion and allowed participants toidentify ways in which they could act as change agents to improve theoverall health of the community. The Qualitative Outcome Assessmentcommissioned by Jhpiego to evaluate the program showed that these mapswere well used: “The Community Health Workers (CHWs)… said that thedirectories had helped them to refer PLWH and other community membersto the services they need. Referral slips were used… to enable the CHWs torefer PLWH from the community to the clinics and other services.”
To complement these maps, which were posted publicly for easy referenceamong community members, a directory of all health services was alsocreated by community members to provide PLWH and other communitymembers with a centralized resource to identify all available healthservices. Seven hundred copies of this directory were disseminated tocommunity members, regardless of HIV status.
To address the underlying issues of respect, trust and ownership of healthservices that have an impact on health services in the slums, Jhpiegospecifically designed interventions to improve relationships betweenhealth facilities and the communities they serve. These interventionsincluded: a) strengthening the capacity of CHWs to create a continuum ofcare that extends beyond the visits of PLWH to the health clinic; b)engaging facility-based health care workers, CHWs and communitymembers, including PLWH, in joint meetings and trainings; c) assisting inthe formation of Village Health Committees comprising PLWH, other
community members, facility-based providers and government officials;and d) supporting CCC action plans, created with the participation of thecommunities, to ensure that the CCCs continue the PQI process andcontinue to respond to the communities’ needs.
CHWs, lay health outreach volunteers, form thebackbone of Jhpiego’s community-facility linkageefforts in Korogocho and Viwandani. Although thebaseline FGDs showed that some CHWs were inplace before the start of the program, Jhpiegobolstered their capacity to respond to the needs ofPLWH in the community. By going door-to-door,spreading accurate information about healthy living,especially about HIV/AIDS, and following up with PLWH for adherenceto treatment, community members have had increased contact with healthcare workers. This kind of contact not only increases their chances ofreceiving accurate information about health, butalso provides opportunities to ask questions andreceive referrals for facility-based services.As a result of this effort, approximately 50 PLWHfrom the supported 100 intervention householdshave become additional lay CHWs; this has greatlyexpanded the potential impact of CHWs on thecommunity.
To ensure sustainability of the program, all four health facilities targetedfor comprehensive care services created a joint community-facility CCCAction Plan. The Action Plans were created to ensure effectivecommunity-facility linkages as interventions to improve the health of thecommunities move forward.
1