Community Based Organizations in HIV AID
Community Based Organizations in HIV AID
Abstract
The main objective of this review is to provide a preliminary evaluation of the suitability of
community-based organizations (CBOs) to contribute to HIV/AIDS prevention, care/support and
control programs in Ethiopia. In order to put CBOs and programs in the context of HIV transmission
and spread, the role of the Multisectoral HIV/AIDS Strategy (2000-2004) and other government
policies and programs in promoting an environment conducive for these organizations and
initiatives are highlighted. The Ethiopian literature and recent news releases on CBOs were
reviewed and findings examined in the context of recent government policies, community initiatives
and prevailing infrastructure in health programs, socioeconomic and cultural constraints.
Findings show that the Multisectoral HIV/AIDS Strategy, the current Health Policy, and plans to
strengthen the weredas and kebeles facilitate the development of CBOs and programs and
infrastructure through the HIV/AIDS Council, the Ministry of Health and various other
governmental organizations. CBOs studied are at different stages of planning and implementing
preventive and care/support programs but little is known about their progress, operations and
effectiveness due to the recency of most programs and lack of monitoring and evaluation
mechanisms. Although most CBOs are either still in the formative stage or in process of carrying
out HIV/AIDS prevention programs on a limited scale, their self initiative, their knowledge of and
acceptance by the community and their relative cost-effectiveness render them suitable as owners,
advocates and participants in programs. Several organizations and health agents are operating in
integrated primary health and HIV/AIDS prevention programs that have a multi-disease, multi-
organizational and poverty-reduction focus and use appropriate and promising behavioral change
communication methods that may contribute significantly to overcoming social stigma and reduce
HIV exposure risk.
The various CBOs can be partners in HIV/AIDS prevention, patient care/support and control
programs. They may facilitate efforts to curb the spread of HIV through the expansion of awareness
creation and prevention initiatives and also provide patient care and support. The kebele may act as
forum for community initiatives and as a link between the community and outside institutions if
they can overcome bureaucratic intransigence and create an enabling environment. Towards that
objective, CBOs need both internal strengthening of programs and outside support for their
sustainability, and persisting stigma and discrimination against living with HIV/AIDS persons need
to be reduced. Among new strategies, integrated home-based care programs involving people living
with HIV/AIDS (PLWHA), families and neighbors, and poverty alleviation with an integrated
HIV/AIDS component promise to create an enabling environment and promote project ownership
by communities, which facilitate program design, management and effectiveness.
Recommendations are made for further research towards identifying, promoting, strengthening and
upscaling CBOs and programs to the regional and national levels.
1 Department of Epidemiology and Biostatistics, University of California, San Francisco Medical Center, San Francisco,
California, USA
2 U.S. Centers for Disease Control and Prevention (CDC), Addis Ababa Office, Addis Ababa
3 Department of Community Health , Addis University, Addis Ababa, Ethiopia
4 Yirga Alem Hospital, Yirga Alem, Ethiopia
4 Ethiop.J.Health Dev.
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In addition to the emphasis given by the The recent changes in the administrative
government to preventive primary health, major infrastructure as part of the decentralization
national responses to the HIV/AIDS epidemic process is transferring a number of
since 1985 have been the issuance by the responsibilities and fiscal empowerment from
government of the National AIDS Policy in the central and regional governments to the
1998 (14), the establishment of the National weredas and kebeles. This fundamental shift in
HIV/AIDS Council in 2000 (33), in 2002 the the country’s administration gives
National HIV/Prevention and Control Council communities through their elected councils the
and the HIV/AIDS Prevention Office under power to plan, allocate budget and implement
Proclamation 276/2002 (34), and the programs to address their health and other
development, funding and implementation of socio-economic problems. This key process,
the Multisectoral HIV/AIDS Strategic Plan for supported by budget grants, can unlock the
2000-2004 (15). National HIV/AIDS programs energies of communities to face disease and
prior to the current Plan were centrally planned poverty problems at their roots (36). This can
and implemented and did not allow for also strengthen infrastructure and managerial
community participation. capacity at the wereda and kebele levels, where
program needs for resources and staffing will
The objectives of the HIV/AIDS Policy are to be particularly great (37-39). Empowerment of
1) establish effective HIV/AIDS prevention and CBOs can generate much needed local
mitigation strategies to curb the spread of the management and leadership capacity towards
epidemic; 2) promote a broad, multi-sectoral reducing chronic HIV/AIDS manpower
response to HIV/AIDS, including more shortage and giving communities a greater
effective coordination and resource utilization, stake in all phases of the programs. There
by government, NGOs, the private sector, and continues to be great need for well established
communities; 3) encourage government sectors, NGOs to closely collaborate with and assist the
NGOs, the private sector and communities to government in developing operational systems
take measures to alleviate the social and that can effectively transform incoming
economic impact of HIV/AIDS; 4) support a resources into equitable care and prevention, a
proper institutional, home- and community- situation described elsewhere in sub-Saharan
based care and psychological environment for Africa (40).
PLWHA, orphans, and surviving dependents;
Community-based organization in HIV/AIDS prevention and control 7
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Although still in its early stage, the voluntary Community-Based Organizations
counseling and testing (VCT) program, Kebele: The kebele has been involved in
especially in conjunction with antiretroviral building clinics, schools and other social
treatment and if used by both partners and infrastructure. Since the Derg period the kebele
married couples, promises to become a major health services provided, through their
tool in breaking the silence about HIV/AIDS traditional birth attendants (TBAs) and
and reducing both multi-partner sex and community health agents (CHAs), basic health
vertical transmission by strengthening trust in care to mostly poorer people in urban and rural
the health services (41-43). A high unmet areas. The unsatisfactory record of the kebele in
demand for HIV testing was reported by the the area of primary health care in the past, due
Demographic and Health Survey, with 69.4% to lack of community and government support
of respondents in urban and 64.0% in rural (49-51) emphasizes the need to strengthen the
areas willing to be tested (44). The ongoing kebele and its health services. Their
extension of the network of VCT centers and involvement in HIV/AIDS prevention and
HIV laboratories (that includes the involvement patient care activities at the community level,
of the private sector health facilities in VCT including control of harmful traditional
activities) and improvements in the general practices, HIV/AIDS awareness campaigns,
health services can increase coverage of the patient home care and referral to voluntary
wider population at risk of HIV infection once testing and counseling centers, will require the
more counselors can be upgraded, employed mobilization of considerable resources at the
and supported with test kits in the regions and kebele, wereda and regional levels. In Uganda,
in rural areas (41,43). The proposed increase financial resources and audience participation
in coverage of ‘frontline health workers’ from in planning and executing the anti-AIDS
a 1:11,472 health worker/population ratio to campaign were identified as the key elements in
1:7,572 during the Second Five-Year Plan of its success (52). Most kebeles are still
the Health Sector Development Program inadequately prepared for the task of planning
(2000/1-2004/5) of the Ethiopian Ministry of for and developing viable anti-AIDS programs.
Health, together with the planned construction Moreover, while the political function of the
of 176 health centers and 12 district hospitals kebele has strengthened its administrative
(45), the introduction of simple and rapid HIV capabilities and may make it a suitable
tests (46) can make health services and VCT coordinating body, its bureaucratic tendencies
services more accessible to kebeles and other may both delay interventions and memories of
CBOs in rural areas. However, this also human rights abuses under the Derg may fail to
requires improvements in the AIDS patient create an enabling environment in certain
referral system, upgrading of HIV screening communities. According to the National
laboratories and reducing processing time of HIV/AIDS Prevention and Control Council
test results (47). But for any of these and other Secretariat, 3,500 HIV/AIDS Prevention and
technological improvements to reduce mother- Control Councils had been established in 3,500
to-child transmission, community-level changes kebeles in 150 weredas by mid 2002 (53)
in attitudes about HIV/AIDS are required and although their functional status remains to be
women testing positive must be assured of determined.
confidentiality and psycho-social support (48).
Other promising programs and guidelines are Partnerships between kebeles, NGOs, the
discussed below. private sector and government agencies can
8 Ethiop.J.Health Dev.
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provide much-needed technical assistance, workers for educating farmers about HIV/AIDS
information and knowledge through partner prevention and care on market days and during
networks and thus better services, participation, cultural events (59) holds promise if these
best practices (54), and monitoring and activities can be carried out in a culturally
evaluation of patient care and support programs appropriate manner. Even though people come
(55). The United States Government Center of to such gatherings for other purposes, they tend
Disease Control and Prevention HIV/AIDS to be receptive to short, culturally appropriate
program in Ethiopia supported capacity and appealing HIV/AIDS related messages and
Building in all weredas in Addis Ababa by activities. HIV/AIDS preventive information
assisting with streamlining processes, may be presented in the form of mini-media
coordinating funding streams and managing (songs and brief messages through
programs (56). These activities may strengthen loudspeakers), mobile movie films, attractive
community development at the town and kebele pictures and cartoons on flip charts, colorful
levels and thus benefit CBOs and programs pictures in the form of flyers and leaflets, and
focused on HIV/AIDS prevention and mobile displays on open pick-up vehicles. It is
mitigation. also possible to distribute condoms in such
situations and to advocate the benefits of VCT
Limited implementation capacity requires that and to reduce fear of positive test results and
the HIV/AIDS prevention and control program stigma. These and other preventive activities
is built systematically. This has been the should be explored especially in market places,
approach used in the World Bank HIV where peoples’ behavior may contribute to the
Prevention Program (35, 37). It has been spread of HIV/AIDS to rural areas, making
suggested that periodic kebele meetings them appropriate places for delivering IEC
focusing on HIV/AIDS, the establishment of activities. This strategy may be implemented by
focus groups and educational programs for organizing advocacy meetings and planning
highly affected groups, the revival of the kebele sessions for community leaders at the kebele
youth associations with the goal of pursuing and wereda levels (59).
HIV/AIDS programs related to youth, including
free and subsidized distribution of condoms Traditional Birth Attendants: Although
through the kebele structure, and advocacy of traditional birth attendants (TBAs) and
HIV/AIDS issues through the wereda and community health agents (CHAs) usually
kebele elections may be promising front line function through the kebele they are discussed
activities (58). The effectiveness of kebele, here separately to highlight their strengths and
iddir and other CBOs in reaching the people is weaknesses. In Ethiopia, as in other African
also indicated by the high percentage of persons countries where most women deliver at home
(68.2% men and 67.5% women) who named without the assistance of medical services,
community events as their source of trained traditional birth attendants (TTBAs)
knowledge about HIV/AIDS in the national may play a significant role in HIV/AIDS
Demographic and Health Survey. This far prevention by reaching pregnant women not
surpassed those who named radio (51.5% men currently receiving formal antenatal care and by
and 25.3% women), friends and relatives assisting with delivery of primary prevention
(24.8% and 17.8%), health workers (17.5% and services. During the 1998 Health and Nutrition
11.2%) or schools and teachers (14.7% and Survey, 93.4% of the rural and urban women
8.2%) (44). who gave birth during the previous two years
stated that they had delivered at home and
The proposed training of communicators from 45.2% were attended by untrained TBAs, 5.7%
farmers associations and agricultural extension by TTBAs, 29.4% by lay people and only 6.5%
Community-based organization in HIV/AIDS prevention and control 9
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by medical professionals (60). With the greater prevention and care (15). Many of the 11,788
availability of rapid HIV tests in local primary CHAs reported by the Ministry of Health for
health care centers and mobile clinics, trained 1988-89 were inactive (51) and the
birth attendants could be instrumental in employment status of the 3,030 CHAs trained
overseeing the provision and administration of between 1998/89 and 2000/2001 (45,65) is not
antiretroviral drugs to HIV-infected mothers known. Similarly, aside from a peer education
and their newborn infants. They may also pilot project in 1990 in Nazareth, where CHAs
counsel women and their partners in HIV risk trained commercial sex workers in 1990, little
reduction (61). Ethiopian traditional birth is known about the involvement of CHAs in
attendants who are trained and serve with HIV prevention (66). Program deficiencies,
kebele health services, may prevent HIV largely due to lack of remuneration of CHAs by
infection during childbirth, counsel and refer their communities, refresher courses and
patients to hospitals, and control traditional supervision, impeded their functionality in the
harmful practices (15). A national AIDS past and resulted in high turnover (49,67,68).
training campaign directed at upgrading 4,000 CHAs may be particularly effective in teaching
TBAs in 10 regions in the early 1990s men facts about HIV/AIDS and the concept and
permitted the dissemination of educational need for behavioral changes.
messages through informal mutual aid
organizations, including iddir, mehaber and Health Extension Workers: The Ministry of
senbete (62). Unfortunately, this project was Health has been launching a preventive health
not evaluated, constituting a missed opportunity care extension program in October 2002 in 100
to study the important linkage between health kebeles in four states (69). The health extension
institutions and the community. Another 1,700 workers carrying out this program in rural areas
TBAs and CHAs were trained between are a new type of community health worker
1998/1998 and 2000/2001 but nothing is known selected from high school students and
about their activities (45). graduates speaking the local language. They
have been trained in basic primary health care
A study of 30 TBAs in Jimma revealed certain activities (environmental sanitation, domestic
misconceptions about HIV transmission and water supply, latrine construction, solid waste
lack of precautions while working with HIV- disposal, personal hygiene, food safety, family
infected persons which would have to be health, communicable diseases and first aid)
overcome through refresher courses (63). and in HIV/AIDS prevention and care (70). The
Adequate and relevant training of TBAs, with criteria for their employment are: completion of
periodic refresher courses will be necessary all grade 10 or 12, knowledge of the local
the more since the great majority of them are language, and a 50% female quota (71) as well
untrained in modern medical practices (44). as their salaried status promise to increase their
Moreover, the problem of confidentiality in success in providing rural communities with
local health workers during HIV counseling more sustainable basic health services than the
and testing, reported from Cameroon (64) will CHAs. This may be possible especially if the
need to be addressed before TBAs may be used issues of technical support, refresher courses
effectively and safely in prevention and care and supervision are addressed.
programs.
Community-based Reproductive Health
Community Health Agents: Little is known (CBRH) agents: CBRH agents are unpaid
about the current employment situation of CHA volunteers trained and employed within the
front line health workers, who have also been Essential Services for Health in Ethiopia
identified as potential agents in HIV/AIDS (ESHE) Program that was launched by three
10 Ethiop.J.Health Dev.
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NGOs with USAID support in 1995 to initially gender imbalance of CBRH agents, as 77% of
provide contraceptive information, distribute them are men and only 23% women, and all
condoms and oral contraceptives, and refer supervisors are men. While the predominant
patients. More or less similar forms of agents role of males in contraceptive decision making
have also been trained and deployed in the rural requires a strong contraceptive promotion
areas of the country. The German program addressed at males, the contraceptive
Development Cooperation (GTZ) used to and decision making needs of females also need
support such agents in Amhara and the FGAE to be met, preferably by female CBRH agents.
was also involved in training and curriculum Attempts are being made to address the gender
development activities for the same category of imbalance in view of the large female AIDS
agents. They have played a significant role in population and their need for special services
the sharp increase in the number of new (30,72,74).
acceptors of contraceptive services between
1990 and 2001 (27). By late 2001, 17 NGOs The ESHE Program recommended that two
and faith-based organizations employed CBRH NGOs develop CBRH models focused on
agents in providing a relatively high quality meeting unmet demand for reproductive
reproductive health services, family planning services at the community level during the
and STI/HIV/AIDS in 54 weredas and 29 zones second phase of the program. This should
nationwide. CBRH agents were identified as include identifying additional services CBRH
frontline health workers with the strongest agents may provide. Due to their ability to fill
community base. An integrated refresher gaps in primary health services of rural
course, designed for CBRH agents and other communities and in providing accurate
frontline workers to upgrade their PHC skills, statistics needed for project management and
had a positive impact on service delivery. evaluation, it was recommended that CBRH
These periodic training courses cover MCH, agents be employed in more zones and
IES, family planning, STI/HIV/AIDS, TB, communities (30,75).
leprosy and malaria. By addressing the long
neglected periodic training needs and providing Womens’ Associations: The need for active
technical support by specialized NGOs, these women participation in kebele councils and
courses promote longer term employment of committees (including the AIDS committees),
these health workers (30). Knowledge and along with changes in attitudes facilitating
practice levels surrounding family planning, greater female representation is increasingly
antenatal and postnatal attendance and expressed. Similarly, women’s associations can
HIV/AIDS prevention were significantly higher make a significant contribution to and benefit
in the kebeles included in the CBRH project from essential political and economic
than in those not included (72). Similarly, use participation of women. Through these
of family planning services was higher in associations women may be able to gain access
kebeles in Eastern Shewa Zone with current to technical and credit services that can
community-based services than in those which empower them, and to HIV/AIDS services.
had provided these services earlier and those This relationship can also enable women to
without community services (73). Nevertheless, advocate against traditional harmful practices,
high CBRH agent attrition rates remained a including violence against women, and fight for
problem, largely due to their unpaid status, gender equity and the rights of other women.
underscoring the difficulty of effectively By serving on kebele AIDS committees,
employing large numbers of frontline health women can also facilitate the planning and
workers under a limited budget. Another implementation of gender-sensitive patient care
deficiency that needs to be addressed is the and support services and IEC activities,
Community-based organization in HIV/AIDS prevention and control 11
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including the need for STI management in Similarly, a first-ever forum organized by
women (30,76). teenagers aimed at providing a venue to discuss
among peers HIV/AIDS-related problems they
Another women’s association, the Ethiopian face was sponsored by UNICEF in Addis
Women Anti-HIV/AIDS Association, is Ababa. The participating students from 15
reportedly intensifying its efforts in IEC schools are planning to draw up
activities. By 2001 the association had provided recommendations on how to motivate young
HIV/AIDS awareness raising orientation people to avoid risky behavior and to prepare
through house-to-house visits to about 800,000 an action plan and to organize these forums as a
people in Wereda One in Addis Ababa and regular event (83). The art education project
plans to extend its program nation-wide (77). LIFESIGNS, set up to operate through
community-based youth clubs, was started in
Youth Associations: Youth associations and Adwa and Axum towns with the objective of
other youth groups with adequate guidance and peer educating primarily illiterate rural
support can play a major role in IEC activities villagers. By using public mural painting,
and peer education among youth in rural areas, theatre, song, plays and silk screening as well
where most children are out of school. In as public meetings, the groups educate the
addition to their traditional base in the kebele, public about the epidemic, social stigmas and
youth associations may work through religious myths regarding the virus, condom use and
organizations and the schools. Providing HIV testing (84).
technical support to youth organizations in
project conceptualization and design is critical Anti-AIDS clubs and the schools: The
to the success of programs (78). Hard-to-reach education sector has been criticized for not
vulnerable youths who can benefit from peer developing a policy dealing with the impact of
education are street children (79), whose the epidemic, for failing to include HIV/AIDS
numbers are swelled by AIDS orphans. These information and skill training in the curriculum
orphans, which are expected to reach an as well as preparing guidelines and training for
estimated 2.1 million by 2014, are still teachers (85). Youth-oriented programs that
relatively neglected by relatives, neighbors, have proven effective elsewhere in Africa
health services and schools. Recognizing that involved national strategies, not just projects, as
failure to provide necessary assistance would well as supportive communities and parents.
have a severe social and economic impact on They facilitated individual behavior change and
society, at least three indigenous NGOs national leadership, AIDS education in schools
supporting AIDS orphans have been formed in and access to condoms, VCT and employment
Addis Ababa, with branches in other towns (86). The cultural disinclination of Ethiopian
(80,81). While street children and orphans can parents to discuss HIV/AIDS at the family
contribute little to anti-HIV/AIDS efforts level curtails effective discussions of sexuality
beyond peer education, advocacy and and puberty issues with their children (87),
behavioral change facilitated by the use of VCT although parents commonly give advice. The
services, student groups have worked directly utilization of teachers in health education topics
with the Gojjam Anti-Malaria Association and aimed at HIV/AIDS prevention has not been
the Amhara HIV/AIDS Prevention and Control seriously considered although they have been
Secretariat in anti-malaria and anti-HIV/AIDS effective in teaching primary health principles
campaigns. More than 2,000 students spent in pilot projects (88).
their summer vacation educating nearly
600,000 people on the transmission and The Ministry of Education, in collaboration
prevention of HIV/AIDS and malaria (82). with the Ministry of Health, started an in-
12 Ethiop.J.Health Dev.
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school education program in the early 1990s to goals and behaviors of specific characters in the
train students as peer educators with a drama, by distributing health-related materials,
prevention objective. Between 1998/89 and by linking individuals to community services,
2000/01, the Ministry of Health organized and by advocating for other community-level
between 1,034 and 1,340 anti-AIDS clubs changes (93). In this way the nationally
annually (45,65,89). This program has not been broadcast serial drama can become a
evaluated but the popularity and impact of the community project. Nevertheless, although the
anti-AIDS clubs appear to be limited, as design of the drama and the characters were
indicated by the discussions by one of the aimed at both urban and rural consumption,
authors (HK) with one club and students from only about 8% of rural and 57% of urban
two other high schools in Addis Ababa which households had radios in 1998 (94) and
revealed student participation rates between language barriers also limit the impact of this
0.5% and 2.5%. Higher participation rates were program. This suggests that traditional media
reported from three high schools in Gondar, such as folk plays that are culture-specific
where anti-AIDS club members trained as part should be considered for populations speaking
of a university pilot program disseminated languages other than Amharic or Oromiffa, the
information on HIV transmission, sexuality and languages used in the radio serial dramas. One
care of PLWHA to their respective classes (90). of the few community-based or travelling
Major constraints in developing effective anti- entertainment media with an HIV/AIDS agenda
AIDS clubs, especially in rural areas, the low have been circuses organized by NGOs,
national high school enrollment rates (12.5% of including one based in Awassa town (95). At
males and 10.4% of females) (44) and the least one indigenous NGO founded by PLWHA
failure to obtain combined parent, school in Addis Ababa has begun to produce dramas
administration and student involvement and based on the life histories of HIV infected
support. people that are presented locally and
disseminated though newspapers and brochures
Radio Programs, street theater and (96).
traditional plays: Outside the school
environment, one of the few opportunities for Faith-based Organizations: A recent analysis
Ethiopian children and adolescents to learn of the significant decline of both multiple
about HIV/AIDS risk and prevention are partnering by Ugandan adults and HIV
recently developed radio programs and prevalence in Uganda indicates that teaching
occasional street theater or circus. The radio abstinence among youths and monogamy in
program launched in June 2002, featuring two combination with condom use were major
youth-oriented serial dramas based on the factors in this achievement. It has been
successful Sabido method and developed after estimated that the Ugandan prevention model
intensive formative research in Ethiopian urban has the potential for reducing the AIDS rate in
and rural areas is particularly promising (91). Africa's worst stricken countries by 80% (97).
Its interactive nature of the Modeling and The widely advertised government ABC slogan
Reinforcement to Combat HIV (MARCH) (abstinence, be faithful and condoms) to
approach stimulates audiences to respond to the prevent AIDS is a guide of the current
drama, facilitating adoption and reinforcement prevention programs of the Ethiopian Orthodox
of positive behavior change at the community Church, the Islamic Supreme Council and other
level (92). This may be achieved by faith-based organizations. However,
interpersonal and community communication congregations and their leaders remain largely
networks encouraging and reinforcing attention opposed to condom use. Leaders of Christian
to the drama, by endorsing and supporting the and Moslem religious institutions in Ethiopia
Community-based organization in HIV/AIDS prevention and control 13
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are respected and trusted and have large of cultural constraints, also reported by other
numbers of followers, making them particularly studies (103).
suitable to address the silence, stigma,
discrimination and misinformation problems. The fact that only 7% of a representative
Although the Ethiopian religious institutions sample of more than 15,000 men and women
had first initiated prevention activities on a nation-wide asked about the source of their
small scale in the late 1980s, including a information on HIV/AIDS named their
Protestant church which started to implement a religious leaders (44) indicates that faith-based
prevention and control program as early as organizations have not yet captured the demand
1988 (98), it was not until the late 1990s that for their services in rural areas. Mission
most of them developed structured and churches in Ethiopia and elsewhere in sub-
extensive anti-AIDS programs. Sahara Africa also increasingly recognize the
need for their involvement in HIV/AIDS
In 1998 the Ethiopian Orthodox Church began prevention and control (104). According to
to train its 500,000 priests, as well as preachers regional health bureau officials, some
and Sunday school students on HIV/AIDS to missionary churches in SNNPR (in Wolaita
become communicators and counselors Zone) have stated to enforce pre-marital HIV
(99,100). The outcomes of an screening for those who come to them for
interdenominational training program involving marriage ceremonies. Similarly, pre-marital
Orthodox Christian, Catholic, Protestant and HIV tests have been recommended by the
Moslem leaders in HIV/AIDS epidemiology, Woman’s Affairs Office of Guraghe Zone
prevention, counseling, care and support were because of the high migration rate of Guraghe
used to revise training and counseling materials men and an estimated 100,000 HIV infections
and programs (101). The program has been in that zone (105). The Ethiopian Orthodox
considered successful overall, although the Church is increasingly supporting care and
sensitivity of the subjects of HIV transmission support activities by placing AIDS orphans
and condom use and traditions prohibiting with extended families and friends. Traditional
religious leaders to discuss sexuality with their familial care arrangements are being
congregations has impeded its implementation. overburdened due to the sharp increase in the
A pilot prevention study of 71 Orthodox number of orphans so that faith-based,
Christian and Moslem leaders in Jimma Zone government, and charity organizations, as well
reported positive behavioral changes after the as NGOs are increasingly providing orphanages
intervention, including reduced alcohol and financial help (80,106). CDC and USAID
consumption, promiscuity and the use of sharp are assisting several faith-based care and
instruments, more open discussion about support activities and organizations as part of
HIV/AIDS, and greater church and mosque the Global AIDS Program (GAP) under the
attendance. Willingness to discuss this health U.S. government “Life Initiative” program
problem outside their institutions and the (12).
relatively greater acceptance of religious
leaders as anti-AIDS advocates in rural areas Iddir and other mutual assistance
than towns increased their effectiveness in most organizations: Traditional mutual assistance
communities (27,102). The same investigators organizations may provide a model for closer
recommended that intensive prevention health services/community interaction,
programs be developed throughout the country including expansion of rural health insurance
but pointed out the lack of financial support and schemes, sustainable patient care and
training curriculum, as well as the persistence participatory HIV/AIDS prevention. The iddir
insurance scheme in particular promises to
14 Ethiop.J.Health Dev.
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contribute to providing a more enabling expansion of iddir programs would require
environment. They are characterized by high substantial changes in contribution levels,
commitment, participation, constructive dialog payment rates for AIDS cases and probably
and cooperation of members and had been considerable government assistance (112),
engaged in security, development issues and especially in view of the financial crisis many
social issues long before the formation of the iddir are facing as a result of the AIDS
kebele in the 1970s. Most researchers agree that epidemic and the need for HIV/AIDS program
iddir may function as a springboard for social inputs. A recent interview survey among iddir
and political development in Ethiopia. Iddir leaders in Addis Ababa revealed that increasing
cuts across ethnic, religious and occupational mortality due to HIV/AIDS has caused
boundaries and has great potential for the social financial strain on these institutions prompting
and political development of the country (107) them to embark on various activities directed to
and as “a potentially effective institutional the prevention and control of the disease (26).
framework for devising community-based
health insurance as an alternative mechanism The suitability of another common mutual
for health care financing in rural Ethiopia” assistance organization, the equb, an efficient
(108). In Arba Minch, Nazareth and Yirgalem, and flexible savings institution benefiting
between 79% and 98% of 200 randomly particularly women and lower income
selected households in each town were willing households (114), has not been evaluated for
to join a possible iddir-based health insurance partnering with HIV/AIDS stakeholders. Also
scheme (109). Another study by the same the mehaber and debo mutual help associations
authors of 1,000 households randomly selected in rural areas, recommended by the government
in 25 weredas in the former Shewa Region as potential organizations in the fight against
showed that 92% of the respondents reportedly HIV/AIDS (15,26), have not been studied.
participated in iddir and 21% of the iddir give
assistance to household members. The types of Home-based Care: The accelerated increase of
assistance provided included contribution of AIDS cases in Ethiopia, the inadequacy of the
money and food items, transporting of the sick health services system, hospital bed occupancy
to nearby health facilities or to where transport rates of 50% and higher, and difficulties of
is accessible and labor contributions to cover reaching all organizations and informal groups
farm activities of the sick (110). According to taking care of AIDS patients point to the
the 1999/2000 Welfare Monitoring Survey, urgency for national coordination to foster
however, both iddir and equb were relatively patient care and psychosocial support in the
unimportant sources of financial help during home. The few existing home-based care
emergencies in both rural and urban areas services, provided by a wide range of health
(111). The low coverage of the Ethiopian professionals, family members and volunteers
population by private health insurance (less from women and youth groups do not meet
than 0.1%) (112) indicates the great need for expectations and needs (115,116), although the
health care coverage. Some iddir in four situation is improving. Innovative approaches
regions in central and southern Ethiopia help to care and support for AIDS patients and their
their members with transport costs for visits to families within extended family structures and
clinics and to teach about AIDS (26). Iddir social networks have been proven to be useful
leaders, together with teachers and religious in other African countries. Impediments to their
leaders, were highly supportive and willing to wider use include limited participation of male
supervise TB patient care in the home (113), volunteers, high levels of stigma attached to
indicating their possible utilization in home- home-based care, lack of drugs for treatment of
based care of AIDS patients as well. But the opportunistic infections, lack of referral
Community-based organization in HIV/AIDS prevention and control 15
___________________________________________________________________
systems, poverty and lack of financial resources activities but will inevitably increase costs.
and technical support (117). Although not Cost estimates from other African countries
cheap, home-based care tends to be less showing the cost of home care to be in the
expensive than institutional care and may also thousands of dollars for each HIV infection
be appropriate for multiple chronic and prevented or several hundred dollars per DALY
terminal illnesses. Strong extended family ties (disability-adjusted life-year) gained (119) put
and community commitment are major the emphasis on low-cost, community-based
components in viable home-based programs services if home-based programs are to be
that not only include people living with sustainable in Ethiopia. The proposal to train
HIV/AIDS but also orphans and vulnerable community-based reproductive health agents
children. Neighbor women, volunteers from who can in turn train relatives taking care of
faith-based organizations and private people living with AIDS may help to bridge the
organizations, groups of PLWHA, the kebele technical support gap between health
and NGOs support through food and materials professionals and untrained primary care givers
have been major actors in home-based care in (120).
Ethiopia (116).
The Ministry of Health developed guidelines
A study carried out in Ethiopia in the early for community- and home-based care in 1996
1990s, when social stigma of HIV/AIDS was and the introduction of community- and home-
particularly pronounced, revealed a general based care (CHBC) has also been given due
preference for hospitalization of AIDS patients recognition in the HIV/AIDS Policy.
due to the perceived danger to care givers Encouraging psychosocial, economic and
(118). In 2000, about half of all respondents in medical support for people living with
the Demographic and Health Survey, with HIV/AIDS and affected members through
twice as many in urban than rural areas and eliciting established patient's familial and social
more highly educated people, declared their networks are among the strategies specified in
willingness to care for an AIDS afflicted the HIV/AIDS Policy (17). Lack of resources
relative in the home (44). A recent WHO and the personal, socially sensitive nature of the
collaborative study summarizing information support and care giving process in an
on 8 of 20 projects in different communities environment of persisting stigma and
reported that caregivers including physicians, discrimination, fear put an emphasis on family
nurses, neighbors (mostly females), health and volunteer support and care.
assistants, CHAs, TBAs, volunteers from
womens’ and youth groups and family Recently, the MOH has been revising these
members, benefited more than 1,300 AIDS guidelines with the objective of using them as a
cases. Although these activities were well reference for the provision of CHBC at all
received by patients and resulted in decreased levels and its expansion in a manner that
social stigma in the project areas, they fell short permits basic approaches to be kept within the
of meeting basic needs, including food, limits of standard care and support while
material requirements and treatment of maintaining flexibility to suit local conditions.
infections (115). If these deficiencies can be It endeavors to bring care and support to
addressed, this and similar projects described PLWHA who develop signs and symptoms of
below may serve as models for home-based illnesses related to HIV infection, and also
care in Ethiopia. Technical support by addresses the needs of the families affected.
OSSA (Organization for Social Services for Among the areas of the CHBC program in the
AIDS), the health services and NGOs may new guidelines are: family and community
facilitate the training and caring/treatment mobilization, establishing an effective two-way
16 Ethiop.J.Health Dev.
________________________________________________________________________________
referral system at all levels that can contribute directly with the disease but with family and
to the provision of quality patient care, and partner relations (126).
training and orientation of various groups that
would eventually be involved in the CHBC People Living With HIV/AIDS: PLWHA are
implementation process. The management and not only granted legal protection under the new
coordination of the CHBC activities are Ethiopian civil code and more generally under
planned to be carried out through the existing the Universal Declaration of Human Rights
and the yet to be established AIDS Councils all (127) but are also encouraged by the HIV/AIDS
the way from the central to the kebele levels Policy to participate in IEC activities. In
(121,122). Uganda, Senegal and Zambia strong
government leadership, communities and
The key to successful home-based care at the donors encouraged PLWHA to participate in
community and wereda levels may be the HIV/AIDS prevention and in Ethiopia
development of community-initiated care that associations are increasingly being formed,
freely develops in an enabling environment free some of them by PLWHA. Most organizations
of fear and stigma and where PLWHA and have developed programs that include
local organizations can play both care/support HIV/AIDS education and counseling using
and advocacy roles. This can promote a sense testimony, music, drama and songs (128). One
of community ownership of the initiatives to be indigenous NGO founded by PLWHA in Addis
developed and thus increase the likelihood that Ababa has begun to train community members,
they will be designed according to local needs. especially families of PLWHAs and neighbors,
More information is needed about what in home-based care in 5-day training courses
different communities and cultural groups that teach about skin care, wound management,
perceive as appropriate care in order to protective measures and nutrition. This
maximize the benefits of care for AIDS organization has also developed HIV/AIDS
patients. A in-depth study of the meaning of education, counseling and social support
caring and its important elements to the Nuer programs and advocates that PLWHA come
people of western Ethiopia provided valuable forward to be helped. The cultural barrier for
insights into the types of care desired and the HIV-infected women to attend public places
values of this cultural group. Being cared for by could be overcome by holding coffee
a kin and having good relations with the ceremonies, where women can talk freely and
caregiver were considered among the most have begun a peer education project with the
important qualities of care. This study may collaboration of one kebele (96). Experiences
serve as a model for systematically describing from another PLWHA-founded group show
and analyzing differences in value orientations that patients prefer to be cared for by people
among other cultural groups (123). The recently sharing the same problem (129). Another NGO
formed TB clubs and TB mehabers, were in Addis Ababa formed a support group and
instrumental in increasing drug compliance trained care- givers of PLWA and orphans
rates (124,125). Together with greater about HIV transmission and how to take care of
involvement of PLWHA, described below, themselves after they identified the type of
these TB groups indicate a trend toward support needed. This longitudinal program,
disclosure, patient activism and optimizing which has operated in Addis Ababa for 11
patient care within the family setting. The need years, was able to enhance the care for PLWA
for a focus on meeting patient needs within the and their children (23). Still under-served are
home environment is also indicated by studies two particularly vulnerable groups-orphans and
in Brazil showing that by far the most stressful HIV-infected mothers, many of whom lack
events in AIDS patient lives are not associated adequate care, psychosocial support and food,
Community-based organization in HIV/AIDS prevention and control 17
___________________________________________________________________
shelter and clothing (80,129,130). The flight of workers trained in HIV/AIDS prevention
many abandoned orphans to become street provide the community health services. They
children (79) will require that this group of may also serve on kebele AIDS committees and
youths be included with orphans in the support wereda HIV/AIDS councils, interact with other
programs designed to lower the impact of community organizations on prevention and
HIV/AIDS (12). care issues, and provide IEC, VCT family
health and reproductive health services. The
In spite of the growing recognition of the experiences of the first government health
importance of PLWHA in raising awareness of center in Ethiopia providing VCT services
HIV/AIDS and the increasing participation of including anonymous and rapid tests is
PLWHA and the community in preventive and encouraging plans for their replication in other
mitigation activities, many issues remain to be institutions (23).
addressed due to the persisting stigma against
PLWHA and in the absence of operational The priority given by the Second Five-Year
research in Ethiopia. In particular, questions Plan of the Health Sector (16) to disease
about the involvement of PLWHA in the prevention can benefit community-based
delivery of prevention, care and support organizations in several ways. Particularly the
services and its effect on PLWHA and other plan to expand health facilities to under-served
persons affected by HIV/AIDS as well as the and without facilities areas such as pastoralist
role of the community and health services in areas, to upgrade and standardize the staffing,
enhancing care/support activities need to be supplies and services of all levels of the health
answered. Although apparently declining, care system, to implement a “health extension
discrimination continues in the form of package” to prevent HIV/AIDS, TB, STDs, and
ostracizing affected people and forcing them malaria at the village level and to strengthen
off their jobs, contributing to denial, high-risk and expand family health services can bring
behavior and exacerbating social and economic health services closer to under-served
impacts of the epidemic (131). A four-country communities and result in the planned lowering
study (Burkina Faso, Zambia Ecuador and of the front line health worker/population ratio.
India) found that most PLWHA work as Moreover, plans to promote community
volunteers rather than professionals on an participation in health care delivery and IEC
informal basis and that they are often programs can benefit community-based
marginalized within their organizations even HIV/AIDS programs. A critical factor in
though they can be cost-effective if properly effective health manpower development is the
trained. Major barriers to greater PLWHA planned increase in female health workers (16),
involvement were the “judgmental and which has been proven to be difficult for social
paternalistic attitudes” of professional health and cultural reasons in the past (30)
and social workers, gender inequalities, and
lack of institutional will and policies to create Civil Society: Among civil society institutions,
opportunities for them. (132). the Addis Ababa branch of the Ethiopian Red
Cross has recently launched an anti-HIV/AIDS
Community Health Facilities: Local health campaign to complement the national program.
facilities at all levels, from health posts to Young members were assigned to each wereda
regional hospitals, can be both providers of of the city to carry out door-to-door advocacy
VCT services and technical support bases for and counseling services. Since the extension of
CBOs and programs. In rural areas the units of the organizational structure of the Addis Ababa
focus are the health post and the health station, branch of the Red Cross Society permits
where CHAs, TBAs and other primary health campaigns down to the wereda and school
18 Ethiop.J.Health Dev.
________________________________________________________________________________
levels (133), there may be opportunities for Poverty Reduction Programs: Poverty
partnership with kebele-based organizations alleviation holds considerable promise in
and anti-AIDS clubs. HIV/AIDS prevention and control at the
The Ethiopian Public Health Association has community level in Ethiopia due to widespread
recently secured a grant from CDC for a project poverty and its role in promoting risk behavior.
with the goal of improving public health It is becoming increasingly evident that
practice and service delivery in the area of alternative income generating activities and
HIV/AIDS/STI/TB prevention and control in economic self-sufficiency can reduce high-risk
Ethiopia. The activities planned include activities of commercial sex workers and also
coordinating training aimed at enhancing permit many women and children to obtain
technical capacity in the areas of better education and life skills that are essential
HIV/AIDS/STI and TB prevention and control; for socioeconomic progress, promotion of
advocacy and IEC to increase the awareness of preventive behavior and poverty alleviation
the public about these diseases; and facilitating among PLWHAs and their families (138,139).
operational and intervention studies that In this regard, there is a feeling that out-of-
address priority health problems. school youth are engaged in high-risk behaviors
not because of low awareness of the problem
Companies and Institutions: The Second but largely out of desperation due to poverty,
Five-Year Plan of the Health Sector calls for joblessness and lack of vision and hope.
the provision of health education services and Conversely, poverty together with the
technical advice in industries and institutions associated gender inequality, environmental
(16). Work-based reproductive health services degradation, social conflict, lack of
administered through peer promoters have been participation and civil unrest, are both barriers
implemented by the Family Guidance to these goals and factors in fueling the
Association of Ethiopia in association with a HIV/AIDS epidemic (140). An estimated 52%
NGO in a textile factory in Kombolcha town. of Ethiopia is food insecure and mean food
Decrease by half of work days lost to leave intake is 16% below the minimum accepted by
before delivery and maternity due to unwanted the government (31). The fact that the majority
pregnancy, sickness associated with pregnancy of households in famine affected areas are
and delivery, and search for reproductive dependent on food aid and cannot afford any
services reflects the success of providing these type of health care during food crises (141)
services on the job to normally hard-to-reach indicates the urgency for poverty alleviation.
female factory workers (134). Other programs The Ethiopian government has made poverty
implemented by Ethiopian companies and reduction one of its main targets for the coming
institutions include the testing, counseling and years developed a Strategy for Promoting
treatment program of Ethiopian Airlines, the Development and Poverty Reduction (111).
prevention program of the defense forces (37), Two poverty reduction programs in Ethiopia,
the prevention, education, counseling and the Ethiopian Social Rehabilitation and
testing programs of the United Nations World Development Fund (142) and the World Bank-
Food Program’s truck drivers (135) and the and IMF-supported National Poverty Reduction
Confederation of Ethiopian Trade Unions Strategy (143), have a health component.
among factory workers in Wonji and Metahara Whereas the former organization constructed
sugar estates (136), and the awareness raising and equipped health stations and health centers,
project of the Ethiopian Employers’ Federation trained community projects committees and
(137). built capacity of communities and partner
organizations (144), the latter is in the early
stages of planning to support PLWHAs, groups
Community-based organization in HIV/AIDS prevention and control 19
___________________________________________________________________
vulnerable to HIV infection and others affected infections, patient referral to modern health
by the HIV/AIDS epidemic. It is generally services, and home care and management of
agreed that these and other poverty reduction patients (148). Healers enjoy a high social
programs will be most effective if they reduce status in their communities, and the cultural
not only absolute poverty but also address appropriateness of their treatment methods and
vulnerability and powerlessness (144). The materia medica are instrumental in their
reciprocal, interactive effect of HIV/AIDS and popularity to the point where many
poverty is revealed by the impact of AIDS on communities prefer their treatment of AIDS
family welfare, malnutrition and starvation in patients over that by the modern health services
Africa through farm manpower reduction and (149). Through training, many healers have
increased expenditures on patient care and the been able to integrate biomedical concepts into
care of surviving children (145,146). This their traditional healing systems, and it has
effect is particularly pronounced in the areas been suggested that traditional healers may
growing labor-intensive crops such as teff and provide a critical link in the continuum of
enset (147), which are the major staples in the AIDS and STD patient care from hospital to
areas of high population density rural Ethiopia. home (148).