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Past and
ongoing studies
The specific
studies that have been performed within the KARP since its initiation
are presented in Figures 1 and 2. Some of the findings from those studies
are indicated. Many of the studies have focused on investigating the
dynamics, magnitude and spread of HIV infection in Kagera. These studies
have included population-based surveys and sentinel surveillance of
pregnant women in both urban and rural areas in order to monitor HIV-infection
trends and to evaluate community-based interventions. The impact of
AIDS and HIV-infection has been studied in terms of its effects on morbidity
and mortality in the households.
The socio-anthropological studies have focused on the community response
and social impact of AIDS/HIV-infection. Studies on socio-linguistic
aspects of the AIDS epidemic have also been included under this component.
During the two previous 3-year budget periods KARP studies have focused
on determining the trends of HIV-1 infection in areas with varying prevalence
of HIV-1 infection and on changes in norms and attitudes on both individual
and community level to get a deeper understanding of the dynamics and
the possible reasons for the observed trends.
Magnitude and spread of HIV-infection
The KARP started with a region-wide population-based prevalence study
based on a multistage cluster-sampling technique among 2297 adults and
1961 children in 1987. The prevalence of HIV-1 infection was 24.2% in
Bukoba urban, 10.0% in Bukoba rural/Muleba, 4.5% in Karagwe and 0.6%
in the Ngara/Biharamulo districts. The adult population was revisited
and tested in 1989 when 72% of the initially negative (n=1133) had been
followed up thereby forming the basis for the calculation of incidence
rates. This follow-up study of the 1987 population was completed in
1989 and indicated an overall incidence of 13.7/1000 person years (pyrs)
at risk with the highest incidence in the urban area (47.5 per 1000
pyrs) and lowest in one of the rural districts at 4.9 per 1000 pyrs.
The age specific incidence was highest in the age group 25-34 years
for males and 15-24 years for females. The study population was revisited
and re-tested once again in 1992-1993 in connection with studies on
morbidity, mortality and HIV discordance among couples and findings
indicated a reduction in prevalence and incidence. In order to evaluate
the validity of sentinel surveillance populations in monitoring trends
of HIV infection in the general population, occasional population-based
cross-sectional studies have been conducted and the findings have shown
that pregnant women attending antenatal clinic form a fairly stable
and representative population for estimating the HIV-1 prevalence trends
of the general population where prevalence is high. Data collection
from medium and low prevalence areas is in progress to allow the assessment
of whether sentinel surveillance among antenatal women also represents
general population prevalence in areas of medium to low HIV prevalence.
Findings from these cross-sectional studies performed in 1993 and 1996
in Bukoba urban, indicated a downward trend of HIV-infection particularly
among young women aged 15-24 years. A similar trend was also observed
in the immediate rural setting (Muleba) were the overall prevalence
was 10.0% in 1987 and 6.8% in 1996 as in the urban setting, the decline
was most remarkable among women aged 15-24 years. Incidence data from
follow-up studies in Bukoba urban conducted in 1996 supported this observation
indicating that there was a downward trend in incidence in the urban
area from 47.5/1000 to 5.6/1000 pyrs. However, due to small numbers
of new infections it was not possible to study the decline in subgroups.
Nevertheless, findings from repeated cross-sectional studies on factors
that might explain the observed trends have shown an increase in condom
use from 22.6% in 1993 to 30.3% in 1996. However, the average number
of reported sexual partners had remained the same. There was also an
indication that females tend to marry at an earlier age and hence probably
could remain at a lower risk within a 'stable' relationship even though
their age at first sexual intercourse had gone down. However, factors
that could explain the declining trends in prevalence were yet to be
confirmed and incidence studies were planned with sufficient power to
be able to analyse changes by subgroups. Thus, during 1998-2000 the
KARP concentrated on estimating trends in prevalence and incidence in
areas of low and medium prevalence of HIV-infection as shown in the
1987 studies, i.e. Karagwe and Muleba districts.
The cross-sectional study in Karagwe district was performed during 1999.
The main aim of this study was to determine the prevalence and factors
associated with the observed trends of HIV-1 infection in the general
population of Karagwe district 12 years after the initial study in 1987,
which showed a prevalence of 4.5%. The study also aimed at establishing
a study base for subsequent follow-up to estimate the incidence of HIV
infection in the district. Results from this study indicated a prevalence
of 2.3% (n=1411) in 1999.
In addition to this population-based study, a sentinel surveillance
study site was established at the Isingiro hospital in Karagwe to determine
the prevalence of HIV infection among pregnant women attending the antenatal
clinic at that hospital aiming at assessing the usefulness of sentinel
surveillance data in low prevalence areas. Consequently, these populations
can reliably be used to monitor trends in the general population without
having to mount population based cross-sectional studies, which have
the limitation of being costly.
Later in 1999 a cross-sectional study was initiated in Ndolage, Muleba
district. This study intended to monitor trends of HIV infection in
terms of prevalence in an area considered to be of medium prevalence
in 1987. The first prevalence study in the area was carried out in 1987
and the second in 1996. The third prevalence study in 1999 provided
yet another prevalence point in a trend line, which together with the
two previous ones would give a more valid estimate of trend than the
two alone. The population studied in 1996 is also being followed up
to provide estimates of incidence of HIV-1 infection in the area. For
these studies, a structured questionnaire including behavioural indicators
was used to investigate factors associated with the observed trend.
Figure 2 summarises the KARP prevalence estimates of HIV-infection in
Kagera from the baseline studies in 1987 and onwards. A thesis describing
and discussing the observed trends together with an analysis of how
well sentinel surveillance of antenatal mothers can capture population
trends was presented in a thesis by one of the KARP collaborating researchers
in 2001.
Figure 2.
Trends of HIV infection in the Kagera Region of Tanzania 1987-2000.
Figure 3 summarised
the sex specific trends of HIV infection during the period 1987 to 2000
in areas of varying magnitude of HIV infection in the Kagera Region.
Figure 3. Sex specific HIV-1 infection
prevalence trends in
areas of varying levels of infection in the kagera region (15-54 years).
Community
response and social impact of HIV-infection
Using socio-anthropological techniques such as participant observation,
tape-recorded focus group discussions, structured and semi-structured
interviews and interviews with opinion leaders as well as key informants
the project has collected data on the social and cultural context of
AIDS and HIV infection in Kagera to allow a rational development of
a culturally sensitive socio-medical intervention against the epidemic.
The analysis so far has resulted in articles and manuscripts regarding
availability and acceptability of interventions, the social and cultural
contexts of HIV/AIDS transmission, changes in the metaphorical expressions
concerning the epidemic and regarding the perceptions of voluntary HIV
counseling and testing in affected communities.
The study of availability and acceptability of interventions was based
on data collected during a 12-month period from the whole region, with
particular emphasis on HIV counseling and testing in one rural community
with no previous experience of HIV/AIDS intervention programs. Several
government institutions and NGOs have been involved in the struggle
to reduce HIV transmission in the region particularly in Bukoba urban
and Bukoba rural districts. In these areas, the key intervention measures
likely to be accepted were health education on HIV transmission, condom
use, voluntary HIV counseling and testing and STD treatment. Levels
of acceptance were different in different parts of the region depending
on differences in culture and religion. It was our conclusion therefore
that the role of religions and religious leaders was crucial to the
success of the interventions.
The study of the social and cultural context of HIV/AIDS transmission
focussed on how political factors (i.e. wars) and poverty facilitated
the rapid transmission of HIV/AIDS during the initial stages of the
epidemic. We also noted that the unequal gender relations that exist
in Kagera played a very decisive role in economics, politics and views
about sexuality. Due to this relation women are in most cases powerless
and have difficulties in negotiating safe sexual practices. We also
observed how belief systems determine sexual meaning and how they interfere
with interventions aimed at controlling the spread of HIV/AIDS in the
region. In our examination of romantic attachments and patterns of sexual
networking, it is evident that due to the situation of poverty, sex
is in some situations becoming a form of reciprocity and exchange for
goods, money or other favours. In brief, our findings on social and
cultural issues suggested that interventions aimed at behavioural change
must be embedded in a very thorough in-depth understanding of societal
norms, values and patterns of social organisation. We also observed
that adolescents who continue to be vulnerable need to have access to
more health education and information about safe sex and that the government's
reluctance to introduce sexuality education among both in- and out-of-school
youth is counterproductive.
Language and oral literary genres were also used in an attempt to understand
people's attitudes and perception of the AIDS pandemic. Focusing on
language use, we selected metaphorical expressions, which were used
to address the AIDS crisis between 1985 and 1995. We could illustrate
how the understanding of the disease passes through various phases and
that the uncertainty, the growing understanding and the different reactions
towards the epidemic was reflected in the metaphors used. The study
of the oral literary genres, particularly oral poetry, also pointed
to the existence of a communication gap between the health education
interventions and those who experience the crisis, i.e. the local population.
A comparison of the language used in oral poetry and that used in the
campaigns against HIV/AIDS indicated a significant difference in conceptualizing
the AIDS epidemic between the people (as projected in their oral poetry)
and the officials (as campaign posters and the media present it). It
was suggested that the gap could be minimized by the use of proper language
and discourses related to AIDS awareness. The data and the findings
from these studies were further analysed and elaborated in a PhD thesis
in literature that was defended at the Leiden University, Netherlands
in June 2001 by one of the collaborating researchers.
A study of the social transmission route of HIV-infection was initiated
as a longitudinal study on sexual networking in a rural district of
Kagera, which in 1987 had a low prevalence of HIV-1 infection, compared
to other districts in the region. However, "modern road junctions"
were identified as potential risk environments because of meetings between
visitors and local females engaged in sexual networking. These junctions
were seen as potential areas where the HIV-1 infection may have found
entry into the local population. The aim of this case study was to explore
how patterns of sexual networking and the existing norm system, in a
defined high-risk environment, interact in the social transmission route
of HIV-1 infection. For this study, field observations, key informant
interviews and focus group discussions were used to collect thematic
narratives, describing the meetings between visitors, sexual net workers
and local villagers. The study also addressed general modes of sexual
behaviour and the surrounding norm systems for analysis of the labeling/stigmatization
processes influencing people's understanding of the HIV/AIDS situation.
The study emphasizes the need for interrupting the social transmission
route at an early stage targeting interventions towards the local risk
environments and focusing on both indirect and direct risk behaviours
such as alcohol abuse and unsafe sex respectively. Measures should also
concentrate on supporting positive norm systems and promoting female
empowerment and the self-reliance of other disadvantaged groups in the
area.
In 1996, a follow-up study on voluntary HIV counseling and testing was
performed by re-visiting a village where the service had been offered
three years earlier. Both quantitative and qualitative methods were
used to explore the changes in societal attitudes, norms and behaviours
and to study the more personal experiences and reactions following the
offer. The study supports measures to increase the opportunity of HIV-testing
in high prevalence areas. However, attention must focus on the importance
of pre-and post-test counseling in order to decrease the worry and anxiety
that accompany HIV testing. The fact that AIDS is still perceived as
a stigmatizing disease, and often kept as secret, implies continued
discussions and improved health education programmes at the village
level in order to influence this negative norm system surrounding the
disease. Our data indicate that such a strategy is likely to produce
a positive change towards safe sex behaviour.
A recent study in Kagera examined socio-cultural and sexual behaviour
changes as possible determinants of the observed declining trend in
Bukoba town. Using in-depth studies, focus group discussions, field
observations and ethnographic assessments to collect data, the study
found significant changes in sexual behaviour, norms, values and customs
that are considered high-risk for HIV transmission. These changes were
also found to be partly due to the severity of the epidemic itself and
the variety of interventions that had been carried out in the area since
1987.
The planned activities for 2001-2003 included situational analysis and
re-mapping of interventions in areas of varying prevalence of HIV-infections,
key-informant interviews with representatives from NGO's working with
HIV/AIDS prevention activities and focus group discussions with community
members about their perceptions of behavioural change. It also included
a study on appropriate entries to sexuality education among youth in
Kagera starting with secondary school pupils and a study about the social
construction of gender as seen through literary works. Field work for
these studies have been carried out mainly in Bukoba urban but also
in Karagwe and Muleba. Part of the material has formed the basis of
a Master of Public Health thesis on the role of NGO's in the observed
decline by one of the members in the research team.
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